Aspie from Maine

Not Just A Fish Story

2012-01-13T21:31:00.001-08:00

Wanting to see if I could tolerate fish after a few years of not having it, I tried a cooking experiment tonight. I do not usually cook or eat fish so it was a new experience (new relative to the last 2-4 years anyway) on both fronts. I attempted to make flounder and crabmeat, a dish my dad has been making for years that I had always liked before I stopped eating fish. Here are my observations on the proccess.

First, I tried to figure out how much olive oil to put in the pan. That was somewhat unclear but I knew I needed enough for it to bubble. I wasn't sure how long to wait until I put the fish in, but when I started coughing from the smoke that was coming from it (not sure why there was smoke) I decided that was hot enough, lol.

It is very hard to know when the flounder is done when you are sauteeing it on a stove. Sure, some of it did turn a nice browned color but the insides didnt seem firm. There is nothing worse than undercooked white fish!! It's slimy and gross. It doesn't flake quite like salmon and so really you have to guess. And in the process of moving it around to try to tell, it fell into pieces quite easily, but they were big pieces so it was okay.

The basil olive oil, basil and thyme I rubbed on the flounder provided a surprisingly pleasant flavor. It was very mild and I coudn't tell I was tasting basil per se, but it tasted good. Rather unflounderlike in a good way. It was mildly crisped in places and was juicy and almost tasted as if I had used butter, which I didn't. Surprisingly good.

I was not expecting to like the crab. It looked rather gross in the package. But I duitifully spooned some into a pan that was warmed with the basil olive oil, dumped some herbs on it (thyme and rosemary, a hint of salt), and used a fork to push it all around for a couple minutes.

I almost forgot about the crab, but I took a forkfull, regarded it warily, and stuck it in my mouth. It was divine. It was much better than the flounder. I am not sure how to describe the flavor, but it was just as good and flavorful as my dad used to make it, without all the 10 alarm spices he likes to put in it. Win-win.

I then attempted to put the crabmeat over the flounder,which was, as I said, mostly in pieces. The combination was quite good, and again much more like my dad's than I had expected it to be, but I had already consumed so much of each ingredient alone that I couldn't eat too much of the combined dish.

And therein may lie the biggest problem with the dish. It's so good - even without butter - that you can't stop eating it. My stomach doesn't take well to large amounts of everything, so that is something I will have to watch. It did not seem to bother my stomach in the way I had feared, but I did have an uncomfortably full feeling. Nothing unbearable per se, just different and something that would require getting used to.
It's six hours later and I still don't feel hungry. That's kind of creepy. I did have some crackers, but not many. I'm usually always hungry. Must have been that 16 grams of protein in the crab...

Things to Consider -

1. This dish was just begging for lemon. Not sure if that would bother my ultra sensitive teeth or not, but it almost seemed a crime to eat it without.

2. The ingredients make a big difference. I don't know why I ever thought I could cook fish in non coastal Oregon.... No offense to people there but I like Maine fish much better! And flounder is MUCH better than sole! Or at least than the sole I got there.

In the last week to 9 days, I have attempted to go into 5 buildings- Onaturals, 2 chocolate shops and Bow St Market in Freeport, and the Market House in Portland, on 3 different days - and attempted to cook a major dish. I say that's pretty good progress on all my goals! Now I need a break from trying new things. =)

The Art of Being Out In the World

2011-12-02T22:57:00.000-08:00

Pictures hopefully to be added later.

A long time ago, I read an article in the NYT "My Turn" column - whatever it's called - about a man with chronic fatigue syndrome (or was it something else?) who loved to surf. Because of his illness, one day (or hour) of surfing would cause him to have to lie in bed for 2 weeks at a time after. But he was so determined
to live life as best he could, that he did it anyway. He considered it more than worth it.

I am reminded of that as I sit here tonight, after having gone to both the Portland Public Library, remodeled 18 months ago, and the year-old Trader Joe's today - for the first time.

My chemical sensitivity makes this a difficult, arduous task but one I've been wanting to try for a while. I just didn't quite expect to do them both at the same day, but yeah.

Ryan came with me as we entered the library. Architecturally and visually very pleasing. It now looks like a modern, big city library (without the institutional feel). Plants, huge windows, lots of benches and artistic touches. Everything arranged neatly and intuitively. Ryan got a library card. I got my fees waived from the last time I had a library card there, 4 years ago. Ha. Librarians very nice. Books too smelly to probably ever make use of it but nice to know it is there.

Walking down Elm St to get to TJs - SO much nicer than walking down Pearl for WF. Brought back so many memories of when I used go to Wild Oats that way. Had a moment of feeling free, independent and happy. Elm shorter than Pearl lol.

Trader Joe's - walked in and thought "This isnt so bad." They didnt change much about the building from when it was WO, so makes sense. Big and open, easy to manuever, but lacking a lot of the stuff - or at least a lot of the varieties and quantities - of things I've found at all the other TJ's I've been to.

Still, the sweets section still was VERY enjoyable to examine.

Got one of their dark choco Belgian bars to try. Rob got lots of snacks for his meeting tomorrow, most of the suggestions provided by me. =)

Knowing that they imported a lot of their employees from other states, I asked my cashier where she was from and she said Wyoming. When I showed her my Montana ID, she got very excited, and VERY enthusiastically told me that Missoula has the biggest smokejumper center in the country. I *love* enthusiastic people. We had a very nice and rather intense discussion for about 3 minutes. She misses Wyoming - no mountains here - by Western standards, anyway.

So, yes, when I got up from my nap, I felt like crap. And spent several minutes convincing myself to get up rather than wallow in my misery. And it is quite possible there still might be more of that. But, I am hoping I can be more like the man who chose to live in the world despite the cost.* Just not quite as extreme as him. And I know today, I took two major steps toward that goal.

*Restrictions and limitations may apply. Coupon only good for one sale per week.

Book Review - "Slip" Won't Easily Slip Out of Your Mind

2011-10-04T20:39:00.000-07:00

"Slip" Won't Easily Slip Out of Your Mind After Reading It

Why did Tanya Savko write her new book, "Slip," published by Kova Publishing?

Savko was frustrated with a lot of the misconceptions that surround autism, especially the statistic that 85% of all marriages where there is a child with autism involved end in divorce. She wanted to show that it really is a far more complicated picture than that - that marriages that involve autism are subject to the same frailties and potential problems that any relationship would be. Autism is only one factor, she says. At the same time, she wanted to write a portrayal of what family life with autism was really like.

And Savko has succeeded. I found "Slip" to be an engaging portrayal of life with autism, as well as a compelling portrait of a failing marriage and subsequent new start in life. Andrew Pavel, already feeling unsatisfied with his life, is shocked when his wife Erica announces that she doesn't love him anymore. Around this same time, their son, Nathan, is diagnosed with autism. Everything is changing around Andrew, and he doesn't know what to do. Eventually, though, Andrew learns that he can not only exist on his own, but thrive, and manages to stumble into a life he is actually happy about. This book will not only teach you a lot about autism, but inspire you as you watch Andrew try to recreate his life into something worth living.

I had the opportunity to interview Tanya about her book, and how closely it matched her life. Here are some of her answers.

1. How much of this is based on your own life?

This book is based largely on my life, but some parts have been fictionalized. I do have a son, Nigel, who has autism and went through the same struggles as Nathan. Nigel's younger brother, Aidan, also has sensory integration issues, like Eileen in the book.

2. Why did you decide to do a fictional account of life with autism instead of a memoir?

Writing a novel presented more of a creative challenge, and I love to create characters. There are a lot of really good memoirs out there about autism, but not as many novels, so I wanted to contribute something to that genre.

3. Nathan has a lot of sensory issues in the book. Can you remember the first time when you were able to figure out why something that seemed to bother your child for no reason was actually a sensory issue?

When he was little, I couldn't figure out why he had so much trouble in crowds. I later figured out that it was the noise that bothered him.

4. How long did it take you to write this book?

It took about 2 years to write, then another two to self-publish.

5. What has your most difficult struggle in your journey with autism been?

Keeping Nigel safe. When he was younger, he would wander off a lot, or bolt when something scared him. I was constantly afraid he'd wander into a parking lot and get hit by a car. Also, being a single parent has been difficult.

6. What are your happiest memories in your memories of raising your kids?

When the 3 of us are home together watching a funny movie we all enjoy, and laughing. This is somewhat of an achievement when autism is involved, due to the difficulty of having joint attention and sharing experiences often found in autism.

7. What do you think are the biggest misconceptions about autism?

That people with autism can't talk, or that they have no desire to communicate. Also, the myth that autistic people don't have empathy, which is not true.

8. If a new parent of an autistic child came to you, what is the first thing you would say to them?

I would tell them that it's going to be okay. That's what I would have wanted to hear. Also, it's important to set up a good support system.

9. If you could look back at your years of special needs parenting, what is the one thing you think you most did right or are most glad of having done?

I am glad we enrolled Nigel in the ABA program. We had him in there 3 years, and he really improved a lot.

Thanks, Tanya, for your time! If any of you readers would like to purchase a copy of Tanya's new book "Slip," which I highly reccommend you do, you can get one at Amazon by clicking this link .

Happy reading!

A Summer to Remember

2011-10-01T20:10:00.000-07:00

I have not the slightest notion what happene when I went to post this entry to my Aspie from Maine blog, but somehow it got poste to a blog I am not even in possession of.

So assuming it still will continue to exist, try this link

http://kategoldfield.blogspot.com/

I only spent like an hour on it....geez

Argh!!!!!!

Parenthood Asperger's Storyline - Must See

2011-09-23T01:14:00.000-07:00

It's past my bedtime, but.

The 2nd episode of Parenthood on NBC. I just watched it. BEST THING I HAVE EVER SEEN ON TV.

And without a doubt the most amazing coverage of Asperger's I have ever seen.

I had tears in my eyes by the end. I have never had tears in my eyes from watching something on TV.

Every storyline was so vivid, so well played out, and so emotional. I got caught up in everyone's stories.

But Max. Oh, Max. When they showed him trying to make friends .... I can't even describe... ptsd here because it brings up so many painful memories of me in the exact same situation.
That scene had so much realism, you just can't even imagine. Then, later on, when they showed him sitting on a table at reccess, reading a book while everyone else played boisterously around him, and he just tuned them out? My entire elementary school experience, condensed in one scene. More flip flops of my heart. I spent every reccess reading a book on the cold, hard concrete by the door in elementary school. That scene could NOT have been any more real.
Fortunately these were only like 30 second scenes so I didn't have time to get too depressed.

But, at the very end,when they show him sitting alone again.And his younger cousin Jabar comes up to him with two or three of his friends,and sit with him. They start peppering him with questions - questions about things he might actually know about. He looks at them for a second, silent. Not saying anything. You're worried for a second he might mess this up, might not respond to them at all. But them he says "Hi, I'm Max Braverman," just as he was taught. And this time, they respond well. And then Max launches into a dialogue about the video game they were asking him about - finally at ease, communicating in his own way.

And then the clencher. Jabar,the younger cousin, says to his friends, "See, I told you, he knows everything! He's like a genius!"

And then my heart swelled up inside of me, and tears came to my eyes. If only. If only everyone with Asperger's could be surrounded by people who sees what they CAN do, and not what they can't. If only they could be surrounded by people who aren't put off by their awkward social skills, but like them for who they are.

I eventually found those people,but it took me a hell of a lot longer than Max, at age 8 or 9 - it took me until the latter half of high school.

And I just think, put together, those were the most moving scenes I have ever seen on TV.
In those three scenes, which probably weren't more than say 4 minutes altogether, they perfectly encapsulated first what Asperger's is, and second, how to interact with someone who has it. What more could you ask for?

If you have not seen it - you must watch it.

Click here to watch it.

The storyline with Adam and Crosby was nothing short of inspiring, and the story line with Julia was gripping - the rejection of the coffee girl was nothing short of a knife in the heart - but it was the storyline with Max that really got me.

I LOVE this show.

Kate

WPOR Concert at the Beach

2011-09-03T23:43:00.001-07:00

The beautiful OOB Pavillion

Tonight I went to the WPOR Concert in the Beach or whatever they're calling it now concert. It was at the Old Orchard Beach Pavillion, which is the best place ever for seeing concerts. All of the comfort of the layout of an indoor theater, outside!

Man, after seeing the Simon an Garfunkel tribute there, which was so quiet you could literally hear a pin drop, it was kind of a little bit of culture shock! S&G was half full, this was packed to the brim. SG no one sang along, you'd sing over the band - this one you couldn't hear yourself over the band, lol. People were so happy, yelling an screaming, clapping an just generally having a goo time.

Lots of WPOR staff around, several police around which makes you wonder what they were expecting, a few concessions. As I had expected, the last couple rows of seats had plenty of empty seats, which is where I wanted to sit anyway. There was not a bad seat in the house.

First guy boring, mostly, except for a rendition of the Beatles' Get Back (Beatles at a country concert? I wasn't expecting that), and a cover version of Rascal Flatts' What Hurts the Most. It might have been unremarkable, except that he had the audience sing every other verse, and I LOVE when they do that. It makes you feel so connected to everyone around you.

2nd act, some American idol guy, felt more like a religious revival meeting than a concert, lol. Nah, it wasn't that bad but this was definitely a guy who put God in a LOT of his songs...and everything else. As introduction to one of his songs, he asked "How many people were raised going to church every week?" or something like it. I am sure that would have gone over REAL well in the South, but I have to admit I was tickled to death when hardly anyone yelled back to say yes. This is Maine, after all. We have standards. =) No offense to religious people, I just don't like it to invade my music any more than it has to.

He was boring, an I was glad when he was over.

Talked to a trio of women in their 70s or 80s who were behind me during intermission. Would have been bored to death waiting otherwise, so I was lucky! One of them said she liked the guy's singing, but why did he have to dress like that? Couldn't he get a nice shirt? lol.

Jason Michael Caroll put on a great show. Took me a few songs to get into it, but then I got pretty much swept away, or as swept away as seems possible these days. I love the feeling, though, of closing your eyes an feeling the emotions of the song sweep through you, pulsate through you, so that nothing else exists in the world but that song.

And I did get that feeling on a few, most notably the first song I knew, "Numbers," so that made me happy. He did a good job alternating between honky tonk party songs that I hate and more pop, catchy or slow songs that I love. So I didn't really have a chance to get bored. He spent a lot of time off the stage in the front row signing the back of people's shirts.... and I tell you, he didnt even miss a beat when he was doing this! I found that rather amazing.

He was high energy, a gifted performer, and great at interacting with the crowd. Even if he did make fun of our "lobstah" ... haha. I found myself genuinely laughing at some of the stuff he said or did, which is not something I'm accustomed to doing. He sang Where I Come From, an Allyssa Lies 2 songs later, so that was good.

Jason Michael Caroll (in green)

Couldn't remember the other song I knew by him till he started singing it - Living Our Love Song. I was like, duh. Great song. Only bad part was it was the last song, quite unexpectedly too. People fleed so fast after that I was left in my seat stunned like, what happened? lol.

Only song he didnt do was Hurry Home. As I was sitting there trying to reconcile with that fact, someone came up to me and asked if I wanted a meet and greet pass. Stunned even further by this, I thanked the girl profusely and stumbled off to the given area, having no idea what I was doing. I waited with a very nice 13 year old girl who I shared my pass with for about half an hour. Asked JMM why he didnt do Hurry Home, he responded in the most pronounced Southern drawl I have ever heard, "I'm sorry, daaaaarling, I wanted to, we just didn't have time for that one." Nice guy. Said a few other things, left. Nice, but weird, end.

Not a bad way to spend a couple hours,though, that's for sure!! So nice to be able to experience a real concert like that in a venue I was actually comfortable in.

Political Activism with Purpose

2011-09-01T23:16:00.001-07:00

Sept 1

Stream of consciousness writing on first day trying to get signatures for the petition to get gay marriage on the state of Maine ballot. Very exciting an meaningful for me, not because I'm gay but I'm a member of other minorities an I sympathize with this issue very much.

As a person with AS, my opportunities for socializing are limited. Being a rather social person at times, though, I welcome the opportunity to interact with other people in ways that feel safe to me. This is a very structured situation with a definite script, so it makes it far more easy than, say, small talk or friendship with any one of these people would have been. I probably talked to more women my age than all the years since college combined today. Usually I go out of my way to avoid them, today I made a beeline for them, they were the only ones who I had a chance of getting to sign, lol. But they were all friendly, so. Having a clipboard does gives you a certain sense of authority and comfort.

Met R at 2, he got someone to sign on his first try, I had 5 or 6 refusals before he showed up, lol. He's a very outgoing person so it was very fun to do this with him (get signatures to put gay marriage on ballot). Monument Sq. we got a few ppl, tommys park by exchange we got the most. Commercial st, all tourists. Biggest lesson in demographics, really only the young ppl were worth asking for the most part, altho R was better than I at getting some older ppl to sign. Most of the older ppl just didnt want to be bothered with a petition, no matter what it was for. Wasn't a single young person (who stopped) an then refused. we were pretty good at figuring out who to ask so our acceptance rate so to speak was pretty high but sometimes took some time to spot that next person who seemed worth asking. (Of course, we did ask older ppl too, they just usually said no).

Interesting moments... when R tried to ask the guy in a lobster costume/mascot on commercial st to sign, I was like "you cant ask him!" then the lobster guy took off his head to tell us he'd already signed, lol.

The guy playing Blackbird by the Beatles on guitar on exchange - love that song.

The woman leaning against the wall on exchange who we asked, and then I realize she was having a hard time writing. thought it was just cus it was an awkward position to write at first, then realized it was something more. her whole body was moving and shaking an she was struggling to write anything at all. I didnt say anything, just held the clipboard down for her, figure maybe its cerebral palsy. then she told us "I have Parkinsons" so that made sense.

It took her a very long time to do it but she managed to sign, an I was impressed by her conviction, courage and dignity. Not to mention persistance! The writing wasnt very ledgible but just ledgible enough, she was worried. "Will it count?" she asked several times. I assured her it would.

Most people were very friendly, an almost every single person who signed thanked me/us for doing this an wished us good luck very sincerely. Ran into one other person also collecting signatures, one person who worked for Equality Maine currently, an one person who used to.

There was a lot of people who had already signed, which is good, and also a lot of people who said they'd love to sign but weren't registered to vote.

Oh, the middle aged guys who always hang out at the hot dog stand by Exchange - 2 of them signed, to our surprise, but it might have been because I knew one of them and he said to them he'd already signed. Still. It was good.

Only 3 ppl out of like 40 responded negatively. They were all after R left, so that might have had something to do with it, lol. It was all fine though.

10 different towns, 10 from Portland, the rest from others. 13 women, 7 men. Going back again next week as long as weather is good! Prob. Wed for farmers mkt.

One thing's for sure, it sure made me love my city. Portland is so beautiful. Been a while since I walked all the way from the ferry terminal up to the Eastland.

Reid State Park

2011-08-18T00:56:00.001-07:00

Lobster shack we went to 3 miles from the beach at Reid State Park

This will be stream of consciousness writing as I am too tired to do anymore.

Well... What a day. Left at 12 with Rob to get the 1210 bus at Walmart. When we got there the farmers market was going on which I'd forgotten about. Much excitement and one whoopie pie for Nate later, I fortunately managed to see the bus when it came and get on it in time. It was only 5 min late instead of the 10-20 I was expecting, but I kept an eye out. Bus ride was short, talked to bus driver. When I got off the bus in Portland the Portland farmer's market was going on! And as it was only about 1230, it was BIG! Woah! 2 farmers markets in 1 day without even trying! I put on my Walkman for a few min, and Martina's new song, which I have been dying to hear on my Walkman while outside , came on , so I crossed the street an sang to it. That put me in a good mood!

Then Ryan came and we wandered through the farmers market, which is far bigger at 1230 then it is at a few min before 2 when its closing time. I ended up getting a surprisingly comfortable looking soft tshirt for $5 (it's smelly though), a choco chip cookie for Marion, an some good looking French fingerling and purple mini potatoes.

Cookie I bought for M at Portland farmer's market

Then we had an unfortunate incident with a bird an his refuse dropping from the sky. Ewww. It was sunny and beautiful, not humid, hot in the sun but fine in the shade. A great day to walk around. We went to the park and Ryan cut my hair while singing funny songs about it! American Pie was playing at the nearby resteraunt speaker so we, ok I, sang along to it. Then Amber wanted me to sing If I had a Hammer, so I happily obliged. Oh ya an Ryan started singing Daydream Believer so I ha to help him finish. =)

After the haircut, we had to hightail it to Whole Foods cus we were behind schedule. I got all my food that I wanted in record time, and after some debate if we had enough time to still go to Reid State Park, we hightailed it over there. Not a bad ride at all. Easy to find. It was stunningly beautiful once we figured out where we should be. Biggest waves I can ever remember seeing on a beach. Lots of rocks to climb on for absolutely stunning views. A lagoon for Nate an Rob to swim in. It's not a good beach for walking, but the waves, wow. Spent 2 hrs there an went to the 5 Islands Lobster Co for dinner. Very cute, small, quaint, picturesque place that was packed to the gills! Left at 8 when the sun went down and drove back. Quite a good day overall I must say! We planned that well. Got some amazing pictures.

Photo essay of beach -

Funny moment from my dad's today

2011-07-14T23:40:00.000-07:00

My mom is visiting from Montana, we went to Popham Beach and to my dad's to swim in the lake today.

Funny moment that I thought just might worth be posting here...

A friend of my dad's made jello shots at the house today. Instantly that little buzzer went off in my head and I remembered the very interesting piece of info I recently learned about jello and figured this was a good time to share it. The funny part was that everyone in the house was properly grossed out to find out that gelatin is made up of ground up animal bones except for my dad. Surprised, he looked at my mom, confirmed to her what I had said in an offhand manner, and said "You didn't know that? I thought everyone knew that, that it was kind of in their store of general information." (And I don't think he was joking.) Score one for the "How To Tell If You're an Aspie (or have Aspie traits) category, lol.

My dad is not by any means diagnosed, but let's just say that I don't think some of the unique similarities I have with him are coincedental.... in many ways we definitely think the same way! Which I like.

Simon and Garfunkel tribute concert

2011-07-06T22:52:00.000-07:00

Last night, I went to a Simon and Garfunkel tribute concert with my friends at Old Orchard Beach, half an hour from here. The venue was beautiful and outdoors, necessary for me. Most of the songs were quite good, including the Boxer and I am a Rock, my favorites. Afterwards, we went to the nearby amusement park to see rides all lit up at night. Here are a few pictures from the night.

My thoughts on it from Facebook, written in a slightly more stream of conscious way

Simon and Garfunkel tribute.... slow at first but ended up very nicely. Venue it was in - absolutely beautiful. Stunningly beautiful, even. Perfect combo of inside and outside amenities. Everyone seemed to enjoy it, and it was nice to go to a concert with them. I am pretty sure we were the only people under 50 there.

One of us got on the shuttle bus there and said he thought he walked into some senior citizen group, lol. Not crowded. Not too hot. Nice to meet another member of our group, R, for the first time. Easy to find and get to. Well organized. Appreciative audience. 2nd half much better than first. Didnt know a lot of songs in the first. Best three songs - America, I am a Rock, and esp. the Boxer. Funny cus I said to Nate and Rob near the end "But they havent done the Boxer" and that was their encore/Grand finale. Beautiful song. It might not have been toe tapping music, but it was pretty and a good group event. Went to OOB (beach/carnival) after. The rides were REALLY neat looking at night. I was dazzled, I havent been there in ages, and never at night. Got many pictures of rides lit up against sky.

The excitement builds

The venue - outside with all the amenities of an inside theater, half a mile from the beach

Beautiful place to see a show

My friends Nate, Rob and myself (other friends who came not pictured)

The ferris wheel sure does look cool lit up at night against the sky!

I love the French influences on OOB. You can almost pretend you're in Quebec when you're only half an hour away!

And that's all for now. Contending with the summer heat and trying to make the best of it. Went to the Strawberry Festival in S. Berwick, saw awesome Beatles tribute concert, and Bath Heritage Days last week. Next up - swimming! I hope =)

To be Needed - is the Sweetest of all

2011-06-29T19:13:00.000-07:00

This may be stream of conscious writing until I may or may not eventually get to something more solid to say... =) (ed note, skip to middle part)

Took the bus into Portland to grocery shop today, which I hadn't done in a month.

The 20 minutes waiting for the bus was iffy, but not too bad. It wasnt too humid fortunately. And I sat on the curb so I didnt have to stand. At 15 min late I starte worrying, but he came at his usual exactly 20 min late on the nose mark. I hadnt seen him in a month, we talked about festivals an I found out he loves the Beatles too. It's too bad he works Saturdays, when most of them are. When I got to Portland, I was so surprised, the farmers market was on! I had completely forgotten it was Wed. In fact I'm gonna have to start going in every Wed to go. Even tho it's only produce an nothing else, its still fun. I was so surprise and happy. R and I walked around for a while.

We saw the woman who usually sells her photos on Exchange St. R decided to buy a picture of elephants he liked, an she gave him a dollar off since she knows us! Her granddaughter gave me a shell necklace she made for free, it was cute. I wished I had somethig for her. We sat on the bench in Mon. Sq for a while and talked . It was such a beautiful, sunny, good air day, to be sitting in Mon Sq an chatting on such a beautiful day felt very good. Then we went to Tommy's Park and R cut my hair. Which feels much better now! Oh, and we saw a cute 18 mo kid there playing with his dad. He gave R a high 5! We also saw someone in a yamaca (sp), very rare for Portland, and a transgender guy in a wheelchair stopped to talk to us, rather, R. There were kids playing hackey sack, men selling hot dogs, and everyone just enjoying the beautiful city.

After my haircut, we met up with another friend and walked down to Whole Foods. A long and involved discussion followed, and I got my groceries, which I ha to rush on cus of the long convo, but it was ok. I got what I needed and stayed under my price limit. I was able to help my friends with something, which made me feel good. Overall, the sunshine and non humidity, the feeling of independence of getting there myself, and the being with friends (and getting groceries myself) made it for a very good day overall. I am glad to have those once in a while!

***********************************************************

(more solid part)

Why am I feeling happy now? I think it was because I was able to help someone. I know it is, in fact. I am so tired of always being the one who needs help. It feels SO GOOD TO BE ABLE TO HELP someone. It makes me feel more complete, like more of a human being. It makes me feel worthy. I love it!

I walked to WF with my friends, let's call them R and B. I am sure I will forget who B is if I use the initial B, but oh well. B started crying when we got there. I was very concerned and wanted to help her, but she couldn't tell me what was wrong. I asked R in private if he knew what was wrong, but he said he couldn't tell me unless B wanted to tell me herself. I accepted that and we walked back to the table. B said to me very shakily "Can I ask your advice on something?" I was honored, floored to be honest, and said Of course. I don't think anyone has ever asked me that before. She then said "Could we go outside?" and I said Sure, just tell me where. I had memories of me asking my stepmom the same exact things, more or less, years ago in just as shaky and uncertain terms, and I was honored and privileged to be the one on the other side for once.

We stepped outside, and, well I should make this vague since it's a blog and all, but she was having relationship problems with her boyfriend, R, who was also with us (although not outside). She was having trouble getting him to tell her some things she needed to know, for lack of better phrasing. I sympathized and reassured and then said (well, first asked for permission to) talk to him. So then I went inside and asked him the questions I wanted to ask him. It took some time to make sure I fully understood his answers, but I did. At this point R wanted B to come back inside, so I went outside, relayed to her what I knew so far, and she came back in.

To make a long story short, by the end of it, after I had helped translate what R wanted to say but couldnt figure out how to say to B, B understood that what had happened was not her fault, which is what she had feared all along. Although she was of course understandably still not pleased at the thing that happened, she was much relieved that she hadn't caused it, and the two had a much better understanding of each other. I also learned some things about B that will help me be a better friend to her, which she needs, so I am glad about that, too. They both thanked me sincerely as they left. It felt SO GOOD to have helped someone in a truly meaningful way. Also, I feel much more comfortable swimming around in people's emotional lives than I do just about any other place, probably because it makes me feel emotionally connected to others, which I struggle with, so that part was good, too. That is of course why I read so many autism blogs and books and so on.

It would be beyond rewarding to be a counselor of some sort, but I'd only have enough in me to do it in a very limited way, and there are too many other factors in the way. But if anyone has a problem they want me to listen to, well, I'm your person, because for some reason I've always found it much easier to listen to others talking about their problems or significant things in their lives than all the other paling by comparison things people talk about.

Man, it felt so good to be needed. It touches that emotional spot in me that is so often barrenly empty and aching, that I try so hard to fill or else not think about. All I want is a good friendship where I can contribute and give as much as my partner, but all too often it seems the balance is shifted way too much in favor of what the other person does for me, due to my many limitations. I try not to think of myself as limited and give what I can - caring, good cheer, smiles, support, companionship, and the occasional chocolate or two. And I think those areall good things and enough for now, but wouldn't I love to make it more equal, like I did today.

He gave me a haircut, and I helped him with his relationship issues. Perfect equals.

May there be many more days like today =)

Kate

The Anti-Romantic Child

2011-06-28T22:11:00.000-07:00

Today, I'm going to do something a little different. I want to tell you about a great book I just read, called "The Anti-Romantic Child," by Priscilla Gilman.

"The Anti-Romantic Child," by Priscilla Gilman, is a joy to read. There are an awful lot of autism memoirs in the field these days, and I have read dozens of them. Gilman's book stands out in that her language and choice of words, as well as her choice of ancedotes to share with us, really bring her son Benj to life. When I read most autism memoirs, I can relate (despite not being a parent myself, but having heard the story many times) to the parent's struggle to understand what autism is and to cope with the autism diagnosis. I enjoy reading about each unique child, and their specific strengths and weaknesses, often comparing them to my own.

But very rarely does a child jump off the pages of a book and have me laughing and smiling and pulling for him as much as I did for Benj in Gilman's book. I was proud of him when he did something right, cheering for him when he was struggling, and awed by his disposition and personality. By the end of the book, I wanted to meet him and witness his joy, passion and exuberance for life personally.

Priscilla Gilman had always envisioned a perfect life with her husband and child, a romantic life of the sort she read about in her childhood fairy tales. And at first, it seemed as if she was going to get it. But when the traits that Gilman and her husband thought were so cute and charming turn out to actually be symptoms of a disorder, a lot of things have to change. Benj is diagnosed with hyperlexia, which carries many of the same symptoms and challenges as an autism spectrum diagnosis (hence the comparison in this review).

Gilman and her family jump into finding ways to help him, and ultimately succeed. But the book is not so much a how to book about "saving" a child from the pathos of a disorder as it is a love song to her child. And a beautiful one at that. Could it be that the story of the anti-romantic child is a romantic one after all?

I enjoyed reading about how the family came together to help Benj, and thought that Gilman did a great job focusing on the positive traits that made Benj unique, while still us giving us a good portrait of how challenging his difficulties are. "The Anti-Romantic Child" shows us how wonderful, quirky and delightful our special needs kids really can be, and shows to the non special needs acquainted world that different doesn't always mean bad. Well worth a read.

Get your copy today on Amazon

Vermont Part 3, Meeting Rachel

2011-06-09T20:33:00.000-07:00

It is more than a little hot in here, but I am continuing on my quest to fully document my journey this weekend.

On Sunday, we left around 11 to go to the farmer's market in Brattleboro, and then meet Rachel, a friend I have known a long time online. She also has Asperger's and writes the blog Journeys with Autism. The farmer's market was lovely. Not much there as it was a special Sunday market and a lot of the vendors couldn't make it. But the ones that could were interesting indeed, and the area they had it in was so very lovely. I got some rugelach for Grandma that she really liked, and some maple candies, for Marion and Nate.

A stand selling maple products.

A beautiful, hand painted sign

We then went to meet Rachel. Her house was easy to find. She has the most amazing and beautiful gardens outside. Lots of wonderful purple flowers. We sat on her front porch and talked a while, and then she let us try the Thumper massager she had.

My friend Rachel

Her beautiful purple and white flowers! I love them!

We were going to do a walk in the Retreat area of the town, but when she mentioned that
it was only a 10 minute walk to New Hampshire from her house, we just had to do it. I love the idea of walking to another state. Rob had just biked to Connecticut that morning (2 miles from my Grandma's house), why not walk to NH?

I just loved being able to see the green mountains everywhere we walked in Brattleboro!

It was a lovely walk through town and over the Conneticut River. After, we sat on the benches by the co-op for a bit, and I also got to see a street musician in tie dye playing the Beatles right outside the co op! That was awesome.

Tie dye guy outside the co-op!

There was a small waterfall right outside the Co op also, and a pavillion with benches to sit on. What a lovely area! All of Brattleboro is beautiful - it's what I thought Burlington would be like, but wasn't. And 10x better than Burlington.

Rachel and I sitting in the pavillion by the co-op

After a very pleasant and enjoyable couple hours with Rachel, Rob and I sat on her porch for a bit to regain energy, and then decided to stop in Amherst on the way back. Well, also at Whole Foods cus I had a hankering for that banana peach mango sorbet, and needed some bottled water. We got crepes in Amherst....me to photograph, him to eat, lol.

My grandparents and I, who were gracious enough to let us stay there for the weekend!

On the way back to Maine on Monday, we stopped in Portsmouth and walked around a little there, too. Pretty city, much nicer in the daylight and spring.

Downtown Portsmouth, New Hampshire

So now we are home, and it is good to be home! But it was a great trip and worth doing. All the factors came together to make it work out. Next, my brothers are coming to visit, and in July, my mom. So this summer shall be an interesting one, it seems.

Also, PS to the weather gods - this heat wave can go away anytime it likes!

Thanks for reading!

Vermont Part 2 - The Strolling of the Heifers

2011-06-07T22:05:00.000-07:00

7am dawned bright and way too early when my alarm clock went off Saturday. I was excited, though, so I didn't mind much and got up without much problem. We set off for the The Strolling of the Heifers parade and festival in Brattleboro, Vermont, an hour north. We got there a little late, and then had a snafu with my new camera (it ran out of batteries the very MINUTE we got to the parade after a 15 minute walk from the car), so we did end up missing most of the parade. But it was fine, because everything in the parade just migrated to the festival anyway. We got my old camera from the car which I had brought just in case so that I could take pictures the rest of the day.

The whole parade and all the parade viewers came together as one and walked together to the festival site. It was a mass of people. There were many, many cows, donkeys, sheep and even a pig to view when we got to the festival.

The tail end of some cows

There were also a potpourri of stands with businesses selling things or promoting themselves. It was kind of laid out in a disorganized manner, and you felt you were going to be literally crushed with people in some parts. So the first part of the festival was not that that great. Fortunately, though, we discovered the majority of the festival, the best part, was at the bottom of the hill, in a much more spacious and organized area.

Once we got to the bottom of the hill - courtesy of golf carts that ran up and down in a loop, a wonderful feature - I felt much more relaxed. The Brattleboro Retreat was a beautiful area. Booths were set up in a big field with a lot more breathing room, in a circular fashion. Lots of eye candy and interesting things.

The trees surrounding the area made for a lovely environment

I thought this building was stunningly beautiful, and kept taking pictures of it.

We walked around the circle, Rob stopping to try various food items and me taking pictures of everything along the way. The booths were much more interesting than the ones at the top of the hill. There was a tent for performers, a big play area for kids, and a giant inflatable ten foot tall cow walking around. There were crafts and cow related things for sale. Of particular interest was the circus arts demonstration. That was pretty amazing to watch!

Circus arts demonstration

There was a rock wall and a giant trampoline, and best of all, free water! I have never been to a festival that had free water before, usually they gorge you on it. Free bottles of Vermont Natural spring water.

The color of this colorful inflatable made for a great contrast with the green trees behind it.

After we had spent 3 or 4 hours at the festival, we were spent, and retired to a bench to figure out what to do next. As it was still relatively early in the day, I asked someone at the information desk if there was a scenic drive of some sort that we could do to continue our stay in Vermont. He suggested we go up Route 9 about 15 miles, where we would get to the top of a mountain and look-out called Mount Hogback. So we did, and it was beautiful! Trees for miles around.

Now I know why they call it the Green Mountain state!

We saw a sign that said "Molly Stark Trail," which was apparently a scenic byway that went all the way from Brattleboro to Bennington! So Rob said "Why don't we go to Bennington?" and we did. The ride was beautiful, and we passed through lots of interesting small towns, and saw lots of trees.

The sign that prompted our adventure to Bennington!

We walked around downtown Bennington a bit. It was pretty small, but had a downtown that you could walk around. Lots of beautiful buildings. We didn't actually know where we were,
in relation to anything else, so we were surprised to find, upon consulting some maps in the car, that we were actually very close to the New York border.

Downtown Bennington

We did end up accidentally crossing the NY border, which was kind of fun as we totally weren't expecting it. All of a sudden we see a "Welcome to NY" sign, ok, wrong direction, ha.

I got the Albany country station, WGNA I think, so I was happy about that.

We then went through the Berkshires to get back to Springfield. What an unexpectedly BEAUTIFUL trail! We went on something called the Mohawk Trail, from Williamsburg to Greenfield. It was very steep and twisty but beautiful. We even got stuck behind a tractor at one point, lol.

I think this was somewhere in the Berkshires, although I don't exactly remember. It very well could have been Bennington, but I don't think it was. Wherever it was, it sure is pretty!

It took 2 hrs to get home but was all worth it. We were gone 9am-8pm , a long but very satisfying day!

Next... Brattleboro Day 2

Vermont/MA, Part 1...Northampton/Hadley

2011-06-07T21:34:00.000-07:00

Northampton, Massachusetts

Well, if I am to write anything at all about this trip, it will have to be in pieces, as there is so much to write. Let's see if I can start somewhere.

Rob and I left for our trip to MA and Vermont at noon on Friday. Stopped at WF to pick up a few things in Portland first. Beautiful day, 60s, sunny, non humid. Made great time , 3 hrs, to the WF in Hadley, MA. Listened to my Hermans Hermits radio CD from WMPG on the way there, which really helped. Weather was just as nice when we got to MA.

The WF (whole foods) in Hadley was much smaller and different than I remembered it. I was very dissapointed by it and very nervous in it at first. I did not want to spend much time in it at all. Their selection of everything was like 1/4 of what our WF has. I am so glad and lucky we have such an amazing WF. I got some banana peach mango sorbet from their gelato place which was quite good, so that part was good. We met my friend Pat sitting on the tables they had outside, which turned out well. We spent an hour with her and it was quite pleasant. An intellectually stimulating, engaging conversation. She also gave me a copy of the book she had written.

Pat and I

From there we went to an ice cream shop called Flayvors, which was on a farm only 2 miles away. They make their own ice cream there, and have cows outside you can pet and take pictures of. You can literally eat the ice cream while petting the cows it came from, and we did.
Rob had the grass (asparagus) flavored one, which he said was actually quite good. I got my picture taken with the cows, which were even better than the ones at the parade.

Ice cream place Me, getting up close and personal with a cow!

Mooo!

From there, it was only about 10 minutes to nearby Northhampton, a bustling, hip and happening college town. Finding parking was quite difficult, but we enjoyed strolling around the downtown.

They've got a quirky sense of humor here.

So much to see. Rob had a goat cheese sandwhich from the Haymarket Cafe that he really liked.

A quirky little cafe where I used to get excellent smoothies.

I took a lot of pictures.

Totally awesome tie dye shop!

We walked around for an hour and then drove the 25 minutes to Longmeadow, where my grandparents live. After chatting with them for a bit, we went to bed at what was for me quite an early hour, as we had to be up at 730 for the cow festival in Vermont the next day.

Not a bad first day at all! More to come.

The Fivefold Path

2011-05-30T01:24:00.000-07:00

The Fivefold Path

I have as usual been obsessing over some very ridiculous things to the point of questioning even what the point was of activities that I enjoy. As usual, I have been over planning to the point of losing the meaning of why I was planning in the first place. So I lied down and thought for a while. Let my thoughts roam free.

At first all I could be was terrified of the void out there, of the big, empty void that this world would be if we didn't attempt to make sense of it in some way - with our routines, with our likes and dislikes, with what we choose to put our passion and energy in. Ah, the way we define the world and our place in it is an interesting game, isn't it? So different for every person. And if I may say so, so infinitely more challenging when your life is limited by any kind of disability and you have more time to think about your life than ways to live it!

But then a few people popped into my head. And they made me smile. And they felt real. And I realized that I felt happy in their presence, even in the face of other problems. So I realized that connections with people, especially certain people, are the first thing that absolutely makes sense to me.

I thought for some more, what else? Nature. Not in all circumstances, but in certain circumstances, being in beautiful spot, especially by the ocean, just makes sense. It bestows an inner joy in you that can't be taken away (well, except by certain weather conditions). It makes you feel whole again.

What else? I wanted dearly to say food, as that would have been, well, almost my entire answer only a couple years ago, but I have had so much trouble with food lately that I couldn't even pick one thing that reliably brought me joy. This saddened me. But then I thought some more and realized I could broaden the category to "momentary sensory joys." Because I am a very sensory person. My mood, sense of being, and sense of place in the world - all affected extremely by my senses. But it is the occasional things - the feel of wind in your hair on a beautiful spring day, the taste of an amazing piece of food that happens to be agreeing with me on any particular day, music, a joke that someone tells that makes me happy, the eye candy and visual and mental stimulation of going someplace new and seeing new, interesting things - these things may be simple and small, but together, they make up something very important in life.

Music - that came next, because music, at least music that I like, has always been able to transport me to the most amazing, wonderful places, for most of my life. The joy of getting lost in a good song on the radio, of connecting with the emotions of a song, of getting swept away - this has always, fortunately, knock on wood, been a constant.

Finally, the sense of joy from writing a good piece that I feel satisfied by - that fills a special place in my heart, even if doesn't happen often enough. And photography - when I remember why I'm doing it - not to get the most pictures or the technically best pictures, but to tell a story that I can use to then connect with other people - that brings me joy too. So creativity, you might say.

Buddhists, if I recall correctly, have their Eightfold Path. So this here will be my Fivefold path. Subject to future moderation if need be.

When I start wanting things I can't have, and being overwhelmed by what I do have - yes, it seems weird to be able to do both at the same time - when I start thinking of material things or comparing myself to what others would do - these, at least for the time being, are the things I need to come back to. Everything else can just fall away because it's not important.

Other things to remember

I need to know that the absence of any of these things is only temporary and means it is leading to the presence of it, as life operates as a kind of pendulum, going back and forth. It would be an error to think that absence was ever permanent, for absence is what makes black black and white white - their very definition lies in what they are in relation to each other.

I also need to remember that all of these things do not have to be present at once, in fact they usually will not be. But at least one either will be or won't be far off. Remember, absence is a sign of good things to come.

So I will try to think of life and my daily life in these terms, and if I can succeed even 50% of the time, my life will be a lot simpler.

Now maybe I can go to bed =)

Less is More, or lessons learned from Cold Stone Creamery

2011-05-22T21:36:00.000-07:00

Last night, as my head was spinning around in circles and more circles, I finally got up and decided to get ready for bed. It was then that I had this insight that I want to share with all of you.

I have been planning a trip to Vermont to the Strolling of the Heifers Festival in Brattleboro, with my friend Rob. When he told me last Thursday that he was interested in traveling somewhere this summer, my brain went onto 150 mph and wouldnt stop for 2 days, researching, imagining and planning all the amazing things we could do.

As a result, I got quite overwhelmed, quite quickly - although I didn't realize it at the time.

I went onto a website for New England festivals, which is where I found this one.
Then I went into a frenzy of planning, not only for this festival but for all of the other many festivals that will be happening in Maine this summer, that my friends and I have already made plans to go to.

There are few things that I love more than festivals, so that is not the problem. But I think it is like when I was a kid and my family would go to amusement parks. I would always unexplainably start crying in the car on the way there. I realize now it is because there was SO MUCH to do and think about, and I wanted to do it all, that I got overexcited.

Now I am trying to remind myself that it is much better to pick 1 or 2 things you want to do and do them well, instead of having your hands in every pie possible.

This reminds me of an analogy, though.

When Cold Stone Creamery was open in Portland, I went very frequently and loved it.
The first several times, I got every topping I possibly could on my ice cream. Why not? They were there. Waffle cones dipped in chocolate? Check. Sprinkles, M&Ms? Check. Hot sauce? Check. And I'm sure the first time I enjoyed it , that I won't deny, but you have to admit you lose a little something in all that hoopla on top... like the ice cream. You can't really taste it with all that stuff on top. And they have REALLY good ice cream. Some of the best I've ever tasted.

Wondering why I wasn't satisfied with my ice cream the next time I ordered it, I decided to try something drastic. I got plain ice cream (Birthday Cake, in fact) with not a single thing on top of it. And you know what? It was wonderful. The flavor and nuances really came out in that ice cream. And I realized, to my utter surprise and shock, that it tasted better than with all the toppings. I realized just because they were there, didn't mean I had to have them all to enjoy the experience.

So from then on, when I went, I would get just a kid's size of my favorite ice cream. On Tuesdays, when it was buy 1 get 1 free, I'd get 2 and put chocolate sauce on 1 to have the full experience and a choice, but other than that, I opted for simple.

Just like Cold Stone, just because Vermont and western Massachussets is *there* doesn't mean I have to explore every inch of it to be happy. This applies to the Maine festivals as well, although I certainly still want to do a good share of them. But I don't *have* to.
I calmed down considerably when I realized this. Moderation is the key in any pursuit.

And now, bring on the strolling of the heifers (June 3-5)! Moo!

http://www.strollingoftheheifers.com/

Stronger

2011-05-14T23:33:00.000-07:00

"I know my heart will never be the same
But I'm telling myself I'll be okay
Even on my weakest days
I get a little bit stronger

Doesn't happen overnight but you turn around
And a month's gone by and you realize you haven't cried
I'm not giving you a hour or a second or another minute longer
I'm busy getting stronger"

- "Stronger," Sara Evans

"If I had a song,
I'd sing it in the morning,
I'd sing it in the evening,
All over this land

I'd sing out danger,
I'd sing out a warning
I'd sing out love between my brothers and my sisters,
All over this land."

- "If I Had a Hammer," Peter, Paul and Mary

Once in a while, in this life, we are treated to gifts, wonderful gifts that restore our faith in our ability to live on this planet. Gifts that bolster us and tell us we're on the right path. No, I'm not talking about anything you can buy in a store. I'm talking about something ever so much more precious- the gift of human connection.

Human connection is tricky at best. Asperger's or not, humans are complicated beings. But I won't deny that Asperger's makes it much harder. That is why I treasure it when I stumble upon a connection with someone else that feels real, genuine and heartfelt. A connection that I don't feel I'm just faking my way through. A conversation where I'm not just struggling to come up with things to say, but instead have SO MANY things to say, as does the other person, that I can barely keep them all in my head - but it doesn't matter, because they keep changing and growing along with what the other person says, so that the conversation evolves in a wholly organic manner, as all good conversations should. A flowing, effortless conversation - something so rare for me that it might as well be put on the endangered species list.

Does this sound odd to non-Aspies? I'm not sure, because I'm not one of them. I wonder if these sorts of conversations are easier for them. I think they must be. It is of course hard to tell how much is truly easy for NTs and how much is just posturing!

But tonight, I had this rare species of a conversation with a friend on Skype. As the best conversations seem to be, it was spontaneous, arising out of the need for me to ask a question on a topic unrelated to the conversation we ended up having. This question ended up reminding me of another topic, which in turn reminded her of something, which reminded me of....And we kept going. And sooner rather than later got into some rather meaty, important topics of a significant emotional and psychological nature, which is my favorite kind of conversation.

I was talking about some unpleasant incidents from my past, but for once, I didn't do it with any signs of anxiety. I didn't do it with desperation in my voice. I didn't have "RESCUE ME!" written all over my face. Needless to say, that made for a better conversation. I can count on one hand, hell maybe one finger, the amount of times I have been able to talk about these topics in a laid back way, however. Just sitting back in my chair, pondering my life with a friend in similar circumstances. I love that version of laid back me. Can she come out and play more often?

My friend told me she thought I was on the right path. She said she thought I was doing everything right, and that I was being really smart and thoughtful about how I chose to do things. She reminded me of how far I had come. And for once, I believed her. I believed her when she said I was doing the right thing. I think we all know how hard it can be to accept positive feedback when we're used to negative.

So, you know what? At least for tonight, I think I'm okay.

Tomorrow, though, may be a different story. But then again, maybe not.

Happy Mother's Day

2011-05-08T22:41:00.000-07:00

A few images from Mother's Day BBQ at my dad's

Happy Mother's Day to all!

Blueberry cream cheese

More at http://www.facebook.com/media/set/?set=a.546935525075.2048825.41400579&l=81426d3929

Living your way into an answer (the case of the cell phone)

2011-04-18T20:56:00.000-07:00

A few months ago, my cell phone broke. It had lasted me about 5 years, so I was sad to see it go. I had known this was coming for a while, though, and luckily had prepared myself. I tried to get a new phone, but due to my chemical sensitivities, that didn't work. I thought about getting a used phone off Ebay, but didn't want to pay money for something I wasn't sure, again, would work with my MCS/chemical sensitivities. My grandfather offered me his used phone, but I wasn't sure I wanted to switch to Verizon, having been on AT&T for so long. In the meantime, I used Skype to make outgoing calls and recieve incoming calls, because for only $7 a month, well, why wouldn't you?

At first I was a little overwhelmed in trying to figure out my options. I kept going back and forth through the merits of each - try another new phone and hope it outgasses quicker? Just buy a used one, like I did 5 years before? Or use my grandfather's, but would I lose anything by switching phone companies?

Since I didn't have to make a decision right away, though, I didn't. I used Skype and thought about it on occassion, never really arriving at a decision. Also, I was waiting for the first new phone I got to be returned to ATT, which took a few weeks.

One night several weeks later, I was checking my email and other sites, and found that my phone had finally been returned. This spurred a whole new round of speculation. I realized, though, with a flash of inspiration, that Skype worked so well for me (hands free phone, gotta love it) that I didn't even want to sign a 2 year contract with ATT to get a fancy new phone whose features I didn't really need and which I didn't want to wait to outgas. I wasn't going to pay for a used phone that may or may not work. In fact, I didn't even WANT to use a cell phone anymore, except for emergency use. So, then, it made sense just to use my grandfather's phone and get a very small plan on Verizon (they have no contract pay as you go plans) and use it for emergencies.

Now, this may seem an obvious course of action and perhaps even somewhat boring, but it is significant for one reason. It is the only time in my memory that I have ever been able to just "let something go" and let it get solved in due time. I am usually very bad with uncertainty of any kind and want to have a solution to any problem the moment it comes up.

"Have patience with everything unresolved in your heart and to try to love the questions themselves as if they were locked rooms or books written in a very foreign language. Don't search for the answers, which could not be given to you now, because you would not be able to live them. And the point is to live everything. Live the questions now. Perhaps then, someday far in the future, you will gradually, without even noticing it, live your way into the answer." — R.M. Rilke

I have always loved this quote, but never been able to quite follow it.

With the case of my phone, I did though - and I did live my way into an answer.

I realize from this that there is some value in the "wait and see" approach, and hope that I can use this approach more in the future to better deal with uncertainty, at least to some degree.

Sometimes the smallest things in life can yield the most interesting insights, and you have to hold on to every one with all you've got.

Week with my friend

2011-03-13T01:11:00.000-08:00

Bo and Betty, friends forever (Awwwww)

So, this past week, from Tuesday to Friday, I was at my dad's with my friend E. I was nervous about doing something that would break my schedule/routine so much, as I am usually rather attached to my routine, but I wanted to spend time with E. At first I tried to plan what we would do, but it soon became clear that we were both too tired to do much of anything, so we sat on the couch and talked a lot. And that turned out to be the best thing we could possibly do, because it is there in those conversations that you didn't expect to have, that you didn't plan on, that the best and truest moments of connection happen. Those few minutes when I can let my guard down and just talk to someone without analyzing what I'm saying, without thinking of what I'm going to do next and a hundred other things at once....well, they're a lot more meaningful.

So we sat and talked a lot, and for once, I was okay with "just hanging out." That's an interesting principle, because it took me a LONG time to get to this point. I still would only do it with people I knew very well, of course, but... the first few times I went to my dad's after moving here for more than a few hours I was almost terrified because I simply didn't know what I would be doing with my time, and I am a person who needs every minute planned and occupied, even if it's only with TV, lest my brain become overactive and take me hostage lol.

But as I started enjoying being around my parents more, and especially as I finally gained the ability to watch TV, something so many take for granted, I became much more relaxed about it, knowing that there would be at least SOMETHING to do to fill the time.

But for whatever reason, probably the good and relaxing influence of E, I felt more flexible and go with the flow-ish than I ever had this time, and that was a very nice feeling. The first day I was a bit nervous about all the time to fill but the subsequent days I was fine.

I took a nice but icy walk one day...half of it was great, the other not so much lol. Took some cute animal pictures, watched a lot of Third Rock from the Sun, had a lot of heart to heart conversations with E, Skyped with friends online who I introduced to to E and to my dad, made a steak dinner for E and I one night which was fun, mostly because it was actually edible!, and enjoyed the feeling of actually being able to, at least in part, take care of someone else, while at the same time they took care of me. A very nice mutal relationship, of which I have not often experienced. She knew my needs without having to ask and helped me out with things I needed without me asking, and I knew her needs (or at least most of them), and helped her out with them as well - I love that - what more could you ask from a relationship with another person (friendship). It felt so good not to have to feel guilty about asking for help in some areas, or even to have to ask at all - wow! And it felt good so good to be able to help another person. If only all relationships with other people could be like this, right?

I helped my dad out with the trivia he was playing and got to spend some time with him, which was good. It was good to see him and my stepmom without being too rushed, which I usually am when I go over there.

All that considered, it also felt very good when I got back on Friday; there are few things I like more than the peace and feeling of stability that my routine here gives me. Marion was very happy to see me, and Dennis helped me set up the DVD player (all the way from Florida), so Marion and I watched Marley and Me together. I for once had a feeling of looking forward to things, a brief and fleeting feeling but a feeling nonetheless.

So I'm still a little bit disconbobulated, getting used to being back, but I think overall it went quite well. I do feel bad for E who is dealing with quite a lot of health problems, related to MCS, Lyme, and EMF sensitivity, but I hope that despite these difficulties I gave her some moments of comfort and enjoyment this week.

And now, the beat goes on.

I heart you. Even if sometimes I have a beef with you.

Birthday Week

2011-02-27T00:53:00.000-08:00

At 3pm today, my friends and I attempted to meet for my planned birthday celebration. The weather, however, didn't want to cooperate, having dumped a foot of fresh snow on the hiking trail we planned to go on yesterday. Not only that, but we were met with a fierce wind off the ocean as soon as we stepped out of the car. Having had my share of dealing with fierce winds on Thursday, I was not amused. We nixed the trail but did end walking around the Mackworth campus, which was far bigger and more interesting than I had realized. After about a 20 minute circuit, we were back at the car, and elected to go straight to Whole Foods, realizing that anywhere else in Portland would just be ten times as cold and windy.

I opened a gift that an online friend had sent me, which turned out to be maple candy. We played trivia and 20 Questions with famous people, with Rob getting all the math questions and Nate getting all the TV and movie questions. Besides eating them, we also did an experiment with the maple candies to see how long it would take one to dissolve one in water. It was not as quick as I thought...took about half an hour to be three quarters dissolved.

Some small balloons, which my stepmom had found and blown up during my birthday dinner with her and my dad last week, provided some more entertainment in the form of fun with static electricity - sticking them on each other and taking pictures. :) (My stepmom said that they would not last a week but apparently the laws of physics, or birthdays, defied her.)

Since we had an excess of maple candies after everyone had had their fill, I decided to try to give them out to the Whole Foods employees. Two of them seemed genuinely excited to have them, which made me happy; one agreed to try them; and the rest declined. I did feel slightly embarassed asking, but I am a firm proponent of the "random acts of kindness" theory and like to try to make people's days better when I can, which is not as often as I would like.

It was a very nice birthday, or belated birthday, as I felt very appreciated. This is the best part of having a birthday if done right! :) Rob paid for my dinner, Nate got me some Jodi Picoult books I wanted at Borders (yay!), Janine got me a gluten and dairy free brownie, and Amber gave me a lovely and very cute framed photo that she had done. She makes animals and different things out of vegetables and does it well. In this portrait, a dog is catching a frisbee, only the frisbee is a rice cracker! Ha! She knows me too well :)

****

On Thursday, I went into town on the bus because I needed something for dinner, seeing as the Irish have taken all the brisket (for St Pattys day). This was my third time on the bus. It was sunny and warm on the walk to the bus stop; I had everything unzipped. The walk was quite pleasant. The bus was 15 minutes late, which seems to be the average. Tolerable in nice weather but not in bad weather, I am sure.

I was the only person on, but we picked up a few people at Shaw's and Walmart. A guy about my age with Tourette's came on about halfway through. Never having met someone with
Tourette's, I found this very interesting, and after thinking about it, I decided to start a conversation with him. I felt bad for him, thinking how often he must be treated badly and stared at, and wanted him to have a positive interaction with the public. I also just wanted to talk to him. He was very friendly, and had a nice smile. We talked about the weather and the library a bit.

The bus went okay, I did better than usual on it, knock on wood.

In Portland, it was freezing, as the wind was coming off the ocean and creating Artic conditions. So much for a nice day. I asked Ryan if he would cut my hair as I was a bit desperate, and he said yes. We found a bench by Tommy's Park in the Old Port and I told him to go at it, lol. We all think he did quite a good job, especially considering the circumstances, and since he had never cut hair before!

Fun with balloons and my lovely haircut!

On Facebook, I got 87 happy birthday wishes. 87! I did not know I knew 87 people that would take the time to wish me HB. :)

Last weekend, my parents invited me over for a birthday dinner, and we had tenderloin steak. My relatives Steve and Gail were there also, which was nice.

So all in all it has been a good birthday week, and it is nice to feel appreciated and connected to others!

Community at work

2011-02-06T20:28:00.000-08:00

I saw him standing at the bus stop, and I was relieved. I wouldn't have to wait for the bus alone. Not only that, but I could now be pretty sure this actually *was* the bus stop.

"Is this the bus stop?" I asked when I got close enough, a pretty natural conversation opener, I figured, for a bus stop. "I think so," he said. "Any place with a yellow sign by it is a pretty good bet."

"I made good time here. 12 minutes. I figured I should walk here instead of waiting at one of the secondary stops."
"It took me 30 or 40 minutes, I came from that direction," he said, pointing to the street at the left of Town Landing, a small convenience store in front of us.
"Oh, by Wildwood?" I said, instantly recognizing the direction he was pointing in.
"Yeah."
"Do you live there?"
"Yeah."

"That's where I grew up! What street are you on?"
He named the street I had grown up on.

With blonde hair and an easy smile, whoever this guy was, he made a great conversationalist. Good conversationalists, I have to say, are few and far between. A person has to have a certain kind of energy, a certain kind of vibe, as well as natural enthusiasm and curiousity for all aspects of life, to make a truly good conversationalist. These are the people that you can easily fall into a conversation with about just about anything minutes after meeting them, because you both view the world in somewhat similar terms.

The desire to learn more about other people; being nonjudgemental; open-minded; and curious about the world; the desire to learn new things about the world. With these qualities, a conversation can build quite easily on just about anything. You build off of the enthusiasm and the joy of the other person, delighting in shared communication and shared connection. So few people are curious about what their neighbors' lives are like, about who makes up their community. They stay insulated in their own lives. It is the people that want to build and experience community that I am naturally drawn to.

The bus is 20 minutes late. If not for him, I would have started freaking out about missing it 15 minutes ago. Luckily, engrossed in conversation, I hardly notice.

I get on the bus, and he follows. I say hi to the bus driver, who I recognize from years ago when I used to ride the buses regularly. It is nice to see a familiar face. I sit across from the blonde haired guy, hoping to continue our conversation. We do.

"So," I say, "you said you were in construction, but it wasn't for you. What do you do now?"
"I wash dishes," he says, with only a trace of embarassment.
"Good for you!" says one of the passengers near us. "At least you have a job!"
He, the other man and the woman in between them discuss the various ins and outs of washing dishes at different restaurants for several minutes. I love it. Community in the making.

The bus arrives at Walmart, and an onslaught of people get on. The three people in the front decide they should move to the back in case anyone getting on has trouble with stairs and can't make it to the back. I don't like sitting in the back, but I follow them anyway, figuring the value of continuing this conversation will outweigh any additional discomfort from being in the back. It does.

I sit next to the guy from the bus stop. We talk about whatever comes to mind. His sister's desire to become a winemaker spurs a story from me about my uncle, who is a winemaker. My
declaration that I write freelance e-books for money elicits a truly impressed sounding "Wow!" from him. I tell him about some of my favorite places in Portland. He tells me about the place he is from.

Does this sound unremarkable to you? It very well might. For the millions of people who move around the world with ease, and rely on buses to get where they need to go; who move around easily in the social world with their friends and acquaintances, this story may sound quite unremarkable.

But for someone with chemical sensitivities and and autism, who hasn't ridden a bus more than once in several years because of problems with perfumes and fragrances on buses? For someone who the mere idea of being stuck on a bus could induce a powerful emotional and physical meltdown? Then, this story becomes remarkable.

Because, for thirty minutes, it felt like I had a piece of myself back. And, you know, I've been searching for those missing pieces for three years now, and it's not very often I find one, despite all my efforts. The bus was full. There is no doubt that I would have freaked out and fell prey to both the physical and emotional sensations of such a situation had I not had something, or someone, else so enjoyable to focus on.

But he had my full attention. He had that magnetic pull that certain people who wear their emotions and humanity on their sleeve do. A feeling of connectedness.

On a similar note, several years ago, there was an article in the New York Times about an autism therapy called "floortime" that I have never forgotten.

Basically, it discussed different methods to keep autistic kids and adults engaged with the outside world to increase their ability to function in it. This quote stuck with me.

"If we can keep Ty engaged with us, it means that he is harnessing and organizing his energies in order to interact,” Nelson told me later. “By keeping him connected, we won’t let him be kidnapped by random fragmented thoughts. If you aren’t engaged with other people, then you are completely at the mercy of your own regulatory system. Think about a
situation where you were overcome with distress and how being able to tell someone helped you avoid becoming uncontrollably distraught.” (Melissa Fay Greene, New York Times, 17 October 2008)

What is this if not a perfect illustration of that quote? Life is about connection with other people. Some people have more trouble with it than others. But I have never stopped believing that if I could find a way to make it happen, that it would help me enormously in many different parts of my life.

Sitting there in the middle of that bus ride, looking around at all the people around me, the familiar shape of the bus, people chatting animatedly on all sides of me, I got a glimpse of what my life used to be like. I was aware of some mildly unpleasant smells around me, but I could tune them out, because of my conversation. And having that ability to be on the bus without it driving me insane, like I used to be able to do - that felt good.

Community at work. A person cannot live in isolation without serious side effects. Community at work.

New Year's 2010: Friends, Family and Food

2011-01-02T01:16:00.000-08:00

New Year's Eve 2010. I had 5 friends over to my dad's house, and my dad and stepmom had another 5 or 6. I think I counted 17 in all. The evening went by so fast. I got there at 4, took a short walk and then awaited the arrival of others, who mostly came between 6:30 and 7. We played a game where I had come up with the top 20 events of 2010, and had people guess what month they took place in. 3 points for the exact month, 2 for 1 month on either side, 1 for closest guess. It sparked some fun conversation and memories, and in the end, Rob creamed everyone with his recall (although to be fair, he'd taken a Sporcle quiz on 2010 events before arriving), while Nate came in second.

Nate brought six different flavors of whoopie pies, and Janine three chocolate ones, so I had fun cutting and arranging them, then taking pictures of them. Nobody really ate them till the end, but I did see about half gone, so that's good.

There was chocolate chip, maple, ginger, pumpkin, chocolate creme, and other flavors I don't even remember. All made but one by Isamax of Maine and sold in local stores. Nothing says New Year's like whoopie pies, lol.

Okay, so now that I have gotten all the gratuitous whoopie pictures in here, what else did we do? Nate and Rob played ping pong. We started to play another game, but it broke up when I got drawn into conversation with someone else and some people got tired and decided to leave, which was fine. I enjoyed some very stimulating conversation with some of Diane's friends, and I found I had something very interesting in common with one of them. I was so engrossed with talking to her, in fact, that I almost didn't notice that it was just a few minutes to 2011. I finally broke away and counted the last 2 and a half minutes down with everyone else, shouting the final ten seconds, and followed by lots of hugs and joy from everyone. I was glad to share New Year's with my dad and stepmom for the first time in several years, and to have my friends to share it with as well.

My dad got some BBQ from Tennesee, which was much appreciated by the party goers. Rob loved it in particular.

Toast!

My start to 2011 has been slow; I enjoyed yesterday but had a difficult day today. So it goes I suppose -we just hav to hope there are solutions to all our problems in the horizon, and hopefully not get too overwhelmed before we find them.

So happy 2011 to everyone; gee, I haven't written in this blog all year. :)

Kate

On Bush Whackers, Friends and New Year's Eve

2010-12-29T01:56:00.000-08:00

This New Year's, I thought I might eventually write a list of resolutions, recap the year, or do some overdone ritual like that. But resolutions, as I think most of us have learned by now, are pretty much useless. Either you follow them or you don't (and most likely you don't), but at any rate, resolutions are something that should be made all year round, not just on New Year's. And I know what mine are without having to write them down: to keep trying to improve the quality of my life and health in any every way possible.

Recapping my year, although it was a very significant and mostly good one, would not feel meaningful to me; because when you have lived every minute of this year as intensely as I have, believe me, you don't need to revisit it. So here's the thirty second version, complete with a "knock on wood" clause: Completed first full year of stable living independently in a mostly chemically sensitive safe home, with people I mostly like and am able to get along with, in a town that I love two miles from where I grew up. Read that sentence again. If you know anything about me or my history, or that of a typical chemically sensitive and / or autistic person's life, then you will realize what an enormous accomplishment that is. There are twelve months worth of memories and stories there, but they aren't going to be told here. There's simply too many of them.

So what am I going to write about for New Year's Eve this year, on the eve of 2011? Well, until this moment, I had no idea. But then it came to me, a flash of inspiration. I decided that I would write about what I'm grateful for. Just consider it a delayed post from Thanksgiving. :)

At this very moment, sometime in the middle of the night on December 29, 2010, these are the things that I am grateful for.

I am grateful that I have one Bush Whacker request on Facebook. I have no idea what that is (although I can imagine), but it makes me laugh anyway.

I am grateful for the invigorating feel of cold, fresh winter air against my face when I go for my walks; and I am grateful to have the proper winter clothes to wear so that I can enjoy being out in this weather!

I am grateful for my community of friends, especially in the chemical sensitivity community, online, and for my friends, mostly in the autism community, offline. They help support me and remind me that I matter; and I hope I do the same for them.

I am grateful (knock on wood) to be able to watch TV and movies, something I wasn't able to do for five years. Not only is it immensely entertaining and very helpful for taking my mind off things, but it gives me something to talk about and think about that is not related to my illness! That especially was a hidden and unexpected blessing. I love getting lost in other people's stories, real or made up.

I am grateful to have a family that I am able to take part in again, and for the better relationship I have with them now.

I am grateful for a certain 93 year old woman in my life, who warms my heart and puts a smile on my face every day with her own smile, her enthusiasm and her interest in me.

I am grateful to have friends that I can go out and do things with, who share at least some of my interests, and who are just fun to be with.

I am grateful to have been given just enough tools to be able to do what I need to do in my life. (Yes, more would be appreciated, but we make do with the cards we've got, right? I am thankful for the cards I do have.)

I am sure there are more things that I am grateful for, but the point of this exercise was just to write what was in my heart at this very moment. Try it yourself; without over thinking it, which I often do, what small and big things are you grateful for?

That, I've decided, is the best attitude to go into 2011 with.

As hard as it may be, and it is hard, we need to think about these things from time to time. They can't be forced or then they'll just be trite. You need to acknowledge the hardships and difficulties in your life and be able to grieve for what you do not have; but on other, better days, you also need to find the part of you that is grateful. They can co-exist. In fact, if they didn't, I don't think we'd really be human.

A Most Unusual Thanksgiving

2010-11-29T00:49:00.000-08:00

How do I describe the 24 hour gathering I had with my grandparents and other assorted family members the day after Thanksgiving, in Longmeadow, MA?

It was short, for one. 24 hours from the time we got there at 4 pm Friday to the time we left at 4 pm Saturday.

But it was packed. Packed with moments, packed with connections, packed with so much interaction I think it's going to take me a week or longer to process it all.

Longmeadow, MA is a pretty, upscale suburb of Springfield, MA. It is a place I spent a lot of time in as a child, visiting my grandparents. I got to know the slope and shape of the sidewalks, perfect for walking; the CVS only about a third of a mile away, so much fun to walk to as a kid and buy candy. I took pleasure in the fact that you could walk to Connecticut from there, about 2 miles away (although walking back is another story). I spent a lot of time with my grandparents.

But it had been three years since I had visited this house and town. The last time was in September 2007. I remember it oh so clearly, because it was just weeks before the exposure in my Portland, Maine apartment would cause my chemical sensitivities to skyrocket, ensuring that my life would be changed forever. Because of the chemical sensitivities, traveling to see my grandparents after that and staying at their house was out of the question. I spent two years traveling around the country, trying to find a place to live that I could tolerate chemically. My life was chaos. How fitting then, that on what is only a few days before my first anniversary of finally living in a stable (knock on wood) environment, and moving back to the Maine I love so much, that I should make this trip back to Springfield.

Like I said, processing the events of those 24 hours might take a while. Which is why I'm glad I had my camera with me to document it. A lot of time, my mind is so engaged in participating in a moment or event that it is hard to actually emotionally process it until later. Therefore, being able to look at pictures of an event makes me feel more connected to it and remember some of the feelings I had without the extreme pressure of being in the moment. It also relieves some of that "feelings that I can't identify bottled up" feeling, because it helps me to process what went on.

The other good thing about having a camera is that when you get bored at family gatherings, or want to be present without having to actually be interacting with the people every minute, you can turn into an anthropologist and study what's around you instead. You can document what's going on you and preserve it for generations to come (if you're lucky). You can catch little moments of connection between people - which I believe is what family gatherings, and indeed life in general, is all about. They are just easier to bring to light in a gathering like this. When you go for mostly candid pictures instead of just a few posed ones, you can catch people as they are naturally, and if you're lucky, with a big, unforced smile on their faces. Then you can remember those moments of connection in living color for as long as the photos last, and remember with affection and pride just where it is you come from.

What is a family gathering but made up of small moments of connection? Two brothers teasing each other while playing with their laptops, or helping each other with their homework around the table on a Saturday morning; two older brothers, uncles in this case, one helping the other with a resume on the computer. People mingling, people exchanging stories, people laughing.

I can't actually remember the last time that my mom, dad, brother and I were in the same room. (We were missing one brother, however. He is supposedly surfing in Peru at the moment.)
I saw my brother last year at this time, and my mom in August. But I really can't remember the last time I saw them at the same time. I wonder if I'd have to go all the way back to college breaks for that - not that I can remember if we were actually home at the same time then, but we probably were.

My aunt, uncle, and cousins I hadn't seen in about five or six years. My cousins grew up in that time. They went from being adorable 8 and 10 year olds to teenagers - mature, intelligent teenagers that are a pleasure to be around.

Not too much had changed with my grandparents, which was good to see. They were thrilled to see me, as I was them; it was a new relationship, based on the new people we were. My grandfather and I discussed our mutual love of Whole Foods and hummus. He sampled the fancy Dagoba chocolate bars I brought; he liked the lavender alright but predictably did not like the 87% dark chocolate. The expression on his face was priceless, and the laughter, I'm sure, was worth the bitter taste in his mouth.

My brother looked the same as he had last year, and it was good to connect with him again.

I think we actually look like twins in this picture, don't you?

They say time waits for no one. It is true. People go on with their lives admist the backdrop of oh so many things. It is easy to get enmeshed in the events of your own life and lose touch with others. I never lost touch per se, as I make a point of calling all my relatives at regular intervals because I value connection, but still, seeing them in the flesh was an entirely different animal. For Black Friday this year, we opted for an entirely different experience: family over consumerism. (We went back to the consumerism on Saturday when I sent my grandfather on a search for rice crackers and Italian pastries. Appropriately, someone had named it Small Business Saturday, so now it seems fitting.)

I woke up from a nap in the car (something I usually can't do) as the Beatles played on my father's Ipod, and we hit the border of Maine. Something about that "Eliot/Kittery, Maine" sign made me smile. Massachussets is a nice place to visit, and family important to connect with, but there's no place like home.

My mom and I; I guess we kind of look alike too!

Meandering Around Portland

2010-11-06T23:21:00.001-07:00

Don't you hate when you've got a great blog post in your head, you can see the sentences and ideas you want to use, and then you have to sit down and write it? Not as easy as writing it in your head. For me, that's not because the ideas or words are hard to find, but because the physical aspect of writing has gotten harder.

But nevertheless!

I was going to go to my dad's today with my friend Kellie, but she felt sick after we walked around Mackworth and needed to go home. As it was only 1pm, very early for me, and not wanting to waste an entire day just sitting in my room, on the spur of the moment I asked her if she would take me to Portland on her way home. I'd wander around there for a while, and then {gulp} take the bus home. This is significant for me as trying out the bus has been a goal I have been working towards for about a year. Due to my chemical sensitivities, buses are very difficult for me. And unpredictable as well - you never know who will get on wearing what. But I had been tossing the idea of trying the bus around in my head for a month or two, and this seemed the perfect opportunity to try it.

I had been afraid my bag would be too heavy to carry as I walked around, but once I put my hat and gloves on, it was nice and light. Also, once I put said hat an gloves on, I felt so nice and warm - whee! I KNEW there was a reason I've carried those hat and gloves around all summer for five months! lol. It was about 40 degrees and windy, so they really helped.

So, I started in Monument Square as usual, down to the Old Port, down Exchange, which is such an iconic street. Down to Commerical and the water, and the DiMillo's wharf. They put a new mini lighthouse statue there - it's pretty. So were the boats. Down Commercial to Standard Baking, where I peeked in the window, and then sat on a bench for a bit to rest. Back up Exchange to the park by the former O'Naturals ("Tommy's Park") (I wonder who Tommy was?) where I admired the pretty trees and walked around on the curb surrounding the tree. I had more energy than I expected at this point, so I kept going so I didn't lose it. I didn't stop much the whole time under the theory that stopping would kill the spirit I had going. Up the rest of Exchange onto Congress, and a left to get to Elm, which would take me down to look at the new Trader Joe's, and then to Whole Foods. (That was the only logistical error I made the whole day, in that there are 2 ways to get back to Mon. Sq. from Exchange and the other would have spilled right into Elm and been technically quicker. But going up Exchange is quicker if you're going right to Whole Foods, which I usually am.)

Down Elm and past the bus schedule that I foolishly didn't read, assuming erroneously that the information the Metro guy had given me on the phone was correct (it wasn't). Stopped to rest on a big stone slab behind TJ's. The opening notes of Lady Antebellum's "Hello World" came on and I was entranced. First time I've ever liked that song, it works better with headphones.
TJs was a mob as expected; and I'm just talking about outside! Six cars in line to get in the parking lot. A cop out front directing traffic. (Does the city pay him for this or does TJs?)
Took a brief look inside the window. Pandemonium. Overwhelming just to look at. So I hightailed it out there ,back the 2 blocks up Elm where I crossed over to Kennebec to go a few blocks to Whole Foods. A lady I passed along the way with a TJs shopping bag said she had waited in line for half an hour and wouldn't be coming back any time soon.

Now, I could look at this two ways. And thankfully, I'm looking at it the second. Walking around Portland used to be a far different, dare I say it better, experience. What with being able to eat junk food and just having more energy than I do now - and the sugar high I was always on. But fortunately, I didn't expect much today. I hadn't so much as even seen the Old Port in months. I expected nothing more than to walk and see. And that's what I got. And it was good enough. I've said this before and I'll say it again. There is something about walking around Portland that just feels so right, so natural, so good. A mandala of sorts. Portland - by this I mean the Old Port, Mon. Sq. and the road down to Whole Foods - is just laid out so intuitively. It makes sense. I could find my way around it with my eyes closed. And for this I love Portland, the intense familiarity of it, my easy competence while navigating it. Portland is such an eminently walkable city.

I was thinking about it more and I figured out another reason I like it so much. My mind goes so fast, and is so agitated most of the time with thoughts and worries going at 100 mph. I try to slow it down, to engage and distract, but it's harder to do inside. When I'm walking, it's like my body is almost catching up to my mind, and that slows it down and makes me feel so much better. I can take out my mental agitation by just walking, and walking a path I know so well. I replace internal stimulation with (positive) external stimuli. I get out of my head and into my body a little. I like that. (Although my aching calves and knee might beg to differ.)

I got to Whole Foods and thought I'd sit, but instead I just started wandering. I still had my hat and headphones on so I was in a completely different plane of existence. I wasn't attuned to the people around me (although I didn't hit into them either), just the music, the food, and my inner rhythm. I went to go sniff some coffee beans to try to get the TJs smell out of my nose, then wandered looking at the self serve food bars, the enormous selection of cheese, the premade pesto and whoopie pies, the weird unidentifiable grub in the hot bar.

Then I zeroed in on the chocolate bar aisle, and examined all the bars very closely. There must be 20 different brands and 50 different flavors in that section. It's like heaven just to look at. All high end, mostly organic chocolate bars. There was the full selection of Dagoba with all their pretty wrappers in different colors. Fat, stocky Chocolove with their poems inside. The distinctive Green and Black's, with their two toned wrappers. Scharffen Berger, with their tiny little squares of chocolate, making you wonder just what could lie behind that packaging, what could be so good that they'd put it in such a small wrapping. Newman's Own Oganics with their expresso dark chocolate, jumping out at you. A small, square shaped package. Then the colors, so many colors, so many bars, so much potential. Long, rectangular packages that promise to be super premium, from Costa Rica or South America, using bourbon vanilla or what have you.
65%, 75%, 85%, 90... the packages call out, enticing you to have a true chocolate experience.

What do you see when you look at an aisle of chocolate bars? I'm guessing you don't see all that. :)

So when I finally broke my trance, I sat down at the tables and stuffed myself with rice crackers for energy. :) The interesting thing, I just realized, is how my experience today differed from the norm. It was "planning vs id," in a way. Instead of planning out every minute of my day like I usually do, I was just going with whatever felt right, wandering with no particular plan. Instead of analyzing everything around me, I was lost in the sensory experience of the colors, the shapes, and imagining what lay behind each product. My thoughts were given free rein. Who knew you could have such a meditation in a grocery store? Have I mentioned I love Whole Foods? :)

Ok so I just got totally distracted googling chocolate truffles. Haha, yes, I know. So let's see if I can finish this quickly cus I'm tired now.

Forgot to mention: went to old port candy co to get Marion chocolate Neccos. She had said she wanted them when we were watching some kind of food network show on candy making. She said, "I wonder where you would even get them?" which is kind of like a challenge to me that I can't resist. I knew Old Port Candy Co woul probably have them, they have lots of nostalgic candy. She loved them and said they tasted just like she remembered :)

Bus: After wandering aroun WF totally aimlessly for 2 hrs, how I'm not sure, I left for the bus. Which was supposed to be at 5:55. I figured it might take 15 min to walk there so I left 20 to be sure. I got there in 8. Woohoo. Instead of going up Pearl like I usually would I went back down Kennebec and up Elm which brought me directly to the bus depot. Street wasn't as steep either.
Score on that. I felt real good for about 2 min until I realized the guy on the phone had given me the wrong time and the bus didn't come till 6:30. 40 min away. Ooops. It suddenly occurred to me after the 5:45 buses came that no buses ever left at :55. Either :45, :15, or :30. My suspicions were confirmed by looking at the schedule on the wall. So I called Dennis to kill 20 min (thanks Dennis!) and sat for the last 10 . Fortunately, it was not too cold out with my hat and gloves, so it wasn't so bad sitting. I should have known he'd given me the wrong time but it's been so long since I took a bus that I'd forgotten, oh well.

Bus came a few minutes before half past and thankfully I was the only one on it, as I predicted might happen. No one goes to Falmouth that late in the day usually, they just go to shop most of the time. I had done my visualization so I could be calm when I stepped on the bus. It was definitely uncomfortable (smell wise) but it wasn't intolerable. It's still not something I'd want to do again in a hurry. It took a lot of self control to keep the smell from getting to me. Or should I say, a lot of crackers. I think I ate a whole box on the way home. Eating something kept my mind off it. Took 25 min. Went by fast enough but I was still glad to get off. Walked back from Town Landing as the driver had no idea where my street was and I couldn't see it from the very fast moving bus.

So got back about 7:00. I'm glad I got out and did something , got to see Portland and achieve my goal of trying the bus. But I won't do it again any time soon, lol. The bus part, anyway. Kinda sore and still have some lingering worries from the bus part but hey I made some memories. Whole Foods had beautiful Hanukkah candles for sale - surprising! The coffee shop that used to be the Maine Bean changed to some other coffee shop, which is probably the third coffee shop that it's been in the last year or two. Maybe that place is jinxed. I heard a girl asking her dad about the Hanukkah candles. "It's only three weeks away!" she said. So good to know there actually are other Jewish people in Portland.

And with that I sign off, hoping that I can retain a positive frame of mind and remain open and calm about other experiences that may come my way - in moderation, of course.

What I Learned from Making Hummus

2010-10-24T22:22:00.000-07:00

What do you get when you mix

2 - 15 oz cans of garbanzo beans
2-3 cloves of garlic
1/2 cup of tahini
One jar of roasted red peppers
2 tablespoons of olive oil
1 1/2 teaspoons of salt
1/3 cup of lemon juice

and

several good friends all with an appetite for a certain Mediterranean food?

You get a hummus party, of course!

Due to the sad demise of the brand of hummus I had been eating that suddenly changed its recipe, I decided to see what it would be like to make my own hummus. Everyone and their brother, and their brother's brother, told me how easy it was to make hummus. 10 minutes and you're done, they said!

Lesson One: Don't listen to other people. :)

Luckily, I had some trusty sidekicks to help me. Jeanine and Amber were my co-chefs, while Nate and Rob provided support in the eating department. :)

First, it simply took a long time to get all the numerous ingredients out of the shopping bag, on to the table and opened. Either we were particularly slow or they don't include that in the prep time. None of us had ever done this before, so we had little idea of what we were doing.

We added all the ingredients to the food proccessor, pressed on, and then were faced with a bitter truth of hummus making:

Lesson Two: They don't tell you that the hardest part of making hummus is putting up with the noise of the food processor.

Probably because "they" aren't a bunch of Aspies trying to form sustenance.

Bravely, however, we plowed on. First taste revealed a way too thin and way too lemony concoction, so we tempered that with more beans and some red peppers. After another half hour or so of tinkering and having gone nearly deaf, we pronounced it good. A little on the spicy part for me, as the garlic packed a punch, but good. Definitely edible, which is all I was really looking for in the first place. Overall, a success.

We transfered it to its resting place in the fridge and adorned it with a rosemary twig.

On to batch 2, which we decided to make basil flavored. I had fresh organic basil to use, which undoubtably improved the flavor, that is, of course, after we got finished doing the 102 adjustments that were needed before putting the basil in.

Lesson Three: Aspies can get kind of overwhelmed with making decisions. And when you make hummus, you have to make a lot of decisions.

We were dropping like flies by the time we approached the third batch, but we, or at least I, perked up a little bit when it came to adding the seasoning. A bunch of fresh rosemary. Vroom! Vroom! went the engine of doom. Off went the top as we bravely sampled the wares. Nothing. It tasted like nothing. "Okay, take that, you evil hummus monster!" I said, and grabbed the container of dried rosemary, shoving liberal amounts into the top of the hummus. "How much are you going to add?" asked Janice, who was the practical one. "A lot," I said, giving an ever so scientific and precise answer.

"Vroom! Vroom!" went the machine. Clank! Clank! went the spoons as they scooped yet another helping from its plastic insides. But alas, there was still no taste, so I dumped almost the entire conents of a package of dried lavender in and said, "Aha! Now you will taste like something!"

Lesson Four: Just because something tastes good by itself does not mean it will work in hummus.

Batch #4 was a milder and less spicy version of the red pepper.

After everyone had had a taste of all four batches, and admired how pretty they were, we gave up on the cooking thing and went to watch a movie (My Name is Kahn).

Lesson Five: Everything is more fun with friends, even something that would be tedious and completely overwhelming alone.

Lesson Six: It feels really good to have someone else enjoy something you made - maybe even better than enjoying it yourself.

Everyone left with a portion of the hummus in a nifty disposable Tupperware container provided by Rob.

The hummus still might not be as good as what I used to buy in the store, and I am still hoping the hummus I ordered from Brunswick is a decent substitute, but it was a fun and educational thing to do once. I know how to make my very own hummus if I ever get into a pinch. One can never have too many skills, especially when it comes to cooking.

Happy hummus eating!

The Anesthetic Effect

2010-10-10T01:25:00.000-07:00

When I was in on the coast of Oregon last summer, I had a very memorable experience (well, many, but this was one of the more memorable). I was in Yachats State Park, one of the most beautiful places ever, a long, rocky beach with amazing waves and scenery. The pure beauty of the place had a numbing effect; I was in awe. Unfortunately, I repeatedly but accidentally had my foot dunked into various bodies of water or the tide, and thus had to walk with a soaking wet foot, which is something that would normally irritate me to no end. Not only irritate me, but probably ruin the entire outing and my enjoyment of it. But, to my surprise, I was so hypnotized with the beauty of the ocean around me, I didn't even notice. I was aware it was there, but I didn't care. I called it being "anesthetized" at the time .Not anesthetized to the good , of course, just the bad. And I was amazed. It was the first time I had ever been able to not notice something that was bothering me.

And then it happened again today. And I feel this is a notable enough occurrence that I need to document it, if only to remind myself that it is possible. We went to climb Bradbury Mountain today - Nate, Rob, Janine, Amber and I- as it was a beautiful fall day and we were all in the mood to see some foliage at the top. Bradbury is a very easy mountain, it's probably a 20- 30 minute walk up, with relatively little incline, at least compared to most mountains. So nothing very difficult, although you do have to stop a few times to catch your breath (or I do).

Three quarters of the way up, all of a sudden, my knee, for some inexplicable reason, began throbbing in a way that I had never felt it do before. Ever. In fact I've never had any sort of knee problem ever. It was intense, and it was so out of character. Thankfully we are almost at the top! We reached the top, and Nate and I sprawled out on an available piece of rock overlooking what has to be one of the most beautiful vistas I've ever seen. Reds and yellows, oranges and greens dotted the landscape of about a million trees below us and out to the horizon. It has to be seen to believed. It looked like a watercolor painting. I haven't been up there in fall in many years, and I was not dissapointed. Finally, it felt like fall in Maine, something I have missed for so long!

I was hoping that after sitting for several minutes, my knee would return to normal,. but I quickly found that was not the case. However, something that was for me truly different happened. I didn't panic. (I am still working on that not panicking thing. I am afraid this immunity to it is going to dissapear shortly. But I will work on keeping it!) I was too engaged in the beautiful landscape, and in taking pictures of the beautiful landscape, to give my knee much attention, even though I was aware it hurt. I did everything I normally would have.
When I started walking down, I felt like I had no idea how I was going to get all the way down a first, but I got into a rhythm and into a conversation and was able to not think of it, and just walk. I still smiled at the blue sky and the leaves around us once in a while,.

When I got to Rob's car, my thoughts were again not on panicking about my knee - as they would have been and have been every single other time I've gotten or felt hurt in any way in basically my entire life - but on what a fun hike we had just had, and the conversations we just had. Again, remarkable.

Same thing at Whole Foods - I was able to joke about and even laugh about the situation, in the company of friends. I am aware that this is probably what a so-called "typical" person probably does on a regular basis without thinking too much about it. But it's huge for me. My usual response, and one that will probablt come out sooner rarther than later, is to as I said panic, an beg everyone around me for reassurance that it will get better. Not a response I enjoy having, but nevertheless the truth. But I was actuallt relaxed about it. Me, injury, and relaxed in the same sentence is like... well, it's never happened before. It was so weird, but so nice.

So again, I attribute it to the "anesthesia effect." I don't have a better word for it. For only about the second time in my life (and the first time for something that was relatively major, at least compared to wet socks), the beauty of a physical landscape and the feeling of connection to my friends actually my overcame my feelings about a physical sensation in my body. I was calm about it.

Man - where can I get myself some more of that? It is my hope that by detailing it I will remember it and it will be more likely to happen again. I wouldn't really bet on that, but it would be nice. This is the kind of person I WANT to be. So far though sheer willpower alone has not been enough to make me that kind of person, although I've gotten better than I used to be.

To me , it all comes down to human connection, and the feeling of being connected to others - or nature - or both. When you've got somethign that fills your heart and spirit, the bumps and bruises of life don't hurt so much. As an Aspie. feeling connected to others is something I've long struggled with. But more and more, I see why it is worth the battle.

Tomorrow, on the other hand, is another story. I can't give any guarantees that this state of mind will last. But it would be nice if it did!

Internalized Self-Hatred and "Spinning into Butter"

2010-10-08T22:47:00.000-07:00

I watched the movie Spinning into Butter last night. It had been on my Netflix queue for a long time, but the description of it had never been sufficiently interestingly enough to pull me in and make me choose it. I did, though, on a whim last night. Not expecting much at all, I was immediately drawn into the story, and the first hour passed like it had been 10 minutes. (Usually I'm checking the clock every 20 min to see how much time has passed.) Towards the end, I kept having to put it on pause so I could think about what was being said. Few if any movies are ever that meaningful that I actually need to pause them - repeatedly - to think about what is happening!

Spinning into Butter, from its description, is a story about a "dean of students at a small liberal arts college who is embroiled in racial controversy at the start of the school year." Of course, that could mean anything. But what actually ended up happening was a pleasant surprise.

Sarah is the dean of students at a small college in Vermont. When someone leaves hateful, racist messages under a black student's door, the college is in an uproar. A "dialogue on diversity"is called, more to help with the college's PR than to actually address any racial issues. At this point, I flashed back to my days at Goucher, another small liberal arts college that had faced this very same issue - the same way, I am sure, virtually every college or university in the nation does, at some time or another. We too had "diversity dialogues" but I dare say they were run a lot better than the ones in this movie. (My memory of them is vague, however, and not entirely reliable.)
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Please be advised that this review and blog may and probably will contain spoilers as to the exact nature of what happens in the movie. I think it is still worth reading, and the movie will still be good whether or not you know the plot, but if you do not want to read the plot, then stop reading here.
***********************************************

The incidents escalate to insults painted on the wall and even a noose. The student body is highly divided on what should be done. The one thing they can all seem to agree on is that the administration is not handling it appropriately, and only giving it lip service.

Sarah is caught in the middle; she also believes the admin. is handling it wrong, but there is not much she can do. The movie turns surprising when Sarah admits to her reporter friend that the reason she left Chicago was that she was growing afraid of some of her black students, of their "gangster mentalities" and the way they would shove her out of the way without even looking back. She admits that maybe only 2 out of 10 or 20 black kids would be like this, but they are, she says, the one she remembers. Her tearful and somewhat shocking admission gives insight into one of the myraid ways that racism is born. In a shockingly honest and enjoyable dialogue, Sarah and her friend, who is black, exchange a list of stereotypes that people often have about each race.

Cut to the end, or near end, of this movie. A student sees a kid about to throw a rock at a dorm window. He wrestles him to the ground, and everyone is shocked beyond belief to discover that the culprit of the racist incidents is no other than the victim himself. In other words, the black student who had been the victim of these crimes was the one doing them to himself.

At this point, we are all shocked, wondering why he coul have done such a thing. I certainly was. I paused the movie to try to consider his viewpoint and come up with a hypothesis for why he felt the need to do this, but was unable to come up with anything that seemed plausible.

In one of the last scenes of the movie, though, the student reveals why he did these acts.
With palpable anger, he says, "I kept waiting. I kept waiting for someone to say it [the N word], but no one did. No one did. Everyone was so nice to me. Everyone made a point to come up an say hello to me, ask me how I was doing. The professors would ignore their white students and come up and talk to me. Their hatred was so thick I couldn't breathe!"

Another shocker. You think to yourself, how could he have interpreted people being kind to him as hatred?

But then you think, the world is full of empty people covering up their true feelings with false platitudes. People who are trying to be politically correct by being nice to the black guy while thinking very unpleasant thoughts under their breath. Not all people by any means - I am not pessimistic enough to believe this - but enough. Especially the administration of that college. So perhaps he was interpreting people treating him as some sort of celebrity by going out of their way to be nice to him as a kind of racism all the same.

But what really hit me when I thought about it for long enough was the idea of internalized self hatred. His father would tell him repeatedly "Just wait for it, always be prepared for it, someday someone is going to come up to you and [use the N word]." His father told him he always needed to be prepared to fight. His father passed an unfortunate legacy of fear onto his son that kept him in chains. The messages he got about himself as a black person from other parts of society made him hate himself. In turn, he expected everyone else to hate him, too. When no one did, (at least this is the interpretation I finally settled on), he experienced a form of cognitive dissonance. His outer and inner world did not match, So he had to make it match. No one was going to call hin the N word or treat him like dirt, so he did it to himself. It was the only thing that made sense to him.

A very sad story indeed, but one that makes you think quite a bit.

I then started to think about the ways that we all have built in internalized self hatred for the various classes and groups that we belong to, or at least biases. How we often feel that we don't measure up, that we're not good enough in some way. How we often lack the confidence to go after what we want, thinking that others are more better equipped for whatever it is than we are. Is this not also a form of internalized self hatred? Are we not also punishing ourselves for being (insert whatever applies to you personally)? Too fat, too slow, lacking initiative, not pretty enough, the wrong religion, the wrong race, disabled, not "normal" enough, whatever?

His was just a more extreme version of it.

We need to look at the ways and places that internalized self hatred comes from. We need to look at the myraid of ways that our culture influences and enforces negative ideas and stereotypes about our bodies and our lives. And then we need to change those values.

We need to have genuine experience with people from other groups; people of different races, people who are disabled, and so on. That, to me, is the only real way I can think of that you can battle racism or any other of the "isms." Once you have personal experience with people from a group of people that is positive, you won't be as likely to think negatively of that group without good reason. If you do, you will not be as likely to apply those negative thoughts to a whole group of people. You need to engage with these people in a genuine and not superficial way to see their true selves. Sarah's mistake in Chicago was to only see her students superficially.

So, at the end of the movie, Sarah quits her job, tells the administration how stupid they have been, and heads back to Chicago to give it another try at being a better person. She didn't know how, she was nervous as hell, but she knew that running away or engaging with an issue on only a superficial level was not the way. She came back to learn how to be a better person.

The ending was very touching to me, and as you can see, made me a think a lot. I think this movie should be used on every college campus as a way to open up discussions of racial issues.
I think many people would have very different opinions on it, which would make it very valuable for discussion. In fact, I may recommend it to a psych teacher I used to have who did a relational psych class and often delved into topics like this.

Just wanted to share with you a snapshot from my head, and recommend a movie that may change the way you think on certain things.

Few movies ever motivate me to write a blog post on them. Actually, only two so far. But this is one of them.

My Name is Kahn

2010-09-15T23:10:00.000-07:00

I watched the movie "My Name is Kahn" last night, actually over the last three nights, and I was so incredibly moved and stunned by this movie that I had to sit down immediately after the credits rolled and wrote this review. I could not recommend this movie more strongly for every single person to watch, as it speaks to so many issues in our current culture. If you do watch it, please let me know. It is available on Netflix.

"My name is Kahn, and I am not a terrorist."

So starts the beginning of this epic film that will tug at every last heartstring that you have, from beginning to end. You will never again be the same after watching this movie. How could you? It is a movie about love truimphing hate. About just doing what you can in the face of overwhelming prejudice and violence against you. It is a movie that lets us see into the lives and hearts of a minority of people so often mistaken to be "different," "other," "not like us," and even dangerous.

You will see that love brings us together, but hate tears us apart. You will see that people who are different - whether because of race, nationality, religion or whatever characteristic - have just as much value as every other citizen in this country - and sometimes more. Because sometimes, they rise and above and beyond. They do what's right not because they want to win popularity points but because they know in their hearts what is right.

Rizhu Kahn's mother always told him, when he was a young Muslim kid growing up with Asperger's Syndrome, in the midst of a war between Hindus and Muslims, that there are two kinds of people in this world. People who do good deeds, and people who do bad ones. It is a message that Kahn carries in his heart for the rest of his life.

Kahn has Asperger's Syndrome, a form of autism. There are many things that he doesn't understand; many things he does not do quite normally. He is very awkward in many ways. He takes everything literally and is very blunt about what is on his mind. But he has what is most important of all: good values instilled in him by his mother, and a good heart.

It is this good heart that makes Mandira, a beautiful Hindu woman who works at a beauty shop, fall in love with him after a chance meeting with Kahn when he is selling beauty products. Kahn wins her heart with his heartfelt but quirky ways, and they are married soon after. Kahn also becomes a loving father to Mandira's six year old son, Sam. This movie, a Bollywood movie made in India, does not have that cheesy "Hollywood" feeling to it. Everything minute of this movie is sensitively and intelligently done. Instead of being flashy, it moves your heart with its quiet innocence and by simply displaying the truth of Kahn's existence for all to see. It matters not whether Kahn is Muslim or white, whether he is disabled or not. You see the humanity in him, and continue to throughout the film.

But disaster soon strikes. In the wake of the 9/11 terrorist attacks, anti-Muslim s ntiment is high everywhere. When Mandira's now 13 year old son is killed in a hate crime by some high school kids, Mandira is torn apart. Convinced that Kahn's Muslim last name is what got Sam killed, she turns against him. In a fit of anger, after telling him to leave, she says to him sarcastically, "Why don't you go tell every person in America that you are not a terrorist? Why don't you go to tell the President of the United States? Then you can come home!"

Kahn, interpreting her words literally, sets out to do just that. It is unclear at this point in the movie exactly what his intentions are, and how he plans to achieve them, but we are moved by his resolve nevertheless. In the course of Kahn's journey across the country, he meets many people that are moved by who he is. In a small town in Georgia, he befriends a black family after returning their injured daughter to her home. He continues traveling the country, following the president, trying to deliver his most important message: "My name is Kahn, and I am not a terrorist."

There is much more, of course, but you'll have to watch the movie to see what happens next. Will he ever get his wife back? Will he and Mandira find the healing they so much need? Will he get to talk to the president after all? What other journeys might he go on? You won't be dissapointed.

While I originally chose to watch this movie because of the Asperger's connection, it is about so much more. It is a stunning journey through one man's heart. It is a dead-on accurate reflection of the state of America post 9-11; a meditation on identity, and a reminder that red is the only color running through all of our veins. Kahn is not a remarkable person simply because he did all he did "despite" being Muslim, or "despite" having Asperger's, but because he is a good person, just like his mother told him to be. That goes for every single other person in this country, too.

Funny Keywords Used to Find My Blog

2010-09-14T00:48:00.000-07:00

I just looked at my Google Stats keywords for people who found this blog, and after like 4 months or so (maybe more), I have finally reached a critical mass where I am getting that all important thing - funny Google searches from people!

So in the interest of both entertainment and seriousness, and because I just find it fascinating what people search for, I present you the most interesting keywords/search phrases used to find my blog. It's like looking into the psyche of the nation, honestly.

Most amusing was how many other people share my feelings about weather and humidity:

"hard to function in east texas humidity" --- man, i feel for you!

"humid summer maine" - you got that one right!

"humidity and aspies" - hmm, never knew there was a connection but perhaps

"weather emotions humidity worried" - wow this person is concise. they summed up my entire blog entry in 4 words.

"when will it stop being humid" - we were all wondering that!

"barometric pressure humidity brain fog" - again, this person read my mind.

***

and then the MCS people (not amusing, just interesting):

chemical sensitivities finding a home

housing for people with chemical sensitivity

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Some Aspergers related searches:

how to make aspie child clean themselves - a common question!

maine aspergers housing - doesn't really exist, except in south portland, kind of

new carpet chemicals aspergers - never would have connected the 2 but it is definitely related to MCS!

All about Attitude, Illness and Living Life

2010-09-12T00:53:00.000-07:00

There is something that's been on my mind lately.

If you had to choose between mental health and physical health, which would you choose?

Let's put this another way.

This can be best illustrated by the story of the two twin boys who both got a pile of dung for their birthday. One boy was mad and said "It's just a pile of dung! This stinks!" The other boy jumped for joy and said "Oh boy, we're getting a pony!!"

Same circumstances. Two radically different attitudes.

It's a story I've come back to many times in my life.

Three years ago, I did not have MCS (chemical sensitivity). Or I was affected only very mildly. I could go into buildings. I could work - kind of. I could take the bus, go into Portland, have a limited social life. Very limited. I had the trappings of, or the beginnings of, a "normal life." Okay, it wasn't really normal because of Asperger's, but for the purpose of this discussion, we are ignoring that factor.

But despite all this ability, I was miserable! Well, most of the time. There was so much more in life I wanted. I yearned for friends and a social life, to be more a part of the world, of the community, to feel more fulfilled, all of those vague emotional needs that you can get lost in and drown in if you let yourself. I cried and cried. I wanted more, and I couldn't appreciate what I had. That's a very bad thing, and it will lead you to never being happy.

But then, something curious happened. Well, it happened in the fall of that year, anyway. I was thrown into full stage crisis mode when my chemical sensitivity increased to the point where I couldn't go into any buildings, I couldn't tolerate any apartments, and I had nowhere to live other than my parents', which just wasn't working. My life was thrown into turmoil and for the next 2.5 years, I would think about nothing other than finding a place to live that I could stand from an MCS point of view.

Now obviously, these were not pleasant years. Hellish, actually. But despite it all, man, did I learn a lot and see a lot. I lived in nine different cities across the country in 2.5 yrs. You cannot possibly go through this and not change your attitude about life in some way, your viewpoint on the world, your opinion on what matters and what doesn't. The way you see yourself, your place in life, etc.

And so when it's all said and done - three years later, having found a place where it seems like I can finally (knock on wood) settle down, where I've been for nine months, I lie in bed sometimes at night and daydream about the differences between me now and then.

And this is what I see.

I see myself sitting on the couch of the South Portland apartment three years ago, crying because everything felt so uncertain, because I didn't have enough friends, because I wanted my life to be different.

Then I see myself immersed in a journey where none of that seemed the least bit important anymore, where all I cared about, ALL I CARED ABOUT, was a room with a bed in it that didn't have any chemicals, where I could relax and have a life of some kind, and didn't have to be constantly on the run.

Finally, I see myself emerging from all of this and being thankful for the very smallest things in life. The lack of (mostly) conflict with the people I live with (knock on wood). A chemically safe (mostly) living environment. Being able to take a walk in fresh air (except for the summer). Being able to watch TV again after not being able to for 5 years. Being able to read a book again. Being in my home state. Having a stable schedule and routine. Eating. A sunny day. The ocean. You know, the little things. Nothing has changed in my lifestyle or number of friends, really - but my outlook and attitude on life, on what I have, what I want, and where I want to be in life, and what I want out of life, has drastically changed.

Illness took away so much, but it gave me so much in return. I have so much more confidence in myself. I have a perspective on the world I'd never have had before. I'm not a whiny emotionally dependent person anymore (most of the time). The irony is, that even though I can do far less physically than I used to do - in terms of going places - I am far more an independent person than I was when I could do my own grocery shopping.

Why? Because I am (more) emotionally independent. I have gained far more distress tolerance skills (although I still could use far more) and I don't have to rely on other people for my emotional health as much. I still need people - but I have healthier interactions with them. I'm not in meltdown and distress mode all the time. I can solve more problems on my own. I can handle far more things without blowing up. I can brush some things off.

I don't think I would have gotten there hadn't it been for all the experiences of self-reliance an different viewpoints I encountered in the last three years, moving around because of MCS.

So, physically worse off, mentally better off - which would you rather have?

With a good attitude, you can do anything and go anywhere - you just have to modify things a little to fit your needs and situation. With a good attitude, you can be happy despite negative circumstances (to an extent).

With a functional body but a bad attitude, you are pretty much stuck in place.

So maybe, in some ways, I am the lucky one one after all?

****

I have often wrestled in my mind with what caused my sudden onset of MCS and decreased ability to deal with life at the end of my senior year of college. The obvious theory is the rainbarrel theory of MCS:that a sensitive person's body accumulates toxins over time, and at some point, they reach a threshhold, in which your body can no longer handle them or detoxify them, and you become super sensitive to everything.

But there are other factors. College was a VERY, VERY intense time for me - all four years of it.
Every day, I felt anywhere from euphoric to near suicidal and back again, many times, in the same day. (Good social interactions = happy, questionable social interactions = depressed).
There was a lot of good about the college experience, but there was an awful lot of pressure too, socially, environmentally, and academically. Yet I kept pushing myself past it all because that's what I do. I think it's in my genes. I was over my head so many times but I kept pushing myself on because that's what we're taught to do.

Everyone experiences stress, everyone has hard times. Everyone gets stressed out over assignments. I thought it was normal - and it probably was. But I think I was pushing myself past the point of mental/emotional exhaustion, past the point where my body and mind could keep up, without realizing it. I managed to turn these emotions off somehow and just do what I needed to do. The ten page paper, the burning questions of why I was so different socially than everyone else, the loud music coming from the dorms, the burning jealousy of seeing others have a good time and not being able to join in - I felt these things more intensely than I have felt anything in my life, more intensely than I would have guessed it was possible to feel anything. And they took a toll on me.

But I didn't really notice, I mean, it was normal for me. All I'm saying is I kept going and going and going and going and going and going going and going and going..... for three and a half years...until I returned to college one semester from break, and found the oddest thing had happened. I couldn't go into the library or classrooms or what have you because they all smelled like Windex, or perfume, or lotions or etc. Everywhere I went my eyes burnt, my nose stung and I felt like I was going to pass out. I had no idea what was happening. It made no sense. None at all. So I tried to cope, to adapt, like I always did. Use the computers past midnight when no one would be there. Hang out in the basement of the library where nobody was. Run past the initial library entrance that smelled so bad. Avoid the whole lower level of Pearlstone entirely because there was something God-awful down there. Roam the campus for hours at a time, looking for just one room in the whole campus where I could sit for a few minutes without feeling sick.

I still thought I could pull it off. I kept going. I wasn't getting any work done, but I thought that would be temporary. I'd had bad times before. I'd do it at the last minute, like I'd always done. Except this time I couldn't. It wasn't until my stepmom suggested, on an emotional late night phone call, that it was okay to take a break, that it was okay to come home, that I actually realized I could (and I am thankful to her for that.) And I did.

So....one could almost say that it's like my body imploded on me.

I believe MCS is a physical illness with physical origins. But I also believe for people who are vulnerable or alreay heading in that direction anyway, it can be triggered by extreme stress. Extreme stress changes things in the body on a biochemical level. It weakens the immune system and other body systems. It throws things out of whack. Could it throw things out of whack enough that I developed the symptoms of MCS? Certainly, in my opinion. Some theorists posit that illness is an expression of other things going on in the body and mind. (And I am not talking about psychosomatic illnesses, I am talking about genuine illness.)

So I found myself wondering, a few weeks ago, a very poignant question. If we assume that due to my general neurological make-up and somewhat fragile nervous system, college was an ultimately overwhelming experience that caused me to develop MCS and severely limit and change my life - was it worth it? Did I bring this on myself?

But fortunately, I didn't have to think long before I had an answer. Yes, it was worth it. Yes, it was worth it 1000%, without a doubt .

Because without the experiences I had in college, I wouldn't be me. I wouldn't be anyone. I'd be a severely depressed person with very low self confidence and no prospects in life.

College helped me overcome the trauma of my youth; college gave me a self, a person to be. College, as cliche as it is, helped me find myself. Accept myself. Being accepted in the college community, after all the negative social experiences of my past, finally let me come out of my shell and be who I was. I stopped being tortured by feelings of persecution every time I so much as walked by someone my own age, I stopped being paranoid about what other people thought of me. I decided I was an okay person, and embraced myself and the world around me.

My social experiences in college, as difficult and roller coaster like as they were, gave me the self confidence and sense of identity I needed to survive in this world.

A paper diploma means little to me. Academics can be learned from a book and are useless except in your specific profession. What college does is teach you how to think and how to learn - if you go to a good one. I don't need a diploma for that.

So was it worth it? All of life is a trade, I guess. I got one thing I desperately needed, and lost another. But none of us are playing with a full deck of cards. I just happen to be missing a few that are a little more uncommon than most. But, again not to be cliche, we're all missing a few cards here and there. It's what you do with the ones you have that counts.

So. When a lot of people look at me, they might see someone more disabled than I would like. I don't go into stores. I don't work. I get overwhelmed very easily. But if they'd look closer, they'd see the other qualities that I have. I smile whenever I can. I try to make other people happy whenever I am able to. I attack my challenges with all that I have. I always keep trying, and I never give up. I work very hard to make the kind of life I want to live - even though it takes a long time! I have passion, I have love, I have hope, and I have life. I do what I can to help others. But most of all, I have an attitude that I will believe will take me where I want to go.

And that, I have decided, is the most important thing of all. And if I was as normally-abled as others are in certain areas, well, it's just possible I may never have developed this attitude. Who knows what would happen if you change the circumstances of your life?

What about you? What do you think is most important?

I would like to add a disclaimer that writing this does not mean that I won't be subjected to occasional bouts of depression, helplnessness, neediness, and all those other lovely things we all like so much to avoid. But I think have the tools to get out of them (in due time). And I am going to keep working until I get to the place I want to be.I sure hope so anyway.

(As long as, of course, I continue to have support from others to bolster me, as it can be a very lonely road indeed.)

End of Summer entry

2010-09-11T22:46:00.000-07:00

I feel obligated to write some kind of end of summer blog entry. Okay, I want to as well as feeling obligated. I doubt I will have anything brilliant to say, but perhaps it will be meaningful, if I can sustain my attention to it throughout.

Oh, the humidity of it all: revisited

Back in May or whenever it was, four months ago, I wrote a post talking about the humidity and how scared I was of it. I was terrified of the summer. For a good six months I had been terrified of the summer. But you know what the good thing is from all that being scared in advance? By the time the thing actually happens, you've imagined the worst case scenario so many times, that anything that actually does happen pales in comparison with what you've imagined. Not to mention you've had all that time to psychologically prepare yourself and get used to the idea. When it finally happens - as the heat and humidity did this summer - you just deal.

And deal I did, but with some better cards in my hand than in past summers. With a well insulated house that rarely got that hot, at least downstairs; a TV to distract myself with; and no real reason to actually go outside, except when we were at the beach, I found it a lot easier to deal with the summer and the heat and humidity that it brought than I had in previous summers. I didn't like it, but it didn't make me miserable and unable to function like it did three summers ago, either. Halejuah for overcoming one fear, and what happened to be probably the hottest and most humid summer in recent Maine history.

The Beaches and other Activities

I enjoyed going to more beaches than I could possibly name this summer with my friends Nate, Rob and Ryan. I honed my photography skills and learned to relish the act of taking pictures, of every conceivable place and opportunity, and posting them to share. Crescent Beach, Two Lights, Fort Williams, East End Beach, Popham (with my dad), Willard Beach/SMCC, Higgins, we went to all the good ones. Then there were the festivals: the Clam Festival in Yarmouth and the Windjammer Festival in Boothbay Harbor. And of course, we went to the lake at my dad's house to swim a couple times, which is always a fun and enjoyable thing to do.
I've got enough pictures of this summer to make a very, very, VERY large album, let's just say that, lol.

The Relatives

I got to see many relatives over the summer, which is something that I enjoyed. My granparents on my dad's side visited for two weeks in the early summer, and I spent three full days with them, memories I will have forever. My dad's cousin and his wife, Steve and Gail, came a few times, and I saw them once. My dad's old friend Bob came twice and I got to see him both times, once when he had his kids and grandkids with him. My mom came to visit at the end dof the summer, and we spent a day together. It was nice feeling like a part of a family when I got to spend time with all these relatives.

Challenges Overcome

I managed to acquire several new pairs of clothes and start to overcome some of my problems with wearing more than one piece of clothing and other issues related to clothing.

Ehh, this is a boring entry that I will end here but leave in case I find it a year later and actually want to read it. :)

May the fall bring more joys and challenges, more growth and life.

The Uncharted Path: A Book Review

2010-08-26T23:30:00.000-07:00

For those of you with Asperger's or autism, do you remember what it was like when you first got your diagnosis? For parents, have you wondered what was going on in your autism spectrum child's head? Rachel Cohen-Rottenberg's new book "The Uncharted Path" explores these questions and more. Cohen-Rottenberg was 50 years old when she was first diagnosed with Asperger's Syndrome. Her book is a wonderful and insightful exploration into a childhood living with undiagnosed Asperger's, and what it means and feels like to be an adult woman living with autism.

Cohen-Rottenberg always felt the odd one out at school, never able to make friends like all her peers seemed to be able to. The behavior of other kids was confusing and frightening to her. Nothing made sense. High school was an even more difficult and overwhelming place to be. Cohen-Rottenberg tried to mask her social deficits by copying the behavior of other girls, and to an extent, it worked. The many problems she had with the social world, however, persisted. College was an overwhelming place where she felt like an alien and no idea how to interact with others. So Cohen-Rottenberg escaped to Berkely, California, where she found a more accepting culture and group of people. Eventually, she found a successful career as a technical writer and got married. And then, at age 50, came the diagnosis. And that changed everything.

Cohen-Rottenberg's strength in this book is being able to let you get into the head of someone with Asperger's, and show you exactly what they think and feel. Others with Asperger's will gasp in recognition at so many descriptions that so well parallel their lives. Friends and family will gain much needed insight into their loved one. Cohen-Rottenberg is emotionally honest and skilled at relaying the stories from her childhood and adulthood that made her the person she is today. She aptly conveys what it is like to discover at age 50 why you have felt different from your peers all your life, and engages the reader fully as she describes how she had to learn to accept that her life was actually going to be a lot different than she planned it. She leaves no holds barred as she talks about the puzzling conundrums that come with an Asperger life.

"Unless someone tells me so explicitly, I cannot tell whether a group has accepted me. And even if someone tells me outright, how will I know that tomorrow that acceptance will remain? Certainly, I can look back and see that yesterday people liked me. They smiled at me. They joked with me. They gave me compliments. I felt reassured. But what about today? It’s a whole new day. What if today is the day that I screw up and have no idea that it’s happened? What if today I make a mistake, and I’m cast out?"

"Okay, smile. Make eye contact…No! No! Not that much! Pause. Say something helpful, but don’t jump in too fast…Wait…Wait…Now! Say something clever…Very good. People laughed…Now, make more eye contact…Okay, good. Act like you’re following the conversation…What? It’s winding down already? How do I exit gracefully? Help! Help!…Um…er…Time to walk away? Okay. I’m walking away now…Why do I always feel like such an idiot?"

Ultimately, though, Cohen-Rottenberg's book, "The Uncharted Path," is about coming to terms with a life that you never expected would happen. It's about learning to reframe who you are, and reframe your sense of self. It's the fine art of learning to change your expectations of how much you will be able to do at any given time, and not hate yourself for your limitations. It's the struggle of looking at your peers, and trying with all of your heart not to compare yourself to them. To accept and love yourself for your own unique gifts and strengths, instead of always wanting what everyone else has. This is a theme that will resonate with people far and wide - How do I accept myself? How do I come to terms with who I am? You don't need to be disabled or autistic to realize that Cohen-Rottenberg's words speak to the human condition that we all find ourselves in. A highly recommended read.

"I’d never wanted to be famous, but I once was full of promise. Could I have done the work my former classmates are doing? No, I couldn’t have—and yet, I can’t quite grasp why not. Intellectually, I know all the reasons: I know that raw intelligence isn’t everything; I know that I don’t understand or respect social politics; I know that I get overloaded in groups of more than two people. I know all of these things, but I still can’t quite understand what’s happened. The gulf between who I was supposed to be and who I am is so deep and so wide that my mind still can’t take it in and make any sense of it."

Rachel Cohen-Rottenberg writes about her life on her blog "Journeys with Autism," which can be found at http://www.journeyswithautism.com. To purchase this book, you can email her at Rachel@journeyswithautism.com

The rain, the park and other things (My mom comes to visit)

2010-08-24T20:51:00.001-07:00

I wanted to call this "Visit with my mom Part 2," because I remember writing an entry on this exact same topic at almost this exact same time last year, but, well, that was a boring title. My mom visited me in Newport, Oregon this time last year, and we spent the day walking around going to beaches, which was was great. This year, she came once again, and I hoped once again to spend the day going to different beaches, only on a different coast (Maine instead of Oregon) - but alas, the weather and my life circumstances had other plans.

Not that I minded, though, in the end, as we still managed to have a good day together. The first half of the day was unfortunately devoted to clothes shopping. I say unfortunately because, for me, clothes shopping is the LAST, and I mean the LAST, thing on this earth that I would want to be doing. But, well. It was time. Or, more accurately, my hand was forced. Longer story that I don't feel like going into, but due to my extreme sensory issues and chemical sensitivities, getting new clothes is basically an impossibility, so I haven't in years. I had like one-two pairs of clothing and that was it for the last few years. Probably haven't gone clothes shopping since high school. But, one of the parts of living with roommates is that you have to make compromises and be sensitive to their needs, and my roommates very strongly suggested (err, required) that I get some more clothes, so off to Freeport we were.

Great lobster roll and fried fish place on edge of Freeport

Freeport, just in case you didn't know, is Hell on Earth. Funny, I never thought so as as kid. I thought of the Ben and Jerry's and the Wilbur's Candy Shoppe and, well, that's really all I thought of, because most of the rest of it is preppy clothing stores or high end gift stores, and hardly anything redeeming at all. But as a kid, ice cream and candy were enough. :)

And LL Bean, of course. If anyone outside of Maine knows where Freeport is, it's only because the LL Bean flagship store is probably the most popular tourist attraction in the state. One of my favorite things to do used to be to go to the LL Bean parking lot in the summer and count how many different states and provinces I could find. I usually got about half of them! There was no shortage of out of state plates this time, either. We took the parking spot of a French speaking family from Quebec, who was just leaving, after we had circled the parking lot several times.

Freeport is at its heart a tourist town, with similar stores to what you might see in a mall (with some exceptions), so it's no wonder I don't really like it. I think it has a lot of outlet stores too, I think, so I guess people like that. I wouldn't know. Anyway, this time, it was MOBBED with people, being a rainy day in summer and all, and not only that but there was some smell that pervaded that whole downtown area that made me feel like I was going to pass out the whole time I was there. Needless to say, I did NOT like Freeport. My mom shared my opinion.
We both couldn't wait to get out of there. Guess we must be true Mainers after all.

At any rate, I was able to arrange for a "personal shopper" to meet me outside of LL Bean to look for clothes for me, so I didn't have to go in. Score one - or two or three - for customer service points for LL Bean, it was an excellent thing to do. We were right by a giant 14 foot LL Bean boot. Every few seconds random kids would climb on it to get their pictures taken by their adoring parents. There were so many kids and people, that a different kid sat on that thing like every 30 seconds. It was rather entertaining to watch, and kept me from going crazy while I waited for the clothes. I would have loved to get a picture, but didn't bring my camera due to the off and on rain.

I got lucky and found some canvas drawstring pants and and cotton tshirts, 2 of each, that worked, and then we got the hell out of there. The woman that helped us was very nice, though.

After a stop in Portland to check out another clothing store (2 pants) and go to Whole Foods for some resources (and a hair clip and ham for Marion), we were done with the shopping part of the day. Unfortunately, it was raining, lightly but still, for the first time in almost 2 months. Lovely luck, huh? We decided to go to Fort Williams in Cape Elizabeth to see the spectacular views of the ocean there anyway, and just brought along an umbrella. It was fun to walk on the worn dirt path alongside the crashing ocean waves, which crashed spectacularly in different patterns against the rock the whole way through. It was a short walk, and we eagerly made our way back at the end, eager to get out of the rain. The only other few hardy souls there all were tourists with cameras.

I remarked to my mom that, without even trying to, we had just gone to the 2 most popular tourist destinations in Maine - LL Bean and Portland Headlight (in the same place as Fort Williams.) Oh well, I guess sometimes they're tourist destinations for good reason.

No pictures as it was too rainy to take any.

Once home, I embarked on an ambitious and fervored campaign to wash the hell out of the clothes we'd just bought so I could actually wear them. I started at 8pm an didn't finish till nearly 3am. I seperated the clothes into 2 groups, and gave each group three cycles and a little time to soak. At 3am, I finished the last part and sighed in relief as I finally was able to start getting ready for bed.

I piled up all the clean t-shirts in one pile, amazed at the size of the pile, and the fact that I was actually looking at a pile of loose cotton t-shirts that would actually fit me and have a chance of being comfortable. I hadn't seen more than one or two of these very rare beasts in several years, and now I was looking at a pile of almost a dozen. It was a sight to behold - to me. It would mean absolutely nothing to someone who didn't know me. They'd wonder why there was what would probably seem to them a rather small pile of clothes sitting there, and why I'd actually taken a picture of it. But to me, it resembled quite an accomplishment.

My new shirts!

I managed to wear my first outfit today, and did all right in it. I am still very nervous about getting used to the new clothes, as that is hard for me, but I have the mindset for it, the desire and the drive, and the committment to ignore the discomfort for as long as possible at the beginning, knowing it will get better later. I *want* to have more clothes; it's just something that's always been difficult for me. I do not like declaring that something will happen before it does, so I will not make any predictions per se, but it looks like I am on the right road, and I look forward to the day where I can open a drawer of clothes and select one for the day just as easily as I could ten years ago, when my sensitivities were not nearly as bad (still there, but not as bad).

"We spent the whole day shopping," my mom said enthusiastically as we climbed in the door of my dad's house wearily, laden down with all our bags, "which was kind of interesting since Kate doesn't go into stores!" That sentence on its own could have mean a lot of things, and it mostly depends on tone of voice. But she said it with a laugh and a sparkle in her eyes, accepting the situation and laughing at the irony of it. Two years ago, it would have been much more likely to be an (understandable, for the situation) annoyed "What do you mean you can't go in stores? Why can't you? Can't you just for a little?" But this time, the acceptance was complete. I can only assume she saw the way I worked around my problems and still achieved the same means in the end, and accepted that this was the way I was, and was genuinely okay with it - or so it seemed. Such a simple statement, but to me it conveyed so much - acceptance, humor and joy. I was happy to share those qualities with her.

Before we left my dad's, we were greeted with the as of late rare gift of the sun, and took several pictures. My dad showed my mom how to use her new camera, while I documented the experience. I took as many cute kitty pictures as I could, as those are always fun. So somehow, I still ended up with 80 pictures; not bad for a mostly rainy day.

Eighty pictures and a lot of memories, that I can store for the future; of a family that loves me enough to step up to the plate and help me out when I need it (the clothes), who are understanding of my rather extreme at times needs and quirks, and try to accomodate them, and who are a part of my heart. You know that feeling when you didn't realize you were missing something until you find it again, and then you're delighted at how well it fits, how easy it is, how familiar it is, and how glad you are for the person in all their quirks and qualities that couldn't possibly belong to anyone else? Their sense of humor, the way they see the world, that is in some ways so close to your own? That is what seeing my mom was like; so although it might have rained, and although we didn't see every beach in Cape Elizabeth, and even though I had to spend half of it clothes shopping - it was still quite a good day.

My mom and dad: this picture came out awesome!

Bonus question: Does anyone know where the title of this post came from?

Book Interview

2010-08-10T00:56:00.000-07:00

Just a quick post to point you to this book interview I just did with Jess of Diary of a Mom fame. Hop over here to her blog to take a look! Jess's blog is excellent, so you may want to stay a while.
http://adiaryofamom.wordpress.com/2010/08/09/listen-i-never-said-i-was-oprah/

A longer post to follow at some time later, I promise! Too hot to do much thinking in the summer. I hope to get my brain cells back by fall!
Kate

On the Matter of Empathy

2010-07-24T21:15:00.000-07:00

I very much want to write this entry. I have not been able to focus of late. I believe it is the air. It is driving me crazy. I feel like there is a physical weight on my body and mind and it makes it hard to even type or keep one train of thought for very long. But for some reason even typing continuously lately, much less doing that WHILE keeping a continuous train of thought ,has been hard. So, I am going to try very hard to do this.

This is a topic that has been brewing in my mind a lot lately - actually, on and off for the last month. I very much want to get it down on paper, so to speak.

The story starts on the night that I learned Madeline (pen name for my roommate), had gone into the hospital. She is 93 , and her ankle was swollen and bleeding. I did not know this all day Friday, until M (her son and my other roommate) came home around 9:30 to tell me.

That night, I was in a bit of shock. I felt so bad for her. I care very much about Madeline and am closer to her than a lot of other people. I feel a connection to her even though there's not a lot we have in common on the outside. So , that night, I was feeling very badly for her. A hospital is not a nice place for anyone, but especially not when you're 93. I kept remembering the stories she had told me about one time years ago that she had been in the hospital, and how much she hated it, and especially how bad the food was. I imagined her in that hospital room, lonely and frustrated and.... well, the main thing I kept thinking was alone. Maybe that could partly be attributed to my own hospital stay, years ago, 13 in fact (!!!), where the primary thing I felt was loneliness. I just hated beyond belief being there while everyone else was living their lives. It was not a pleasant feeling. So accurate or not, I ascribed it to her. And I thought of the food, of course. And I felt a sense of....powerlessness, of wanting so bad to just do something to help her, to make her feel better, to make her happy in some small way, but knowing there wasn't anything I could do. I couldn't help that she was in the hospital, of course. I could write her notes and send her small gifts - and I would and did - but that wasn't enough.

And somewhere in that night, as I frantically IMed disjointed thoughts to a friend while trying to process everything, I realized something. This feeling of wanting to help and feeling bad for someone ... a feeling that it seems for many people is hard to put into words... is probably what OTHER people felt towards me when I was in emotional distress or had problems, and they wanted to help me, but didn't know how. Or thought there was nothing they could do. In that instant, I caught a brief glimpse of what I SHOULD have been feeling all of those numerous, probably hundreds of times that people had tried to unsuccessfully comfort me. Why was it unsuccessful? Because for whatever reason, most people can't put their feelings into words. There seems to be an unspoken agreement among NTs, furthermore, that they don't NEED to put their feelings into words, because their feelings in certain circumstances are automatically understood, since they are "typical" (???) and commonly understood feelings for certain situations.

Now, take me and most other ASD people. We do not know what the "typical" feelings to have in any given situation are. We have absolutely no clue!! We need to hear verbally, in words, in very definite and descriptive and precise words, exactly what someone is feeling to have any idea in hell what they're feeling. We can't tell from their face. We can't guess - or if we can, it's a very rudimentary guess. If we're lucky and experienced at this, we can make a logical assumption, but logical assumptions, I have to say, are not very comforting.

I have always needed to hear the WORDS when someone is trying to comfort me, but here's the thing. Most people don't have words. And that proved disastrous to me, time after time. Because I would be crying, I would be revealing highly emotional things, and I'd look across to where the person was sitting. As far as I could tell, they weren't responding at all. They weren't listening. They didn't care. They didn't understand. (When in fact nonverbal language was probably saying otherwise.) This feeling of aloneness and isolation that this realization - they don't understand- brought on made me feel 100 times worse. In fact, if often made me cross the line to hysterical. Which would scare them and make them become even more remote (and brand me as the world's biggest baby), which would reinforce the cycle, and it'd go on and on .... sometimes only until I had exhausted myself in hysterics. I shudder to think about it. Relationships get ruined this way. Over a simple misunderstanding of communication. Of not being able to read each other, but thinking you can.

If I apply this newfound knowledge to this situation, I can get a glimpse into what they were feeling. Empathy. Caring. Wanting to make things better, but not knowing how. Powerlessness. But they didn't know how to put these into words, and I honestly had no idea they were feeling it. It might sound thick, but it's the truth. Autism is in so many ways a disorder you have to live out for an awfully long time before you figure out all the many and myriad ways it affects you and the people in your life.

I have a pang of sympathy and understanding for these people in my life now, when I think about this. Maybe a fleeting feeling of connection. But that's all - fleeting. This knowledge is still too new. It's like I got a glimpse of it and that's great, wonderful, but it will take more than a glimpse, I'm afraid, for me to be able to put it in practice. But I will try. I will try to remember what I felt like about Madeline the next time I'm trying to figure out how someone is feeling about me. I don't know if it will work, but I will try.

Why is autism all about having to make logical connections in the place where in others, emotional connections exist? I don't know, and I'd really like to. But it's like building the brain from the ground up, and if the autistic person does not have particular experiences to rely on to understand what a particular emotion feels like , then they might be able to understand it logically, might in time learn that this is what people are *supposed* to feel, but they will never really feel it, in themselves or others. And this lack of emotional feeling about others - this lack of connection, this wall - is in many ways it seems the heart of autism. So many connections need to be made in the autistic brain - and unfortunately the experiences, friendships and social experiences an autistic person needs to make them are so often missing, not from any fault from the parents or others, but just because the very traits an autist poses makes them far more unlikely to make these kind of relationships.

You may think I am saying that autistics don't feel emotions towards others. I am NOT saying this. The myth that autistics are not capable of empathy is pure bunk. BUT, I am beginning to think, it might have to be learned. I think that all emotions autistic people (or most autistic people) feel towards others are based on emotions they have felt themselves; and if they have not felt those emotions themselves, because they are missing the social experiences to have created them or are just developmentally behind, they won't feel them.

So this makes it critically important that people with ASD be exposed to a wide range of experiences, BUT. Shoving them into experiences unprepared isn't going to do much good; if a person is scared and afraid, as many ASD people are about new experiences, they will shut
down and not be able to connect with anyone or anything. So the key is to figure out a way to expose them to new things while they're in their comfort zone, while they're relaxed enough for their brain to be able to make the new connections. I.E. it's safe to care about this person; I like this person; she is not a threat; several months later....hey, I actually feel connected to this person! Fear and anxiety will prevent these connections from happening. But how to do this? I have no idea. Sheer, dumb luck is what it seems to come to; unless you can use your child's speical interests to manipulate or set up friendships or opportunities for them in places they feel comfortable....it would be a hard thing to do, it seems.

Okay, needed a little break. Let's see if I can finish. A good example of this is a person who is very close to me who I shouldn't mention in case this story is at all offensive, which is not intended to be. For years, I have called this person up and talked to him about a great many topics. I love him very much. And he usually understands me quite well, a fact I find quite comforting. But there is one thing that he doesn't understand, which has always puzzled me. If I am upset over something, I want people to react verbally and/or visably - NOT because I want to "manipulate" them in some way or make them feel worse than my news might already make them feel, but so I can UNDERSTAND what they're feeling and I don't have to feel so alone. It seems obvious to me , but for some reason to many it is not. ANyway, so many times I talk to this person and I mention something I am upset about. If this person does not react, or does not verbally tell me how it makes him feel, I often get very upset, because I have no idea what he is thinking. For all I know he could be thinking very critical things of me like that it's all my fault. So I ask him to tell me how he feels, and he says "You KNOW I feel bad for you, you KNOW how I feel, why are you always asking? You should understand!" He seems to feel very firmly that I should know his feelings. But I don't. I don't know. And even if he's been able to understand and sympathize with my feelings a hundred times before, how do I know he does this time? This has always bothered me, and of course him too. I suppose it is two different ways of thinking.

It seems that not only is it very hard for autistic people to understand that there is a different way to think, it is just as hard for non-autistic people to understand that autistic people, especially ones that are seemingly very smart in other areas of their lives, could not understand something as basic as this.

Again. You learn by doing. You learn by experiencing. And for some people on the autistic spectrum, it can take 20 years or more to even start to understand and experience something most kids probably do at age 4 (or whenever). That's why they call it a developmental delay, I suppose.

I have heard many ASD people say they have trouble connecting with and feeling close to others. I feel that if you protect yourself too much an never get close to anyone - even if you don't realize you're protecting yourself- , you never feel what it is like to feel close to someone - and so therefore you can't feel what it is like for them to be close to you. If that makes any sense. It is not ASD people's fault that they have trouble making friends - but it does seem to be a vicious cycle in many ways. You can't just turn defense mechanisms off when someone asks; I think the situation has to be right for them to fall away.

Most people with ASD are quite smart in other ways, though. They find ways around their blind spots. The therapist who diagnosed me told me something like, "Instead of understanding things intuitively, you make these logical connections in your brain - but you make them so fast, it's sometimes hard for people to see that you had trouble understanding the concept in the first place." Or something like that. The only problem is - logic can only take you so far.

I wasn't a big fan of this therapist in some ways, but I always thought that was an intelligent statement. If I ever get the ability to go into buildings back, I would really like to see a therapist. I have been recommended one who sounds good, too. Maybe in the fall when the heat isn't stressing me out so much I could try. Maybe.

Anyway...more thoughts about my life. These do not apply to all people with autism; they are just my life and experiences as I see them.

2010 Yarmouth Clam Festival

2010-07-17T21:45:00.000-07:00

Today was the long awaited Yarmouth Clam Festival, a tradition in Southern Maine every year. I am sure it's got to be one of the biggest festivals in Maine. The Clam Festival was what I missed most about Maine the last two summers; it was always just such a part of my growing up experience that I hated to miss it. I've been looking forward to it for at least six weeks and despite all my nerves, had quite a good time in the six hours N, R, R, I and various other AS group members spent there today.

Nate picked me up and we arrived there at about 1. Or, I arrived at 1, the rest arrived around 1:30, which is kind of a longer story. It was so exciting to see the street with people lining both sides of it (waiting for some kind of firefighter demonstration), and the famous HUGE food court with its red and white lettering to one side. Fried Clams! Strawberry Shortcake! Fried Dough! Soda! etc. There are probably about 20 stands and they go in a semi circle around a picnic eating area. On one side is a tent where concerts go on called the Memorial Green.

On the other side were the rides, and tons of them. What sheer eye candy! I walked around snappy pictures, trying to capture the essence of the amusement park, the essence of the spirit pervading the place, the joy and action, the colors and fast speeds. The cotton candy, candy apples and fried dough mixed in with the arcade games and colorful, whirling, spinning, as fast as the eye can see, guaranteed to make you barf rides. It's an interesting kind of meditation to be wandering around not focusing on the rides themselves, but on documenting them in pictures. It's relaxing, actually, and that area of the Clam Festival, with its long line of games on one side, is always fun to wander.

I wandered back to the area with the food, and ran into Nate and the group without even trying to. Pretty surprising in a place as big as this. We got some chairs and sat for a bit while we waited for No Banjos, the 2pm concert, to start. A fellow Aspie group member was in the band.

I have to say it was relaxing, to sit there in the shade in a comfortable chair, with friends, and listen to good music. It was covers of 60s classics,mostly British. It was too short - only 6 or 7 songs - but fun. When they did Last Train to Clarksville by the Monkees, I got up and danced, as I love that song; Nate even got a picture. It was followed by a high activitiy up-tempo Beatles song (maybe All My Loving but I can't remember) which I enjoyed just as much. The rest were down-tempo and mostly unfamiliar, so I stayed seated, except to go to the front to snap pictures of the band. :)

At 3, we went over to the rides to explore. There was this super awesome thing I found on my first walk through - they put you in huge plastic bubbles!!! and put the bubbles in the water in a large swimming pool. They put you in, zipped you up, and then inflated the bubble with air! You could then roll around the pool . I actually thought it looked like it COULD be a lot of fun but the idea of being trapped in a giant plastic bubble was a bit too claustrophobic to consider. It was, however, a LOT of fun to watch, and I was very pleased when both N and R agreed to go in!
Snapping shots of them in their plastic bubbles was just awesome, a creative challenge, lol. Never seen that before, must be the new thing.

We tried to get tickets for the ferris wheel; however after a long drawn out process to find and buy the damn things, the one ride I wanted to go on was closed. Oh well. Some of us got things to eat and we headed to the games. There were 5 new Aspie group members I had never met there , well, I think only 2 who stayed with us but still. 3 of us tried the balloon dart game, which has always been my favorite. One of the other girls said to me "I'm just doing this because this is what I used to do when I was a kid," and I said, "I'm doing it for the exact same reason!" I got a big fat red balloon on my 2nd try. The very friendly older operator of the game gave A and I the kids' rate even though we were both in our 20s, lol - so we both got a medium sized very cute stuffed dog and as many tries as we needed to get it! :) Best, and by that I mean least crappiest and certainly biggest, arcade prize I've ever gotten.

We then headed uphill to the craft festival. Fortunately, the hill was not as formidable as I remembered it, nor the weather as torturous as I had feared. The craft festival, while still as big as ever, was actually quite boring, but this was all the more for the better - I only had 40 min to get back to the Blaine concert, so "boring" was welcome for once.

We sat down to relax for 15 min before we trekked down the hill again for the Blaine Larsen concert. Or shall I say, I trekked down. They got stuck somewhere halfway down and I left them in the dust in my eagerness to see my beloved Blaine. :)

Blaine Larsen is a 24 year old country singer who first hit it big about 6 years ago with his haunting song "How Do You Get That Lonely," a follow- up to the just as amazing , goosebump producing "In My High School." When I was in college, I got a friend to take me to see him at a local mall and it is one of my happiest memories of college. It was a very intimate concert of only maybe 30 gathered around in a decrepit, falling down mall to see an extrodinary singer.
I loved it.

So when I heard, a couple weeks ago, that Blaine would be at the Clam Festival FOR FREE, in another small intimate setting, I just about went crazy. I had eagerly awaited it for weeks and couldn't wait to tear down that hill and get to Blaine. Finding a place to sit was difficult at first, but ultimately prosperous. I started on the bleachers on one side, discovered we were permitted to stand at the side and watch him from 2 ft away, went back to bleachers to rest, and ended up watching him from an even closer distance on the other side of the stage for his last song. Not bad!

He started with some song I didn't know...then went into I Don't What She Said, which I did know...1-2 more songs I didn't really know (his voice still sounded good but I much prefer familiar songs), then into "It Did," a song I really like. I ran to the side for that so I could get a good view and have room to move around and sing along. :) After that I felt better cus I figured whatever he sang after I'd at least gotten one good song in. He did a couple more ones I didn't know, THEN, came the moment I had been waiting for. "This is my very first song that ever went to radio, about 6 yrs ago, I wouldn't be here if it wasn't for this song..." My ears perked up and I ran back to the front from where I had been sitting.... it was time for the hauntingly beautiful "How do you get that lonely." I saw him sing it 6 yrs ago in Baltimore, and now the circle was complete by seeing him sing it again in my home state of Maine.

He finaled, of course, with his current single of "Chillin'", a popp-ish summer kind of song that has caught on mostly because it is a pop-ish summer song that doesn't make you think. Not my favorite song, but a decent one still. I was right in front of the stage snapping a picture when someone (from his staff) came out and dropped a huge tin of water on him! It was a joke because the song was about "Chilling." Everyone laughed. Blaine said, "Oh, so is THAT why you asked me how expensive my guitar was earlier?"

He then resumed the song, to much applause when he was finished. 50 min approx. Great show overall. Then it was time for autograph signing - I was one of the first to get to the WPOR table in the back, so I got very lucky - I noticed people were getting their pictures taken with him so I called Nate and asked him to come over and take a picture of me with him. Which actually worked! I didn't even have to wait that long, and I got to talk to him - I told him I' been at the Baltimore/Towson show and he said "Wow, that was a long time ago" and that I liked the song In My High School; he thanked me profusely. Then I asked for a picture and N got a great one! In my head last night I was dreaming about how cool it would be to have a picture taken with him but I didn't think it would actually happen!

Kate with Blaine Larsen!

It was too late after Blaine to do the other 60s concert or any rides, which was fine cus I was pretty tired by then. So we sat by the food and chatted for a bit before we left. We were all pretty tired.

I enjoyed the feeling of connection, of having other people to do stuff with. It was funny trying to do it with a group of 8!!! But we all moved together very well actually an people got along too.
At any given point we were always trying to figure out where someone was ("Where's N? Where's R?") lol but we found each other and reunited pretty quickly. It was a nice feeling of belonging to even have people to worry about missing in the first place.

So, I returned to the house hot, tired and more sunburnt than when I left - although not signficantly so - but overall happy, although it took some time to process this all.

Ready for several days of relaxing, I hope, and returning to a normal sleep schedule. Weather still hot, challenges still many, but I hope to use days like this, as overwhelming on some levels as they can be, to propel me forward and give me something to look forward to during those times when everything else seems to be going badly.

Happy middle of only six weeks left of (yay) summer.
Kate

Kate playing with darts

Sebago Lake

2010-07-11T23:01:00.000-07:00

Time for another photo essay. It has been very hot and humid here in Maine and the entire Northeast. I do not so much like it, as seems to be the opinion of most people. It's been crazy....high 80s and low 90s with record breaking humidity for days on end. Originally I thought it would last just 3 days, then a week, now it seems like, well, let's just say I might have to get used to a new kind of July. I have heard the humidity is suppose to temporarily go down for one day tomorrow, but with a high temperature of 88, that isn't much of a consolation. Sigh.

However, today after a week of wanting to, I finally was able to go with my friends N and R to the lake at my dad's house. He lives on Sebago Lake, the second biggest lake in Maine. With a floating dock, noodles to swim with, and kayaks, it is many ways a perfect summer destination.
I had not been swimming in about three years, a huge shame because I absolutely love swimming. When I was a kid, I was never happier than when I was in the pool. Before the humidity started bothering me, I was in the lake a lot during summertime when I was at my dad and stepmom's. Then I was in Oregon one summer and Montana the next time, so it had been a LONG time since I had been swimming.

You know how they say the phrase "easy as riding a bike" or how people think once you learn how to ride a bike, you never forget? Well, I'm not quite sure about the bike part, but I know swimming is like that. It's a beautiful feeling, to be able to pick up something so easily that you haven't done in years. The water felt cold when I first went in, as it always did, but then it felt great; soothing, surrounding you as if in a big hug. The dock was still the same; the metal bars are great for grabbing and playing around. I dunked my head in and the rush of cool water was delightful and surprising. Thus baptized, for lack of a better word, I set out to swim to the floating dock, following N and R.

Here's the other thing that surprised me: how easy swimming was. I had been afraid that
swimming might be too hard after not having done it for so long, or more likely, that I would not have enough breath to swim because of the air quality (which was thankfully okay today).
But it was so intuitive; reaching out to the water and saying "Here I am," reaching out to the water and pulling it toward me, just a few easy strokes with my arms and look how far I've gone!
Holding on to the floating dock and gasping for breath, waiting to catch my breath, just like old times. (It seems easy until you stop, lol.) I couldn't swim very long before getting out of breath - but that was true before too - but what I could swim, I enjoyed.

So we sat on the floating dock for a while, entertained by each other's conversation and the sun and water around us. I jumped into the lake from the dock for old time's sake. I was actually kind of nervous doing that. Took a few minutes to get up my nerve. But it went fine, although due to the force of impact it's something I'd only do once. I used to love the feeling of shooting underwater, feeling the water get colder as I went down further, and seeing how far I could go down before I had to go up again. N said he thought I was never going to come back up again. :)

We returned to the shore and the dock there, and grabbed some colorful noodles to sit on and play with, another thing I always used to love. The only thing I didn't do this time is swim on my back, because the water was too rough and would have gotten in my ears and eyes. Come to think of it, it'd get in my ears either way, so swimming on my back may not be a good option.

N, R and I

We also had some fun on the hammock. Rocking back and forth on that thing is about the most relaxing thing I can imagine, and I intend to do it more when I have clothes instead of a bathing suit on, which I figure will be more comfortable.

We had some of my dad's special house-made smoked pulled pork (heat and humidity and pulled pork, Gee, this place is getting more and more like the South every day. If I see someone serving sweet tea, I'm going to run. lol.) Then we went to Whole Foods, N did some shopping for his stepdad while I grocery shopped. I thoroughly enjoyed shopping in an air conditioned environment. Whee!

The only thing that will take some getting used to is this sunburn - which of course I didn't notice until I was home and saw it in the mirror, isn't hat always the case. I have the classic bathing suit strap marks - lol been a long time since I had those. I don't think it's a particularly bad one, but it's definitely more moderate than the very mild ones I've gotten so far this summer. Ie I can actually feel it. But hopefully if I am patient and wait patiently a few days without getting upset, it will go away. It usually does. We went so early in the day, we were there at 1, that it was unfortunately prime sunburning time. I wonder why you never feel yourself getting sunburnt till you are.

My stepmom gave me an old bathing suit that she had which I was very happy about. It fit okay and is the most beautiful shade of purple. I don't love wearing bathing suits, but they are a necessary evil for swimming.

I felt quite good, although tired, when I got home; but then I tried to watch 60 Minutes and I was falling asleep in the chair, so I went upstairs to rest .

I am afraid it may be another unseemly hot and humid weather week coming up so I will have to gather all my patience to get through it again. Patience is key. Then next Saturday is the Clam Festival I have been waiting for for months. The one thing I probably missed most about Maine the last 2 summers. Let's just say I will kill the weather gods if there is not passable weather that day.

Kate

The Long Journey Home

2010-06-27T22:11:00.000-07:00

I wrote this as a possible editorial for the local paper. The idea is use two elements: a) human interest story and b) message to be grateful for what you have, to turn it into an editorial; and the goal is to get it into the paper so that the byline with the info on how to buy my book, which describes the events in my editorial, gets in there too. Whether it will work or not, I don't know, but I can certainly try!

The Long Journey Home

What does home mean to you? For two years, I had no real definition of or sense of home. I moved anywhere from every few weeks to every few months. I couldn't stay in any one place long enough to plan a dinner out, make friends, or have any sense of roots or belonging.

Why did I move so much? I have a condition known as multiple chemical sensitivity, or MCS. People who have MCS have extreme physical reactions to fragrances and chemicals in minute amounts. For example, perfumes, lotions, cleaning products, new carpet or construction, pesticides and air fresheners, among many other things, can all be a big problem. Even the residue from these things can enough to cause mental and physical deterioration.

At 24, after living with my parents in Standish for as long as I could, I couldn't find any apartments or roomshares that worked for me in Maine. So I set off on a journey across the country to find something that would. I used Craigslist or other MCS websites to find other people with chemical sensitivities who had houses that would be compatible with my needs. In this way, I ended up living in eight cities over two years: Burlington, Vermont; Liberty, New York; Missoua, Montana; Newport, Bend and Eugene in Oregon; Ballston Spa, New York; and finally back to Maine where I currently am, in the greater Portland area.

There was another complication. I have Asperger's Syndrome, a high functioning form of autism. This sometimes makes it difficult for me to communicate effectively with others, understand social rules and norms, and tolerate a lot of sensory stimuli (such as noise, certain kinds of weather, smells, fabric textures and so on). The two years I spent traveling from place to place were a challenge, but they taught me a lot about the world and my place in it. I learned the power of my own strength and the value of human connection.

But I longed for Maine. I yearned for the certain "je ne sais quoi" that is my home state. The fresh air, the rocky coast, the forgiving forests. The newspaper that had been narrowed in width by 1.25" years before, causing quite a ruckus; Monument Square, where the open space and familiar shops caused my heart to soar like a bird above the clouds; the narrow cobblestone streets of the Old Port, the radio stations I had been listening to since I was a teenager, and people who knew what real seafood was. I longed for street and city names that made sense to me, the festivals of my youth, for people who knew me. I longed for a city and an area that I had a history with.

The Oregon coast was magnificent, and I learned a lot from the woman who I lived with there. Staying in an ecovillage in Eugene was an experience I will never forget. Vermont and New York were interesting in their own ways, but they weren't home. I felt out of place, like my heart was living outside my body. But because I knew that any given living situation was the best I could do at the time, I stayed.

And then, six months ago, I was finally able to find a living situation that worked for me here in Maine. Finally, the air that had seemed so oppressive in upstate New York felt crisp and clear; the places and people that surrounded me were at once familiar again; and much of the anxiety and angst I had been carrying around with me melted away. By chance, I ended up only a few miles from the house I had grown up in. It felt like coming full circle. I am grateful every day that I live in Maine. Within half an hour in any direction, I can visit a dozen stunningly beautiful beaches; hike in another dozen wondrous hiking spots; buy organic food, wander the streets of the Old Port, and find a community with values that I share.

I took for granted living in Maine before I was forced to leave.
I took for granted the things I was able to do before my chemical sensitivities disabled me in many ways. Now, I try very hard not to take anything for granted, and despite my disabilities, I enjoy life more than I did before my problems started. My hope is that everyone reading this will take a minute to think of what they are grateful for in their lives, and make a point to appreciate it every day.

Kate Goldfield is a freelance writer living in the greater Portland area. She has just published a book about her travels across the country, "Common Scents: Adventures in Autism and Chemical Sensitivity," which is available at http://kategoldfield.webs.com . You can email Kate at KGoldfie@gmail.com .

Asperger's book finished!

2010-06-26T01:18:00.000-07:00

Hello all,

I am excited to report that I have finally finished the memoir I have been working on for the last six months, Common Scents: Adventures in Autism and Chemical Sensitivity. It has been a long journey from inception ("Hey! I could write a book!") and thinking of the perfect title ("Well, I have to write it now, because that title would be perfect for a book") to the months of struggling to write it and the following months of figuring out how to best publish it. My sixth grade teacher told me frequently, all those years ago, "Kate, I'm going to see your name in print some day," and I always laughed at him. Yeah, right. When I got older, people told me I would write a book one day. I wanted to, but I never felt I had enough material. Until six months ago, when I finally figured I had a story to tell, and was in a good enough place to write it.

"Common Scents: Adventures with Autism and Chemical Sensitivity" is the story of a young woman's search for physical and emotional safety as she journeys through the mountains of the Cascades, small coastal towns on the Oregon coast, and out-of the-way towns in upstate New York. Along the way, she experiences things she would never have dreamed possible had she stayed in her Maine hometown, and begins to learn the power of human connection."

From the book's website (http://kategoldfield.webs.com)

"It's a tale of adventure. A story of growth. A look into the human psyche, you might say.

Growing up is hard for everyone. It's even harder for those with autism or Asperger's Syndrome (AS). Things that everyone else takes for granted - social interactions, being able to navigate a busy grocery store, making friends - are significant challenges for people with AS. It's harder still when you have to deal with chemical sensitivity as well. Suddenly, no place is safe anymore, because people's perfumes, lotions, and shampoos, as well as cleaning products and fragrances in stores, make you so sick that the normal activities of life become almost impossible.

So what happens when a 22 year old with both autism and chemical sensitivity leaves college and tries to make her way in the world?

The book starts in the spring of the author's senior year of college, where she is forced to leave school because of her growing chemical sensitivities. With much regret, she moves home and spends several months living with her parents.

Desiring independence, she tries to live in several apartments of her own in downtown Portland, Maine. Unfortunately, something in one of the apartments makes her sensitivity to chemicals so much worse that she is not able to tolerate any apartments, nor her parents' house.

So her journey for a chemical free living environment starts.
Primarily using the website Craigslist to find roommates who already live a chemical and fragrance free lifestyle to live with, she travels to cities across the country to pursue this goal. She starts in Burlington, Vermont, and goes to Missoula, Montana; Liberty, New York; Newport, Oregon; Bend, Oregon; Eugene, Oregon; Ballston Spa, New York, and finally back to her hometown of Falmouth, Maine.

In each of these cities, her eyes are opened to the way the rest of the world lives. Each city is a separate chapter. In each city, she recreates the experiences that changed the way she sees the world. In each city, the author talks about the people she meets, and details her struggles and successes with interacting with the people around her.

If you want to learn more, please go to the book's website at http://kategoldfield.webs.com
If you're interested in purchasing, there is a purchase link at the end of the site.
PDFs are also available and Paypal payments can be accommodated by emailing me at KGoldfie@gmail.com .

If you've enjoyed my blog, I know you'll enjoy my book!

Thanks for reading.

Kate

Boothbay Harbor: The Maine Black Bear thanks you too.

A Day at Crescent Beach

2010-06-25T17:04:00.000-07:00

Kate at Crescent Beach in Cape Elizabeth, Maine

I wrote this about a week ago and then forgot to post it, so here it is.

A Day at Crescent Beach

Nate picked me up at 2:30, and we had the good fortune of both being ready at the same time for once. We made a quick stop on the way to Crescent Beach in Cape Elizabeth at the Gay Pride festival. I hadn't been to it in years, so I was very curious how it would be different.

The first thing we saw was the giant, beautiful Deering Oaks fountain. I can't remember the last time I saw that thing on - then again it's been years since I was in Portland for the summer. It was so beautiful! I immediately took out my camera and began snapping pictures of everything around me. The wind brew the spray from the fountain on me so I actually got a little wet, which was wonderfully refreshing.

As I had suspected it might be, the gay pride festival was a photography gold mine. Not as much as a big city one would be, and hardly anyone dressed outrageously (surprisingly) but still.
I took a picture of some drag queens sitting at a picnic table, a brief one of the stage where the music was coming from (very brief because that area was very smelly/fragrance and cigarettes), and wandered into the area for organizations and vendors.

The last time I went, several years ago, the Pride festival had only one food vendor - an ice cream truck, which I must say , pissed me off to no end (I had been looking forward to fair food), and maybe one vendor selling pride crafts, and then half a dozen organizations.

This time, they had branched out (Deering Oaks is a large park), and there was probably half a dozen food vendors, maybe a dozen crafts vendors, and around a dozen organizations. It was very fun to wander from table to table in a White Rabbit-esque daze and see what each new table had! I have always LOVED that about festivals; the surprise and joy of looking at all the different tables to see what they had.

I made a spider out of multicolored pipe cleaners someone was handing out. Much fun. I used to love pipe cleaners as a kid.

After about 30 minutes, we'd all had it, and so we continued on our way to the beach, a perfect ancedote to a hot day.

Crescent Beach

We had chosen Crescent Beach for our outing based on the reputation of Cape Elizabeth for having amazing coastal attractions and also for wanting to try somewhere we hadn't been before.

When we went through the gate, I could not believe what I was hearing when we were told it'd be $18 for us to get in - $4.50 per person! I had thought there might be a $2 or $3 fee, but nearly $5 seemed to be pushing it.

As we walked to the beach, we said, "This better be worth it."

It was.

My first sight of the ocean and the roaring waves sent a jolt of excitement through me. It was so amazingly beautiful. The breeze and cooler coastal temperatures made the temperature just perfect; the sun was shining; and best of all, there was a fierce breeze which felt just wonderful. All around us, kids were playing in the sand and water. It had been years since I was on a proper beach in the summer - I'd been away the last two summers, and we tend to stay at my dad's in the summer because we have the lake right there.

I again grabbed my camera and started taking pictures of everything in sight. More photographic heaven. The waves, the kids making sand castles, the baby wading into the tide pool - all seen through the frame of a camera and captured as beautiful memories forever. The five of us walked on the edge of the shore, where the sand was packed down (most of us agreed loosely packed sand was hard to walk on), towards the end of the coastline. We watched a seagull make off with several food items - I ran to try to catch him on camera, but I think I scared him away. In due time, we made it to a rocky part of the coast. More heaven! There is nothing more that I love in life, I am pretty sure, than climbing on rocks. Something about it makes me feel so good. It's probably a sensory/cognitive thing on some level. Maybe it's because it requires hand eye coordination - a physical work out with the mental challenge of watching where you're going and planning every next step!

At any rate, this was a beautiful set of rocks. The colors on some of them were amazing. We ambled forward and the landscape kept getting more and more amazing the longer we walked. Lots more pictures ensued. We sat at a clearing at one point to rest and talk. At one point, I gasped in disbelief and joy when we rounded a corner and I saw what lay before us on the other side - the rocks went on for as long as your line of sight, and with the ocean below and sky above, it was the closest I have yet seen to the Oregon beaches I loved so much.

I scrambled happily with R2 (there are three Rs lol) back the way we had come, and eventually we met up with the others, who had gone ahead. At some point we fell behind again, and had an enjoyable and peaceful walk back down the coastline. Until, of couse, we got a bit too close to an incoming wave. I jumped out of the way, but my right sneaker and foot still got soaked. I was a little unhappy about this, but I figured it was a sign we should stop walking so much and just enjoy what was around us. Which we did, until the rest of them came back for us. That, and take pictures of some nearby frisbee players.

"We thought you gave up," Nate said when they reached us. "Yeah, well, I fought the ocean and the ocean won," I said with a smile. We then decided to find some of the walking trails rumored to be behind the ocean. In the midst of these trails, we found a playground and soon all four of us were swinging to our hearts' content. (What a great picture THAT would have made.) I am very sorry to say my camera chose that point to die on me, and so I missed out on a LOT of good swinging pictures. But there's always next time (and Nate managed to get 2 before it died).

Having not been on a swing for years, I very much enjoyed this. They were solid straight wooden swings instead of those awful plastic ones. I hate the plastic ones because they're just so damn uncomfortable. They make your body mold to them. I couldn't figure out why the wooden ones were so comfortable until I realized that. Wooden ones are relatively rare.

When we'd had enough swinging and playing on the jungle gym, it was time to go to Whole Foods for dinner. Their outside seating was open so we sat at a table outside -much quieter!- and all enjoyed our food.

At home, it would have been swelteringly hot, but we found ourselves a good time on one of the many beaches of Maine. I cannot tell you how happy and grateful I am to live in southern Maine and how proud I am of my state!

Asperger's, Family Gatherings and Adulthood

2010-06-13T02:38:00.001-07:00

I have a friend who says he never had much of a family growing up, and he thinks it's better that way. He doesn't want to deal with all the drama that having a lot of family sometimes entails, and thinks he's lucky for not having much of a family. I told him immediately that I thought he was wrong, and that I felt sorry for him. That even when you occasionally hate various family members for one reason or another, even when you want more space, in the end, you're always glad they're there, and that you have them to fall back on. And maybe sometimes when you fight with them, you do it because you're so afraid of losing them.

I wanted to tell him that even when you butt against the boundaries and cry out at various kinds of restrictions family might put on you growing up or at other times in your life, you are glad to have those boundaries there, glad to have that part of your life that you can be a part of; family is a fold that you can always come back to. It is a place you can feel like you belong (for some, anyway), a place where you have your foundation from, a place where you can be with other people who share the exact same highly individual quirks and tastes that don't seem so individual when you're all together. A place where you can see where you came from - and be proud of it. Of course - not everyone has a family they feel comfortable with; not everyone has a family they get along with. I understand that. But what I'm saying is that I am lucky that I do.

As I write this, a very appropriate song has just come on the radio, that fits in perfectly with the theme of this blog. A Father's Love by Bucky Covington.

"He checked the air in my tires
The belts and all the spark plug wires
Said "When the hell's the last time
"You had this oil changed"
And as I pulled out the drive
He said "Be sure and call your mom sometime"
And I didn't hear it then
But I hear it now
He was saying "I love you"
(He was saying "I love you")
The only way he knew how "

Seemed appropriate. Anyway. Back to the point. I think the concept of family is something that gets much better with age, kind of like fine wine and cheese. For the exact same reason that when I was a kid, I never appreciated or liked the Passover seders we went to every year until just about when they were about to stop, I am appreciating the concept of family more now that I am older and (hopefully) more independent.

I spent the day today with many family members, most of whom which were visiting, at my dad's house today. We left at 9:30, a bit on the early side for me, so had the entire day together. I was a little bit zonked out when I got there, so watched TV for a bit until people started to wake up. (We have a household of mostly late sleepers.) When G, my dad's cousin's wife, walked in, I surprised myself by how easy and enjoyable it was to get into conversation with her. For a couple hours as people played rotating chairs and took different spots in the living room, I found myself talking to whoever was near and being able to take part in and enjoy the conversations. When I wasn't talking, I was taking pictures, which is something I enjoy more and more the more I do it. Trying to get that perfect shot is addictive. It's a form of self expression that appeals to me. It's a way to show other people what you are seeing, and since that's always been so hard for me, maybe that's why I like it so much.

Before I knew it was 1pm, and 2 hours had gone by since I had gotten there. At some point everyone else went outside to sit by a bonfire in the fire pit, but I stayed inside with my grandfather since I can't tolerate smoke. I showed him the pictures I had taken on the view screen of the camera, and we commented on them. I had the pleasure of giving him the 74% Dagoba chocolate bar I picked up for him after he said he liked dark chocolate. There are unfortunately few ways that I seem able to fill people's needs in other ways, something I often regret because who doesn't like to be useful?, but food is one definite way I can do that. I am extremely good at finding good food - especially sweet food - that fits people's tastes and temperaments. It was a perfect match in this case. Dagoba makes good chocolate! A world away from Hershey's and imitation chocolates, but that's a story for another day or blog.

Again, maybe it comes down to self expression and emotional connection - if one can connect using food, then why not do so? There are far more less orthodox ways to do so.
Bungee jumping, for example. I wouldn't recommend it as a bonding activity. You know what they say. "If at first you don't succeed, then bungee jumping is not for you." If you must, however, be sure not to answer this ad I saw on the Internet the other day. "For Sale: Parachute. Only used once, never opened, small stain." Always good for a laugh.

We watched an All in the Family episode, flipped around some more channels, and eventually settled on the show House. This may seem very ordinary to you, but the fact is that I haven't watched TV with family for at least five years. It was nice to be able to share what we were watching. I took pictures of my parents in a kayak, and sat around the table with my grandparents and S and G (dad's cousin and wife) talking - in a conversation I was actually able to be part of, which, when you have social difficulties like Asperger's, you never, ever take for granted. Each word of each sentence that you are able to join in on feels like gold.

At that point, around 7 or so, it was time for dinner. Since I hadn't eaten anything substantial since 9:30, I was surprised I wasn't hungrier, but I did have my crackers, roast beef and hummus to snack on throughout the day. I made sure to take lots of pictures of the table before eating. The other good thing about a camera is that if you are with other people and become bored of or left out from a conversation, you can amuse yourself by taking pictures instead of feeling lonely and left out, which is by far a more productive thing to do.

S liked my hummus and crackers, becoming one of the first people I have met to do so (hummus seems to turn off most people), and that was another connection: a connection over food, of the taste and feel and joy of food. I suppose a lot of things that other people experience I may have trouble understanding because I don't necessarily experience them, and therefore it can be hard to authentically relate to others. But food is the one thing I very much have feelings and experience with, as do others, so it is an equalizer in some ways.

Casual conversation is like gold to people who have trouble with it. It may seem so hum drum, redundant, meaningless to others to focus so much on words exchanged with no particular value other than that they were exchanged in a pleasant way, but they matter. The feeling of inclusion matters.

What memories will I have ten years from now? What will I want to remember, what will be important to me? I guarantee it won't be the amount of time I agonized over whether or not I could manage to get up early enough to leave at 9:30, whether the day would be structured enough for me to feel comfortable, if I'd have enough to do, if the music would be too loud, if I'd be able to participate in conversations or if I'd be left out, if people would be outside when I couldn't go outside, if everyone would be watching basketball instead of talking, or any of the other multitude of minutiae (albeit minutiae that was very important to me) that I worried about. What I will remember is all the conversations and connections I did have when I was finally able to overcome my fears enough to go. And that is precisely why I did it. Ten years later, I want to have and cherish memories of my family, especially of my grandparents, who are moving to California and getting a little closer to the last stage of their lives than I would like.

There was recently a post on an Asperger's discussion group that I am on that caught my interest. The writer wanted to know if the "glass window" feeling, or that of feeling like you're behind a glass window, everyone else is on the other side, and you can't connect to them, was normal for Asperger's. Of course, I wrote back to say that it was extremely common, and while he may not enjoy it, he was certainly not alone.

A lot of people with AS have the conversation skills to talk to others but have a hard time feeling a sense of connection, especially emotional connection, to others. It may be that they are putting so much energy and thought into how to carry on the conversation, and what is right to do and what is not, and what they're going to do next, that they simply do not have any brain space left over to "feel" whatever feelings are supposed to come with such communications.

(This is one reason I try to write about what happened to me after a day like this, because I am often too mentally busy "doing" when being social to actually "feel" as much as I should be feeling, and writing about it later allows me to feel the feelings belatedly. I am not saying I don't feel at all at the time, but there is often a delay. The feelings are often more related to pragmatics of the activity rather than emotion derived from it.) It may be that they don't emotionally connect with the topic of conversation, or that fear is getting in the way of connection. I am sure there are other reasons I have left off here because I am getting too tired to think anymore, but you get the gist. I don't believe I have ever spent 12 hours with people, interacting with them the whole time, and you better believe me when I say I need some serious decompression time when I get home - but I am thankful for once to be awake enough to write about it, which really helps me process, and which the last two weeks I haven't been able to do.

Especially here in Maine, in the wake of a local governor's race where the Democratic candidate is a woman, they talk about breaking the glass ceiling for women in politics. Far more important to me, though, is breaking the glass ceiling of Asperger's. And I do believe I made some headway today.

The Benefits of Disability

2010-05-24T23:38:00.000-07:00

I was lying in bed one night thinking, as I do most nights. I was thinking about how illness/disability in some ways can actually benefit you. The reason I was thinking this was because I remembered what I was like that brief time in South Portland when I had all or most of the semblances of normal life, yet wasn't happy. All I could think of then was what I didn't have.

And then, after going through the last three years, I realize that most of my thinking is now finally devoted to being happy about what I do have - even the tiniest of things, because they are things I went so long without. And I realize that I would never have been appreciative for these things before my battles with MCS (chemical sensitivity). I kind of like being able to be appreciative of these things. I spent so long in battle, so long in crisis, that it is very easy now to be thankful for things like going out with a friend to the beach, reading (!! couldn't do that for a while), being able to watch TV, having someone to spend time with, and just having a non toxic place to live where I don't have to fight with anyone every day. This is not (here comes the disclaimer) to say that I don't have my frequent moments of self-pity and wish I had more. But they don't consume my life like they did pre-MCS. They don't last very long.

Every time I start to get upset over something my life now, all I have to do is set my mind to a memory, any memory, from how it was the last three years, and say to myself "Do you want it to be like that again? No? Well, then be glad for what you have!" and that is usually enough for me to feel at least a momentary flash of gratitude and thankfulness. Then I go back to bitching. :) No, seriously, but any complaining that I do do is far less in intensity, and that is a good thing.

I wonder why it takes such serious life events for us to wake up and smell the coffee and appreciate what we have around us. Maybe it's just a matter of perspective. Everyone needs to have their perspective shaken up once in a while. It's the reason that my former college became the first in the nation to require students to go abroad one semester in order to graduate. They wanted to give students a different perspective. (I think that is a great idea in theory but I never would have lasted a second in a foreign country. I think they should let students travel to places or experiences that are foreign to them in the US to fulfill the requirement. Luckily they did this after I left.)

I suppose it is for the same reason that I didn't truly enjoy Maine until I went away for college to Maryland. It's very hard to appreciate something you have, to not take it for granted, until you lose it. And hopefully get it back again.

This is not a perspective unique to me. I am reminded of a memoir by Michael J. Fox that I read once, about his struggles with Parkinson's; "Lucky Man" is the title. It was a very illuminating book. In it, he basically says that Parkinson's saved his life; that it was a great gift to him. Before the disease hit, he was always busy, always on the run, no time to think, and if I remember right, his personality suffered - he didn't take very good care of his personal relationships, was sometimes rude and uncaring, and so on and so on. After Parkinson's forced him to slow way down and eliminate all the excess from his life, he started to realize how much he hated the person he had been. He started to realize joy in things he had never seen joy in before. He improved his relationships. He had a better connection with himself, others and the world because illness had forced him to take stock of himself.

This is not to say that everyone should get Parkinson's or some other disease for the perspective it gives, or even that this theme is uniformly applied among all people with serious illnesses. But it is an interesting thing to think about. I hope I am not quoting this wrong or remembering wrong, but I think Fox said he likes his life better now than before he got sick. Yes, he is limited now in many more ways than before he was sick - at least physically - but in other ways, his mind and life have opened up so much.

I guess that's a tiny bit what I was feeling .I am so much more limited physically than I was before MCS, so much that it shocks most people to realize, but on the other hand my mind has opened up. I am more cheerful and thankful than was I before. I wouldn't say this if I hadn't finally managed to come to a good place in my life (and knock on wood it lasts). If you had asked me seven months ago, of course I wouldn't say this. I was miserable! I was in the middle of a crisis that had dragged on for three years. But all I am saying is that now, when I have more or less in many ways come out of the other side of it, at least the worst of it, I take pride in my ability to enjoy what I *have* in the world instead of pining for what I don't.

For example, yesterday I bought my roommate two pounds of fudge, whoopie pies and brownies for a birthday present, and made pyramids out of them for an appealing visual design. I used to die for this stuff, I loved it so much. But I seem to get sick whenever I eat it now, so I don't. It was kind of hard handling it and smelling it without being able to eat it, but I didn't really mind that much. It was a small thing. I had my rice crackers. My rice crackers satisfy me. If I didn't have them, that would be another thing. But in many areas of my life, I have taken things I used to be able to do but can't anymore (go into buildings, stores, plays, etc) and transferred them to things I *can* do (go to beaches and beautiful hiking spots), and what do you know, I think I'm more happy with the more limited selection of things I am able to do now than I was when I had everything. Because I can appreciate them.

That doesn't mean I don't have a longing in my heart to be able to do some of the things I used to do, but I try not to let it control me. Life's too short to be upset if you don't have to be. I hope it will come in time, for now I will just enjoy what I have.

I was going to write something about going to Fort Preble at SMCC with Nate and Rob on Saturday, but I've run out of space and energy. Suffice it to say that I felt a much greater sense of connection with them than usual, and also a sense of connection with the outdoors and the beautiful ocean air and beach, and it just made me feel happy and grateful. Grateful to be a part of something - grateful to be a part of a group!

That was it - the feeling of belonging somewhere, finally, at last. Two people to whom I feel special to and who are very special to me. Friends who understand my needs, and I theirs; friends who I can look forward to fun outings with and good conversations. It took me a long, long, LONG time to get here.

For so long, friends were something that I tried to do because everyone else was doing it. I really didn't understand what you were supposed to do with friends. And if you put me with 90% of the population, I probably still wouldn't. But after knowing these particular two friends for about three years, I think we, and I, have finally got it down. Slow learning curve, yes, but you get there eventually. The hardest part is not judging yourself against the timeline of others; you'll never get anywhere if you do. That goes for both people with autism and other disabilities, as well as parents of kids with autism and other disabilities. Certain concepts take a lot of time and life experience to sink in and take root, but let your child go at their own pace and always love and support them wherever they are, because one day, they will get to a place worth going.

Oh, the humidity of it all

2010-05-17T22:08:00.000-07:00

It's not fair. The way psychology works sometimes. The defense mechanisms we build up to keep ourselves from feeling things, from thinking about things, from working through things. How sometimes we have conflicting feelings; we want to try to work through something, get it out there, hope that using words will deflect and decrease its power over us. But then we start to write, and we freeze up. And just can't go there. But if not now, when? If I wait too long, it'll get to a place where it's intolerable, and if I can help alleviate that by writing about it now, I should.

It is no secret that my emotions, physical well being and feelings of stability are very much affected by environmental influences. I am not just talking about chemicals here. Everything in my environment, I am beyond sensitive to. And when I feel a certain way, I often seem to lack the mental ability to imagine feeling a different way. I don't cope with feelings of distress very well. I wish I did, and I wish had the ability to do so; it would be perhaps the most helpful coping technique ability etc that I could possibly have.

So because of that I am very scared of situations that will make me feel sick either physically or emotionally. I just lack perspective. Once I start feeling like that it feels like everything in my life has gone to hell and nothing will ever be good again. A few hours later if the stimulus is gone I can be perfectly happy, but, it doesn't take away from how terrifying the feelings from before can be. I wish I had a way to change that.

If you're worried about and/or hate something, one of the surest
way to increase your fears of it to huge porportions is remove the item for two years and then bring it back. Yup. Nothing like being out of practice.

But it is May 17. I don't know how much time I have left. I am scared. I am scared! Oh so scared. But I must not let my emotions get the best of me. I know where that leads. And it's not good.

****************************

Three years ago, approximately, my biggest problem in life was humidity. Granted, a seasonal problem, but a problem beyond belief in the summer. Humidity didn't used to bother me much before my junior or senior year of college. When I came home from school after my senior year though, WHAM!

Maine is probably the least humid state on the East coast, by far, but you wouldn't know it to look at me. My memories of this time are despicable. How can I describe the symptoms? The feeling of someone sitting on my chest, on my head, the feeling of so much pressure being exerted on my joints, on my body, that I felt like I couldn't walk, I couldn't breathe? I still don't know if for sure humidity is the culprit, or the entire culprit, here; because some days when other people said it was humid I was fine, and many, many, MANY days when I said it was humid, no one else thought it was. So perhaps it is some other kind of atmospheric conditon besides humidity, or in addition to. Whatever. For the purposes of giving it a name, and a more than likely but who knows correct name too, I shall call it humidity.

You can't imagine what this feels like unless you have been there. Maybe others have, and if so I'd like to hear about it. I know a lot of people have trouble with humidity too, my dad included, but I highly doubt they have trouble to the same level I do (unless they're I dunno just stoic about it, less sensitive to it, or can brush it off more easily, who knows).

In Baltimore, I have memories of trying so valiantly to walk from the student center to the academic buildings, a distance of mayne an eighth of a mile... maybe five or six minutes. And feeling like I was going to die before I got there, having to stop, kneel down, sit down, and just mentally yell at myself to keep going. Watching all the happy go lucky people easily walking around me, laughing, and talking about *what beautiful weather* it was elevated it to a level of pure torture.

I remember it being so bad once in Maine that walking from the Maine Mall entrance to the Borders next door, a distance of again maybe three to four minutes if that, was pure torture, a a slow race of endurance, every step an enormous effort. People have used analogies such as "swimming through molassess", and never having done such a thing, I do not know how it would compare.

Even at this early time in the season, there are plenty of mildly humid days, and when I step outside, IF I step outside, I step back immediately. It's a feeling of all the air being sucked from my lungs. It's like someone inserted a tube in my chest and pulled out all the air. I feel faint and weak. Not dizzy per se, but just like I'm not getting enough oxygen. My mental faculties are dulled, I have trouble talking, I'm extremely irritable.

The feeling was at once both horrific and, if I could view it from an outsider's perspective, stunning and slightly curious. At my worst, I mean. The weirdest feeling was simply, as I said, *the amount of pressure being exerted on my body.* I felt like I could not move through space nearly as easily as before. Like my body was being weighted down by something. In addition to the whole feeling like I couldn't breathe thing. Now where in the world could those feelings come from?

Frizzy hair, which seems to be most people's chief complaint in humidity, is the least of my concerns. Or feeling sticky. No, I wouldn't mind either one of those.

But let's fast forward a little. After two summers of battling severe humidity problems, a new little problem showed up. Well, not so little. In fact, it's the one that's defined my life the last three years or so. October of 2007 is when I developed my severe chemical sensitivity problems. And obviously, after that, I had a whole other can of worms to deal with. But it was interesting, in some ways, how some of my symptoms seemed to mimick the symptoms I got in humidity. The pressure on my head after an exposure, the brain fog, the shortness of breath - why, in some ways, it was like having all the fun of the summer, only not in the summer, and with a million other problems to deal with at once! Ha, ha, ha. Obviously, those were not the only symptoms of my MCS; the other ones were far more devastating. Those particular symptoms were much lessened in their MCS provocation, but were made up for by other worse MCS symptoms.

But the idea did cross my mind that if I felt that way as my normal state, what was going to happen when summer came and I got to experience all the fun of humidity in addition to my already compromised state, without the ability to go into any buildings for air conditioning or entertainment? Oh man the nightmares I had over that one. Or would have if I'd allowed myself to think about it for very long.

As fate would have it, I ended up in Missoula, Montana the next summer (where my mom lives). I stayed from April to November, perfectly missing the East coast humidity season. I didn't know before I went that Montana has no humidity, but boy did I love it. It was the first time in my entire life I had ever truly enjoyed being outside. It could be 80-90 degrees and I wouldn't care. Living in Missoula had other problems, of course, but the one great thing about it was the weather. The next summer, as things turned out, I ended up going to Oregon from May to September. Again, this was not planned to have anything to do with the humidity and was purely incidental to my whole MCS finding a place to live thing. But I remember thinking on the plane on the way there, and before I left, "If nothing else comes of this whole crazy venture, at the very least I will have gotten out of the East coast for the summer."

So, for two years, I dodged the bullet. But now ( I hope ) my traveling days are over and I am rooted in my beloved state of Maine, and I want to stay here. I absolutely love Maine nine months of the year. I love the winter. I go outside almost every day in the winter. It's without a doubt the place I want to be, and I value my stability, and the, knock on wood, relatively stable and much more functional than usual last few months I have had here very much. It was a mild winter and a mostly beautiful spring. But nearly every day since I got here in December, I have been dreading the summer. Man, those six months went by fast! On the one hand, I should be happy - I couldn't have hardly imagined in December that I'd still be here and happy six months (six months!!!!) later. I am thankful for that.

But every day forward on the calendar feels a little to me like a prisoner on death row flipping forward the pages to the day of his execution, if you'll pardon the analogy. April 15. May 1. May 15. May 16. May 17. Less than two weeks until June. A sinking feeling appears in my stomach when I think of that. When will it start? When will be the beginning of the end? It has already started; I know that. I only go for walks about twice a week now and I have to force myself to do even that. I just can't deal with the air or wondering how the air will be the rest of the days. The humid days affect me even inside, although not nearly as bad as when I was at my dad's; this house has much better insulation.

So here I am. On the East coast for the summer for the first time in three years. Wondering how best to deal with the upcoming summer season. Three to four months is an AWFULLY long time to be miserable, in my opinion. I could say "Maybe it won't be so bad," although I'd be lying. I do think it will be better because of the insulation in this house. And I am thankful for being able to watch TV to get my mind off things. Of course, a window AC in my room might help (if cost is not prohibitive and if I can tolerate it), but I'd rather not spend the entire summer in my room. Although I may have to. We'll see. Nate and I used to do summer activities in air conditioned buildings, like see plays, go to arcades, out to dinner, and so on. Can't do that anymore. Haven't been able to for almost three years. Oooh, what fun! Summer recreation plans dashed. My dad lives on a beautiful lake, but even though I absolutely love to swim in it, the year I was living there during summer I went in only a handful of times - I simply couldn't bear being out in the humidity. Whole Foods may be the only option; at least I have that!

I did at least finally manage to see a doctor (progress!) who has referred me to a pulmonologist, who is going to do a pulmonary function test on me to see if he can find anything. He's going to do it both with and without asthma meds to see if there's a difference. Of course I hope there is and I hope they can find something that can be helped, but who knows. On the one hand, most people who I have described these symptoms to over the years say it sounds just like ashtma, although with slightly different symptoms (no wheezing or coughing). Others don't think so. Considering that I had a lung collapse at age 13 and was very premature as a baby, I wonder if there is some kind of congenital lung issue that is causing these problems, but of course that's very vague and hard to pin down. I also wonder why I never had these problems till the middle of college, about a year before the onset of my chemical sensitivities - somehow they have to be related. Something was weakened in my body, somehow.

The only other medically interesting note is that I remember once for some reason holding my nose and realizing that most of the symptoms, or maybe half of them anyway, went away while doing this. Of course this not a practical long term solution, and I have no idea whatsoever that could mean.

Barometric pressure has commonly been described as causing feelings of pressure on joints, but I only have these symptoms i in the summer, so that doesn't make sense.

Buying a dehumidifer might help though....maybe more so than an AC...who knows.

Anyway I am totally losing my train of thought focus here so I am going to stop now.

Although on one last note I just discovered something called Biometeorology. It is "the interdisciplinary study of increasing importance as correlations are being drawn between certain types of meteorological conditions and the health of plants, humans, and all other animals." (http://www.anapsid.org/biomet.html)

And don't even get me started about mosquitos. They didnt have them in OR or MT either ,or at least not many of them. New England mosquitos are the worst.

Yes, I am just *so* looking forward to summer, lol

Perhaps writing this will have made me a little more prepared and mentally ready, maybe not, who knows, at least I tried. One more thing to cross of my to do list.

I shall go read some blogs now.

Choose Your Life

2010-05-11T00:29:00.000-07:00

I just finished reading a great and very thought provoking book called "When Nietzche Wept," by Irvin Yalom. It was a very profound story to me, and I'd like to share the story with you.

This book is a fictional tale of an imagined encounter between a prominent Vienna doctor, Dr. Breuer and the now famous philosopher, Nietzche, back in the 1800s.

It takes place before the invention of psychotherapy. A woman persuades Breuer to try to help her friend Nietzche, who is suffering, she says, from despair. "Despair?" says Breuer. "What do I know about treating despair?" He decides to try anyway.

Because Nietzche is not willing to consent to treatment, Breuer makes a ploy where he claims despair himself and asks Nietzche, , a philosopher with many ideas about the human condition, to treat him while Breuer looks over Nietzche's physical condition.

At first Breuer tries to pry information out of Nietzche, but Nietzche refuses to share anything personal, believing it a form of weakness.

After several sessions, Breuer forgets about trying to manipulate Nietzche, and genuinely becomes the patient. He is depressed and suffers with an obsession over a former patient.

The long and short of the book is this, which brought up several meaningful themes for me:

Breuer is depressed because, although he has a good life as a prominent, respected doctor, a loving wife and family, money and so on, he feels restricted. He longs for freedom. He feels that he was forced into this life because of his culture and expectations of his family and the culture around him. He doesn't realize this for a long time, of course, but in the end this is what it amounts to.

Nietzche says that the most important thing in life is to "Choose your life." He says that Breuer has not chosen his life, and that is the reason for his despair, and also the reason for his obsession with his patient Bertha. Bertha represents living dangerously, passion, magic and escape to Breuer. Breuer resists this theory at first, but at the end of the book he comes to agree. He is hypnotized and imagines leaving his wife, kids and life to be free in Italy. He discovers he does not like it very much. When he becomes conscious again, he is invigorated because he realizes he actually does like the life he has, and he "chooses" it. "I choose to be married to you today," he tells his wife.

After Breuer has his epiphany, Nietzche finally reveals his story. Due to Nietzche 's loneliness and wandering lifestyle, Breuer offers to let Nietzche stay at his house, so that he will not be so isolated. Nietzche refuses, though, and Breuer is dissapointed, thinking after all this time, he has done nothing to help Nietzche.

Nietzche reassures Breuer that he has indeed given him something very powerful: the freedom of choice. Having been offered an alternative and refused it, he is now free to "choose his life,"
and be happy about it; before he felt bound by it.

"Isolation only exists in isolation," he says. "When it is shared, it evaporates."

"The moment I talked of not being able to touch another was the very moment I was able to be touched by you."

The above remarks are Nietzche commenting on his situation relevant to the therapy experience.

I have read lots of psychology related books, and a good number of books on psychotherapy, but this is the first one that really brought home what the process of psychotherapy was really about.

Another theme was discovering the origin and meaning of each symptom. To do this, Breuer "chimneyswept" (did free thinking/association) about whatever thoughts came to mind regarding the symptoms, which eventually lead to relevations about their meaning.

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Personal application

There is a personal application to this that I was thinking about when I was reading. I started thinking about different ways that you can "choose your life." Choose your way of thinking and your reactions to things - that's something I work hard on and am getting better at. I try to reframe things that happen as best I can so I can not get so angry or scared of things.

Choose your decisions - I put a lot of thought into my decisions and I always make damn sure that I am making a decision that I can stand by and be proud of for years into the future. Even if things don't go as planned, and the decision turns out to be not the best one in retrospect, I know I made the best decision I could with the information I had at the time.

Choosing your will - and standing up to people who would try to change your will and your decisions because they think they know what is best for you - has been another important one for me. I especially think of those crucial few days in Bend, when the decisions I made for myself, and the pressure I resisted in making them, changed the entire course of my life for the better. I am eternally grateful for having, dare I say it, the strength of character and courage to make those decisions, as well as, of course, being lucky enough to have certain other factors fall into place when they did so I that I was lucky enough to have decisions to make.

My roommate, wanting me out on short notice, was hell bent on me going back to my mom's in Missoula (Montana). I was hell bent on not going, provided I could somehow find a way to avoid it. She made the plane tickets. I told her there was a good chance I wouldn't use them. She said fine. And for the next four days or so, I spent almost every waking moment researching other options, some way to escape the fate that she was trying so desperately to force on me. No offense to my mom, but I knew it wasn't the right place for me. I knew I wouldn't flourish there. I had too much of life left to live, and damn it, I wanted to find a way to live it. I felt that it wouldn't happen there.

I was stuck in the middle of Oregon, on the other side of the country from my family, with no ability to drive myself anywhere and knowing almost no one in the area. That, and I had severe chemical sensitivities that prevented me from being able to live just about anywhere, which is why I was in the middle of nowhere Oregon in the first place. Some might have said it was impossible. Clearly, my roommate thought it was. But I didn't (think, at the time, about possible or impossible. I just knew I had to put every ounce of myself into the task of trying, in every avenue I could, or else I would regret it forever. I would not go easily.

I am forever indebted to both Julie and Joe. Julie was the one who found me the eco-friendly apartment to live in in a hippie commune in Eugene, and Joe is the one who agreed - at 5 p.m. the day before I was supposed to fly to Missoula, no less, talk about a last minute reprieve! - to drive me the 2 hours there. My friend Leslie was gracious enough to let me stay in her house the last night I was there.

I had never met Joe before. I had only talked to him once. I knew him through an online friend in Australia - she was his stepson. He had no obligation towards me, no reason to say yes, but he did. He said yes. Against all odds. He was my last hope, and he said yes. I tell you, that was the sweetest "yes" I have ever heard in my life.

It was a big risk - going to some hippie commune in a city I'd never been to, not even knowing how I'd get my groceries, with someone I'd never met (but trusted, as I wouldn't have gone with someone I felt was going to put me in danger). I am not a risk taker by nature. But to me, not doing it was a far, far bigger risk. I wanted to live my life. I wanted independence. I wanted chemical free living arrangements. And if this is the way I had to to do it, so be it.

I chose my life.

I chose my life.

What a statement. I didn't think that much about it at the time, but others have told me they feel I have courage, bravery, all kinds of words I never would have applied to myself before. They reminded me of how many people languish in situations that are toxic for them - physically or emotionally - not making any effort to get themselves out. I did.

And here I am at what I hope is the end, or at least a good long stopping point, of my long and winding journey. Back home in Maine. Living with a woman who brings a smile to my face every day, in a town I love. In really the best possible situation I could imagine for myself, although of course nothing is perfect.

I'd say my long and winding road worked out all right.

Many nights, I get frustrated and hopeless and so fed up with the problems I still have. But then I get a glimpse of memory of how much worse it could be, would be, and I feel a flash of gratefulness that temporarily eclipses those feelings.

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My roommate from Bend, who I hadn't spoken to in several months, emailed me a few nights ago out of the blue. In her well-intentioned email, she mentioned the equivalent of an "I told you so," saying something along the lines of "See, I told you you'd be better off living near family." The comment and a seperate one she made angered me so much that I had trouble containing my anger. I followed my own path, and I ended up okay. Had I followed the path she so direly wanted me to follow, I would have been living a very dependent and unhappy life that I would have had a lot of trouble getting out of. The fact that I ended up near family is wonderful but incidental. (I did have family help in moving here, which I appreciate and want to acknowledge, but it is besides the point that I am trying to make.) The fact that I had a lot more journey to follow before I could end up in a place that was right for me is the important part and the part that she apparently doesn't get. My life was meant to be lived in Maine, living independently, not in Montana.

And so when I read "When Nietzche Wept," and his ideas about choice, I was once again grateful for the choices I made. While those few days in Bend were not pleasant to endure, they were in some ways my proudest moment. I think people should live for themselves, and do what they think is right, to the best of their abilities, instead of falling prey to other people's will. Sometimes, you don't have any choice, but if you do, you should follow your heart. Whether the choices eventually turn out to be right or wrong, you will never own yourself, you will never be satisfied with your life or yourself, if you do not follow your own will.

I have a lot of living left to do and I hope I can continue to put these ideas into use. I am not saying that I do not value advice and support from others. I do very much, and I do not deny that the support and advice of my nearby family has been invaluable. But you have to have the final say. I would like to be able to change my thinking and my life circumstances even further, but if there is one thing I have learned, you can't rush things, or push yourself into situations you're just not ready for. They won't work. I hope time will eventually have in store for me a life that is more in lines with the one I'd like to live, but I suppose I have to be patient and wait.

This principle is perhaps particularly applicable to people with disabilities, who have to learn how to live with, and how to accept, a whole new set of challenges they didn't ask for or want. But those who undertake the extremely difficult task of embracing their challenges and accepting them as part of them are perhaps the most inspirational of all.

In the meantime, I have to figure out how to apply the principle of "Choose your life" into not getting frustrated and angered at at the health challenges I am facing that so much restrict my life. It helps to have a routine, and to remember what I am capable of. I am always on guard with my mind, trying to train it not to linger in areas that will be unproductive for me. Time will tell. Until then, veni vedi vici.

A Beautiful Reminder

2010-05-05T22:10:00.000-07:00

After a week of not going outside, terrorized by my experience last week, I finally did the deed today. I had to wait for the humidity to go away and for my fears of a repeat of Thursday's experience to lessen.

Luckily, it was about 68 degrees, sunny, no humidity and a light breeze: my favorite kind of weather. No P-problem either.

I walked to the Town Landing beach; I wasn't going to at first because I really wasn't up for the uphill on the way back. When I had gotten that far, though, to the top of the hill by the market, I thought, How could I not? The ocean is below this hill, and I want to see the ocean.

Every time I walk down that long and winding, steep road , which has admittedly only been twice, I always think of Newport. Newport featured a much longer and steeper hill you had to get down to get to the ocean, but that first magnficient view of the ocean when you'd gotten partway down was always worth it. Same thing here, on a smaller scale.

The beach was just magnificent today. It's a very small beach that is actually the town boat launch. Today it was high tide, which I had never seen before. All the rocks and 90% of the beach were gone! The water lapped against the edge of the parking lot! It was quite a sight, and so soothing to stand there watching the waves ebb in and out.

Thank God, the second I descended into the tiny parking lot, a strong breeze descended on me. I was hoping for a breeze, and I got one. The wind made all my senses tingle and dance in delight. I love wind when it's warm out. It just makes me feel so good. After being so hot for several days, too, it felt like heaven. I just stood there and let the wind massage my body. Then I walked town the dock/pier/whatever you call it.

They had put in two new floating docks, one in the front and one on the left. Two paddle boats were tied to one. It was great fun to walk on them and feel the vibration and movement of the docks as the choppy water moved them.

Just as I was about to leave, I saw a young man and woman about to put a kayak into the water, and I stopped to watch them, surprised. I had not known you could kayak in the ocean before, and was surprised they'd do it when the water was so choppy! It reminded me of watching the kayakers on the river in Missoula.

They did extremely well - it was a double kayak and they both rowed in such unison and with such strength that you would have thought it was a machine. At first they stayed near the shore, then they went off into the distance, and I watched until I could not see them anymore.

I listened to the music on my Walkman and sat on a bench with a big smile on my face.

After about forty minutes, I left, and smiled at the two Siberian Huskies loitering on a nearby lawn while their owner mowed it. I noted with pleasure the kid in a yard playing on a pogo stick. A pogo stick, of all things! Boing, boing, boing!

The walk back seemed so much easier than the walk there, which had been something of a struggle. I almost would have stayed out longer, but I was tired by then.

I still had a smile on my face when I walked into the house. It's nice to know that there can still be some good days in the midst of all the bad. I have to remember that even if the summer is humid 70% of the time, there will still be *some * days when it is tolerable to go out (I hope).

I thought when I walked how damn lucky I was to move to a place that was not only in Maine, not only right outside Portland and 2 miles from where I grew up, but WALKING DISTANCE TO A BEACH. I mean really, what more could you want? Other than the no humidity thing, of course.

Which I still need to write about. I feel if I write about it will make me feel better and more prepared. But for some reason, perhaps the unwitting lifting of a 550 page hardcover book in a package earlier, my right shoulder and hand are hurting, a considerable amount, and it has been a challenge to even write this. So that will have to wait for another night. I will have to deal with it without the benefit of mental preparation as of yet.

Everywhere we go, there we are. I like that I have memories of past experiences that can be triggered by local things; I can experience the best of several states all at once at a local beach in Maine. And I can appreciate the details in a way I would wager many people might not.

Appreciation for detail - it's both the blessing and the curse of autism.

Decisions: A Complex Matter

2010-04-30T00:50:00.000-07:00

I am scared, and I am trying not to be. It's so easy to think of ways to battle fear and anxiety when you're not experiencing them, and so hard to actually put them into practice in the moment. Isn't that the way it always goes?

I'm debating between writing about this and not writing about this, and can't decide. There is a thin line between not wanting to think about something, and needing to think about it (and write or talk about it) enough so you can vent the excess nervous energy and obsessive mind power it has over you and get to sleep at night, or move on with your day.

It all comes down to decisions, I guess. Decisions! What a topic! We make so many different decisions, every single day, about so many different things. Some of us spend more time and energy on these decisions than others. Some agonize over decisions, while some people don't even seem to think about them. The decision making process is a very personal thing.

I am one of the people that likes to make decisions, about anything, no matter how small, very carefully. When you are as sensitive as I am to so many different things, you want to be careful about what kind of situations you put yourself in.

So, when I make decision, I weight the potential benefits versus costs. Will there be any potential harm coming to me from this decision? If so, how much? If so, is it balanced out by the potential benefit? Will this decision serve a purpose for me, and is it safe thing for me to, given all of my many physical, sensory and emotional needs?

Once I make the decision, I can move ahead feeling secure that I made a good decision. And it usually does work out that way, too. I've gotten pretty good at this whole calculating thing. The times that it doesn't, I can usually accept whatever the damages were by justifying it in some way.

But there are some occasions, of course, when there are unforeseen factors that you couldn't have factored in; or, you knew of the factors and the risk, but simply couldn't have predicted how much effect they would have on you. I guess that's why they call it a "risk."

But, for God's sake, walking out your front door and taking a walk should not be one of them.

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I have been having problems with the air quality on occasion for the past two or thee weeks. Not because of humidity, which is my usual problem; there have been a few days like that, but not too many. The first time was roughly about two weeks ago, right before my former high school guidance counselor was going to come over. I open the door and there is this incredibly strong, sharp, pungent odor that immediately starts burning my eyes and nose and making me feel like I'm going to faint. I close the door *fast.*

Now, in credit to my reduced anxiety levels and increased coping abilities, I do not panic about it like I did in New York. I once forced myself to walk to the store to buy crackers in conditions like that in New York, and believe me, did I live to regret it. Full on meltdown over how bad that made me feel when I got back. No, thankfully from that experience in New York, I realized, there was no negotiating, no room for experimenting, that door needed to be closed fast, and I needed to forget about it.

Which I did, actually, because there was plenty to do in the house, unlike any other place I've lived, and I didn't have to panic about not being able to go outside.

I waited a few days before I tried it again, and I was okay. In fact, a week later, on the following Wednesday, I took the longest walk I'd taken yet, to the Town Landing Beach, and enjoyed it very much. I hoped to do it again soon.

But the following Monday, four days ago, the smell was back again, and this time I didn't even have to go outside to know it. It filled the whole house. Why, I have no idea, but that was a very hard day to get through. The smell inside abated by Tuesday, but I didn't dare check outside.

Wednesday, it rained, so I decided I would definitely go for a walk on Thursday (today). After four days of being in the house without any exercise, I was feeling extremely restless. Today was a beautiful day with no rain, and so around sunset, I went for a walk. I did not do it first without contemplating risk versus benefit. I reasoned that whatever pesticides (the first time this happened, there was a "keep off the lawn" sign on someone else's lawn that I saw days after, so I am pretty sure that must have been the reason) would probably be gone by now for the most part; it had been several days; and the rain would have washed some of them away.

Also, when I went for a walk days after the first application, I was bothered a little by a remaining smell close by the house,
but when I got out of the neighborhood, I was fine. So it was worth it. I felt a little out of it when I got back, but not too bad.

This time, however, the same rules did not apply. I went outside, and I could smell it a little bit but I figured okay, it's like last time, I'll walk towards Town Landing and it will be fine. Except when I got closer to the road that took you to Town Landing, the smell got worse - to dangerous levels. There was no way I was putting myself into that kind of situation, so I turned around. Tried to walk to the other end of our street instead. But that got worse about halfway down the street, too, so, not wanting to give up on my long awaited walk completely, I made a circuit from the halfway point of our street to the halfway point of the adjacent street a few times to get my heart beat up a little, until I could stand the smell no longer and went back inside.

I sat on chair in the living room, feeling wasted, flipping through the TV channels to try to distract me a little. I was sure I'd be fine after I sat for a few minutes, like last time. There wasn't much on, and I had people to call, so after 15 or 20 minutes, I picked myself up to go upstairs and continue my night.

Except. My body wouldn't go up the stairs. My chest felt like it was giving out, for lack of a better phrase. I couldn't do it. I collapsed in a small heap at the bottom of the stairs and tried to give myself a pep talk. "You're fine, you're just having a momentary reaction, you *can* go up these stairs." It took a few tries, and more effort than it should have, but I did get up the stairs. And my ability to do so did get better as the night went on. Still, though. It's the breathing thing again. The chest tightness, shortness of breath, can't take a deep breath without it hurting quite a bit, feeling like you're not getting enough oxygen, breathing thing, that scares me more than anything else.

I'm calm while writing this more or less, but I had to work very hard to remain so. I seem to have two different responses to chemical reactions. One is the eyes/nose/body stinging, brain fog, temporary loss of all function - not good, but it always goes away as soon as I get out of the situation or soon after, or hangs around for a few hours in a very reduced form before going away.

While that is worse in the short term, it is better in the long term. Because the other symptom, which I described above, is much worse. And once it happens, it usually sticks around. I hope to hell this time it won't. The average time it stays is around two weeks, but I think that it's probably more that I get used to it as "normal" by then than it actually goes away.

It doesn't happen that often, but it hits hard when it does.

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The last time it happened was when I was in Eugene (Oregon). In one of the few times in my entire life that I have acted on impulse, I decided to forget all my rules about basically going nowhere but natural food stores (since those are the only places that I sometimes seem to be able to get away with, the one in Albany, New York a gross exception), and go into a lox store. I wouldn't have done this, except for two reasons: a) I had spent the afternoon going into natural food stores in Eugene, and had had no disasters yet, therefore giving myself an artificial sense of confidence, and b) it was a LOX STORE. IN *OREGON.* I repeat, it was a lox store in Oregon. I didn't even know they knew what lox was in Oregon. Chalk it up to homesickness. Lox equaled home to me. I decided to go into the store, and look at the lox. If you don't know what lox is, you're probably not from the East coast and should google it.

I wish I could explain to you adequately what happens when I do this, in most places. My brain gets so fuzzy, there's like a sense of pressure on my brain and body, everything tingles and seems far away, and I literally, in most cases, can hardly speak. It's like the act of speaking takes up too much brainpower, which has already been sapped up by the chemical reaction, and it makes my brain feel like I am going to explode to speak. So I pointed at what I wanted instead.

I wanted to stay long enough to sample the lox. By the way, it was crappy lox. I guess Oregon can't actually do lox after all. Well, it wasn't inedible, but it certainly wasn't worth coming in for. I stayed under five minutes. And made a beeline for the door. When the stinging symptoms subsided and my head cleared, I thought I was in the clear. As those symptoms subsided, though, I realized I was having trouble breathing. Oh, shit, I thought. Not this again.

It lasted the next two weeks at least. I was miserable beyond belief. Here I was, at this hippie commune in the middle of nowhere, completely on my own, no transportation except when I could hire someone, no sympathetic faces nearby.... and I felt like I couldn't breathe. I just have this vivid memory of being on the phone with my mom telling her that I felt like I couldn't breathe, but of course there was nothing she could do. Walking became harder; I didn't have nearly as much stamina. Even talking felt like it took way too much breath, more breath than I had, for the first few days. Two weeks later, when I saw the guy who drove me again, I had regained functionality but still felt the tightness, the je ne sais quoi that had not been there before. In the last year, my stamina for walking and hiking has gone way down, and as far I'm concerned I can attribute it to the chemical exposures I've had; I never felt like this before.

People occasionally ask me if I think I made the right choices in going to all of the places I did. I say yes, without a doubt.
But in my entire two years or so of traveling, the only thing I really had any regrets about was going into that damn lox place.

Trust a food related item to be my downfall.

Anyway, this is getting long, so I need to end this and make my point, and then go to bed.

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The point being, of course, that a) I like a sense of order, a sense of control over my emotional and physical well being when possible, b) I try very hard to order my life to achieve these, and c) when I can't, it scares the hell out of me.

Point also being is that I've spent all week dreaming of what it would be like to go into certain places and not experience a reaction, and was very, very close to asking someone to take me to True North to see if I could tolerate it there and ask if I could do presentations on autism. I was very excited about it. Now this happens and I'm worried if I'll feel well enough to do it, and it just makes me rethink things. I have to be calm and feeling stable mentally and physically to try something new, or else the residual anxiety will mix with the new anxiety and create a total overwhelm. I hope I still can but who knows.

Thirdly, on a more positive note, I am reminding myself that at least this time I am in a much more positive and stable environment, and even if I don't feel well at least, thank goodness, I have things and people to do to distract me from that fact so I don;t have to sit around and think about how I can't breathe. So maybe that will make the difference.

I will avoid outside the next few days, then go and try again, and all I can say is, I hope to hell this is not a problem all summer, and that I feel better tomorrow.

I just don't like getting blindsided this way - or so it feels to me. I don't like having small, everyday things that most people take for granted feel like Russian Roulette decisions to me.

So those are my thoughts about decisions, and the havoc it can wreak when you make the wrong ones. But also how you can't always know and have to do the best you can.

Does anyone else give as much thought to decisions as I do? Do you have any particular decision making process?

Moments

2010-04-28T21:41:00.000-07:00

There are many other things I would like to be doing now, but at the same time I think it is very important to recognize small moments that may occur in the course of a day, that make you happy. Moments that matter, that may be out of the ordinary or may not be. And stock them up for when you have a shortage of them later.

So here are my moments for today, of which a surprising amount occurred:

1. Madeline (I will call her Madeline as a penname) greeted me enthusiastically when I came downstairs and told me she loved my book so far and that she "felt like she was actually there in the cities I was writing about."

2. Mark (also a pen name) telling me that "You're always in a good mood, it's nice to come home to someone in a good mood," when I greeted him when he got home tonight. I was a little surprised but pleased at that comment.

3. A good friend telling me that he would "always be grateful to me for giving him true friendship for the first time in his life." Man. With a statement like that, how can not smile? It feels so good to be meaningful to another person.

4. A relative telling me enthusiastically that she "really, really, really liked" my book, and telling me why. And a 40 minute discussion about it. That was fun, and good encouragement and motivation to work on getting the book self-published, too.

Wow. Today, I actually feel like I mean something to some people. That is a feeling I do not often have. And I like it.

Now to return to the regularly scheduled program, which probably includes working on my book and possibly researching things about cabs in an attempt to maybe write a future article on them.

I won't go into the things I am frustrated about as I hope they will resolve, as all things do sooner rather than later, and I am trying to be grateful right now.

And work on my book. So then I can figure out ways to promote it, sell it, whatever. That would be really cool.

Do you make efforts to try to be attuned to small moments of pleasure and meaning in your daily life? Does it help make up for all the not-so-good times?

Perception, Fear, and Brain Retraining

2010-04-23T01:22:00.000-07:00

Perception. It's a topic I've been thinking about a lot lately. So much of the way we experience the world, the way we react to ordinary, every day events, everything about us and the way we relate and function in this world - is all about perception.

So many things can affect perception. Perception is a far from objective thing. Human beings, and the way they experience and react to their surroundings, are both far an objective thing.

Most people with Asperger's or autism, I am sure, wish that the way the world worked was more predictable, and I am definitely one of them. But if you can't change the way the world works, can you change your perception of it?

I don't think, personally, that you can consciously change your perception of things without a lot of other things that you can't control also falling in line. You can say to someone all you want "Don't be scared," or "You can do this," or "That's a silly thing to be scared of, get over it," but it just won't work. It won't work, no matter how much the person themselves might want it to, unless they are in the right mental place. (And even then nothing is ever guaranteed!)

What puts a person in the right mental place? It's important to have relatively low stress levels in your life and relatively low general anxiety. If you don't, your brain is on survival mode all the time, and you can't possibly entertain any new ideas or new ways of thinking, because everything feels so life or death. You need to do and see things the way you always have, because if you don't you feel like you will absolutely come apart at the seams. You have no mental energy or space for risk.

However, if you're in a better mental space, and you feel more relaxed, you feel more able to take risks. You can overlook small problems much more easily. If you take a risk and something goes wrong, you can handle it instead of going to pieces. And if you take a risk and something goes right - well, then it builds confidence for just maybe being able to take more risks - and in the process, it builds the number of experiences you have in your life. The more experiences you have, the more your perception of the world changes.

At least that's my theory.

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But while we're talking about perception, I think it's useful to also examine the topic of fear. It's simply amazing in how many ways fear - and the memory of previous traumatic incidents that often cause the fear of something - can control our lives, alter our perceptions and just get extremely embedded into both the body and mind.

It extends beyond fear to simply the perception of what is.
If you're bitten by a dog as a child, you will probably grow up hating and being afraid of dogs (or, some people would, anyway.) If you ate an entire super size bag of pretzels once years ago and threw up, you might consciously or unconsciously avoid pretzels even years later. If you saw an actor in a role you hated, playing a villain perhaps, and see him years later in another, more positive role, you might still harbor negative feelings against him on principle. Memory affects us in all kinds of ways.

Why have I been thinking about this? The reason is the recent doctor and dentist appointments I had in the last two weeks. I had literally tried for years to get up the nerve to make these appointments. Due to chemical sensitivities, it is very difficult for me to go into public buildings. After two years of moving across the country, trying to find a chemically safe place to live, my stress levels were through the roof. Taking an extra risk like going into a doctor's office was not something I could even begin to imagine.

After moving back to Maine, though, and finally falling into a stable living environment, I started to feel a little more confident and comfortable with the world around me. I started to think I could take the risk. It wouldn't be easy, but I would do it.

I did what I used to do when I had to go to an airport, which is an unfortunate neccesity when you are moving around the country. I hyped myself up for it, I talked about it. I visualized it. I imagined myself doing it and being okay; I imagined what I would do and how I would react positively if unpleasant things happened. I got the adrenaline going. Adrenaline has been an extremely important factor for me getting through difficult things.

And I was okay. Both in the dentist's office and in the doctor's office. It was not pleasant, and I had the "Oh my God, this is absolutely awful" reaction when I walked through the door of both, but I was not as agitated as I used to be. I was able to tolerate it better. I was able to acknowledge my dislike of it while not letting it overwhelm me. I knew it would be over relatively soon and I had in my mind the picture of how I would handle it. So I did.

And as a result, my cognitive functioning and reactions were much better than they ever have been before in such a situation. I could actually talk to the doctor and tell him everything I wanted to. In Montana, my doctor experience was so terrible, so traumatic, and the reaction to the building so great, that I literally could not talk more than a couple words at a time when I was in there. I paced back and forth the entire time I was there, including in the doctor's office. If I didn't, I felt like I would explode. I couldn't carry on a conversation with the doctor; I pointed to the print out I had brought. I felt terrible for hours afterwards. After an experience like this, is it any wonder I didn't want to go to a doctor's office again?

I am left to wonder, then, if my experience was better this time because of lower stress levels, which didn't send all my already excited neurons firing at a million miles per hour when I encountered something stressful, or because the building was less toxic. (That is likely, it was a small office, the Montana office was in a large hospital.)

Either way, I marvel at all the ways perception can be affected, and how it can change. If I could harness this power I would, but it has to happen on its own. Events change the way you feel about things. I couldn't have forced myself to be calm enough to go into a doctor's office in New York, Oregon or any of the other places I was in. But when the environment around you is good - emotionally and physically - your outlook, ie perception, changes.

This does not mean, for the benefit of those who may be reading and know me, that I am going to start going into lots of buildings or do all the other things such people probably want me to do, because I am simply not ready at this time. But I am entertaining the idea of it and what it would be like, and that means, in time, if things continue to go well, then I may feel that is worth a try. When I do try it is possible I will find that nothing has changed, that I still get the same reactions as before. And I will be dissapointed but not surprised. But then I may find the opposite. Time will tell, but time is not there yet. You can't push a person to be in a place they're not - and you can't push yourself to either.

I will most likely always be chemically sensitive, and always have problems with going into places. But if I can get my anxiety levels down enough, and if it is indeed anxiety that was causing the more nasty of my reactions, then perhaps I can get them down to a level where my reactions will be tolerable - as long as I don't do it too often.

But again, this is all in the future. A fantasy, if you will, that I keep entertaining. I am not ready for it now. But I hope sometime in the near future, I will be.

One more note on how past experiences can shape perception:
when I was told I'd have to give blood at my doctor's appointment, I was scared. It was a big deal to me. I even asked the doctor about getting a prescription cream to numb my arm. I vaguely remembered having it done in Montana two years ago and being more or less okay, but I was still scared.
I wondered if they'd miss my vein and how many tries it would take.

When they actually did it, it just felt like a pinch going in, and only hurt for a few seconds. I realized my perceptions about getting blood taken were not accurate. When I was a kid, though, because of a medication I took, I had to get my blood taken very frequently. And I apparently had very bad veins as a kid. They could NEVER get my vein on the first try. Or sometimes the second. Or the third. Or the fourth. I remember one memorable time when it took them eight tries! At one point my mom had the doctor give me the numbing cream so I wouldn't feel it anymore.

So, even though my veins are apparently easy to get these days, and even though the experience doesn't resemble that one at all, it is still the first thing I think of when asked to get blood taken. Or at least, I used to. Funny how memory works, huh? It can cloud an awful lot of things.

******************

I recently read about a therapy called a stellate ganglion block. They cut something somewhere, change some neural connections somewhere, and according to new studies and research, it's kind of like resetting the emotional center of the brain - the amygdala, which is the center of the brain responsible for emotional memories and responses. A Chicago Tribune article by Peter Cameron says that "It's resetting the connection between the central nervous system and the sympathetic nervous system." The therapy is still very new but some PTSD patients have found great relief from the fears and anxieties that used to prevent them from going many places and having a normal life. The procedure is usually used to control some forms of chronic pain, and has only recently been experimented on with PTSD (post traumatic stress) patients.

It's an interesting theory to me, because I know from what I've read that the amygdala, and the emotions that come from it, control an awful lot of the way we experience the world. Some people with MCS and CFS (chronic fatigue) have been eagerly trying an "amygdala retraining" program by a man named Ashok Gupta.

Cort Johnson at www.ei-resource.org has a good summary of the Gupta program. He says,

"Ashok Gupta recovered from chronic fatigue syndrome (ME/CFS)almost ten years ago. His research into his condition lead him to develop a new theory of the disease and novel techniques for treating it. He believes that the fear center of the brain - the amygdala - has become chronically activated - causing the body to over-respond to virtually every stimulus presented to it. Over time this results in exhaustion, hyper-sensitivity, increased pain, etc."

In an interview with Gupta, some interesting phrases popped out at me:

"Consider if you’re in a dangerous situation; your eyesight is sharper, your smelling is sharper, your senses are enhanced so that the Amygdala can take in more critical information to give you a better chance at survival. So the question for me is who opened the floodgates?

In CFS the body still thinks it’s being stuck in illness mode – it feels like it’s still being attacked. If you ask patients they’ll tell you that they feel like their body is under attack. They like their bodies are constantly overreacting; that they don’t feel right in their skin. They do feel anxious but it’s not a normal kind of anxiety; it’s a sense of a lack of control over their bodies."

http://www.ei-resource.org/columns/phoenix-rising/ashok-gupta-amygdala-retraining-techniques/

Gupta says that this technique is not psychological, but neurological; it is changing the brain structure.

It's kind of like someone set a ping pong ball going , and it keeps going back and forth and back and forth and it never stops, and in the process creates all kinds of emotional AS WELL AS physical symptoms.

"Amygdala hypersensitivity to bodily sensations and symptoms increases it’s sensitivity to emotional threats as well."

In many ways that last sentence could very well describe my last two years of life. So is there hope in amygdala retraining? Are there actually ways to change our perception of things we'd rather not percieve? Only time will tell.

Beta blockers are another interesting theory - used to cut out physical anxiety symptoms when someone has, for example, performance anxiety. Do they have a place in changing perception?

Sometimes, it feels like help is so close, yet so far away. Most human symptoms and perceptions, I believe, are a mix of physical, emotional and neurological, and you need to work on all three to change perceptions. It is an ongoing process for all of us, but it doesn't hurt to be more aware of how perception alters the way you experience the world - and then let it go when you've done all you can to change what you want to change. Then you need simply to wait, because things usually change again when you least expect it.

Bless the Broken Road

2010-04-16T23:02:00.000-07:00

I get a certain thrill out of seeing the familiar blue and white sign for the Town Landing Market in Falmouth, Maine. On one side it reads "Fresh Fruit, Vegetables, Groceries," and on the other it says "Fresh Native Ice Cubes." It's a very distinctive sign for a very distinctive place that has been around for many years.

When I was a kid, we lived two miles away from it, and I would ride my bike to it all the time. I'd go in for one of those delicious 5 cent pretzel sticks, or a Ben and Jerry's ice cream bar from the freezer. There was also a sandwich window in the back, and occasionally pastries for sale in the front.

The bike ride was a straight shot, took maybe fifteen minutes or so. Sometimes I'd just ride to Island Pond Road, which was the exact halfway point, and sometimes I'd ride all the way.

This is significant, because after two years of moving all over the country, from Vermont to New York, Oregon to Montana and back to New York again, I ended up back in Maine, in Falmouth, in a place that is only a mile from the famed Town Landing Market. After what seems like a lifetime of living in places that I just barely tolerated, places that were, in some cases, "a nice to place to visit but I wouldn't want to live there," and in other cases, "what the hell am I doing in this God forsaken city?" I finally figured out a way to get back home - as the Rascal Flatts song says, "Bless the Broken Road," indeed.

So now when I take a walk, I can walk to Town Landing, when I feel up to it. When I approach that blue and white sign, I feel a tingling in my heart. In my mind's eye, I see myself as a child, on a bike, approaching the store from the road to the left of me. You can approach Town Landing from about four different directions. As a child, I approached from one, but as an adult, more than ten years later, I approach from another. Literally and figuratively. But having "ground zero" remain the same - that connects me and makes me feel just a little more whole, to have this reminder of who I used to be connected with who I am now.

I have, on occasion, been feeling grateful lately. Not all the time, of course, because I still have my instances of pity parties, I still have my worries for the future, and I have a whole new set of worries than I did even a few months ago. But again, isn't that what life is about, for things to change? I suppose so, although in my heart sometimes it's a battle to get used to that.

But there are those little moments, where I remember to be thankful for what I have. And then feel almost guilty for not appreciating it as much as maybe I feel I should. Six months ago, a year ago, two years ago - I would have given anything to read a book. As a child, I was a prodigious reader, and would read several children's books a *day*, something I still can't believe. (Good thing they published so many of those Babysitter's Club books, right?) As an adult, I'd lie in bed for hours nearly every night getting lost in a book. It was one of life's greatest pleasures.

When, in April of 2008, I became sensitized to either the ink or the glue in books (I'm still not sure which), due to my chemical sensitivities, little by little I stopped reading until I was no longer able to read at all. The words would swim in front of me, my eyes and nose would sting, and I couldn't get through a paragraph. Like everything else that happened during that time, I accepted it and went on, because the alternative - thinking of it and actually feeling the despair at this was loss - was too horrible to contemplate. All I wanted to do was curl up in bed with a book, though, and it made me so cranky sometimes that I couldn't.

When I got back to Maine, I tried out some old books that were lying around my stepmom's house and found, to my delight, that I could tolerate them. It felt so good to be reading again. After a few months, I got brave enough to try some library books, and also to my delight, I have done okay with them as well. It is such a luxury to be able to lie in bed and read a book that I can't even tell you. Instead of taking it for granted and complaining about all my other problems, once in a while at least, it would do me good to think of how long I wanted this before it happened.

On the other hand, maybe sometimes the greatest blessing is to be able to live your life without *having* to think about things like this.

I could say the same thing about TV. After years and years of not being able to watch TV because the moving images made me dizzy, and hurt my eyes to even look at it for ten seconds, for some reason, I am now able to watch TV again. I get a kick out of watching all the old sitcoms I used to watch as a kid but haven't watched in years, like Gilmore Girls, Bewitched, All in the Family and Home Improvement. And I love having someone to share them with. I think it may have something to do with the tendency these days to have big screen TVs - when I was younger, they were much smaller. Marion's TV is what I could a "normal size," but most everyone else I know has upgraded to big screens, and those still hurt my eyes. It also has to do with placement - due to what I can only assume is some kind of sensory issue, I need to be looking at the TV a certain way and from a certain angle to be able to tolerate it.

All I can say is it I am glad beyond belief to have something in my life besides the computer and the phone to entertain myself. Most people take reading and watching TV for granted, but for years, they were things I couldn't even dream of doing.

They are small steps, but I feel little by little, the pieces of me are coming back again. I just wish it would hurry up and come back a little faster, because there is still SOOO much left I want to do.

I definitely think part of it has to do with the total stress load a person has, which has gone down dramatically since I have been in Falmouth. The stress load on me the last two years, moving to all those places, was so unbelievably high that almost every day now I think of it - a random memory comes back to me - and I wonder how the hell I ever survived it, and for so long.

I just hope and pray that it lasts, and will try to enjoy it for what it is while I have it, and hope that it continues to improve.

Meanwhile, I am happy that I can finally prove these lyrics of one of my favorite Rascal Flatts songs true (just substitute a place or situation with a person):

Bless the Broken Road

I set out on a narrow way many years ago
Hoping I would find true love along the broken road
But I got lost a time or two
Wiped my brow and kept pushing through
I couldn't see how every sign pointed straight to you

[Chorus:]
Every long lost dream led me to where you are
Others who broke my heart they were like Northern stars
Pointing me on my way into your loving arms
This much I know is true
That God blessed the broken road
That led me straight to you

I think about the years I spent just passing through
I'd like to have the time I lost and give it back to you
...
It's all part of a grander plan that is coming true."

Or, in the words of another quote that I like, whose source I am too lazy to look up at the moment, "Be patient with the questions in your heart, because one day, without even realizing it, you will live your way into an answer."

Isn't that what we're all trying to do? Live our way into an answer? Some of us just do it faster than others.

How I Became an Autistic Self-Advocate

2010-04-10T22:29:00.000-07:00

I submitted this essay to Newsweek several weeks, or maybe months, ago, but alas, nothing came of it. No surprise here. But perhaps I will find some appreciative readers here. :)

***

My awakening to self-advocacy began about six months after I received my diagnosis of Asperger's Syndrome.

Asperger's Syndrome is an autism spectrum disorder. People who have it have trouble understanding and receiving social cues. They may appear "off" in their interactions with others. They have trouble making friends. They are often very intelligent, but have no "social sense." Sensory issues often also accompany the disorder; sensitivity to noise, too much going on in the environment, smells, light and such is common.

I hadn't thought much about it for those months; it was kind of at the back of my mind. I didn't see much reason to tell people about my diagnosis; it was just another part of me. Well, that all changed one day at my college library.

I was feeling really groggy that day. I felt overwhelmed and overstimulated by the smallest of things; people's voices, people walking around. I needed a break.

I went into the basement bathroom of the library; the most private one that hardly anyone used. I went into a stall, locked it and just let my mind run loose with all the thoughts and feelings running through it. Some of them, I said aloud. There was no one else in the bathroom, and there usually wasn't. If someone came in, I would stop talking immediately; but this kind of self-dialogue was a big stress reliever for me. Usually, this did not bother anyone; and why would it? It wasn't hurting anyone.

But this particular morning was different. I heard someone come in the bathroom, and stopped talking out loud. Several minutes went by, and the woman came back. She asked me if I was okay. Used to the question, I said "Yeah, I'm fine, just a little bit overwhelmed, I'll be fine," and expected it to end at that, as it usually did. Instead, I got a "Are you sure?" and then the next voice I heard was that of my college security officer asking me to come out. I did so and gasped as I realized college security had filled the bathroom.

They asked me why I had been in there so long. I gasped and tried to respond. "I....I was just trying to calm myself down. I have Asperger's Syndrome, and one of the symptoms is sensory overload. Being alone for a few minutes and talking things out often helps me a lot."

The woman who had started this said, "I'm a psychiatric student at John's Hopkins, about to get my degree. She can't have Asperger's, because she can talk. Asperger's is like autism, and she couldn't talk if she had autism."

I tried to convince her she was mistaken and that Asperger's was very different from what she might have learned about autism. That people with Asperger's certainly could talk, and did so quite well . She threw around a lot of loaded psychiatric terms about emotional instability that scared the college cops. They wouldn't listen to me.

They took me to a cavernous, gloomy office in the basement of the library I had never been to, and questioned me for an hour about my behavior and what Asperger's was. I was shaking and so overwhelmed I could barely talk, but I managed to defend myself. Nothing I said made any difference to them.

Finally, after an hour of this, they let finally let me go. I was shaken. I was thankful to later get apologies from both the Residence Life and Security offices on campus for what had happened. They didn't know any better; most people don't know what an adult with Asperger's looks like. The incident motivated me to want to fix this.

I wanted to lay it down unequivocally: this is what an adult with Asperger's looks like. We have different needs than you. We get overwhelmed easily. We need time alone. We process things differently. We communicate differently. However, we also have many strengths and positive traits to go along with our difficulties.

Thus motivated, I wrote an editorial about what Asperger's was, and sent it to the Baltimore Sun. The article ran on Thanksgiving Day, and I got more than two dozen email replies to it. People told me they saw themselves, their son, daughter or friend in what I wrote. People thanking me for describing them so well.

I was stunned and very happy by the response I got. I felt validated and wonderful that I was able to make a difference. After this, I was hooked on self-advocacy. I was invited to speak at two autism conferences in the Northeast as a result of the article. I had essays published in national autism magazines. I had found my voice; a voice that allowed me to educate the world on what being an adult with Asperger's was like. A voice that gave me a sense of meaningfulness and purpose.

I shudder when I think of the fate of the people that lady from John's Hopkins has treated. I still wish I could have a talk with this woman. But, if it weren't for her, I'd never be doing what I love, and so maybe everything does happen for a reason.

The Self-Advocacy Conundrum

2010-04-07T22:46:00.001-07:00

Having autism, in many ways, means you need to learn how to stick up for yourself. You need to learn how to politely but firmly articulate your needs. No one else knows your particular needs, so you have to be the one expressing them. Communication helps prevent meltdowns. It is much better to express a need, even if it's not a popular one, and even if you feel embarassed, then to have a screaming or crying meltdown (or worse).

This message was brought home to me last weekend when I was shopping at Whole Foods, as I do every week. I was in the 5 items or less express lane, which is the most narrow check out line. It is bordered on one side by the information/manager's desk, so it is a tight squeeze. There were a lot of people there.

That alone I could have dealt with, but right in the middle of a normally routine transaction, the check-out woman pulled out a bottle of hand sanitizer and sprayed it on herself. A wave of panic rolled over me. I have chemical sensitivities, as well as major anxiety issues over chemical products. There are few things I hate more than hand sanitizers, with their slew of toxic chemicals contaminating the air and making me feel ill.

Now, of course, this was a natural food store, and a natural hand sanitizer, but still, the idea of it freaked me out. I didn't know what was in it - just because it was more natural didn't mean it was necessarily 100% safe - so I had to assume it was dangerous. And I wanted to get out of there.

First, though, I had to complete the cash back transaction I had started. I normally know how to do this, but my brain was frazzled now, and I couldn't figure it out. I looked at the screen frantically, trying to remember what button to push. Unable to figure it out, I asked the woman behind the counter what I should do.

Instead of verbally telling me, she leaned over the counter to show me, until she was practically in my face. My previously controlled low level panic turned into full blown "Alert! Alert! Imminent meltdown! Loss of control in 1, 2, 3...."

I do not like having people that close to me in normal circumstances, but ten seconds ago she had just sprayed the hand sanitizer on her, and now she was right next to me. This triggers all kinds of alarms in me. My brain went into panic mode. It was the worst thing she could have done - but of course she didn't know that. She didn't know and couldn't have known how much her hand sanitizer would bother me. I certainly don't fault her for that.

But still, I had to do something. You know how people say sometimes they can see their life pass before them when they're in a life or death situation? In this case, I could see clearly that I was headed for a meltdown if I didn't alleviate this situation in the next two seconds. Not quite life or death, but same general concept.

(This is novel for me, as usually I'm either in a situation with an annoying level of sensory overstimulation but not an overload or meltdown-producing one, or I go from annoying to overload and meltdown so fast that I didn't see it coming and couldn't have possibly stopped it if I wanted to. It just goes over the top and everything falls apart.)

So I said the first thing that came to mind. I said firmly and urgently, but politely, to the check-out lady, "You need to move away from me."

It worked, and the situation was diffused (and I apologized afterwards), but I couldn't help filling a little bit guilty. I've been thinking about it for days, in fact. I can't help but wish I had inserted a "Please" in there. "Please move away from me" would have sounded so much nicer. I don't like the fact that I basically issued a direct order to her and treated her a bit like a kid. But on the other hand, it was what came to mind and at least it was polite. And it was far better than a meltdown.

It got me thinking, though. I've read a lot about autism self advocacy and I suppose this is just one of many such adjustments we have to make to live in the neurotypical world. We can't be so concerned with going along with the crowd, or worrying about what other people will think of us, that we ignore our needs and ignite a situation that will potentially harm us or others.

Parents of kids with autism have to do an awful lot of advocating for their kids. They learn pretty quickly to put personal feelings of shame, embarassment or self-consciousness on the back burner in order to care for their kids.
I read a lot of autism blogs, and have regularly followed seven or eight of them for some time.

When I think about examples where parents have overcome personal obstacles to better advocate for their kids, in small or large ways, I think about Michelle O'Neil of Full Soul Ahead, who got over a life-long fear of singing in public to help out her daughter Riley during a church event. I think of Jess of Diary of a Mom, whose work on the Inclusion Committee of her school helps build a better environment for her autistic daughter, Brooke, to thrive in. I think of how carefully she plans and approaches communications with other parents in an effort to get them to understand Brooke better. Or "Mom Not Otherwise Specified," who just wrote a stunning series of posts, which should be published in a book some day, about going into her son Bud's classroom to talk to his class about what autism is.

Knowing how to advocate for your kid means knowing when to push and how far. Tanya at Teen Autism demonstrates this art with her eloquent letter writing to the her son's school to improve the level of his services and try to stop some bullying that was going on.

No one has approached the topic of self-advocacy better than Rachel at Journeys with Autism, though. Having discovered her Asperger's diagnosis at mid-life, hers has been a constant struggle of trying to figure out where she fits. It has been a painful struggle of trying to figure what accomodations she can reasonably ask the world to make for her so she can better access it, what instances she can try to override her own needs in order to appear more "socially acceptable," and in what cases she needs (or feels she needs) to simply drop out of the game. So many of her struggles mirror my own, but in different ways.

When to ask for accomodations and when not to? It's a valid question. For some people, there is little question to it. The adjustments they need due to sensory and anxiety issues are very real and reasonable in the situation. Still, when a person just wants to "be like everyone else," it can be hard to swallow your pride - both as a mom and as a person with ASD - and ask for them. There is no doubt that it can be embarassing; but embarassment is in the eye of the beholder, and is an emotion one gets over sooner or later if they want to be at all effective in the world.

The thing about autism and Asperger's is that everything about you *is* different. If you try to hide it, you'll only be doing yourself a disservice; it won't stay hidden and will come out in ways you might not like. It's better to accept it - accept that you will come accross differently to people, accept that people might find you weird, accept that you are occasionally going to have to ask for little things to be done differently for you - but accept it with a smile on your face. If you have to be different, do it cheerfully, that's what I say. Smile at people. Hopefully, the spirit of your true personality will come through, and people won't be so caught up in who's "different" and who's not.

And that means that self-advocacy will stop seeming like such a big deal and just become a normal part of who you are, something you don't think twice about. I think that's a day we'd all like to see.

This also goes for your kids. Be proud of who they are instead of ashamed. They learn a lot about how to feel about themselves and how to interact with others from you. They can pick up your feelings about them. (This is not directed at anyone in particular, certainly not any of the blogs I mentioned above; it is just a general message to parents of special needs kids.)

Self-advocacy: a little communication makes the world go around.

Safe housing for people with chemical sensitivities

2010-04-06T21:55:00.000-07:00

This is an issue near and dear to my heart, having just spent three years looking for a safe place to live. Chemical products are not good for anyone, but especially not for those with MCS or with autism. You will notice from the biomedical approach to autism that the biomed treatments for autism are nearly identical to those for MCS: detoxification, oxygen therapy, sauna, vitamins, nutrition and so on. The reason is that *some* (I'm not saying all) varieties of autism are caused or made worse by chemicals in the environment. Now, I know this is a controversial issue and I am not trying to start a fight between biomed and non biomed people. I recognize there are many different theories on causes and treatment of autism. I personally think we should take a little from each theory and not put all our eggs in any one bucket. Biomed is just one of many theories.

But enough of that. Whether or not you believe chemicals affect those with autism, they definitely do for those with multiple chemical sensitivity (MCS). I wrote the following for a friend who is trying to build safe housing for those with MCS and wanted to post it here to raise some awareness among my autism readers. Thank you for reading.

***
Imagine the following scenario. Everywhere you go, the smell of common, every day objects disables you. Perfume, cigarettes, body lotion, someone's shampoo. New paint, air fresheners, pesticides, new carpet. Windex and Comet, and other commercial cleaners.

Perfectly normal parts of modern life, right? Not for some people. For people with multiple chemical sensitivity (MCS), exposure to these fragrances can range anywhere from mild physical symptoms to life-threatening debilitation. People with MCS have adverse health effects to chemicals: difficulty breathing, abdominal pain, chronic fatigue, muscle and joint pain, decline of mental function, memory impairment, asthma and so on. People who are sensitive to chemicals cannot live in most traditional apartment buildings, which are built with toxic materials and often have fragrances left from previous tenants. They cannot easily share housing with others, either.

So where does that leave them? Often, nowhere. The search for chemical-free housing becomes so desperate that many end up living out of their cars. Many move to warmer climates where they can camp out. Many end up homeless. These are people who had lives, careers and families before they got sick with chemical sensitivity. MCS robbed them of their lives. Must it rob them of a place to call home as well?

Many of us take "a place to live" for granted. A safe place to live that we can look forward to coming home to every day. But for millions with MCS, this is just a dream.

James Van Raden wants to change this. He is a general contractor who lives in Minnesota. He has started online groups for people with MCS to gather and has seen the need. He want to build safe, healthy, toxin-free housing for these people and anyone who needs it - and he wants to make it affordable, too. This will not just benefit people with MCS. It will benefit anyone who wants to live in a healthy environment. People with asthma or lung related impairments, or people with a family member with autism looking for a clean environment will particularly benefit.

But, this housing is for all of us. Because after all, we spend the biggest chunk of our lives in our homes. Shouldn't they be safe and healthy for us to breathe in? Shouldn't that be a right everyone has - safe, healthy and affordable housing?

Most people with MCS are on disability and can't afford healthy housing. That's why a cornerstone of this project will be not only that it's healthy, but it's affordable, too. But we can't do it without you. You reading this now. You have the power to help these people - to help a whole lot of people. Won't you help us change the face of healthy, affordable housing and make a pact? A pact to come back here and vote for us once a day throughout the month of April?

People all over the country will thank you when they finally have a place they can live. Your children will thank you, someday, for helping to pave the way to more accepted models of non-toxic building. You can help start a revolution.

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If you have an open mind, things may fall out (or, my day in Portland)

2010-04-05T00:37:00.000-07:00

East End Beach, Portland, Maine

Sometimes, keeping an open mind can be a good thing. My friend N drops me off in Monument Square in Portland once a month to enjoy myself while he goes to a meeting. Then we meet afterwards for dinner. With four hours to kill, I often run out of time by the last hour or two. Not that I mind; I love being in Portland. This time, though, there was no chance of running out of things to do.

The first thing I saw when I stepped out of the car was a huge blue tent that said U.S. Cenus on it. The census people were there to give information and promote the census. Their tables were full of free T-shirts, caps, pens, keychains, tote bags and what have you. Something novel! Something different! Already, it was exciting.

The weather was a beautiful 65 degrees and sunny. Monument Square was full of people. They were waiting, of all things, for a parade of topless women scheduled to start in a few minutes. Apparently, the women were protesting that men could take off their shirts in public, and they couldn't. When it started, hundreds of people followed them down from Monument Square to a park about a quarter mile away. It was quite a sight to behold! Men as well as women marched, so it wasn't like the women were all in one place.

There were maybe a dozen of them, roughly speaking. The crowd was both male and female. But, it is worth saying, only the men had cameras! Tons of people crowded around them in Tommy's Park, taking pictures. It was so crowded you could hardly see them. The women did not seem to mind; they expected this. It was a very peaceful crowd. I got tired of it quickly and returned to Monument Square to get away from the people.

I talked to the census people for a while, who were quite friendly. One was from Europe and we discussed how different social issues played out differently in the two places. I sat on a bench and enjoyed the sun and the breeze for a while. Then I walked back to the park, where I met a friend of mine I hadn't seen in three years. I had used to see him a lot around Portland when I lived there.

We talked for an hour, and then I left to continue down Exchange Street. There was a guy playing Grateful Dead songs on the street corner! I was in heaven. I thought to myself "I wish they would play 'Uncle John's Band,' and lo and behold without me even saying that, it was their next song! I danced as they sung and left when they stopped. Just one more reason why I love Portland!

I walked down to the water and bakery. Along the way, I saw a man selling stained glass. I usually don't go for crafty things, but the multi-colored peace symbol reminded me of something from my childhood. I felt drawn to it, and ended up buying it.

My friend N came by around 5 to pick me up and we joined our other friends at the East End beach. We walked around for a bit and took pictures, and then went to Whole Foods for dinner. They went to see a movie while I did my grocery shopping. I was exhausted when I finished. I'd been out and about in constant activity for almost ten hours at that point. What a day!

The autism connection:

As we drove home, I thought how I could make this a blog about flexibility and adaptability. For example, not knowing what I would do when I got to Portland but trusting I'd find something to do (flexible). The original plan was for N to take me home before the movie, but I hadn't gotten to Whole Foods by then and we decided to spend more time at the beach and for me to do my grocery shopping when they were at the movie, even though it meant me staying out two hours longer than I'd intended (adaptability).

My friend had to cope with some changes to our plans too that took him a little while to adust to. We all have different tolerance levels for unpredictability and schedule plans. We all have different coping mechanisms for dealing with them. I myself need to have everything planned out pretty exactly. I am far from a spur of the moment person. But I can make minor adjustments if, and this is the big key, IF, I am given time to process them and think them over before comitting to them. I just have to "re-tweak" my brain and then I can usually do the unscheduled thing. But it definitely doesn't come automatically, and only works for small things. And I definitely don't like it, nor would I be able to do it all the time. For me, preparation is king. My brain needs to be mentally oiled for everything I do. I need to imagine what will happen, the possibilities, and prepare myself for the varous stimuli I will feel and have to respond to. Otherwise, a state of huge overwhelm comes immediately. This isn't an obsessive thing, this is a real thing. It's the way my brain works, and I don't mind taking care of my brain and body in this way so I can function optimally.

Anyway, it was a great day, but I think I need a little less in one day next time. :)

To see pictures of my adventures, and Portland in general, please click here. I just put together a slide show of my beloved city.

Peace

2010-04-04T21:08:00.001-07:00

When I was with my friends yesterday in Portland, I walked past a man playing a musical instrument and selling stained glass pieces. I gave the man the cursory look I usually reserve for crafts, long enough to make sure there wasn't anything I was missing, but not so long as so they'd think I was interested and stop me. This time, though, something grabbed me.

I am not usually an arts and crafts person. I think the little creations people make and sell on the streets are pretty, and I admire the colors, but I would never buy one. What would I do with it? I don't wear jewerly, and any knick knacks would get lost in a day's time, never to be seen again. Plus, most of the crafts that I might consider buying just for the hell of it are quite expensive and out of my price range.

This stained glass peace symbol, though! Wow! First of all, I love peace symbols. I always have. It's a symbol of my love for the '60s. Second, it was beautiful. The colors jumped out at me. Sky blue, light green, dark blue and dark red. Different but complementary textures of glass. I didn't know why I liked it so much, but my heart was calling out to me in a language I couldn't put in words. I felt connected to that piece. Usually I only feel that way about junk food and music. I was surprised. :)

When I was in sixth grade, my grade class all made stained glass items. I had a very creative teacher. Mine was a heart, with the most beautiful tint of red for glass. I don't remember much about it, but the shape, size and patchwork-style of this piece reminded me very much of my heart from long ago. The school auctioned off the pieces to raise money for some cause I can't remember. Of course, everyone's parents bought their kids' pieces. Even my mom, who swore before the auction that she wouldn't. Luckily, mine only went for $40. Some went for more than $80.

My heart ached for this similar piece in downtown Portland, or maybe just for the memories that went along with it. I thought, well, maybe this peace symbol can be a bridge. A bridge from the person who I was in the past to the person I am now and will be in the future. Hopefully, when I look at it, I will be reminded of strength, and peace, and the healing power of time. Maybe I will just smile at its beauty.

I stood there for the better part of ten minutes, considering, before I finally made up my mind. I wanted it. It was going to be mine. And for only $10, it was quite a good deal. I made up my mind I wouldn't spend more than $15 before I asked the price, and was pleasantly surprised when it fell within that range.

Either way, it's the first crafty thing I have ever bought in my life, and for once, I spent money on something that will hopefully have more lasting value than pack of crackers. That feels good to me.

Autism Awareness Day Social Experiment

2010-04-02T23:51:00.000-07:00

April 2, 2010 is Autism Awareness Day. My friend Lydia asked me if I wanted to pass out autism awareness pins in honor of it. I'd never done anything like that before, but I immediately said, "That would be a great idea!"

She sent me 50 beautifully made pins, made out of actual puzzle pieces and pinned to a yellow card that said "Autism Awareness Day: Where do you fit?" I supplemented them with an information sheet I made on about what autism is and local resources (and yes, I put my blog on there, too.) Besides wanting to raise autism awareness, I was curious about the social implications of how many people would or would not accept the pins, and what their reactions would be.

When my friend N and I arrived at Monument Square, a popular gathering place in downtown Portland Maine, we were happy to see a lot of people out and about. We weren't the only ones offering free wares to the public, either. There was a woman with a "Free Hugs!" sign already there. I had seen her once before and loved the idea. I gave a pin and a sheet to her friend, and took a picture of her.

From an operation base by the center of Monument Square, I scouted the territory. I next targeted two men leaning against the wall of a coffee shop. I went over, with Nate behind me, and said, as loudly and clearly as I could, "Hi. It's Autism Awareness Day. I have some autism awareness pins and information to hand out. Would you like one?" They both said and thanked me.

The woman sitting in the outdoor restaurant declined, which I probably should have figured. But the woman sitting against the monument with her cute one year old daughter proved to be very amiable. When we handed her the pin and sheet, she said, "My daughter has kidney disease. Somehow, we seem to go to the same doctors as the kids with autism. So I see a lot of them." We talked for a few minutes, and I took pictures of her beautiful baby daughter. I have to include these because they are just so cute! The second picture is the best picture I took all day.

For the next 45 minutes or so, I targeted people in the square who were either standing or walking slowly. I discovered that stopping people who are walking through generally did not work, and stopping people who were not smiling did not work either. A few minutes after we showed up, yet another duo out to enjoy the sunny weather and the people it brought showed up. They had a big sign that said "Speak About the Future," and a tape recorder. So, we went up to them and spoke about the future. I told them a nice roast beef salad was in my future, because we were going to Whole Foods afterwards. And we gave them a pin and a sheet.

Most people said yes and were quite friendly. There were only a few who refused, and no one I wouldn't have expected to. After alternately taking pictures and handing out flyers in Monument Square for a while, we headed back to the cat to get my coat and gloves. At 49 degrees, it was way too cold for just a sweatshirt. So much for the 70 degrees that had been promised.

It was getting dark, so we headed down Exchange Street to an area known as Tommy's Park. We found several people there to give flyers to. One person there told us he had a friend who had a kid with autism. Then we stumbled upon the should-have-been obvious idea of standing at the intersection of Exchange and Middle and stopping people walking by.

We got four or five people in a row that way. Presumably people on their way to go out to dinner and in a good mood. For every person, I gave my spiel, trying to keep it short and enthusiastic, and then held my breath for a second while waiting for their decision. It was gratifying to some degree, because most people seemed to be pleasantly surprised and then very pleased, giving an enthusiastic and genuine "No, thank *you*!" back to me when I thanked them.

My favorite moment, though, was the party of four well dressed people, mostly men, that I stopped. They were one of the few groups where every single person took a flyer and a pin, to my surprise. And even more surprising, as they were walking away, one of the men shouted out "Wear blue!" It took me a minute to react. "Wait, how does he know about that?" I said to N and R, who apparently did not know about it either. I called after him as he was crossing the street, "How did you know about that?"
"My friend has a kid with autism," he shouted back with a smile.
"But how did you find out about the blue?" I said.

I forget his answer, actually, but still thought it was cool. There has been an Internet campaign the last several days for everyone to wear blue on Autism Awareness Day. I thought the idea was somewhat silly, because the non-autism aware people were not going to have any idea that the blue signified anything. I thought it was just limited to a few people on the Internet. But apparently, this man had heard of it.

We walked down Exchange and talked to a few more people. One was a teacher at a school for autistic kids and said she didn't need to be any more aware, but she took a flyer anyway.

In the end, we gave flyers out to about thirty people. There was an equal number of males and females who accepted, although I didn't keep count. (I had originally meant to.) There were about seven or eight out of around 40 in total that did not accept the flyer or pin. What is that, around 23%? There was a similar number, seven or eight, who mentioned they knew someone with autism after being given the flyer. If one in every 150 has autism, and we talked to 40 people, does that mean that the results were higher than the national rate? I think so. And it was definitely a random sample.

We walked back, me with flyers in hand, and went to Whole Foods for dinner. I thank N and R for their help in holding and passing out the flyers, as well as for their moral support in this endeavor. And thanks also goes to Lydia for providing the pins and the idea. Many people commented on how pretty they were. One person even thought I was selling them, and took one when I told her they were free. I'd love to do it again. I like connecting with people, as long as they are as friendly as this crowd was.

The taking pictures part was also fun.