Tuesday, December 18, 2012

Cloaked in Authenticity

Note - I just found this post from two years ago on a Wordpress acount I made but never used more than once. I originally titled it "The Girl in the Prom Dress" but I like this title better. Two years ago.... This was a prescient post. I like it. I don't think it's on this blog so I am posting it here.


I was flipping idly through some pictures that had been posted to my Facebook account. I stopped short when I saw my prom picture. What a different world, I thought. Never again will you ever see me in a dress. Much less a sleeveless one, with long hair, a necklace an even, of all things, a handbag. Although I have to admit, the dark blue color sure did look good on me.
My friends all wore long, flowing dresses, but I stood barefoot in a simple, short, dark blue dress loaned to me by a friend only a few hours before, when I had made a last minute decision to go to the prom. Dances are not my thing, but despite my objections I decided to give it a try. My hair was long, blonde and curly, one of the few times I have had hair longer than an inch in the last ten years.

Then I flipped to a picture I had just added recently of me on a hiking trip with some friends. The picture was far from glamorous. I had on a grungy grey sweatshirt, white cotton pants and very short to almost non-existent hair. This, or some variation, is my usual outfit. The picture was less than flattering, but I didn’t care, because after all, it was me. My smile was joyous, and to me that meant everything. I had captured the joy of the day with that picture.

Many times, over the years, I have been told by well-meaning people that I should change my appearance. People would like you better, they say. You’d get along better in the world, they say. People judge by first appearances, they say. Why don’t you grow your hair out? Why don’t you wear nicer clothes? Is that really the nicest clothes you have?

What they, or at least the world at large, often don’t understand is that I don’t have the luxury of looking nice. Severe sensory issues prevent me from wearing almost any piece of clothing known to man. I need soft, loose, cotton clothing to be comfortable. And even in that category, well, very few things work. I have spent several hours in large clothing stores before and came out with nothing. My dad once took me to Bloomingdale’s on a New York City trip, and all I came out with was a Tamagotchi t-shirt. And that was good for me! Everything is too tight, the textures are uncomfortable, the seams are sewn in the wrong place, it sits on my body wrong, it’s got buttons, and so on and so forth. And that was before I developed chemical sensitivity issues, which complicates the issue even more.

Because of this, a good clothes day for me is when I can actually wear them. Anything, that is. I’ll take anything that doesn’t make me want to start screaming when I put it on.
As for my hair, I can’t stand the feeling of hair on my head. It just feels heavy, and when it gets too long, it is literally the only thing I can think of until I get it cut.

I’m a firm believer that people should be functional in their clothing. I don’t understand why people torture themselves to wear high heels that make their feet hurt all night, or squeeze themselves into an outfit that makes them feel like they can’t breathe just because they think it looks good. As far as I’m concerned, if I’m not comfortable in something, I’m going to be grouchy and irritable all day or night because of it. This will
affect my interactions with others, and give them a bad impression of me. It will affect my experience of them negatively as well. The effects of these uncomfortable, intolerable clothes will send my stress levels through the roof, and make my coping abilities nil. Now, why would I choose to have clothes or hair that looked good over being able to function in the world and having a smile on my face when I interact with others?

When I looked at the prom picture of me, with my curly blonde hair and my perfect dress, for a moment I felt a stab of envy. This is the kind of girl I could be. I could look like other people my age if I wanted to. It’s possible. I could look, well, more “normal.” But then I remind myself how foolish this is. What did I really want when I looked at that picture? I wanted what went along with my perceived notions of what that girl’s life would be like. I wanted the life of a typical 20-something. I wanted people to like me; I wanted lots of friends; I wanted a life of social ease and happiness. It’s an illusion, of course. Because that isn’t me. And you don’t get friends, social ease and happiness by being something you’re not. My warm smile, my enthusiasm, my care and concern for others? Those will, in time, get me friends who mean something to me, and they’ll do it whether or not I’m wearing a Tiffany dress or a Marshall’s grey sweatshirt. Mascara, tight clothes and expensive haircuts do not a make a person into who they are. Integrity, kindness and being true to oneself do. So when I look at that prom dress now, I am glad to have it as a memory of a time when I tried something new and succeeded. But I am even happier that the real me was still waiting for me, unchanged, when I got home that night.

Monday, December 17, 2012

A Hanukkah Miracle?

Congregation Bet Ha'am, South Portland, Maine
It's not often I come home from an outing with a Hanukkah song stuck in my head in the month of December (or any month, for that matter).

Jingle Bells? Sure. Walking in a Winter Wonderland? Of course. But "Light One Candle," by Peter, Paul and Mary? Never.

And I must say, it was an intensely pleasurable experience. Or would have been if I remembered more of the words.

How did this happen, you ask? I went to a Hanukkah party at the synagogue in South Portland.
There was a service, and social time with crafts and games afterwards.

I have only been to a synagogue a few times in my life, and I can't actually remember any of them.
The list of buildings I do go into is very small, and I was going alone.
Yet, I still decided to go.

My goal is to increase social connections, so any experience that sounds feasible and somewhat interesting I've been trying to do. Fortunately, this place has concrete floors (amazingly) which work well for my chemical sensitivities. That was the main reason I felt comfortable going. I wanted to celebrate Hanukkah, which I hadn't done properly in several years, and I wanted to meet new people. I knew it was on the bus line and I even knew where - only 2 miles down Main St on the corner of the next street, a short ride. The bus times matched up.

And, of course, there was the promise of cookie decorating. The other day I had wanted to decorate SOMETHING, but all I had was food coloring and marshmellows. Apparently, food coloring isn't really the ideal medium for marshmellow decorating, but I tried.

                          My attempt at a marshmellow menorah with food coloring designs

So, since I felt I needed more stimulation in life than playing with food coloring, I decided to go. So I could play with frosting instead. No, just kidding. Although I must admit it did factor into my decision. =)

They had a greeter at the door, who led me to a library area. There were 2 people my age there who were quite friendly. We talked for a few minutes, and then they led me to the sanctuary area for services, as they were leaving and wanted to find someone for me to sit with. Mission accomplished, I was talking with this woman, having no idea what to expect from a service, when I heard and saw the rabbi singing. With a guitar. My mouth dropped open. "He's SINGING!" I said. It is entirely possible that my idea of modern religious services needs updating, but I had no idea that singing was part of it. It was beautiful.

After lighting the menorahs, he continued with the Peter, Paul and Mary song "Light One Candle." I love this song and listen to it almost every day of Hanukkah. I was shocked and ecstatic, actually, because I had been dying to hear this sung live. I sung loudly and enthusiastically. The woman in front of me said "I was wondering how you knew all the words!"

I was silent for most of the remaining service as it was all unfamiliar to me, but kind of nice to hear. The sound of the language was familiar, anyway, even if the words were not.

I met a woman in the social hall in the ensuing social portion of the night who was from the town bordering my hometown and had kids in my former school district. We hit it off with a discussion about that, and she ended up giving me a ride home.

So, all in all, I  think it was a success.

That's after I had gone to the City Hall menorah lighting the previous Saturday (new building for me), an impromptu doctor's visit (something I would never have considered doing in a million years before) that Tuesday, attended a meet-up with a recently made friend and 2 new people on Wednesday.... and spent the evening scoping out (ie *going into buildings that I would not usually set foot in*) possible restaraunts/cafes/coffee shops for possible meetup locations in Portland on Thursday. And oh yeah add the going to a synagogue for the first time I can remember on Friday.

Who is this person? I barely recognize her. But I like her. I hope she can stay and play...

I was pretty beat after going out 5 out of 7 days.... Yes 5 out of 7 days.... which really must be some sort of record for me... but strangely, after one day of rest, I was actually ready to go out again today. I didn't, because the weather is crappy and it got too late, but I could have. (Hey, the light burned for 8 nights for the  Maccabees, I think 4 consecutive nights for me is pretty damn good.)

So I'll just wait for my gelato meet-up with what will hopefully be 4 new people plus my friend M on Tuesday... and maybe the senior luncheon at the synagogue on Wed if they let me go.

Yeah... I hope this lasts. =)

Saturday, December 15, 2012

Autism and the Sandy Hook/CT Shootings

In the wake of this terrible tragedy, there are no words that are adequate to express how horrible it all is. So instead I am going to point you to Paula C. Durbin-Westby's excellent post on the subject. 
Paula C. Durbin-Westby is an autistic adult who has offered some views as an autistic (Asperger syndrome), as a parent and as an autistic parent on the shooting in Connecticut in Mother with Asperger Syndrome Grieves Sandy Hook Elementary Victims .

She says:
Today, December 14, 2012, I got a text about four minutes before I walked into my son’s school to play the piano for a winter program. The text said that 18 (then up to 20) children had been killed at an elementary school, not unlike my son’s. Children the age of the children I would be making music with in a few minutes. I was in shock. The texts I was receiving came from my dear brother, who has small children of his own. Since I was not online or near any media sources, he wrote to me what I was seeing on breaking news, and we texted together, as parents, about how horrible, how unthinkable, this heinous act was. His children were with him; mine was in school, and I had to resist an overwhelming impulse to sign him out and leave.

Please read the whole post at

Tuesday, December 11, 2012

Use Your Words

"Use your words" is a statement often used with small kids who are pushing and shoving or otherwise behaving in what is considered an unreasonable manner. It is a reminder to use language rather than behavior. Behavior clearly is communication, but not always the most useful form of it.

This post, however, is about a different form of using your words. It is about using words to define yourself. It is about the words others use to define you - or don't.

Words are powerful. Words have the ability to shape lives. Your whole idea of how the world works, your whole idea of who you are, and your role in the world. All defined by words - or feelings that originated in words.

What do you remember about the way you were described as a child? What is your first memory of yourself? I was described as smart - although I always knew there was something wrong or different about me. There were no words for that, though. Asperger's was not a diagnosis I would get for another dozen years or so. I was told that my intelligence would come in handy when I was older. I have one memory of a summer camp of some sort. Sitting on a gym mat. A teenage counselor telling me I seemed much older than the other campers, more mature. All good things, she assured me.

But how? How could these be good things? I was 10 ( and 8, and 12, and 14, and you get the idea...) I wanted to know why I wasn't like the other kids my age. I wanted to fit in. I wanted to be able to talk to them. I wanted to be, just once, not so "separate." And I would have traded all the smartness in the world for it.

Sometimes I was "sweet." Sweet is such a non-specific word. I grew to hate it. Wasn't there anything else good about me? So far I knew that I was smart and I was sweet. Not exactly the recipe for success in my book.

This was countered by far, far too many messages from my peers about being different, awkward, weird, and "other." Messages about being socially incompetent, even about being selfish or deeply flawed in some way. These messages were not usually specific, but they were coming from everywhere, every corner of my existence, so they must be true. They didn't hold a candle to "smart" or "sweet."

People believe that they are who they are unless given good reason to believe otherwise. I think there is a lack of positive reinforcement in our culture. Good traits are rarely highlighted. People rarely have the opportunity to change their mind about themselves for the better, unless they meet someone willing to show them, and to be persistent about it.


I finally had the opportunity, recently, at 28, to begin to have cause to redefine my 20 year old perception of myself. I joined a meetup group where the members seem welcoming and to genuinely like me. Yes, this comes as a surprise. I imagine it will for quite some time. But it's a start.

I met a longtime blogging friend in real life, who after the meeting devoted a whole blog to the meeting. Make sure you go look at Jess's blog at Diary of a Mom. https://adiaryofamom.wordpress.com/2012/12/04/kate/

Her blog nearly brought me to tears. She used her words. Thank you, Jess, for using your words.

"The concrete things that I knew about Kate are that she has Asperger’s, and also that she has some pretty serious sensitivities to fragrances and chemicals that can make life particularly challenging.
So that’s what I knew.
But please believe me when I tell you this — those are NOT the things that you notice when you meet Kate. Instead, what you see — what you can’t possibly miss — is her energy.
She laughs easily and she laughs a lot. And her laugh is infectious. It’s physical and it’s big and it’s all-encompassing. It draws you in and it wraps you up and it takes you along on its journey to a whole other place — a better, brighter, lighter place.
And even though it’s different from the one that I know so well and love so much — its effect on everyone around her is eerily familiar.
Brooke’s belly laugh – so different from her sister’s, so very much her own. The laugh that starts with her shoulders and takes her whole body along for the ride. The laugh that sets her eyes on fire and whose sheer energy could launch a rocket ship and send it into orbit. The contagious laugh that leaves an electric happiness in its wake."
The silent, unanswered questions about what I could possibly have to offer someone - the perception of  myself as a burden - began to be erased, as if with a Magic Marker, with Jess's words. Oh, sweet words, a gift to me to begin to redefine myself.

A friend tells me I bring out the kid in him, and makes him feel care free. A recently met friend tells me that I would make a good therapist because my experiences bring about a sense of empathy and openness to other's experiences that she finds very attractive.

Words, words. All they are are words, but they have the power to change a life. Mine. Yours. Everyone's. We need to be honest with each other, not just about what our friends and loved ones have to work on, but what we love about them, and why. We need to use our words. We need to be a community.

You are at a point where trust in life and your spirit, higher self or soul is paramount or even trust in the goodness of the universe.  You are at a place in your life where you are pregnant with potential which is filled with your greatest wishes and your greatest fears, it is up to you which ones you will give power to.

The above is a quote from a recent meetup I attended. I can't think of anything more accurate for where I am in my life than those words. Which will I  choose? Will I have the strength and resources I need to choose my dreams over my fears?

I've spent my life living, it feels, as one-woman island, perhaps due to my Asperger's. Or perhaps due to the confluence of many different forces, no one's "fault" but present nonetheless.

So my single, number one goal now is to find community and build social connections. Because only with that can I find the strength, courage and resilience to choose my dreams over my fears. I can't be an island anymore. I'm not saying this as it's a done deal. I don't know how it will go. But I've made a good start. And I know that words, different words, a different community, a different environment and different experiences will hopefully produce a different person. Or at least the same person who thinks quite differently about herself - and therefore will become a different, and better, person.

You spend the first thirty or so years of your life learning about yourself and the world around you.
Then, depending on your life experiences, you can spend the rest of your life trying to un-learn these things.

Ironic, yes?

Wednesday, November 28, 2012

Thanksgiving and a Compendium of Past Experiences

Hmm, I haven't written in this blog in two months so I suppose it's time for a little something.

Maybe I can just paste some of my Facebook updates into here.... I really don't feel like re-inventing the wheel.

I went to my grandparents' in Springfield, MA for four days for Thanksgiving. I don't usually travel much, so it was a stretch for me, but one that proved fruitful. My friend Rob drove to Boston to spend the holiday with his friends, and my mom drove to Boston to meet me since it was relatively speaking not that far. Compared with Maine, anyway. I spent Thurs and Fri with Sat and then Sat and Sun with Rob, exploring Northhampton and meeting some friends in Boston. Got home late Sun night.

I went through my Facebook posts to mid-October and pulled out anything that looked like it told a story. What do you know.... It looks like I actually have a life. A bizarre and non standard life to be sure but a life. I may have to rethink my opinion of myself, lol. And work on building my life so that it includes more and more of what I want it to - I hope.

I write most often on Facebook so here is a long compendium of comments on the last 6 weeks.... Call it blog catch-up.

Mon, Nov 26

Well, I'm back, what a trip! Still trying to orient myself to being back and trying to take it slowly. 

Going to look at my pictures next. they should be great! We had great weather... Thurs, Thanksgiving, I got to see some cousins I almost never get to see, the little one as cute as could be... as well as all my other family which was great.... 5 lb whoopie pie was a great gag even if no one ate it... except for certain visiting relatives the next day =) The gelato from the Gelato Fiasco that I took from here went over VERY well, *everyone* loved it. The strawberry and the dark choco. Too bad there isnt one in any area near there. (Closest an hour away in CT).

Adam, Alison, Doug, Nikki, her boyfriend, Kyla, Sierra, Jake, Mom, Ned and the grandparents were all there. 

Fri, got to go to Barnes and Nobles for 90 min which was awesome. No B&N here but there's one 5 min from my grandma's in Enfield, CT that is quite good. 

Hung out more with family. Read book ("Carly's Voice," very good). More family came. My dad and stepmom came to see brother. Etc.
Sat, Rob came and we spent the evening in Northhampton. Very cool. Went to FACES ,candy store, Haymarket cafe.

Sun, we spent half the day battling traffic (can you say STURBRIDGE?) but got to meet my blogger friend Jess of A  Diary of a Mom 
and her family on the way back, which was very wonderful. And then my online friend Nichole, who I had wanted to meet for a long time and who was gracious enough to bring me the vegan chocolates from Brookline I had been craving.

Got back around midnight last night. It was very good trip overall. But it's very good to be home. Springfield radio stations suck =) And our whole foods is better than their whole foods, lol. Just kidding, there are more important things in life than.... oh wait, who am I kidding?

Nov 21

bedtime..... today was mostly good, started slow, but I saw my former high school guidance counselor who I meet a few times a year as friends and that was very nice, even if we only had half an hour. saw Nate for half an hour. Did my grocery shopping. And had a wonderful conversation with a woman from my meetup group that lasted 2 hrs but felt like 10 minutes, that made me happy that we were able to connect. I wanted more. =) Patience. 

Nov 19

Just watched latest episode of Once Upon a Time, which is a week old. Omg, I am beginning to really love this show. It's completely made-up and fantastical, if that's a word, but it manages to still be extremely interesting and even, surprisingly, inspirational. How a show of this nature could ever be inspirational eluded me at first, but I guess it has something to do with the parable nature of fairy tales... Or something? Ha I dunno I may be reading too much into it, BUT, 

There was a woman who turned into a wolf every full moon, would black out, kill people, not remember it. She had a cloak that she used to keep from turning into a wolf. But then someone taught her that if she accepted the wolf part of herself and didn't try to suppress it, she'd remember/be aware of what was happening and therefore be able to control it. And not kill people. And it worked. Sure, she had to kill her mother after learning this little nugget, but that's a whole other story. =) 
The applications to real life, mother killing aside (mother was about to kill her best friend), are rather staggering. Simplistic yet profound.

Nov 18

Nice day out with first meeting Carol from my meetup group for some very enjoyable conversation, then Rob and Reid for some more conversation and some games, modified Malarkey in particular. Somehow I managed to spend 6 hours today in whole foods. 2 with Carol, 4 with R/R... *shakes head* wow, time flies when you're having fun, lol. good thing i got some exercise before, walking to bus and WF - it was a beautiful day. 
Bedtime is imminent........ Not quite yet, but imminent.

Nov 17

On a more positive note, what did I do today.....Unexpectedly spent most of the day with Rob, which was good. We went over to Falmouth, walked a little bit down Route 1 for exercise, and went to the toy store I've been meaning to take Rob to for ages... cus they have some games I thought he'd like. We spent a while in there....I got a few little things, he got a few things he liked. Went to Radio Shack, trying to replace my headphones that are 99% broken (I can sometimes get them to work with lots of manual manipulation of the cords, for at least a few minutes at a time...haha not much) - Only to find that the kind of headphones I've been buying from Radio Shack for 15 years - ever since I started listening to music on a Walkman - they no longer make. I tried on almost every other kind they had in the store but none I could tolerate - my head is very sensitive to pressure. Lovely. Will look online or they suggested dollar store. 

Apparently, the kind I like - the cheap ones with foam that are very lightweight and balance very loosely on your head, over the head style - "no one buys anymore," in favor of cushioned ones in weird shapes that put way too much pressure on my head.

So if anyone has a pair that like I mentioned that they would like to trade for a new pair of their choice please let me know!

Nov 16

I'm thinking of gratefulness, of self-confidence and self-love. About schemas and how to gradually change the idea of you have of yourself, how others see you and what you're capable of to a more positive level. Of how you spend the first say 25-30 years of your life learning lessons about yourself and the world, and then you often have to spend the rest of your life unlearning them. 

I said this in response to something we were talking about in the group the other night, okay last night, and for once the facilitator didn't respond with some platitude that made no sense when coupled with reality. She said, "I don't know, but there must be a reason!" In a sense ,she agreed with me. 

It's probably not possible to design a system where people could skip from the entirely awkward and often painful stages of childhood, adolescence and young adulthood to the relative wisdom, perspective and experience of just plain "adulthood," but if there was, I'd be all for it! It seems like to some degree life only starts making some amount of sense after you've spent three decades trying to make sense of it. And I do mean *starting*, as it's really only just begun. But I hope it continues.

Nov 15

Had the most interesting night. Had another Meetup of the spiritual self help type group , she provided much more room for discussion tonight so that was good. People were great again and the fact that I knew 2 of them and one of them relatively well made me a lot more comfortable. There were about 10-11 people again but 4 new ones, 1 guy, 3 women, all young. The older woman (or one of them) I liked was there again which was good as I had missed her name on the RSVP list. Met with G*** beforehand, an older guy who I liked last time but hadn't met yet. Was okay, didn't really connect as much as I had thought we would. Might be partly because he said he didn't feel comfortable having an intimate discussion in whole foods, which has never bothered me, so it was rather one sided. I respect but that but yea whatever. What I did get out of him was a little too out there for me. But he's a very nice guy, and I was able to do my grocery shopping beforehand which was good.

Amusing ancedote of the night. I managed something I did not know was possible. Well, it wasn't just me. But. We somehow got lost going from Whole Foods to Falmouth. We got lost going from WF TO FALMOUTH! I've only done that trip about oh 1-2x a week for almost the entire time I lived in Falmouth for 3 yrs? I am really directionally illiterate, lol. I would have been really embarassed if I hadn't accepted that a long time ago. He forgot his phone which had a GPS on it and couldn't understand the directions. He was confused cus it kept telling us to go to Route 9. But that's in Cumberland. I think. It also told us to go to Bucknam. Falmouth. Ok, that makes sense. But... we got off the highway.... and we were nowhere near there. I have no idea where we were. West Falmouth maybe but how did we get there? Eventually he just got back on the turnpike and got off at the yarmouth exit.... we were half an hour late but luckily someone else was too and they held the meeting for us, so. 

Nov 14

Encounters of the Strange but Wonderful Kind 

Okay so yeah I don't really know where to begin but ..... I did a lot of things today. Like left at noon got back at 10pm lots of things. Only one of them was planned. Well, two if you want to get technical. Appt at 1 pm on St John St. Took 1215 bus because I couldnt get up early enuf to make 1135 one which I took cus I didnt think 1215 would connect. BUT, the Congress St (#1) bus stops at the TOP all really along Congress, which is obvious, but none of the other buses I actually take do so I forgot that I could get off the SP bus what amounts to 5-8 minutes early and be right at the #1 stop. That was VERY convenient. So I did make the connection despite the SP bus being 8 minutes late. And I even figured out what side of the street to go on with the help of some friendly street denizens. (Is that a word?)

Apparently no one knows what to call it but "the old train station building." Although the bus driver says it's called Union Station. The sign says it was called the Maine Railroad Building or some such thing. Never seen any one place have so many names! 

Either way, it was BEAUTIFUL. All old wooden floors , long narrow but pretty WOODEN hallways. Love, love, love. Reminded me of a similar building in Montana. Had appt. Was like neutral. More on that another time. 

After appt. Three hour conversation with an older woman who happened to be reading the bullentin board above where I was sitting. Three hours! I can't even begin to go into this woman's heartbreaks because my heart and head are still processing. But man it made me want to HELP PEOPLE because it is SO REWARDING. 

She needed someone to listen, so badly. She had so many people telling her she was crazy, not listening, not believing her. She lives in one of the worst apartment complexes in Portland (or so I believe). She has no or very little family, friends, support. 
She has severe ADD, went to some stupid clinic with a stupid beyond belief psychiatrist that I won't even get into. Spent her life feeling like she didnt fit in anywhere till she was diagnosed with ADD at age 51! 61 now. Psychiatrist she has now sounds just plain abusive. She's so sensitive to the world, even more so than me it seems, cant stand noise of traffic, or smells either, complained about chemicals before I even mentioned it. Complaining of dizziness, fogginess , memory loss lately, did I mention she just had new carpet put in her apt, it was put in when she moved in that is. Poor woman! She goes down to the laundry room or sits in the stairs just to get away from it. She was wandering around the train station building because it was quiet and made her feel calm. I felt for her. Can we say, my life story? Complimented me up and down about being smart and a good listener and all sorts, I was flattered, but wanted to help.

Called the community counseling center on her behalf, offered suggestions where I could, and made an appt with her doctor at Martins point for her (thank goodness she has one, at a reputable place too) because it was something she had just had too much anxiety about to be able to do herself. Sounds familiar. 

Person I saw came out to close the office down saw me sitting there still gave me a quizzical look lol. 

Left at 5, got the bus back to Mon Sq with no problem - it's the first bus in ages I can remember being on time. Went straight to gelato place, I needed energy. Friendly as they could be there. The girl I talked to last time was there. We had conversations about lox and the Broadway show CATS. I wasn't planning to stay for long but couldn't resist a good conversation with her. Probably stayed there 2 hrs. Went to WF cus I needed crackers and meat. The sweet air of independence , freedom , self sufficiency was with me. The walk to whole foods felt great. Wandered around there for an hour. Walked back up, air still felt great and I was as warm as could be , surprised to find out it was only 38. When it's not windy and you're bundled up and the temp's 30 or above winter can actually be quite nice. 
I got the 24A bus back - the one that stops near my house that I almost never get - and it was only like 2 min late. So thankful not to have to wait. I couldn't believe it, Id been out for 10 hours, 10 hours! , wandering around Portland, on my own, finding things to do. So tired I could barely stand up when i got home. obviously.

I need to find a way to help people, to hear their stories, to offer emotional support . it makes me feel complete. and tired. but mostly complete. hell the world isn't black and white, it can do both, right?

Nov 10

So yeah good day today. Weather was so nice, sunny, not windy I got up and immediately knew I had to go out. And I suspected that the GF might still have their dark chocolate banana I had been craving the last 2 days as their average is about three days usually with that. I checked and they had it. I called a few friends, the first 2 didn't want to go, the 3rd did. Golden! I would have gone anyway but much more fun with someone. It was delicious - so amazingly delicious - wish they would have it more. Rich dark chocolate....banana....chocolate...banana...chocolate....banana....chocolate...banana... what do you mean I ate it all??? =)

Woman at the counter I'd never seen before, so friendly, got into long conversation with. Played some games with Amber, saw Nate for a few min. Had annoying time getting bus home but it wasn't too cold luckily. Hung out with Ryan for a bit at the house, he helped me get some stuff I needed locally. So, good. 

Now I need to go to bed, leave at 145 tomorrow. Patience, must be patient. Night all!

Nov 10

File this under "Full Disclosure Would Be Nice"

Little coffee shop/bakery in Monument Sq has been there for years and had gelato before anywhere else in Portland did. It was terrible, but that was so many years ago I decided to walk in and give the place another try. After like 5 yrs. It advertised gluten/vegan goods, so. 

I wanted to know what ingredients they used besides the base, because there almost always are some. 
First attempt "Just water as a base"
Second attempt "Just water, sugar and fruit" she said. 
It took me 5 more and more specific questions before she finally admitted or got an answer from the guy who owns the place that yes they added carrageenanan into it too.
Gee, you couldnt have said that in the first place? 
When I ask what the ingredients are, I would like to know ALL of them. When I ask if you use any thickening agents I shouldn't have to ask twice and name the specific ones to get an answer. 
For a place advertising their gluten free and vegan items so prominently in the window - which is why I walked in - you'd think they'd be more careful with food sensitivities.

So then I walked over to the gelato fiasco and enjoyed their wonderful carrageenan free, ingredients completely disclosed, delicious dark chocolate banana sorbetto =) i thought i'd give it a try, but I never did like that guy.

Nov 9

I must admit, while I am thinking about it, that walking to whole foods yesterday from the bus was really nothing short of invigorating. I wore my nice warm gloves for the first time this year. The wind wasn't too bad. When you get into a nice walking rhythm you're much less apt to be cold. And I was in a good mood from the bus ride. So, the air felt crisp and clear and invigorating. Funny how frame of mind influences this. Before it had just felt cold and I had wanted to get out of it as quickly as possible. But as much as I'm not looking forward to the upcoming colder weather... when dressed appropriately, and mixed with certain positive experiences, that air can feel *good*. 

(Just taking a moment to be thankful and procrastinate at the same time, that is all, carry on.) =) 

*I reserve the right to complain for the 90% of time that invigorating becomes a little over the top, lol (whoever thought I'd be looking forward to winter even less than summer. I never thought that was possible.) 

*goes back to article writing*

Nov 9

What else did I do yesterday... it was a pretty good day overall. I had a therapy appt, which went better than usual. I had some nice conversation with the woman who works behind the desk at True North, which is right next door. I had a great bus ride with Barry and talked about the bus. And I had fun with Rob and Reid at WF, playing a game and talking. Also one of my meetup friends dropped by with her boyfriend for a bit and I managed somehow to integrate the conversation, more or less, between all. (Day after election day made it pretty easy to find conversation topics for once.) 

So that was good and I was happy. Then it was so cold and stormy tho... slept most of the night and day. But it was nice to have a good day.

Nov 6

M and I went to the Barnes and Noble in Augusta. There were games. LOTS, AND LOTS, AND LOTS OF GAMES! There were so games, I don't think I was entirely aware there were books there. =)    ( also went to whoopie pie store - Isamax - in Gardener as well) 

oct 19 2012
Yesterday, when I got off the bus, an older man next to me asked the driver if the bus went to the cruise ship. He said no, but I can let you off here and you can walk. Well, I knew he probably didn't know how to get there, and I had been just sitting there thinking how I never got to meet anyone interesting, so I immediately said "I'll walk you to the cruise ship if you don't know how to get there." He said he didn't, and accepted.

It was a sunny and warm day, a perfect day for a walk, and we ran into Ryan and Amber. They as expected did not bat an eye when I said we were walking a random guy to the cruise ship. lol

He was from Las Vegas, and I tried to play tour guide as much as possible, but while polite he wasn't very chatty. It was still fun showing him our beautiful city. Poor guy went all the way to Scarborough to Walmart to get a prescription. If he HAD to go to Walmart, Falmouth would have been much closer (at least the way the buses work). He thanked me sincerely when he got there (its about a 10-15 min walk but such a nice one) and the memory of this made me smile for the rest of the day. (And the cruise ship vendors were cool too.)

oct 15 2012

I went to whole foods afterwards, because I *could*, and because I didnt feel like going home yet... and because where you get off at the metro stop is at least a quarter of the way closer than Mon. Sq so it doesnt really feel like exercise lol... and I had a hankering for the Maples dark chocolate sorbetto. You see, as amazing as the Gelato Fiasco dark chocolate is, sometimes it's just too intense to have very much of. The Maples is like a watered down version of it, which most of the time I eschew, but lately have been liking. I can eat far more of it before it's too much, lol. I had an idea today, I had  a banana and I got a plate and a plastic knife. I cut the banana into little pieces and tried to mash it as much as possible. Then I put the chocolate sorbetto over and tried to combine them. The result was absolutely delicious... a dark chocolate banana concoction  that tasted like both dark chocolate and banana and had some real substance to it. My mood improved substantially after this culinary experience. Here is the beginning of my efforts at this experiment, which I shall definitely repeat.

Discovering Who You Are (Meetup Group)

Psychology/Spirituality Meetup - from Oct 24, 2012

Yeah I have to go to bed but I have to write this before I do. I have to get it down on the virtual equivalent of paper. Yesterday I had a very full but a very good day. Along with a somewhat strange but mostly okay and short meeting with Marion, I did something I have never done before. I took a real step. Out of my comfort zone. I was brave and followed my instinct. The instinct that told me that meet-up I was talking about last night was worth putting all my resources into figuring out how to get to.

And I did get to it. It was in North Yarmouth, about 9 min from where we ate with Madeline in Yarmouth. At someone's house. I had talked to a guy named G before and he offered me a ride as did the facilitator but Rob ended up taking me. I asked about MCS stuff beforehand. There were 11 people, 10 women and one wonderful and gentle guy. It looked to be a psychology/self help related discussion group. It turned out to be more around spirituality and metaphysics, subjects Im not interested in, but it didn't matter. The people were wonderful. All of them. All of them I met anyway, which was about half roughly. They were supportive and welcoming and just great people.

I kind figured, well, I didn't know what the structure was supposed to be. I might have asked, had I not been so busy trying to a) acclimate to the environment b) talk to the people near me and c) try to remember what it is that NT people would typically do in a situation like this (or what little I knew on the subject anyway). So after she had been talking for about 15-20 min with no end in sight and no breaks I did get a bit  worried.

So I found ways to contribute things that were a little more relevant to my area of experience, but still relevant to what she was talking about. Amygdala retraining, the psychology and science behind some of the principles she was talking about, personal experiences. The people around me reacted in such a positive way! They were so supportive. They were so encouraging. They were so interested!

To start with, when the topic of my chemical sensitivities came up at the beginning, I heard this chorus of "Oh, I know someone who has that" or "My brother or cousin or friend is like that" or "They have trouble with XYZ..." and I'm like just sitting there stunned. This is not the reaction I usually get. One person even said "You were reallt brave to come here!" and everyone else nodded in agreement and it felt wonderful. I had to ask one fragranced person if she would mind switching seats with someone else, everyone was just wonderful about it.

So fast forward to the middle. We're in this living room and the couch was actually pretty comfortable. But enough is enough and I'm getting bored. The one woman who is actually sharing her experiences is talking about being afraid of being stuck in a dead end job if she tries to go back to work and her uncertainty over that. The facilitator says something about being okay with nothingness, I forget the exact words. It piques my interest, since obviously that is a major challenge for me at the moment. I find a way to relate it, verbally, to the group , about my experiences, and share a little about my story and my challenges and successes with MCS (far easier since the topic had already come up!)

People are fascinated. People are encouraged. People want to hear more. It's a really good feeling.

I zone out for a while more, facilitator talking about things I don't much understand, and then the topic of social norms comes up. I use that as an opportunity to bring up autism. Because, you know, I'm getting kind of bored, and why not be honest? Not enough energy to transcribe exactly what went on. But the woman two seats over from me has a son with autism, it sparks a wonderful conversation, and people applaud my honesty.

Zone out some more, because honestly figuring out how to talk in a group takes a lot of effort and energy, and before I know it its 830, 2 hrs have passed and they're doing a meditation to end it with this cool singing crystal bowl thing.

Three people want to have coffee with me. THREE PEOPLE WANT TO HAVE COFFEE WITH ME! And I with them. One person said "I really enjoyed having you here, I sure hope you  come back next time." The woman who has the son with autism turns out to be the one who lives in South Portland (1-2 mi from me ) and gives me a ride home. We talk animatedly and continue talking when we reach my house. I won't even go into how weird it was to figure out belatedly that she was my age roughly and that I liked her. And that for the first time in my life it was possible to like people my age. Like that just occurred to me. I always said I , no offense to anyone reading this, but I always said , I didnt want to have anything to do with anyone under 30. Because just socially it never worked. But here I am nearing 30 and all of a sudden people in their early 30s are "my age." And all of a sudden they're mature enough, at least the very few I have met, to be interesting worthwhile people. And it's like woaahhhh.

I did okay MCS wise with all involved. I'm not saying it was perfect but I did okay. It was the first time I have ever attempted to do anything social with anyone who does not have autism (or some closely related diagnosis or neurology) ..... ever? Since college? Since college, I guess, and that never went well, most of the time.

I love my Aspie friends. But the idea that I could have friends outside of the autism world, that I could succeed on my own merits in other environments with people who liked me, is pretty damn mind blowing.


And yes, I will be arranging those coffee dates as soon as I have a little recovery time.

I hardly know how to begin to process this, but I know it is wonderful. I also know I have to go to bed. I was far more functional than I expected today. Life!

Wednesday, September 26, 2012

Letter to Myself

My mind and body are fighting a battle to see who wins. My mind wants me to write. My body doesn't.

I want to write about doing the right thing even if it has consequences that you don't like, that scare you. And how about sometimes if you love someone enough you'll do that thing for them even if it scares you. And how I never had anyone like that before. And how I couldn't decide if it was a good thing or a bad thing but finally decided it was the RIGHT thing, and that life isn't simple, so it was both good and bad. And then I decided I had too much black and white thinking. That if I could learn to hold two ideas like that in my head at one time - that it was good AND bad, that just maybe it won't be good in the way I wanted it to but it's still good and it's still right and it's not a tragedy if it doesn't go just like I planned - well, that would be a good thing.

I want to write about how sometimes the (in this sense for me mostly health related) consequences of something can seem overwhelming but that when you think about what matters in your life, what REALLY matters, can't I make some room to do something for someone who really matters even if I suffer for a little bit after it?

It's a question I haven't entirely answered because I am supremely bad at physical suffering. But if I can change my perception of the physical suffering to something more positive and accepting, then I'm certain I would suffer less.

I can't make any promises as to how or when though!

I want to tell myself that Redefine Success is the most important tenet on my list of Things I've Learned from the last few years. If I redefine what I am expecting of myself and my life at any given moment or time, then I can be happy with it or at least at peace with it and accept it. Especially if I know accepting something less than perfect at the present moment might lead to better things in the near future. In short, if I practice something called faith - which I have never been able to do. I don't even mean the religious kind, I mean the I'm Not Going to Die or Lose All My Marbles Anytime Soon kind of faith.

Let me know where they sell it, will ya?

Maybe if you have a purpose in your life big enough, meaningful enough, you can find a way to have that kind of faith. But that's another thing they're not selling at the five and dime. It's hard to find it.

But I have something may qualify, and I'm not sure how much longer it's going to be around. So it only seems right that I learn from it and enjoy it while I can.

Moving to South Portland has presented an interesting kind of paradox. While I certainly love, well, everything about it, without Marion it cannot be denied that there is something missing. And in an attempt to fill that something missing, and also because I just really love Portland and South Portland and every area adjacent to it, I have filled my time in the month since I moved here with far more activities than I ever engaged in in the three years previous.

I enjoy those activities, there's no doubt about it. But it is simply too much. It takes a toll on me. It makes me feel stressed out and tired, to the point where I am just lacking a sense of calmness and stability that I very much need because I'm not giving my nervous system enough time to recover before going off and doing something else that looks so SHINY and NEW and MUST HAVE.... or again, something rather plain but new to me because it's ALL RIGHT HERE AND ACCESSIBLE TO ME. That is, accessible to me if I only had a little more energy and stamina to engage in all the necessary mental and physical energy it requires.

Not to mention that as much as I love the scenic and predictable walk to Mill Creek, it is much longer than I'm used to walking to the bus. Then when I get to Portland, mostly because of the beautiful fall weather, I tend to walk around there a lot, and then sometimes we go to whole foods which is another 12 or so minutes each way, and walk back from the bus stop in South Portland, and it all just kind of adds up, you know? It's not just physical energy, of course. It's mental energy - being out in the world requires all kinds of sensory processing. Interacting with others as much as I enjoy it requires emotional energy. Navigating the environment taxes my nervous system even when it's fun (and let's face it, most things are not going to be 100% fun), because I am sensitive to being overstimulated.

No way would I ever want to give up on doing things, but I think I've got to do less of them before I drive myself crazy. I need my nervous system and mind to feel calm and relaxed and stable more often than it is now. I realize just moved need time to figure out a groove and all but yeah. This is me figuring it out.

In Falmouth I only went out 2 days a week and the other days pretty much did nothing but watch TV with Marion. Here I've been going out pretty much every other day and packing a much bigger wallop into what I do. Not enough time to recover.

So, I will have to be patient while I recover from what I did do today, which was totally pushing the envelope for me. It's not so much that I  enjoy resting - My mind begs to be occupied at all times. But I need to. So I need to find more occupying ways of resting. Like TV.... Blah. Or something. Thank God I CAN actually read and watch TV, knock and wood, because I didn't  always used to be able to do and I can't imagine what life would be like without these two amazing things. They are like vacations unto themselves. Knock on wood.

I need to quiet the voices that say a certain doom will befall me if I have XYZ symptoms. Quiet my amygdala. Tell it, hasn't everything worked out pretty well the last few years? Haven't I always gotten what I *needed* when I really needed it - maybe not always what I wanted every time, maybe waiting longer sometimes for some things than I would have liked, but what I NEEDED when it got to a point where I really needed? Yes. So, note to self, please learn to tolerate distress. It will be more temporary and transient than you know.  "Don't let the past tell us who we are not today" or whatever that CSN line is. Don't let the past dictate the present. Were there times I suffered in the past? Yes, enormously. Were there times that it seemed like the suffering would never end, that there was no way out, no solution? Certainly, more of it than I would care to remember. But has any of that happened in the last three years? No, no and no.

You could call it luck. Or you could call it increased coping skills. The retraining of the brain. Better stress tolerance skills. Better reframing skills. Better at putting things in perspective, better at changing negative energy to positive, better at connecting with others, better at dealing with stress. If I believe that I've changed enough to have the kind of life, the kind of success but most of all the stability that I've always craved.... then maybe I wouldn't worry so much.

You can't spend every day wondering if today is the day the figurative hurricane is going to hit again.
You can ,but if so you're just wrecking your life.
Spend your time looking for the sun instead.

So many things happened to my body, to my my mind, and because of it I was forced to go on quite a journey, across the country and back several times.

But like a kiln, I gained strength and precious, precious perspective from these experiences.
Illness taught me a new way of living that, when I was finally in a stable enough situation to appreciate the lesson, changed the way I lived and experienced my life for the better.
I still think of about things I learned, experiences I had that taught me something or the other in a various city here and there on an almost daily basis. I don't think of the bad. It's my body that remembers the bad. My mind remembers the good. Mostly.

I can't say I don't fear another figurative hurricane (illness). But I can say that to fear it every day, in every situation, (or at least the most challenging ones, I have gotten much better with a lot of the more routine ones), is pure madness and no way to live life.

I went far, far out of my comfort zone for a person I loved tonight. It's not something I intend to repeat anytime soon as it was just too much to do more than once. But doing it once? It was the right thing to do, and if I can use it to try to teach myself not to fear that hurricane so much...... Well, then all the better.

One moment at a time, one day a time, and focus on what you can do in THAT moment, not about the stormy weather that you're certain is to come later. Because you might just find that it doesn't. Maybe the anticipation IS the stormy weather, and you're creating it for yourself.

It's a scary thing to not worry (as if we have a choice), to relinquish control, to accept what may be. And there is no doubt it would take an enormous amount of practice if I was even able to take the first steps toward it. But I just don't want to be creating that stormy weather for myself, each and every time. So I'll see what I can do. To be mindful, to focus on the moment. It may drive me crazy trying, but I'll see what I can do.

"I beg you to have patience with the questions in your heart....because one day, without even realizing it, you will have lived your way into an answer."      

Sunday, May 13, 2012

Portland Like Portland Hasn't Been in Years

If this entry seems to start in the middle....then too bad, lol. You'll pick it up. Background though - I have chemical sensitivity and haven't gone into most stores for many years. Until now.

So many thoughts, so little brain space to think them! I was worried we'd have too much time in Portland (along with a whole host of other worries) but it wasn't the case. The weather was fine, a little windy at Monument Sq but warm the rest of Portland. I don't know, it was like I was driven. Rob and I went into the cupcake place in Public Market to see what they had, then we separated. My plan was to go into as many shops as I felt I comfortably or reasonably could, with a little effort of course. I was impatient to start, before my resolve ebbed away. The 5 minute walk to the Old Port never seemed so long.

I started with Bull Moose Music, since that was on my list of potential places, and being on Middle St, comes up first when you're walking towards the Old Port.

I just did it... I went in... down the stairs, even.... it definitely was a little fragrance-y but it was the type I could handle. I think it was incense being sold, but not much in the way of perfume or building smells, etc. I asked if they had any old VHSs "Do we ever!" they said, and directed me to a stack of them so huge it was spilling out on to the floor, stacked in random piles. Thirty cents EACH! Did you ever think we'd come to a time when they'd go so cheap?

I found about six that looked interesting, mostly ones I had seen years ago and thought were worth watching again. Tim Allen's Jungle 2 Jungle being my favorite out of the pack. =) Then I wandered for a few minutes, some of the country stuff was going quite cheap but I don't need any country CDs. A very nice employee helped me find both Hermans Hermits and Loving Spoonful (60s) CDs, used, for cheap, $6-8 each (which is compared to used online with shipping, which I was planning on doing anyway) and that was good. They had some funny magnets. I was surprised how long I could stay.

When I got out, I didn't waste too much time thinking about it other than to take a few deep breaths. Again, I wanted to find the next place before my nerve ran out. I think the next place I saw was this gift shop on the corner of Exchange and Fore that I had been wanting to go in to for ages. Let's just say their windows are a LOT cooler than the store! But the store wasn't that bad either. Then I was on Commercial, bypassing Fore, and I happened upon the dog specialty store Fetch!

What I have not been able to before, at least not in the last 5 years or so, is have the courage or strength of mind to open the door to a shop (or even step inside an open one) and *check* to see if any smells immediately meet my nose that would be offensive. I was just too scared to be exposed to anything at all before. But between now and last time I think Ive checked most of the stores in the Old Port that look interesting. Several were no's, but I was ABLE to take that "Eww, that smells bad," step away and stop it at that. Not go any further. The ones where I stepped in and nothing offensive seemed to be present, I took another step, until I was fully immersed. Re-assessed. If still okay, be glad and look around. Or if it's only a little ok, try to shut off my brain and look around *quickly.* lol.

So, longer story short, man I've never been into a specialty dog store and that was weird! Got a couple dog treats for my stepmom's dogs. Crowded, too.

That was the point I think I met up with Amber. I was so tired, I felt just well it wasn't good but it wasn't horrible, it was more of a "I have to push through this" feeling, "I WILL do what I came here to do , and I CAN and am completely capable of doing what I came here to do." The physical discomfort was there, but it was more background than usual. Which was nice.

We did the Maine Pantry on Commercial, I got some candy sticks to give out on the bus, Amber got a salted caramel.

From there it wasn't far to Standard Bakery on one end of Commercial, where I got a baguette for my dad. It's his favorite. A homeless person approached us for money. I didn't have any cash, but I had the bakery person cut off a good piece of the baguette and put it in a bag to give him on the way back. He accepted it (we wondered if he would), but definitely seemed confused. Apparently, people don't give baguettes to the homeless very often.

Back up Exchange, I spotted Something Fishy, a tourist oriented gift shop that's been around since I was a child and used to be a favorite of mine as a child. "I wonder if I can go in there," I thought. So I tried. And I did. Their selection was not nearly as good as when I was a kid, but Amber and I still had fun in there. We talked to the counter person who had recently moved back to Maine from Vermont and was very nice.

Then to the toy store across the street (I've been several times in the last 2 weeks) to pick up something I thought Rob would like.

We made one last stop at Trader Joe's which was NOT a good place, and then dropped at Whole Foods - was so tired last 15-20 minutes I could barely put one foot in front of the other! Had to sit for at least half an hour when we got there to recover energy. =)

Then BBQ at my dad's for mother's day. Tried on a dress I got at WF there.

We spent three and a half hours walking around the Old Port. That is something I used to do regularly pre-MCS but haven't done since. Because you can only spend so much time there if you don't go into stores! So... another small but important piece of myself comes back to me. I like that.

I struggle between wanting or having too much stimulation and
wanting or having too little. It is hard to find that balance.

But I think, if I keep trying new things within or just out of my comfort zone, and remember the Gupta/Hopper theories, and give myself *plenty* of time to rest in between....that I might just get somewhere worth going. I hope.

Two appropriate quotes to end with



"Thriving is not always about gaining better health. It is more about being the best that you can be at any given moment. "

I guess that pretty much says it all.

Wednesday, April 11, 2012

The Perfect Dentist Appointment

I am trying to write this now only because I am afraid I will forget the details, the wonderful details, by tomorrow. So here goes.

I had a dentist appt with my childhood dentist today. I should have done that 2 years, but my very impatient self didn't want to wait 2 months for an appt. I was so nervous before this appt, not knowing what to expect. The dentist I had seen in Falmouth who was supposed to be very highly regarded I did not like at all.

The waiting room was just like I remembered it. The familiarity was very nice. I was able to ignore certain stimuli which I did not like. They led me to a small office type area with a small desk, and 3 chairs. I had never been to a space like that before, so I was nervous at first. The woman who led me there remembered me though, from 7 years ago. That friendly familiarity felt wonderful. I filled out some sheets of paper and Dr. S came right in.

I had been all prepared to be as concise and focused as I possibly could, more than I had ever been in my life. I had notes and I had visualized it extensively. I didn't want another 30 minute appt to go by without me accomplishing anything useful because I had talked too much.
I knew exactly what I wanted to say and in what order, but had notes to refer to.

He came in with an air of warmth and "old friend"ness that you couldn't possibly fake if you tried, that would be in fact hard to duplicate. He immediately asked about my mom and my brothers, but not in a perfunctory way at all. I had expected questions, but although I remembered him being friendly, I expected an air of formality as well. There was no hint of that whatsoever. Professionalism, yes. Distance? No.

With the cozy office setting and his personality, it felt more like two people meeting for tea than it did a dentist appt. After 5 minutes or so I remembered my pledge and said, "I know you only have limited time, so I should probably get to..." And he said in a very relaxed manner, "No, you're my last appt of the day. We can chat for as long as we want." I warned him I could talk a lot, but he waved way my concerns.

Medical professional or not, he was one of the most empathetic people I have met in a long time. It just seemed like he knew things about me or understood things without much prompting from me that people usually don't. (He hadn't seen me for seven years and I changed a lot in those seven years.)

He remembered that I had always been sensitive and seemed genuinely sincere, understanding, and congratulatory when I told him I had trouble trying new things like new toothpastes and such and that trying them even once was a victory for me, but that I was getting better with it and continuing to try it.

When I mentioned my "trouble with fragrances," and he asked me to explain more, I didn't feel like I was having to explain it in a clinical way to a gaping face that had no idea what the hell I was talking about. He understood. He asked me if I had trouble in the dentist office. I told him I was trying to ignore those feelings so yes but let's change the subject. lol. But he got it.

When I went through my list, it wasn't in a clinical or overly formal manner. It wasn't accompanied by high anxiety of either "I have to get this done as quickly as possible" rushing or by the even more common "They have no idea what I'm talking about" anxiety (which usually leads me to rush to explain more and become even more obtuse.)

It was in a conversation, a relatively relaxed one at that. I described my symptoms, what the previous dentist had done, what products I had tried, what products what I was considering. He relayed an ancedote about finding one of the toothpastes I mentioned which you can't get in the US in China and giving it to one of his patients, who found it to be extremely helpful.

He respected my intelligence and adjusted the way he talked to accommodate (I'm assuming.) He talked to me as an equal. He was in no way intimidated or annoyed by how much I knew and all the information I was presenting him, he seemed to find it very interesting. He jokingly said "Well, I think you now know more than me!" after I got through with the third anti sensitivity toothpaste, lol. Well, I actually might have, but I didn't mind. He hadn't heard of the Novamin toothpastes but thought them worth trying, and when I gave him the article about the Nupro/Sensodyne flouride and novamin toothpaste he said he thought might order some for the office and would try to get me the toothpaste (only available through a dentist).

He answered my questions patiently and in no means ever made me feel like a question was stupid, redundant or unneccessary.

Doing so much preparation probably did allow me to be more concise and on target than usual, therefore probably getting a better response. But I wasn't consciously trying to be all that much more concise than usual, other than obviously trying to stay on target. Being relaxed and not worried about the time probably helped with that too.

I was treated as a human being, a whole human being, instead of a set of symptoms to regard or disregard before he could go home at the end of the day.

After about 40 minutes or so, he looked at the clock and said "My, we talked a while." I said "I told you so." He was concerned about looking in my mouth when the hour was so late, as his staff had to go home, but he did it anyway. A man of character, he said he would and he did.
In five minutes he was able to tell far more than any of the longer exams I've had at the other office. We had talked about grinding in sleep as a possible diagnosis for the receding gums, and he was able to look in my mouth and immediately see marks on my teeth that indicated I was clenching my teeth in my sleep (not grinding apparently but clenching). He said the receding gums were there but were minimal, and I had hypersensitivity in them. But he said it not in a "it's all in your head" way but in a "hypersensitivity is a valid clinical diagnosis as well" way.
I have no signs of peridontal disease or other problems that he could tell in his limited exam.

In one month I have an appt for a more thorough exam and a month after that I have an appt for a cleaning. I am going to look into a mouthguard and try one the Dr Collins Novamin toothpaste in the meantime to see if that helps. The herbal mouthwash Periowash has also been helping me a little, for anyone who is interested.

He said it was a "consult" and was free. I was blown away. Out of this world.

I left that office a huge smile on my face and one question in my mind - How could I ever thank him for his generosity when I needed it the most??

On the autism front, it is interesting to note that while I DO have trouble understanding when most people are understanding (physically/emotionally) what I am saying, there is a small subset of people who I have no trouble with. People who wear their emotions on their sleeve so to speak and have exaggerated enough facial expressions OR just a strong enough sense about them that even I can sense it and tell it's there. He was one of them. They're hard to find.

In general, people with autism/ASD need more external, pronounced cues to understand emotions that someone else is having towards them. Especially when they are positive, negative ones tend to be more pronounced as a rule. But I have come to realize that trying to get a typical person to figure out how to do that would be just as hard as it is for us to understand them with their typical expression. There is a real communication divide, and sometimes I'm not sure how it can be bridged, other than to simply be lucky enough to happen upon the right people.

And when that does happen, it should be recognized. Hence this entry. =)

Friday, March 23, 2012

85 Degrees - in Maine - In March

Below is a quick off the cuff recanting of my (6 hours outside) adventures in Portland today.
And yes, it was 85 degrees. In Maine. In March.

Portland is the most awesome town ever in the world. Today when I got there R helped me get something at CVS (saving me a lot of $ getting stuff there), then mail something at the post office only a few steps away... then I helped him and A figure some personal things out (perfect exchange of skills there... errands in exchange for therapy lol), then Ryan cut my hair as we sat in the park and listened to a street band play bluegrass.

Then they had to leave and Nate came, we talked for a bit and then Rob came, and we sat in the park for another hour talking. In T-shirts. In March. Then oh my my my , we walked down Exchange and found yet another street band, better than the first except they had a saxophone and I HATE saxophones. So we kept going, and they were doing a thing where students from the local art school took pictures of you on lower Exchange... but I was distracted by the 3rd street musician we found who was playing Beatles songs on Commercial St by the pizza place! (Man, I was torn between the 2). I tend to become incoherent when live 60s music is involved... Funny thing is I almost NEVER go right on Commercial cus there's not much there compared to going left but we did today and found this guy.

Nate ans Rob went to dinner (we had planned to split up) and I spent another HOUR listening to this guy! Nicest guy ever. Let me make all sorts of requests! Played 5 or 6 Beatles, then Henry the 8th when I asked for Herman's Hermits, some CCR, and TWO MONKEES songs in honor of Davy Jones' passing (Daydream Believer ans Last Train...) While he was changing his guitar string, he told me all about his memories of the Beatles and I quizzed him on the Beatles trivia I used to know/ask... He is the only person in my LIFE to know without hesitation the exact date the Beatles arrived here- Feb 7 64- and the exact date of their last concert ... Aug 29 1966! I remembered Aug 66 but not the date.
That was something else.

Then I did grocery shopping and played Connect with N and R at WF =) Six and a half hours outside in a row - 145pm to 815 pm - I dont believe I have ever done that in Maine except maybe the time we hiked Kathahdin?

Quite a day! I love Portland. 85 degrees out later 75 brought out all kinds of people. No humidity!

Plenty more to tell but too tired! Pictures on Facebook - soon! I am lucky to live here.

Tuesday, February 14, 2012

Community at Work 2012 Edition

I see I have written very little in here in the last 6 months or so. For that, I apologize! Have no fear, I have something new or semi new for you. Anyone who is curious more about my daily life feel free to friend me on Facebook... (email me first and tell me you are from this site at kgoldfie@gmail.com )


One year ago I wrote the following essay about the first bus ride I had attempted in years and how the power of human connection made it possible. Tonight, about one year and one week later, I wrote an update to that essay, expanding on and confirming those previous themes. Here they are together....Hope they are meaningful to you. I plan to give both to the bus driver.

Community at work

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.
"Do you live there?"

"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.


Update 2/14/12 - One Year of Independence

It's one year later, and I am reading this essay with a smile on my face, remembering how meaningful that day was to me. Over the past year, this theory, and especially the human connection theory, has proven true over and over again.
I never saw that young man again, but it didn't matter. He gave me the confidence and emotional support to do what I needed to once, and that allowed me to do it a second time.

And what helped me the 2nd time? The bus driver. There are two basic ways to move about this world - to go about your day trying to make a positive impact on everyone you meet, and to go through your day just trying to get through it and shut off to everyone you meet. It is rare to meet someone in the first category, but Barry certainly is. I have now spent a year watching him try to (and usually succeed) in remembering the names of every single person who comes on his bus more than once, of watching him go out of his way to inquire on people's health and welfare, of watching him engage in intruiging philosophical conversations with whoever happens to be lucky enough to be bending his ear at the moment. While occasionally startling at first, I think there are many of us who enjoy watching Barry's own special brand of humor and attempts to make people laugh.

One might think I am exaggerating or harping on inconsequential details, but after his recent month long absence for a vacation, I can certainly attest that the environment is far more pleasant with him in it.

It is important for me to be engaged with something if I am doing something difficult, so that I don't focus exclusively on the sensory issues that may be bothering me. Several times, although fortunately not too many, there have been fragrances that bothered me on the bus. My thought pattern went more like "Dang it. I guess I'll have to deal with that for another 15 minutes" or "Dang it. Don't think about it, concentrate on what you're saying/he's saying" rather than freaking out, getting off the bus and never riding it again, which has definitely happened in the past. (Certain unfortunte experiences on the Missoula, Montana bus system put a rest to my bus riding days for several years and in several different cities before I got the courage to try again.)

So - I am now able to handle the buses whether or not Barry is driving, although I certainly prefer it when he is. I've taken the bus nearly every week for a year, at first to get groceries, then to go to medical appts. My current routine is using the bus to get to a therapy appt in Falmouth, then into Portland to meet a friend and get groceries.

So, Barry, I realize I've written this in the 2nd person, but on a more personal note, I do want you to know, without me getting too mushy and over the top, that you have made a difference in someone's life. Driving a bus may not be the most glamorous of occupations, and may not be what you wish you could be doing with your life, but you got one thing right. You managed to find a way to change other people's lives. And I don't know you well enough to say for sure, but you seem like the kind of guy for whom that would be a priority. I hope you enjoy this book, "Riding the Bus With My Sister," which profiles people whom I find in large part to be very similar to you.

I wanted to give it to (now I can't remember his name, oops) who was like you in many ways and drove the #5 to the mall when I lived in Portland 5 years ago, but I never got the chance before he left. You more than fill his shoes, so I am glad for the opportunity to give it to you.