Wednesday, December 29, 2010

On Bush Whackers, Friends and New Year's Eve

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.

Monday, November 29, 2010

A Most Unusual Thanksgiving

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!

Saturday, November 6, 2010

Meandering Around Portland

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.

Sunday, October 24, 2010

What I Learned from Making Hummus

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


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!

Sunday, October 10, 2010

The Anesthetic Effect

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!

Friday, October 8, 2010

Internalized Self-Hatred and "Spinning into Butter"

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.)
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.

Wednesday, September 15, 2010

My Name is Kahn

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.

Tuesday, September 14, 2010

Funny Keywords Used to Find My Blog

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


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!

Other AS searches:

what does the state of maine offer to aspergers kids

autism yarmouth maine

aspies housing in portland,oregon area

aspies and adulthood

aspergers and writing styles

asperger roomate portland


And then the Clam Festival....

2010 yarmouth clam festival fun run pics

2010 yarmouth clam festival

clam relaxing ..... ???

bad clam festival ...... well I guess someone didnt enjoy it :)

Sunday, September 12, 2010

All about Attitude, Illness and Living Life

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. 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.)

Saturday, September 11, 2010

End of Summer entry

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.

Thursday, August 26, 2010

The Uncharted Path: A Book Review

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 To purchase this book, you can email her at

Tuesday, August 24, 2010

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

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?

Tuesday, August 10, 2010

Book Interview

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.

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!

Saturday, July 24, 2010

On the Matter of Empathy

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 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.