I am moving to Ballston Spa, New York on Monday. I will live with a woman with chemical sensitivity, who has a son with AS. Despite not being able to make it in Oregon I still had a great summer here, although a very challenging one at times. I saw three different cities, and got to experience a lot. I never could have imagined when I wrote my farewell to Maine post four months ago what would transpire over the summer while I was here. Never thought I'd get to see Eugene for one thing, never thought I'd be camping or live in a hippie commune, but things work out the way they work out, right? I dont know what lies ahead for me in the future and I am plenty nervous and scared but I know I have the strength to make it through. Here's to new adventures and learning how to live, just one bit at a time. Here's to having the patience to learn new lessons over and over again, as frustrating and painful as that may sometimes be, until you get them. Here's to new hope, new choices, to strength and to independence. Here's to making your own way, no matter how damn hard it might be, and it is PRETTY DAMN HARD. Here's to never giving up, and finding the bright spots in life.
A Young Woman Does Oregon
A Young Woman Does Oregon
So, in this summer I have been to the coast, I have been to the desert; I have lived in a hippie commune for a month, I have camped for two weeks. I have seen medium sized cities, and I have seen towns so small there is no cell phone reception. I have seen llamas, sea lions, yuppies, hippies, cows, cats, and met the mayor of Eugene at a farmer's market. One thing I know: I did up Oregon well.
In this summer, I have been to the coast - six weeks. Newport, with all its seaside beauty and cute little shops. With its llamas by the side of the road, expresso ice cream and beautiful ocean air. I have been to the desert - Bend, with its maddeningly dry air and high elevation, air I could never get the hang of breathing. Learned how to cook. Met some great, wonderful people. Went to more farmer's markets in more cities than I can count. Hiked up an extinct volcano. Had wild Alaskan salmon and lox more times than I can count until I finally got sick of it.
I have lived in a hippie commune outside of Eugene, where I went at the last minute to escape a certain return to my parents'. I am forever thankful to the person who said yes, a friend from online I barely knew who agreed to drive me to Eugene at the last minute.
I saw people working together and living together in more or less harmony; lots of tie-dye; concerts with Grateful Dead music; met a schoolteacher with a British accent from North Carolina who took an interest in me, got to spend time in the company of a young woman with Down's Syndrome who touched me with her common fears, hopes and dreams, things that I shared down to the very last one. I spent a lot of time trying to deciphere the difference between kindness and obligation. I watched as people my age cooked like they were master chefs, using all organic and mostly homegrown ingredients, to create amazing meals. I had homemade basil balsamic salad dressing made from scratch. I had long and engaging conversations in the dining hall. I got to talk to a German guy about an Indian guru commune I had read a book about and he had lived in. I had some peace and quiet living on my own for a bit , even if it was nerve wracked since I was also trying to find a place to live.
I went to many, many farmer's markets and had some of the best blueberries of my life. I got to explore all of the natural food stores in Eugene and really enjoyed being able to do my shopping at Capella's. I learned how to cook steak, salmon, sole, lamb and buffalo, as well as veggies such carrots and potaotes.
I got to eat grass fed beef for the first time in my life. I camped for two weeks and realized I could push myself farther than I thought, that I was stronger than I thought. I learned about people. I learned about myself. I made some good connections with people and some not so good connections with people. I learned what it feels like to be grateful for all the truly good and helpful people out there (and to feel angry over the not so good ones).
I battled fear and anxiety as constant companions all summer, but also enjoyed wonder and delight as frequent guests as well. I saw physical scenery that soothed my soul; walked on rocky beaches more beautiful than I could have imagined. I rode in a tow truck for the first time and hopefully the last; I climbed an extinct volcano and dealt with getting lost several times. Each experience I had left an imprint on my soul. I breathed in the world. I lived the world. I experienced the world. The world is big, so big, full of so many corners and untapped areas. A person could never hope to learn and see about everything that exists even in this country in their lifetime. But this summer, I made a dent in it. My worldview is broadened for having spent the summer exploring the state of Oregon. Newport, Bend and Eugene; I think those are pretty good choices. There was, and still is, as I prepare to leave in two days, a lot of frustration. A lot of depression. A lot of worrying. A lot of wondering if I wouldn't be up to the challenge, if I wasn't good enough to handle what came my way. But I did. Every. single. time. I did. And instead of looking back and thinking what I would have liked to change and the person I would have liked to be to better enjoy it, I hope I see that I was able to be up to the challenge. That I was able to take what I could get and make the most of every drop and every experience.
I continue to struggle with my issues. Mostly fear and anxiety over my issues. I try to tell myself that things will work out and I will have the capability to do what I need to do. I just have to trust. I've gotten this far. In some ways I have felt like most of this summer was like some kind of weird video game where you have to master the earlier levels to get to the harder, higher levels. One level mastered is just an excuse for more challenges, but at the end you get lots of points! Well, life is still like that, still increasing the difficulty level every day, but if I remember it's all in how you play the cards, then I think maybe I will just get somewhere that is worth going.
My next adventure is to live with a woman in upstate New York who shares some of the same challenges I do with sensory issues and chemical sensitivities. She also has a son with Asperger's who I hope I can use my vast knowledge of AS and my life experience to be a good influence on. As well as another young woman who is on the same life path to trying to find contentment and health and peace of mind. I will stretch myself more there, no doubt. Life sometimes seems to have a very slow learning curve for me. It takes many times for certain lessons to sink in. But when they sink in, I rejoice! I need to have enough perservarance to hang in long enough to get to a place worth going. Sometimes I despair and think that with my problems, such a place doesn't exist. But other times I remind myself that that's not true. Sometimes you have to redefine your idea of success and worthiness. Surviving and being in a safe environment is the first step, and that is worth any amount of effort. Being able to become comfortable enough and healthy enough in that environment so that you can do what you want to do with your life, and have a meaningful impact on the world and others, is the second. The truth probably lies somewhere in between those two ideas. You do what you can, with what you have, and you always strive to do more; but you don't let obsessing about what you don't have dominate your life if you can help it.
Yes, the East coast will be a change after experiencing the sunny skies of Oregon all summer, but the rains will soon come and it will be nice to experience a crisp New England fall and try to savor the fact that someway, somehow I am managing to be independent and in control of my life. And when you get to a certain point in life, that's all you really want, at least at the bare minimum. Everything else, one hopes, will come in time.
Please leave comments if you read this, they mean a lot to me. Thanks! If not I'll just have to hope someone is reading anyway.
Saturday, September 12, 2009
Wednesday, August 26, 2009
A Conversation About Conversations
This guy whos name was Helmut.....Hes german...we were talking. About conversarions. I mentioned Aspergers and somehow we got t o talking.
I am out of it and cant write anything very coherently but I wanted to remember a few concepts that we talked about....apologies if this doesnt make any sense .
a) spontaneous versus planned conversations
obviously sponatenous better but i never get into spontaneous convos and if i didnt try so hard to start convos with others then id never talk to anyone; problem is when you try to plan ahead of time in your head what you are goign to say to someone and what you are going to talk about it it doesnt sound very spontaneous and sounds forced.
but twice now i have had spontaneous conversations with Helmut and his partner which is probably more spontaneous conversations than I've had with anyone for the whole year up to now and with the same person, that's pretty damn good
the first was when we were in the dining hall and they had just finished up a meeting. on their way out they said hello to me and i found out they were visitors and they talked about what they liked about LV and asked me questions about it,. That started a long conversatoion about intentional communities and community in general that was fascinating and lasted at least an hour or more.
then monday i felt a bit awkward around them as i felt like when i said hi i diidnt get a great response but maybe i was imagining it who knows. so i gave up trying to talk to them aagin even though i really liked them because i thought well maybe it was just a one time thing. cus it seemed king od awkward. but i sat at the picnic table they were at tonight at dinner more because i just needed a place to sit than because i thought i would get involved in any conversations. but after sitting there for a while there was a lull in converrsation and without really planning it i turned to them and i said "i read more about the (Indian commne) and read about how they used food poisoning to try to rig the election at the end" and it started a short conversation about that, then i askd them how their day was and they asked me how mine was and that started the convo about aspergers and communication
So the point is since they were spontaneous they were good conversations but 99% of the time spontaneous convos just do not happen for me. no one usually initiates convos with me as sad as that sometimes is and if iwant to talk ro someone i have to initiate but that means i have to plan what i am going to say so it does feel a bit less natural but what cvan you do?
b) Anyway we talked about leaving space in conversationsfor people to talk and think, and about how if you are comfortable wiht yourself other people will be more comfortable with you. If you can say things confidently and without as much anxiety people will be less scared of you. Also if youcan be comfortable enough with yourserlf to have spaces in conversation not filled with conversation people will feel more comfortable and be more likely to say something becasue they have had space to think. I think that would be a good thing and want to try doing this more.
c) he said if you are thinking about yourself and how you are coming across and how nervous you are and so on that you have no space within yourself to hear or percieve the other person. you are not liosteningthen. So to be more present you should be ok with yourself i guess. i dont know. i asked him what it would like to be "present" with someone and "percieve" them more than i already do. i ask questions to show im listening , repeat statements, etc. i feel like i am present with people.
but he then said something interesting, he said, it's not about what you say as much as what you are,
that people will be able to TELL if you're interested and listening without you saying that you are, I dont know what I think about that. Communications classes always teach the importantance of active listening don't they? I believe it is important to let others know tyou are listening actively. But, of course, the thing is, it comes down all to nonverbal language which I and everyone else with AS suck at completely. Somehow NT people KNOW that other people are interested and or connected WITHOUT ANY VERBAL LANGUAGE to indicate so. And that drives me crazy! Because of course I can't tell if someone is interested or not or tuned into what i am saying unless they say so; so I guess I assumed they felt the same. So i think the message was that I should just focus on conversing wiht someone and .... I don't know, this is where it gets too abstract for me. I feel like I can't do any more than I do to be "in connection with" and listening to someone during a conversatino bt there seeems to bea missing piece eluding me here.
How do you listen to others without worrying about your own stuff and having that come across? Any ideas?? it might not be someting that is changeable ..... I don't know .
It all seemed rather profound to me but the non concrete stuff went over my head. I did grasp the idea of people knowing other people were interested without them having to say it but I have NO IDEA how in the hell to do it or use the concept practically.
The nonverbal language deficit in AS drives me crazy. Aspies talk too much because they don't know how to communicate nonverbally or understand nonverbal messages; NTs think we're crazy and don't understand why; we don't understand them because they won't say anything explicitly; etc etc whole chain of events.
I think the only thing I can take away from this is to give people more space in conversations and feel more comfortable with yourself during conversations to try to create a higher level of comfort and connections during conversation.
Of course I have always felt that I could talk to someone until I was blue in the face most of the time and still not really feel a sense of connection to them....Something to do witth this is why but I cant quite put my finger on it nor know how to change it .
I did very much enjoy the conversation though and it did satisfy my need for deep intense meaningful emotional conversations. Gotta love thsoe German guys. Who knew you could get nto a convo that good with someone you just met - only at a commune- as far as I can see at least some people here are used to very open communication.
The biggest problem with Aspies and convos is that we need RULES for everything and conversation is nothing if not a forum of communication supposed to be devoid of rules - ie - spontaneous, intuitive. We have to use logic to figure out what other people intuit and it would seem to me that that takes a LOT away from the game which is a damn shame.
OK I'm tired now...
Kate
I am out of it and cant write anything very coherently but I wanted to remember a few concepts that we talked about....apologies if this doesnt make any sense .
a) spontaneous versus planned conversations
obviously sponatenous better but i never get into spontaneous convos and if i didnt try so hard to start convos with others then id never talk to anyone; problem is when you try to plan ahead of time in your head what you are goign to say to someone and what you are going to talk about it it doesnt sound very spontaneous and sounds forced.
but twice now i have had spontaneous conversations with Helmut and his partner which is probably more spontaneous conversations than I've had with anyone for the whole year up to now and with the same person, that's pretty damn good
the first was when we were in the dining hall and they had just finished up a meeting. on their way out they said hello to me and i found out they were visitors and they talked about what they liked about LV and asked me questions about it,. That started a long conversatoion about intentional communities and community in general that was fascinating and lasted at least an hour or more.
then monday i felt a bit awkward around them as i felt like when i said hi i diidnt get a great response but maybe i was imagining it who knows. so i gave up trying to talk to them aagin even though i really liked them because i thought well maybe it was just a one time thing. cus it seemed king od awkward. but i sat at the picnic table they were at tonight at dinner more because i just needed a place to sit than because i thought i would get involved in any conversations. but after sitting there for a while there was a lull in converrsation and without really planning it i turned to them and i said "i read more about the (Indian commne) and read about how they used food poisoning to try to rig the election at the end" and it started a short conversation about that, then i askd them how their day was and they asked me how mine was and that started the convo about aspergers and communication
So the point is since they were spontaneous they were good conversations but 99% of the time spontaneous convos just do not happen for me. no one usually initiates convos with me as sad as that sometimes is and if iwant to talk ro someone i have to initiate but that means i have to plan what i am going to say so it does feel a bit less natural but what cvan you do?
b) Anyway we talked about leaving space in conversationsfor people to talk and think, and about how if you are comfortable wiht yourself other people will be more comfortable with you. If you can say things confidently and without as much anxiety people will be less scared of you. Also if youcan be comfortable enough with yourserlf to have spaces in conversation not filled with conversation people will feel more comfortable and be more likely to say something becasue they have had space to think. I think that would be a good thing and want to try doing this more.
c) he said if you are thinking about yourself and how you are coming across and how nervous you are and so on that you have no space within yourself to hear or percieve the other person. you are not liosteningthen. So to be more present you should be ok with yourself i guess. i dont know. i asked him what it would like to be "present" with someone and "percieve" them more than i already do. i ask questions to show im listening , repeat statements, etc. i feel like i am present with people.
but he then said something interesting, he said, it's not about what you say as much as what you are,
that people will be able to TELL if you're interested and listening without you saying that you are, I dont know what I think about that. Communications classes always teach the importantance of active listening don't they? I believe it is important to let others know tyou are listening actively. But, of course, the thing is, it comes down all to nonverbal language which I and everyone else with AS suck at completely. Somehow NT people KNOW that other people are interested and or connected WITHOUT ANY VERBAL LANGUAGE to indicate so. And that drives me crazy! Because of course I can't tell if someone is interested or not or tuned into what i am saying unless they say so; so I guess I assumed they felt the same. So i think the message was that I should just focus on conversing wiht someone and .... I don't know, this is where it gets too abstract for me. I feel like I can't do any more than I do to be "in connection with" and listening to someone during a conversatino bt there seeems to bea missing piece eluding me here.
How do you listen to others without worrying about your own stuff and having that come across? Any ideas?? it might not be someting that is changeable ..... I don't know .
It all seemed rather profound to me but the non concrete stuff went over my head. I did grasp the idea of people knowing other people were interested without them having to say it but I have NO IDEA how in the hell to do it or use the concept practically.
The nonverbal language deficit in AS drives me crazy. Aspies talk too much because they don't know how to communicate nonverbally or understand nonverbal messages; NTs think we're crazy and don't understand why; we don't understand them because they won't say anything explicitly; etc etc whole chain of events.
I think the only thing I can take away from this is to give people more space in conversations and feel more comfortable with yourself during conversations to try to create a higher level of comfort and connections during conversation.
Of course I have always felt that I could talk to someone until I was blue in the face most of the time and still not really feel a sense of connection to them....Something to do witth this is why but I cant quite put my finger on it nor know how to change it .
I did very much enjoy the conversation though and it did satisfy my need for deep intense meaningful emotional conversations. Gotta love thsoe German guys. Who knew you could get nto a convo that good with someone you just met - only at a commune- as far as I can see at least some people here are used to very open communication.
The biggest problem with Aspies and convos is that we need RULES for everything and conversation is nothing if not a forum of communication supposed to be devoid of rules - ie - spontaneous, intuitive. We have to use logic to figure out what other people intuit and it would seem to me that that takes a LOT away from the game which is a damn shame.
OK I'm tired now...
Kate
Friday, August 14, 2009
What a Long, Strange Trip It's Been
Well, it's been a while. Yes. I wonder if any of my blog friends are still out there. Writing has been difficult lately because of all that has been happening. My roommmate in Bend gave me four days notice to leave. THAT was fun! I went into problem solving frenzy and tried to find every possible environmentally friendly living option that I could get to which numbered.....um.....Oh yeah! Zero! That was fun, too.
At the very last minute a friend suggested an ecovillage outside of Eugene. Otherwise known as hippie commune. At the VERY LAST MINUTE. I called them and asked if I could stay for cheap while they processed my application to rent an apartment for long term. They said yes. But I had no way to get there. At 5pm on Thursday I finally found someone who agreed to take me on Saturday - and a friend to let me stay in Bend one extra night.
My love of oldies paid off - he was the stepson of an Australian woman I know from oldies chat. Never know where connections are going to come from, huh?
He was a very nice, courteous and caring kind of guy. And his car was fortunately safe for me. We had a pleasant drive over.
The place I'm at is an educational center, has yurts, tents, cabins, and a few apartments. Lots of woods, etc. Common dining hall, thingd made out of cob.
So I stayed in a large apartment for a week , at the end of which they denied my application. At first I thought it was because my previous roommate gave a bad reference, which I overheard walking by the office. That was fun! Not. No, I don't know why I put it down.
But then I was told it was because they thought that my "sensory issues" were not compatible with living here. That that is basically disability discrimination did not occur to me until much later .
They did however let me stay for a short time in another unit while I looked for places to live in Eugene. Not as long as I had hoped, of course, but at least they let me stay. They are nice, generous, compassionate people, other than, of course, the whole disability discrimination thing.
At the moment I have a week left and still no place to live. Also fun - NOT. I have hired someone to do my grocery shopping for me as we are 40 min from nearest town (Eugene) and I don't drive. I hired someone to drive me to look for apts. I have done pretty good with independent living here, I'll say hat much. I have cooked everything on a hot plate.
So kudos for that but finding a place to live would be nice. I have one more possibility for Tuesday. If anyone has any ideas let me know.
I do love Eugene - ecocapital of the world .Most eco friendly city I have ever concieved of . They have a 140 page "eco friendly" business phone book, people actually know what chemical sensitivity is here, and tie dye and farmers markets abound. There is nothing more that I love than a good hippie city.
Except, of course, a place to live in said city.
So please I could use all the good wishes I can get....Thanks!
I just thought I'd do a quick update in case anyone was wondering where I'd gone to
I'm trying to be strong and am lucky to have support from friends....and an occasional family member although a good half of them are very against me trying to be independent it seems...
Kate
At the very last minute a friend suggested an ecovillage outside of Eugene. Otherwise known as hippie commune. At the VERY LAST MINUTE. I called them and asked if I could stay for cheap while they processed my application to rent an apartment for long term. They said yes. But I had no way to get there. At 5pm on Thursday I finally found someone who agreed to take me on Saturday - and a friend to let me stay in Bend one extra night.
My love of oldies paid off - he was the stepson of an Australian woman I know from oldies chat. Never know where connections are going to come from, huh?
He was a very nice, courteous and caring kind of guy. And his car was fortunately safe for me. We had a pleasant drive over.
The place I'm at is an educational center, has yurts, tents, cabins, and a few apartments. Lots of woods, etc. Common dining hall, thingd made out of cob.
So I stayed in a large apartment for a week , at the end of which they denied my application. At first I thought it was because my previous roommate gave a bad reference, which I overheard walking by the office. That was fun! Not. No, I don't know why I put it down.
But then I was told it was because they thought that my "sensory issues" were not compatible with living here. That that is basically disability discrimination did not occur to me until much later .
They did however let me stay for a short time in another unit while I looked for places to live in Eugene. Not as long as I had hoped, of course, but at least they let me stay. They are nice, generous, compassionate people, other than, of course, the whole disability discrimination thing.
At the moment I have a week left and still no place to live. Also fun - NOT. I have hired someone to do my grocery shopping for me as we are 40 min from nearest town (Eugene) and I don't drive. I hired someone to drive me to look for apts. I have done pretty good with independent living here, I'll say hat much. I have cooked everything on a hot plate.
So kudos for that but finding a place to live would be nice. I have one more possibility for Tuesday. If anyone has any ideas let me know.
I do love Eugene - ecocapital of the world .Most eco friendly city I have ever concieved of . They have a 140 page "eco friendly" business phone book, people actually know what chemical sensitivity is here, and tie dye and farmers markets abound. There is nothing more that I love than a good hippie city.
Except, of course, a place to live in said city.
So please I could use all the good wishes I can get....Thanks!
I just thought I'd do a quick update in case anyone was wondering where I'd gone to
I'm trying to be strong and am lucky to have support from friends....and an occasional family member although a good half of them are very against me trying to be independent it seems...
Kate
Sunday, July 12, 2009
Street Festivals Mean Accessibility
You can tell a lot about a town by its street festivals. Well, okay, maybe there are no great lessons to be learned from fried dough, mobs of people, and the occasional arts and crafts, but they sure are fun and promote a sense of community in a town.
Also, street festivals are the ultimate in accessibility for someone who can't go inside places (due to MCS). All of those things you have been craving, like buying prepared food and going into stores to look at things, suddenly come outside! I never fail to get excited over food sold at a festival. It must be an ingrained response learned from my childhood....I sure liked food then, too. :)
Every town I have been to, I have smiled when I saw what they called "fried dough" locally. It seems different in every town. In Maine we always just called it friend dough. But in Maryland it was called something different, Missoula different still..... Although I think "elephant ears" seems to be a popular name....So funny.
There was a stand selling baked potatoes and corn on the cob....Yum....I considered asking if she'd take the corn off the cob for me but then decided to concentrate my energies on gettting to and navigating the BBQ stand. There was lots of ethnic food, pizza, ice cream, usual things.... one place had salmon.....and the BBQ place, man could I go for some good BBQ, I really wanted marinated steak tips but alas they were nowhere to be found. So I settled for some pulled pork instead. Tasted just like my dad's - my dad makes it every summer. And it's actually good - never would eat pork otherwise.
There is an art to navigating that many people. First, you have to want to, pure and simple. There has to be a reason. Second, you move fast. Do not in any circumstance linger - you will get swallowed by the crowd and knocked out by smells. Funny thing is, people don't smell nearly as bad if you're moving by them too fast to get a good whiff. :)
Navigating through a group of people is almost like a game of strategy. You have to be on alert, look ahead and be planning all the time - looking for the gaps and openings, thinking about in what ways you will move your body in order to fit through the ever changing openings that are constantly occuring.
The street of art vendors was boring; in the middle to the right was the street of food vendors and a band or two. Bend does its festivals right and thankfully the music was kept to tolerable levels. Something Missoula did not know how to do. lol. Have I mentioned that before?
To the left was a street of crafty things. None particularly interesting but better than the art.
Continuing down the street, there was a display of much better and more interesting crafty things. I got two magnets with sayings on them, and some baked corn with cinamon that I regretted buying, but oh well. Guy was nice there. His stand was right by the huge Bank of America time and temp sign. Said it was 95 there earlier but only about maybe 78 when I got there and a few degrees less an hour or two later. Poor guy, not only to be hot but to be overinformed about just how hot it is, lol.
Despite regretting the baked corn, it did give me a bit of a sugar high for a few minutes and when "Marakeesh Express" came on the radio, I actually felt like dancing, for a minute, and did so. It is an extremely beyond belief depressing thought to think that the only times I feel truly happy, alive, and good are after consuming food with large amounts of sugar in them. Really depressing, since I am REALLY trying to avoid anything sweet or w/ sugar. Honestly, I do not know how I will live that way, but I think I have to, for the sake of my health. ARGH.
Well whatever. Like I said, street festivals at least give me a feeling of inclusion and being able to participate in a community event, or hell, participate in anything that involves, you know, other people, food, something other than staring at my feet, lol.
Other than having boring music (but thankfully not loud boring music) they did a pretty good job.
Just looked up some Sugarland info and almost lost this blog post. We are seeeing them live and outdoors in two weeks.
Kate
Also, street festivals are the ultimate in accessibility for someone who can't go inside places (due to MCS). All of those things you have been craving, like buying prepared food and going into stores to look at things, suddenly come outside! I never fail to get excited over food sold at a festival. It must be an ingrained response learned from my childhood....I sure liked food then, too. :)
Every town I have been to, I have smiled when I saw what they called "fried dough" locally. It seems different in every town. In Maine we always just called it friend dough. But in Maryland it was called something different, Missoula different still..... Although I think "elephant ears" seems to be a popular name....So funny.
There was a stand selling baked potatoes and corn on the cob....Yum....I considered asking if she'd take the corn off the cob for me but then decided to concentrate my energies on gettting to and navigating the BBQ stand. There was lots of ethnic food, pizza, ice cream, usual things.... one place had salmon.....and the BBQ place, man could I go for some good BBQ, I really wanted marinated steak tips but alas they were nowhere to be found. So I settled for some pulled pork instead. Tasted just like my dad's - my dad makes it every summer. And it's actually good - never would eat pork otherwise.
There is an art to navigating that many people. First, you have to want to, pure and simple. There has to be a reason. Second, you move fast. Do not in any circumstance linger - you will get swallowed by the crowd and knocked out by smells. Funny thing is, people don't smell nearly as bad if you're moving by them too fast to get a good whiff. :)
Navigating through a group of people is almost like a game of strategy. You have to be on alert, look ahead and be planning all the time - looking for the gaps and openings, thinking about in what ways you will move your body in order to fit through the ever changing openings that are constantly occuring.
The street of art vendors was boring; in the middle to the right was the street of food vendors and a band or two. Bend does its festivals right and thankfully the music was kept to tolerable levels. Something Missoula did not know how to do. lol. Have I mentioned that before?
To the left was a street of crafty things. None particularly interesting but better than the art.
Continuing down the street, there was a display of much better and more interesting crafty things. I got two magnets with sayings on them, and some baked corn with cinamon that I regretted buying, but oh well. Guy was nice there. His stand was right by the huge Bank of America time and temp sign. Said it was 95 there earlier but only about maybe 78 when I got there and a few degrees less an hour or two later. Poor guy, not only to be hot but to be overinformed about just how hot it is, lol.
Despite regretting the baked corn, it did give me a bit of a sugar high for a few minutes and when "Marakeesh Express" came on the radio, I actually felt like dancing, for a minute, and did so. It is an extremely beyond belief depressing thought to think that the only times I feel truly happy, alive, and good are after consuming food with large amounts of sugar in them. Really depressing, since I am REALLY trying to avoid anything sweet or w/ sugar. Honestly, I do not know how I will live that way, but I think I have to, for the sake of my health. ARGH.
Well whatever. Like I said, street festivals at least give me a feeling of inclusion and being able to participate in a community event, or hell, participate in anything that involves, you know, other people, food, something other than staring at my feet, lol.
Other than having boring music (but thankfully not loud boring music) they did a pretty good job.
Just looked up some Sugarland info and almost lost this blog post. We are seeeing them live and outdoors in two weeks.
Kate
Friday, July 10, 2009
Connection (NYT article on autism)
I wrote this a while ago and just found it in my files, thought it worth posting:
***
I just read a story in the New York Times Magazine from a few weeks ago about autistic teenagers that was very profound to me. In all the years I have been researching autism, it seems I am still able to be surprised and amazed by new information once in a while; I thought I had read everything there was worth reading on it!
The article can be found at http://www.nytimes.com/2008/10/19/magazine/19Autism-t.html?fta=y , but I am not sure if you need a NYT account to read it or not. Hopefully not. Anyone who can't get it and wants the full article can email me.
The NYT article was about floortime and a school for ASD teens. Floortime is a theory pioneered by Stanley Greenspan that says you should connect with an autistic person on the level they're at, using their interests and abilities to create a relationship. Once you create a relationship, this connection will enable them to better able to connect to, be a part of and interact with the world. I really like that theory.
It addresses the relational deficits in autism, which are of course some of the prime deficits in the disorder.
From the article:
"What does this have to do with autism? A child born at risk of an A.S.D. has cognitive and sensitivity issues that inhibit engagement. Pleasures enjoyed by a typical baby can upset him: a mother’s face seems too close, so the infant cranes away; the father’s tickles may produce fear reflexes rather than laughter. Meanwhile the sunlight is burning his eyes, the diaper scrapes his skin and the baby begins avoiding interaction with people at the cost of normal brain development.
I begin to picture the brain metaphorically as a tangled ball of
Christmas lights. When you plug it in, there are strands that light up perfectly and there are dark zones where a single burned-out bulb has caused a line to go out. If the bulb for Exchanging-Smiles-With-Mother doesn’t light up, then Empathy won’t be kindled farther along the strand, or Playfulness, or Theory of Mind (the insight that other people have different thoughts from yours). The electrical current won’t reach
the social-skill set, the communication skills, creativity, humor or
abstract thinking.
According to the D.I.R. perspective, emotion is the power source that lights up the neural switchboard. D.I.R./Floortime’s goal is to connect autistic students with other people as a way of fueling their cognitive potential and giving them access to their own feelings, desires and insights. The latest findings in the field of neuroplasticity support D.I.R.’s faith in the capacity of the human brain to recoup and to compensate for injury and illness. “Early intervention is optimal,” Dr. Greenspan told me, “but it’s never too late. The areas of the brain that
regulate emotions, that sequence ideas and actions and that influence abstract thinking keep growing into a person’s 50s and 60s.” "
This is a theory that makes a great deal of sense to me. People with autism have relational deficits not only because their brain is hard wired that way, but because of the way their brain is wired, they miss out on early opportunities for connection and learning emotional regulation due to their sensory issues. This is not the fault of the parents; it is merely the fault of the way the person's brain works. When a child does not learn emotional concepts when they are young, they have a much harder time understanding them later on.
That is why a relational, emotional approach to working with autism seems so important. Help a person with autism work through their feelings, help them problem solve step by step, help them learn how to ask other people for help and interact with others in a meaningful way, and you are giving them the skills they need to succeed in life.
This brings me to the most profound quote in the article; really, you need to read the whole thing to grasp the context, but I tried to summarize it above. This paragraph sums up basically everything I have been trying to articulate in four years, everything I believe to be at the root of most of my problems or the problems of most people with autism, and it stuns me that something can still do that four years later.
"“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.”
That is so profound to me because it speaks to an absolute truth. If you have nothing but yourself to turn to, you really are at the mercy of whatever coping system your brain has developed to deal with problems: some good and some definitely not. You can get lost in a problem and become considerably distressed over it, left to your own devices. But if you have someone to walk you through the problem, redirect you, someone who you feel a connection to, that feeling of emotional connection will probably override most of the distressed and despairing feelings and bring a sense of calm; and the other person's helping you to problem solve will ground you and remind you to look at the problem in perspective, in a reasonable way.
More than anything else, it is the emotional connection that seems to be missing with people in autism. People who are not autistic probably know - or perhaps they don't since they know no other reality - how much a sense of connection to others has helped mute some problems in their life and generally made them feel more confident and secure in their ability to handle life's problems. People with autism, however, generally know nothing but their own feelings and emotions, and find it extremely hard to feel a sense of connection to others, especially an emotional one. This lack of connection leaves them floundering and can cause many to regress into many of the inappropriate behaviors often seen in autism.
So what to do about this? Well, the article explains how one school is doing it; but basically, it seems, people need to just try to reach the person with autism at the level they are at, understand the way their brain works, and try to reach them
and connect with them on a level they will understand. That is obviously a simplistic way of looking at it, and the real answer would be far more complex, and more research needs to be done on this matter, but that is a good start.
***
I just read a story in the New York Times Magazine from a few weeks ago about autistic teenagers that was very profound to me. In all the years I have been researching autism, it seems I am still able to be surprised and amazed by new information once in a while; I thought I had read everything there was worth reading on it!
The article can be found at http://www.nytimes.com/2008/10/19/magazine/19Autism-t.html?fta=y , but I am not sure if you need a NYT account to read it or not. Hopefully not. Anyone who can't get it and wants the full article can email me.
The NYT article was about floortime and a school for ASD teens. Floortime is a theory pioneered by Stanley Greenspan that says you should connect with an autistic person on the level they're at, using their interests and abilities to create a relationship. Once you create a relationship, this connection will enable them to better able to connect to, be a part of and interact with the world. I really like that theory.
It addresses the relational deficits in autism, which are of course some of the prime deficits in the disorder.
From the article:
"What does this have to do with autism? A child born at risk of an A.S.D. has cognitive and sensitivity issues that inhibit engagement. Pleasures enjoyed by a typical baby can upset him: a mother’s face seems too close, so the infant cranes away; the father’s tickles may produce fear reflexes rather than laughter. Meanwhile the sunlight is burning his eyes, the diaper scrapes his skin and the baby begins avoiding interaction with people at the cost of normal brain development.
I begin to picture the brain metaphorically as a tangled ball of
Christmas lights. When you plug it in, there are strands that light up perfectly and there are dark zones where a single burned-out bulb has caused a line to go out. If the bulb for Exchanging-Smiles-With-Mother doesn’t light up, then Empathy won’t be kindled farther along the strand, or Playfulness, or Theory of Mind (the insight that other people have different thoughts from yours). The electrical current won’t reach
the social-skill set, the communication skills, creativity, humor or
abstract thinking.
According to the D.I.R. perspective, emotion is the power source that lights up the neural switchboard. D.I.R./Floortime’s goal is to connect autistic students with other people as a way of fueling their cognitive potential and giving them access to their own feelings, desires and insights. The latest findings in the field of neuroplasticity support D.I.R.’s faith in the capacity of the human brain to recoup and to compensate for injury and illness. “Early intervention is optimal,” Dr. Greenspan told me, “but it’s never too late. The areas of the brain that
regulate emotions, that sequence ideas and actions and that influence abstract thinking keep growing into a person’s 50s and 60s.” "
This is a theory that makes a great deal of sense to me. People with autism have relational deficits not only because their brain is hard wired that way, but because of the way their brain is wired, they miss out on early opportunities for connection and learning emotional regulation due to their sensory issues. This is not the fault of the parents; it is merely the fault of the way the person's brain works. When a child does not learn emotional concepts when they are young, they have a much harder time understanding them later on.
That is why a relational, emotional approach to working with autism seems so important. Help a person with autism work through their feelings, help them problem solve step by step, help them learn how to ask other people for help and interact with others in a meaningful way, and you are giving them the skills they need to succeed in life.
This brings me to the most profound quote in the article; really, you need to read the whole thing to grasp the context, but I tried to summarize it above. This paragraph sums up basically everything I have been trying to articulate in four years, everything I believe to be at the root of most of my problems or the problems of most people with autism, and it stuns me that something can still do that four years later.
"“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.”
That is so profound to me because it speaks to an absolute truth. If you have nothing but yourself to turn to, you really are at the mercy of whatever coping system your brain has developed to deal with problems: some good and some definitely not. You can get lost in a problem and become considerably distressed over it, left to your own devices. But if you have someone to walk you through the problem, redirect you, someone who you feel a connection to, that feeling of emotional connection will probably override most of the distressed and despairing feelings and bring a sense of calm; and the other person's helping you to problem solve will ground you and remind you to look at the problem in perspective, in a reasonable way.
More than anything else, it is the emotional connection that seems to be missing with people in autism. People who are not autistic probably know - or perhaps they don't since they know no other reality - how much a sense of connection to others has helped mute some problems in their life and generally made them feel more confident and secure in their ability to handle life's problems. People with autism, however, generally know nothing but their own feelings and emotions, and find it extremely hard to feel a sense of connection to others, especially an emotional one. This lack of connection leaves them floundering and can cause many to regress into many of the inappropriate behaviors often seen in autism.
So what to do about this? Well, the article explains how one school is doing it; but basically, it seems, people need to just try to reach the person with autism at the level they are at, understand the way their brain works, and try to reach them
and connect with them on a level they will understand. That is obviously a simplistic way of looking at it, and the real answer would be far more complex, and more research needs to be done on this matter, but that is a good start.
Thursday, July 9, 2009
Genius and Idiocy Meet in Downtown Bend
On the one hand - On the one hand, Bend showed some endearing and enjoyable character tonight in the form of a very enjoyable, five person street band singing the most infectious and toe tapping melodies you have ever heard (including a song about how fat Howard Taft was). They even had a washboard!! How often do you see that?
When I got to the farmer's market, most of it had already been packed up and I was on overwhelm because of some weird smells in the air. I think the more humid air holds in smells better, because the lavender from the lavender stand almost made me want to pass out, and before I've been perfectly fine with it.
I calmed down eventually tho. And saw a crepe stand. And had fun, not , agonizing for about half an hour whether I should get a crepe or not. I wanted one more tha anything, I've always loved crepes more than anything, and their menu - the best I'd ever seen. But I wanted to be calm and stable when I got home, and if I ate something I reacted to, then I'd be a mess when I got home and it was time to stop doing that. I was afraid the wheat in the batter might upset my stomach, and the sweet fillings would almost definitely bother my teeth. So I read the menu over and over and had to be contented with imaging how they would taste. I had a nice convo with the guy behidn the booth. He was from Conneticut, went to school in Boston, and had lived in Bethel, Maine before.
Then I saw them. A few guys with a guitar playing some wonderful sounding foot tapping music. They made me smile. I was sorry when they left after only one song. I briefly considered following them.
I left the crepe stand to go walk in Drake Park for a bit. When I came back, there was no sign of Crepe Guy or Guitar People. I wandered into downtown the long way, and to my surprise and delight, when I got there, what did I see, but both the crepe stand and street band - the band playing the same song as before. It felt like Groundhog Day.
Five guys in their 20s, goofy and wonderful, one with a washboard of all things. Two guitars, a harmonica and a washboard. What a wonderful sound that made! At first, in the park, I was afraid to approach them; they looked like the kind of people you needed to stay away from. I soon found out I was wrong though. They were very nice and sweet. They started asking people who walked by if they wanted to hear a song, and that gave me the courage to go over to them and request anything from the 60s. They didn't know any, but played a song for me anyway that I liked it. It was kind of lik folk music.... I don't know to describe it. Great harmonies and melodies. They soon started playing different songs instead of the same one. I gave them a dollar. They thanked me twice for watching! Said they had only been playing for two weeks but looked so natural like they had been doing it all their lives. They played one song with a chorus line of "All I want for Christmas is Mother Mary's abortion" - but they said it in such a laughing, fast, fun way - you'd have to be there. It made me laugh out loud. And they sang another song about how fat Howard Taft was, lol. Such energy, such infectious energy. That is one good thing about Bend. They were so new they didn't even have a name yet.
On the other, I'm absolutely pissed off because someone set a firecracker to go off in the trash can I was standing right next to, causing much, much physical discomfort and emotional distress that I still have not recovered from. It was in the middle of the band's set. It hurt their ears too, I was slightly closer though.
It ruined the night, set off a long train of obsessive worry about if my ears would recover - they still bother me - and brought me back to scared and near meltdown mode. And it made me disconbulated enough to have an argument with M tonight and that is what I am trying to avoid, I am trying to be more emotionally stable.
I am disillusioned, depressed, and pissed that someone would ruin the first time I actually started to enjoy myself, and bring me back to scared and overwhelmed x 20. What idiots.
But I suppose I should try to focus on the good ,right? That band had no control over what some idiot did, and they were something else.
But of all the street corners and all the trash cans in Bend, the fact that someone had to set off a firecracker in the trash can right next to me, freaks the hell out of me. For the love of God. Can't people grow up?
I swear, though, of all things I think about and worry about and try to prepare for when I go out in public, someone setting firecrackers off in a trash can two feet from me is NOT one I had ever considered, and I am pretty what's the word. ...... feeling a bit shattered from it ?
There's a lot of things you can prepare for and avoid but firecrackers in a trash can is not one of them, is not something you can know about ahead of time or leave before the damage has been done.
Idiots. What an interesting brand of idiots they have here. I'm sorry, Bend, I don't mean to judge you by the act of one individual, or anyone else who lives here, but that is a particular brand of mischief and tomfoolery that leaves me more than a little bit rattled, and that kind of thing just shouldn't happen. How often DOES it happen, anyway? It's not like I have any reference point.
So.....There you have it. Another day, another crisis, and I'm getting pretty damn tired of them.
I'll try to focus on the good but it's damn hard.
Kate
When I got to the farmer's market, most of it had already been packed up and I was on overwhelm because of some weird smells in the air. I think the more humid air holds in smells better, because the lavender from the lavender stand almost made me want to pass out, and before I've been perfectly fine with it.
I calmed down eventually tho. And saw a crepe stand. And had fun, not , agonizing for about half an hour whether I should get a crepe or not. I wanted one more tha anything, I've always loved crepes more than anything, and their menu - the best I'd ever seen. But I wanted to be calm and stable when I got home, and if I ate something I reacted to, then I'd be a mess when I got home and it was time to stop doing that. I was afraid the wheat in the batter might upset my stomach, and the sweet fillings would almost definitely bother my teeth. So I read the menu over and over and had to be contented with imaging how they would taste. I had a nice convo with the guy behidn the booth. He was from Conneticut, went to school in Boston, and had lived in Bethel, Maine before.
Then I saw them. A few guys with a guitar playing some wonderful sounding foot tapping music. They made me smile. I was sorry when they left after only one song. I briefly considered following them.
I left the crepe stand to go walk in Drake Park for a bit. When I came back, there was no sign of Crepe Guy or Guitar People. I wandered into downtown the long way, and to my surprise and delight, when I got there, what did I see, but both the crepe stand and street band - the band playing the same song as before. It felt like Groundhog Day.
Five guys in their 20s, goofy and wonderful, one with a washboard of all things. Two guitars, a harmonica and a washboard. What a wonderful sound that made! At first, in the park, I was afraid to approach them; they looked like the kind of people you needed to stay away from. I soon found out I was wrong though. They were very nice and sweet. They started asking people who walked by if they wanted to hear a song, and that gave me the courage to go over to them and request anything from the 60s. They didn't know any, but played a song for me anyway that I liked it. It was kind of lik folk music.... I don't know to describe it. Great harmonies and melodies. They soon started playing different songs instead of the same one. I gave them a dollar. They thanked me twice for watching! Said they had only been playing for two weeks but looked so natural like they had been doing it all their lives. They played one song with a chorus line of "All I want for Christmas is Mother Mary's abortion" - but they said it in such a laughing, fast, fun way - you'd have to be there. It made me laugh out loud. And they sang another song about how fat Howard Taft was, lol. Such energy, such infectious energy. That is one good thing about Bend. They were so new they didn't even have a name yet.
On the other, I'm absolutely pissed off because someone set a firecracker to go off in the trash can I was standing right next to, causing much, much physical discomfort and emotional distress that I still have not recovered from. It was in the middle of the band's set. It hurt their ears too, I was slightly closer though.
It ruined the night, set off a long train of obsessive worry about if my ears would recover - they still bother me - and brought me back to scared and near meltdown mode. And it made me disconbulated enough to have an argument with M tonight and that is what I am trying to avoid, I am trying to be more emotionally stable.
I am disillusioned, depressed, and pissed that someone would ruin the first time I actually started to enjoy myself, and bring me back to scared and overwhelmed x 20. What idiots.
But I suppose I should try to focus on the good ,right? That band had no control over what some idiot did, and they were something else.
But of all the street corners and all the trash cans in Bend, the fact that someone had to set off a firecracker in the trash can right next to me, freaks the hell out of me. For the love of God. Can't people grow up?
I swear, though, of all things I think about and worry about and try to prepare for when I go out in public, someone setting firecrackers off in a trash can two feet from me is NOT one I had ever considered, and I am pretty what's the word. ...... feeling a bit shattered from it ?
There's a lot of things you can prepare for and avoid but firecrackers in a trash can is not one of them, is not something you can know about ahead of time or leave before the damage has been done.
Idiots. What an interesting brand of idiots they have here. I'm sorry, Bend, I don't mean to judge you by the act of one individual, or anyone else who lives here, but that is a particular brand of mischief and tomfoolery that leaves me more than a little bit rattled, and that kind of thing just shouldn't happen. How often DOES it happen, anyway? It's not like I have any reference point.
So.....There you have it. Another day, another crisis, and I'm getting pretty damn tired of them.
I'll try to focus on the good but it's damn hard.
Kate
Wednesday, July 8, 2009
Memories of my past: Where do all the pieces go?
Since I was on a roll for once I wrote a second essay tonight. Any comments or insight welcome. Especially from AS people or parents who can tell me if any of this sounds familiar. But comments from all welcome.
Assembling the Pieces of a Broken Past
It is hard to figure out sometimes, isn't it, what made you the person that you are. You can look at your faults, you can look at the unique issues only you have, and you ask yourself, what went wrong? Or, at least, why am I the person I am today - good and bad combined?
I was never comfortable around other kids. Not for as long as I can remember. My earliest memories revolve around feeling left out, abandoned, picked on and isolated. Not a happy tale, but a true one nevertheless. I can't isolate individual incidents that caused this, because as far as I can remember, it was always this way. It might be perhaps that I was just far too sensitive to everyday childhood teasing and roughness. There is no excuse for bullying, but it is possible that normal childhood behavior can be misinterpreted by one who is overly sensitive and lacks the ability to understand human motives and intentions very well (perhaps due to something like Asperger's.)
All I remember about other kids is being scared of them. I just remember a palpable fearing of fear around them from first grade on. They were so loud and unpredictable; they laughed in my face; they were fast-moving and boisterous. They didn't make sense. And I, I am sure, did not make sense to them either.
If you didn't put your name on your homework in Mrs. Himmler's first grade class, she would make you stay in for reccess. Other kids would steal my worksheets from me before I had the chance to put my name on them. They'd put them in the basket and make my name go on the board. The blackboard listed the names of the kids who had to stay in because they did something wrong. I didn't mind staying in for reccess because I never went out anyway. I did mind the feeling of helplessness and indignition that came from being framed for something I didn't do.
The halls of the elementary school were big and imposing. I'd go to the school store during recess and lunch and hang out there, buying an eraser for 50 cents or a pencil sharpener for a dollar. Perhaps buying things was a tangible reminder that I could have an effect over something; two quarters gave me an eraser that I could touch and feel and hold on to; but all the effort in the world couldn't make another kid or adult listen to me when I wanted to talk. My shyness and fear of others trapped me when I was in school.
I had a relatively severe speech impediment. I'm just remembering that now; I had forgotten. Maybe that was the difference that set me apart. Maybe that's why I had such a hard time getting any one to listen to me or understand me. Maybe that's why I became so sensitized to the looks of disgust and perplexment on the faces of others. Over and over again I got the message: You make no sense. I don't understand what you're saying. I don't understand *you.*
That is, of course, when people were patient enough to try to figure out what I was saying in the first place. A child doesn't know what a speech impediment is; they only know that no one is listening to them, and everyone seems frustrated by them. That can do things to your self image and understanding of yourself that are pretty ingrained at that age.
I got speech therapy in the later grades and was told I improved greatly; but, of course, I could never tell the difference; I sounded the same to me.
My elementary school memories are filled with memories of not belonging, of being bewildered and overwhelmed by all the people around me. I simply did not fit into any social scene there was. I didn't understand the meaning of social. I didn't understand the meaning of other people. All I knew was that other people were scary, and I had to protect myself from them.
I sometimes hid in the closet during recess so that I wouldn't have to go outside. Most of the time, though, I went to the library instead. The playground was full of rambunctious kids playing, yelling and loudly laughing. They made no sense to me. It could as well been another universe; it felt like an alien universe. I sometimes sat on the cold concrete pavement, reading a book. Sometimes I'd go talk to the librarian, who was friendly and kind and was one of the few people I felt safe talking to. She would share her pretzels with me, and I would feel special.
That's the other thing I did. I'd walk down the hallways of the school reading a book. Literally reading it as I walked - everywhere. It must have seemed so odd. I could never do it now. But I could then. I felt so vulnerable and unprotected in the hallways, this was my way of shutting the world out so I could be calm enough to function.
I remember only a few teasing incidents from these years, strangely enough. There must have been more to have created such a strong sense of fear and otherness from people - or maybe that was always there, a result of my Asperger's, who knows? I often wonder - but I can only remember a few incidents. I know I wrote in my diary about people who were mean to me or who tried to steal my stuff, but it was nothing compared with what happened to me in later years. So why I was so traumatized, I don't know. But it was just the way I was.
And I didn't realize I was, didn't know I was, obviously couldn't put any words to it - it was the only thing I had ever known, the only way I had ever felt, how could I know it was different? All I knew was the feeling of wanting to be away from people, or at least people my own age (I seemed to get along well with babysitters, parents well enough, and some teachers). I couldn't relate to other kids in the least. I spent my time reading, writing, and playing endless board games with my babysitters. As well as just getting lost in my own head.
Speaking of that, that was another coping mechanism I had. Getting lost in my own head. I developed the most complex and intricate games to play in my head whenever I had any downtime. I remember being on the school bus and playing "Guess how many kids will be at the next stop" or playing the ABC game - I would try to make sentences where each word started with the same letter of the alphabet, starting from Anna Ate An Apple all the way to X, Y and Z. I had a complex scoring and point system based on the number of letters used in each word and the length of each sentence. I had several similar word games I played in my head. I played them constantly whenever I was in a scary, unfamiliar or boring situation; I needed to occupy my thoughts and feelings to numb the pain of the outside world, I think. Funny thing is I don't remember labeling it as such; I don't remember ever thinking "I'm sad," "I'm in pain," or any such thing other than "I'm scared," but even then I didn't really label it as such as much as feel it and act in ways to try to mediate it or get away from it (reading, games in my head, staying away from other kids). I even had an index card taped to my desk in sixth grade. I'd write down my "points" on it. All day I'd keep track and gave myself arbitrary points whenever I did something "right" or had courage in a difficult moment or whatever I felt like. And I'd add the scores of my games for the day. I tried to get to a certain level every day. I was so socially unaware that I didn't even realize it looked weird to have an index card with random numbers on it, taped to your desk; when other kids got curious about it and asked repeated questions, it felt very intrusive and scary.
I had a game I played with a teacher in third grade. I'd hold a kickball to my chest and wrap my arms around it, holding it as tight as I possibly could. He'd try to get it from my arms. I always liked this game until the day when I burst into tears and he stood there looking mortified, not being able to figure out what he did wrong. I think I liked the sensory input of the pressure of holding the ball tight to my chest; and maybe I liked it that no one could ever get it from me. Maybe it made me feel safe. Maybe the day I cried was the day they tried a bit too hard to get it - I don't know. It seems almost like it was a physical acting out of the way my life was going - every day I would try so hard to hold everything in and to hold on to my safety and not let other people get to me. It felt like it took as much energy as holding onto that kickball did - holding on for dear life.
I did well in school academically. I followed directions. I was a good and compliant student. I participated in all mandatory activities, like plays and such. But I did it all from a million miles away. I didn't feel connected to anyone. I just felt this all encompassing sense of, when with adults, "What do I have to do to make this person like me/not be mad at me" and with kids "What do I have to do to make them be nice to me." Or, more often "How soon can I get away from them?"
In sixth grade, a classmate tried to pay me seven dollars not to sit next to him. Or perhaps I paid him seven dollars not to be mean to me? I don't remember. I remember that the amount was seven dollars; I remember that it was an ethically dicey situation; and I remember the teacher broke off the deal before it could be completed, and how mad I was about that, even whole realizing in the back of my mind that it kind of compromised my integrity. I didn't care. I was in survival mode. Paying seven dollars for someone to be nice to me was a small price for the reward, and I had no idea how else to go about the task.
In first grade, I was sitting on a bus, and I asked a seventh or eighth grader in a completely sincere tone, "Do you want to be my friend?" Everyone laughed. I had no sense of social norms; I had no sense of who you were supposed to be friends with (age appropriateness) and HOW you were supposed to go about it. I only knew it was something people wanted and did. I think that is the last time I ever asked anyone that question for many, many years.
I'd write in my diary on the bus on the way home, or at lunchtime or recess. I read an average of 5 books a DAY - those puny Babysitter's Club books that I read over and over again and always carried in my backpack. When I got older, into late elementary school and junior high, I'd go home just so utterly exhausted. I'd walk in the door, go up to my room, and just lay on the floor. For hours. That was all I could do after a day spent at school. Lay on my floor. I couldn't, it seems, even make it to the bed. Or for some reason, the floor was more comforting. I don't know.
I was reasonably happy and bubbly enough at home, if I remember right, so I suppose no one really had reason to suspect all the social problems I was having at school. They knew I didn't have friends, but since I had other pursuits such as reading and writing that I was good at, and did well at school, I suppose they just figured it'd come with time. But it didn't. Well, not until the last two years of high school, and that is a hell of a long time to wait to start figuring out how to make friends. Too long. Too much silence in the meantime. Too scarring.
The thing is, despite all this anxiety and fear that came so naturally, I didn't even realize that I didn't have friends until the start of junior high. The concept had never really occurred to me! It would be like someone asking me "Do you want to go to the moon," that's how relevant having friends seemed. Someone once tried to put me in a book club in fifth grade, thinking I could make friends with similarly intellectual peers. I read the book in the first night. When the club met the next month, I had completely forgotten about it and the other kid hadn't read it. Didn't work so well.
When I entered seventh grade, then, I was just starting to awaken to the realization of what friends were. It was like I was becoming awake and aware to the world for the first time. For the first time, I noticed other kids doing things together. I noticed how kids were always in pairs, talking. I noticed laughing and groups of kids. And I began to think "Wait, why aren't I like that? I want to be in a pair like that, and have someone to do stuff with. How do I get that?" I began to realize what a friend was, and realize I wanted one. But I had NO idea, not the slightest idea, how to go about getting one. Thus ensued three years of depression and eventually suicidal idealation as I for the first time in my life realized how different I was, and had no explanation for it.
Eighth grade was my hell on earth year; it was a year full of intense bullying, both physical and verbal; I won't go into specifics. It was constant and never ending, and mostly done by the same two guys. I was extremely scarred by it and what little of my self esteem I had went out the window. But, still, I never labeled it as wrong; I never told anyone; it never occured to me that it was wrong. I hadn't ever known anything else. I didn't like it, sure, but I didn't know that it was wrong. I didn't know that I deserved more, that it could maybe be stopped. How sad is that? I'd go home and lie on the floor and cry for hours on end. I'd think about suicide, but never seriously, just kind of in the way that someone imagines a vacation they'd like to take but know they never will.
It was a hellish year, but it did end eventually. When ninth grade came around, I was withdrawn, isolated and depressed - and more scared than ever. The bullying had almost completely stopped, but in my mind it hadn't. I was scared of everything. I had a Walkman at that point and listened to the oldies station at every waking moment to drown out other people and my anxiety and fear. It worked, quite well. People actually thought I was happy - when I was listening to my music, I was. When I was around other kids without it, I felt naked and vulnerable and afraid. I spent all my time at home surfing depression and suicide websites. They made me feel not alone. They made me feel understood. They were eventually a really bad habit I had to break.
My anxiety manisfested sophomore year in what would later be labeled as OCD; an obsessive need to control everything, plan everything, and get everything 100% right. Small wonder, considering what had happened to me. I had to have some way of putting order into my world.
The end of sophomore year also, however, gave me my first real friend. The biggest blessing of my life. I'll call her Beth. Beth had a difficult life, too. She was being abused by her parents and had been for most of her life. Something about this must have given her compassion for and a radar for others who were also suffering. I don't remember how the friendship started - I think she had class right after me in the same classroom, and would talk to me when saw me. Just "Hi" or "How are you" or small talk, but it was more than I had ever had. I really appreciated it. After a while, I grew more comfortable with her;
we spent time talking in the hallways after school when they were empty, got to know each other a little. It was just so nice to have someone who cared, someone who recognized me as a person. It made me feel a little more safe.
The first time she came over to my house was excruciating. I liked her and I wanted to be her friend, but I had NO IDEA what to do with her! I couldn't fathom what friends did together. Talking was so much work. We had nothing real in common. I didn't have the interests that most people my age had. I wasn't into popular culture. I remember sitting in my room thinking "It's only been five minutes, but it feels so LONG."
The one thing we had in common though was a love of music. And even though I liked oldies and she liked country, it was okay. We'd listen to each other's music. We could talk about that. Eventually, she got me from being a steadfast oldies fan to a diehard country fan, but that's another story. She would coax me to listen to these songs, promising I'd like them, and I remember being amazed when I actually did. Maybe even more than her, sometimes.
We had a bond originally based on our shared pain. She'd sleep over and we'd stay up late into the night talking about our stories and our pasts. Somehow, we started to heal each other by doing this. Just having the company was something else..... we still to this day have very little in common in terms of interests, but we're both compassionate, caring, intelligent people who somehow get along great even despite the lack of shared interests - I have never really in my life understood why, but I am thankful for it. I have never been able to make friends with someone so "normal" seeming (someone social and interested in the things most people of that age are interested in) since. I am thankful beyond belief that she showed me what it meant to have a friend, she let me feel what it meant to have a friend, she let me experience this thing that in many ways was my saving grace and my social awakening.
The summer before junior year, I went to a sleepaway summer camp for three weeks at Amherst College. The students were al chosen by application process so had a maturity level and intelligence higher than any I'd ever encountered. I begged my mom screaming and crying not to make me go to this camp. I couldn't imagine living with other kids, being alone with other kids, for three weeks. But something amazing happened when I got there. People said hi to me. People talked to me. People actually seemed interested in me. They said I was funny; smart; nice; they wanted to be around me. They LISTENED to me. No one made fun of me. No one even seemed to be in the least mocking me. It was a revelation. Those three weeks were probably the happiest of my life, because I had never felt so included in my life.....before or probably since. I walked to town with other kids; I had conversations with them; sat with them at meals. I didn't even care what we talked about, so happy was I to just be talking to someone.
When I got back to school the next year, I was a changed person. I said hello to every single person I saw in the halls. I talked to kids and teachers alike. I didn't care what I talked about, again, as long as I was talking to people. I made some casual friends who seemed a bit quirky and a bit different from my math class; we hung around in the cafetaria after school and during study hall and talked and even laughed together. I didn't go to people's houses much, but at least I did have some social inclusion in the hallways after school. I got into the habit of going to talk to teachers after school, hang out in the guidance office and talk to the secretary, whoever I could find to engage in conversation. I went home as late as possible. I craved conversation and socialness; it filled me up and killed the lonely black hole in me. I couldn't get enough of it. Someone who is now a good friend of mine said the first time we ever seriously talked, "You sound like you haven't talked to anyone in ten years." She had no idea how right she was. Scary, in fact, how accurate that comment was. I'd say pretty much dead on.
So, in the end, I was able to make a few friends in high school and a few in college. College led to me accepting myself to a much higher degree and becoming much more comfortable with myself; the tolerant and open minded student body, and the fact that no one made fun of me hardly at all in four years, finally erased some of the pain and the fear and made me more far more functional around other people my age. I could finally walk by a group of people and not be scared of them. It was, again, quite a relevation, and quite a welcome one.
But I always struggled with the superficialness of my friendships. They were never as deep as I wanted them to be. I felt like I could never get close to anyone. It frustrated me to no end. It still does, but I'm not surrounded by people my age on a daily basis anymore so I don't have to get as depressed and frustrated and isolated by it as I did when I was in college. Over time I have to some degree accepted the level of socialness I am able to operate at, even if becoming wistful about wanting more at times. And of course the Asperger's diagnosis was a major turning point for me and in learning to accept myself, and find other Aspies who accepted me, and who I saw myself in, and could feel comfortable around. Being able to relate to people for the first time in my life, being able to feel comfortable around people for the first time in my life.
And then MCS, chemical sensitivities, came and that was pretty much the end of thinking about my social problems for two years, because I was so busy being focused on survival, and finding a safe place to live and moving all over the country to do so. Every other problem seemed petty in comparison.
But now, being at a place where I am more stable chemically speaking at least and in a living situation than I have been in years, the social worries are flooding back. And I am realizing and being told that a lot of the way I operate socially is rather maladaptive and can occasionally turn people off. And I am realizing that some of these experiences are causing me to still, twenty years later, be extremely defensive with people, automatically assume the worst, affect my ability to see the true intent in others and to realize when someone wants to help me or at least doesn't hate me. My default reaction to other people is still to believe they hate me unless proven wrong, and that is not really a healthy assumption to act on. I realize that the closeness of my relationships is affected by the fear I still have of people. That's not something I want. I want to figure out how to have healthy, close relationships with people, but damned if I know how. I do the best I can but apparently there are still gaps, large ones, that need to be worked on, and it leaves me scared. Scared because I don't want to lose people after all these years and all the work I've done to be able to be as socially functioning as I am. Scared because I have such a desire for social interaction and I'd really like it if it went well. Scared because I have so many other problems, between MCS and health problems and living situations, that it's just too much to even comprehend dealing with sometimes. Not that I don't want to or won't try to (work on it), but it is a bit scary.
I try to assimilate all the memories I have shared, to make sense of them. What kind of person does all that make me? What does it say about me? What is the root of my problems? Is there some way I can frame these that other people can relate to, that I can maybe find solace out of sharing them in a way that other people can understand? I'm still not sure, but at least it doesn't hurt to write about them quite as much as it used to. I suppose that is one consolation. Although a relativelt small one. These experiences made me stronger internally, but I have to figure out a way to interact with the outside world better.
I find myself in this situation, of trying to figure out MCS, health, how to make my life meaningful, how to solve every day problems, how to manage my anxiety, and then adding my social issues on top of everything is just a bit overwhelming.
I think it would be great if I could find a therapist who could help me work through all this stuff but I don't know if it's possible, and I am slightly afraid of re-experiencing all the emotional pain of social issues that I did in the past while at the same time trying to deal with MCS and everyday survivial issues.
But, if it can be done, I will, because I am tired, so tired, of carrying around all this pain, hurt, anger and resentment. It's a heavy load. It sure would make life easier to be without it. But I know I have to be patient with whatever happens. I have to learn to accept whatever happens. That's the best survival skill a person could ever hope to have. Accept what it is while working in whatever way possible to improve it - but accept it as fully as possible, because wanting is the root of the most profound misery that is, and acceptance at least brings enough calm to function on.
Assembling the Pieces of a Broken Past
It is hard to figure out sometimes, isn't it, what made you the person that you are. You can look at your faults, you can look at the unique issues only you have, and you ask yourself, what went wrong? Or, at least, why am I the person I am today - good and bad combined?
I was never comfortable around other kids. Not for as long as I can remember. My earliest memories revolve around feeling left out, abandoned, picked on and isolated. Not a happy tale, but a true one nevertheless. I can't isolate individual incidents that caused this, because as far as I can remember, it was always this way. It might be perhaps that I was just far too sensitive to everyday childhood teasing and roughness. There is no excuse for bullying, but it is possible that normal childhood behavior can be misinterpreted by one who is overly sensitive and lacks the ability to understand human motives and intentions very well (perhaps due to something like Asperger's.)
All I remember about other kids is being scared of them. I just remember a palpable fearing of fear around them from first grade on. They were so loud and unpredictable; they laughed in my face; they were fast-moving and boisterous. They didn't make sense. And I, I am sure, did not make sense to them either.
If you didn't put your name on your homework in Mrs. Himmler's first grade class, she would make you stay in for reccess. Other kids would steal my worksheets from me before I had the chance to put my name on them. They'd put them in the basket and make my name go on the board. The blackboard listed the names of the kids who had to stay in because they did something wrong. I didn't mind staying in for reccess because I never went out anyway. I did mind the feeling of helplessness and indignition that came from being framed for something I didn't do.
The halls of the elementary school were big and imposing. I'd go to the school store during recess and lunch and hang out there, buying an eraser for 50 cents or a pencil sharpener for a dollar. Perhaps buying things was a tangible reminder that I could have an effect over something; two quarters gave me an eraser that I could touch and feel and hold on to; but all the effort in the world couldn't make another kid or adult listen to me when I wanted to talk. My shyness and fear of others trapped me when I was in school.
I had a relatively severe speech impediment. I'm just remembering that now; I had forgotten. Maybe that was the difference that set me apart. Maybe that's why I had such a hard time getting any one to listen to me or understand me. Maybe that's why I became so sensitized to the looks of disgust and perplexment on the faces of others. Over and over again I got the message: You make no sense. I don't understand what you're saying. I don't understand *you.*
That is, of course, when people were patient enough to try to figure out what I was saying in the first place. A child doesn't know what a speech impediment is; they only know that no one is listening to them, and everyone seems frustrated by them. That can do things to your self image and understanding of yourself that are pretty ingrained at that age.
I got speech therapy in the later grades and was told I improved greatly; but, of course, I could never tell the difference; I sounded the same to me.
My elementary school memories are filled with memories of not belonging, of being bewildered and overwhelmed by all the people around me. I simply did not fit into any social scene there was. I didn't understand the meaning of social. I didn't understand the meaning of other people. All I knew was that other people were scary, and I had to protect myself from them.
I sometimes hid in the closet during recess so that I wouldn't have to go outside. Most of the time, though, I went to the library instead. The playground was full of rambunctious kids playing, yelling and loudly laughing. They made no sense to me. It could as well been another universe; it felt like an alien universe. I sometimes sat on the cold concrete pavement, reading a book. Sometimes I'd go talk to the librarian, who was friendly and kind and was one of the few people I felt safe talking to. She would share her pretzels with me, and I would feel special.
That's the other thing I did. I'd walk down the hallways of the school reading a book. Literally reading it as I walked - everywhere. It must have seemed so odd. I could never do it now. But I could then. I felt so vulnerable and unprotected in the hallways, this was my way of shutting the world out so I could be calm enough to function.
I remember only a few teasing incidents from these years, strangely enough. There must have been more to have created such a strong sense of fear and otherness from people - or maybe that was always there, a result of my Asperger's, who knows? I often wonder - but I can only remember a few incidents. I know I wrote in my diary about people who were mean to me or who tried to steal my stuff, but it was nothing compared with what happened to me in later years. So why I was so traumatized, I don't know. But it was just the way I was.
And I didn't realize I was, didn't know I was, obviously couldn't put any words to it - it was the only thing I had ever known, the only way I had ever felt, how could I know it was different? All I knew was the feeling of wanting to be away from people, or at least people my own age (I seemed to get along well with babysitters, parents well enough, and some teachers). I couldn't relate to other kids in the least. I spent my time reading, writing, and playing endless board games with my babysitters. As well as just getting lost in my own head.
Speaking of that, that was another coping mechanism I had. Getting lost in my own head. I developed the most complex and intricate games to play in my head whenever I had any downtime. I remember being on the school bus and playing "Guess how many kids will be at the next stop" or playing the ABC game - I would try to make sentences where each word started with the same letter of the alphabet, starting from Anna Ate An Apple all the way to X, Y and Z. I had a complex scoring and point system based on the number of letters used in each word and the length of each sentence. I had several similar word games I played in my head. I played them constantly whenever I was in a scary, unfamiliar or boring situation; I needed to occupy my thoughts and feelings to numb the pain of the outside world, I think. Funny thing is I don't remember labeling it as such; I don't remember ever thinking "I'm sad," "I'm in pain," or any such thing other than "I'm scared," but even then I didn't really label it as such as much as feel it and act in ways to try to mediate it or get away from it (reading, games in my head, staying away from other kids). I even had an index card taped to my desk in sixth grade. I'd write down my "points" on it. All day I'd keep track and gave myself arbitrary points whenever I did something "right" or had courage in a difficult moment or whatever I felt like. And I'd add the scores of my games for the day. I tried to get to a certain level every day. I was so socially unaware that I didn't even realize it looked weird to have an index card with random numbers on it, taped to your desk; when other kids got curious about it and asked repeated questions, it felt very intrusive and scary.
I had a game I played with a teacher in third grade. I'd hold a kickball to my chest and wrap my arms around it, holding it as tight as I possibly could. He'd try to get it from my arms. I always liked this game until the day when I burst into tears and he stood there looking mortified, not being able to figure out what he did wrong. I think I liked the sensory input of the pressure of holding the ball tight to my chest; and maybe I liked it that no one could ever get it from me. Maybe it made me feel safe. Maybe the day I cried was the day they tried a bit too hard to get it - I don't know. It seems almost like it was a physical acting out of the way my life was going - every day I would try so hard to hold everything in and to hold on to my safety and not let other people get to me. It felt like it took as much energy as holding onto that kickball did - holding on for dear life.
I did well in school academically. I followed directions. I was a good and compliant student. I participated in all mandatory activities, like plays and such. But I did it all from a million miles away. I didn't feel connected to anyone. I just felt this all encompassing sense of, when with adults, "What do I have to do to make this person like me/not be mad at me" and with kids "What do I have to do to make them be nice to me." Or, more often "How soon can I get away from them?"
In sixth grade, a classmate tried to pay me seven dollars not to sit next to him. Or perhaps I paid him seven dollars not to be mean to me? I don't remember. I remember that the amount was seven dollars; I remember that it was an ethically dicey situation; and I remember the teacher broke off the deal before it could be completed, and how mad I was about that, even whole realizing in the back of my mind that it kind of compromised my integrity. I didn't care. I was in survival mode. Paying seven dollars for someone to be nice to me was a small price for the reward, and I had no idea how else to go about the task.
In first grade, I was sitting on a bus, and I asked a seventh or eighth grader in a completely sincere tone, "Do you want to be my friend?" Everyone laughed. I had no sense of social norms; I had no sense of who you were supposed to be friends with (age appropriateness) and HOW you were supposed to go about it. I only knew it was something people wanted and did. I think that is the last time I ever asked anyone that question for many, many years.
I'd write in my diary on the bus on the way home, or at lunchtime or recess. I read an average of 5 books a DAY - those puny Babysitter's Club books that I read over and over again and always carried in my backpack. When I got older, into late elementary school and junior high, I'd go home just so utterly exhausted. I'd walk in the door, go up to my room, and just lay on the floor. For hours. That was all I could do after a day spent at school. Lay on my floor. I couldn't, it seems, even make it to the bed. Or for some reason, the floor was more comforting. I don't know.
I was reasonably happy and bubbly enough at home, if I remember right, so I suppose no one really had reason to suspect all the social problems I was having at school. They knew I didn't have friends, but since I had other pursuits such as reading and writing that I was good at, and did well at school, I suppose they just figured it'd come with time. But it didn't. Well, not until the last two years of high school, and that is a hell of a long time to wait to start figuring out how to make friends. Too long. Too much silence in the meantime. Too scarring.
The thing is, despite all this anxiety and fear that came so naturally, I didn't even realize that I didn't have friends until the start of junior high. The concept had never really occurred to me! It would be like someone asking me "Do you want to go to the moon," that's how relevant having friends seemed. Someone once tried to put me in a book club in fifth grade, thinking I could make friends with similarly intellectual peers. I read the book in the first night. When the club met the next month, I had completely forgotten about it and the other kid hadn't read it. Didn't work so well.
When I entered seventh grade, then, I was just starting to awaken to the realization of what friends were. It was like I was becoming awake and aware to the world for the first time. For the first time, I noticed other kids doing things together. I noticed how kids were always in pairs, talking. I noticed laughing and groups of kids. And I began to think "Wait, why aren't I like that? I want to be in a pair like that, and have someone to do stuff with. How do I get that?" I began to realize what a friend was, and realize I wanted one. But I had NO idea, not the slightest idea, how to go about getting one. Thus ensued three years of depression and eventually suicidal idealation as I for the first time in my life realized how different I was, and had no explanation for it.
Eighth grade was my hell on earth year; it was a year full of intense bullying, both physical and verbal; I won't go into specifics. It was constant and never ending, and mostly done by the same two guys. I was extremely scarred by it and what little of my self esteem I had went out the window. But, still, I never labeled it as wrong; I never told anyone; it never occured to me that it was wrong. I hadn't ever known anything else. I didn't like it, sure, but I didn't know that it was wrong. I didn't know that I deserved more, that it could maybe be stopped. How sad is that? I'd go home and lie on the floor and cry for hours on end. I'd think about suicide, but never seriously, just kind of in the way that someone imagines a vacation they'd like to take but know they never will.
It was a hellish year, but it did end eventually. When ninth grade came around, I was withdrawn, isolated and depressed - and more scared than ever. The bullying had almost completely stopped, but in my mind it hadn't. I was scared of everything. I had a Walkman at that point and listened to the oldies station at every waking moment to drown out other people and my anxiety and fear. It worked, quite well. People actually thought I was happy - when I was listening to my music, I was. When I was around other kids without it, I felt naked and vulnerable and afraid. I spent all my time at home surfing depression and suicide websites. They made me feel not alone. They made me feel understood. They were eventually a really bad habit I had to break.
My anxiety manisfested sophomore year in what would later be labeled as OCD; an obsessive need to control everything, plan everything, and get everything 100% right. Small wonder, considering what had happened to me. I had to have some way of putting order into my world.
The end of sophomore year also, however, gave me my first real friend. The biggest blessing of my life. I'll call her Beth. Beth had a difficult life, too. She was being abused by her parents and had been for most of her life. Something about this must have given her compassion for and a radar for others who were also suffering. I don't remember how the friendship started - I think she had class right after me in the same classroom, and would talk to me when saw me. Just "Hi" or "How are you" or small talk, but it was more than I had ever had. I really appreciated it. After a while, I grew more comfortable with her;
we spent time talking in the hallways after school when they were empty, got to know each other a little. It was just so nice to have someone who cared, someone who recognized me as a person. It made me feel a little more safe.
The first time she came over to my house was excruciating. I liked her and I wanted to be her friend, but I had NO IDEA what to do with her! I couldn't fathom what friends did together. Talking was so much work. We had nothing real in common. I didn't have the interests that most people my age had. I wasn't into popular culture. I remember sitting in my room thinking "It's only been five minutes, but it feels so LONG."
The one thing we had in common though was a love of music. And even though I liked oldies and she liked country, it was okay. We'd listen to each other's music. We could talk about that. Eventually, she got me from being a steadfast oldies fan to a diehard country fan, but that's another story. She would coax me to listen to these songs, promising I'd like them, and I remember being amazed when I actually did. Maybe even more than her, sometimes.
We had a bond originally based on our shared pain. She'd sleep over and we'd stay up late into the night talking about our stories and our pasts. Somehow, we started to heal each other by doing this. Just having the company was something else..... we still to this day have very little in common in terms of interests, but we're both compassionate, caring, intelligent people who somehow get along great even despite the lack of shared interests - I have never really in my life understood why, but I am thankful for it. I have never been able to make friends with someone so "normal" seeming (someone social and interested in the things most people of that age are interested in) since. I am thankful beyond belief that she showed me what it meant to have a friend, she let me feel what it meant to have a friend, she let me experience this thing that in many ways was my saving grace and my social awakening.
The summer before junior year, I went to a sleepaway summer camp for three weeks at Amherst College. The students were al chosen by application process so had a maturity level and intelligence higher than any I'd ever encountered. I begged my mom screaming and crying not to make me go to this camp. I couldn't imagine living with other kids, being alone with other kids, for three weeks. But something amazing happened when I got there. People said hi to me. People talked to me. People actually seemed interested in me. They said I was funny; smart; nice; they wanted to be around me. They LISTENED to me. No one made fun of me. No one even seemed to be in the least mocking me. It was a revelation. Those three weeks were probably the happiest of my life, because I had never felt so included in my life.....before or probably since. I walked to town with other kids; I had conversations with them; sat with them at meals. I didn't even care what we talked about, so happy was I to just be talking to someone.
When I got back to school the next year, I was a changed person. I said hello to every single person I saw in the halls. I talked to kids and teachers alike. I didn't care what I talked about, again, as long as I was talking to people. I made some casual friends who seemed a bit quirky and a bit different from my math class; we hung around in the cafetaria after school and during study hall and talked and even laughed together. I didn't go to people's houses much, but at least I did have some social inclusion in the hallways after school. I got into the habit of going to talk to teachers after school, hang out in the guidance office and talk to the secretary, whoever I could find to engage in conversation. I went home as late as possible. I craved conversation and socialness; it filled me up and killed the lonely black hole in me. I couldn't get enough of it. Someone who is now a good friend of mine said the first time we ever seriously talked, "You sound like you haven't talked to anyone in ten years." She had no idea how right she was. Scary, in fact, how accurate that comment was. I'd say pretty much dead on.
So, in the end, I was able to make a few friends in high school and a few in college. College led to me accepting myself to a much higher degree and becoming much more comfortable with myself; the tolerant and open minded student body, and the fact that no one made fun of me hardly at all in four years, finally erased some of the pain and the fear and made me more far more functional around other people my age. I could finally walk by a group of people and not be scared of them. It was, again, quite a relevation, and quite a welcome one.
But I always struggled with the superficialness of my friendships. They were never as deep as I wanted them to be. I felt like I could never get close to anyone. It frustrated me to no end. It still does, but I'm not surrounded by people my age on a daily basis anymore so I don't have to get as depressed and frustrated and isolated by it as I did when I was in college. Over time I have to some degree accepted the level of socialness I am able to operate at, even if becoming wistful about wanting more at times. And of course the Asperger's diagnosis was a major turning point for me and in learning to accept myself, and find other Aspies who accepted me, and who I saw myself in, and could feel comfortable around. Being able to relate to people for the first time in my life, being able to feel comfortable around people for the first time in my life.
And then MCS, chemical sensitivities, came and that was pretty much the end of thinking about my social problems for two years, because I was so busy being focused on survival, and finding a safe place to live and moving all over the country to do so. Every other problem seemed petty in comparison.
But now, being at a place where I am more stable chemically speaking at least and in a living situation than I have been in years, the social worries are flooding back. And I am realizing and being told that a lot of the way I operate socially is rather maladaptive and can occasionally turn people off. And I am realizing that some of these experiences are causing me to still, twenty years later, be extremely defensive with people, automatically assume the worst, affect my ability to see the true intent in others and to realize when someone wants to help me or at least doesn't hate me. My default reaction to other people is still to believe they hate me unless proven wrong, and that is not really a healthy assumption to act on. I realize that the closeness of my relationships is affected by the fear I still have of people. That's not something I want. I want to figure out how to have healthy, close relationships with people, but damned if I know how. I do the best I can but apparently there are still gaps, large ones, that need to be worked on, and it leaves me scared. Scared because I don't want to lose people after all these years and all the work I've done to be able to be as socially functioning as I am. Scared because I have such a desire for social interaction and I'd really like it if it went well. Scared because I have so many other problems, between MCS and health problems and living situations, that it's just too much to even comprehend dealing with sometimes. Not that I don't want to or won't try to (work on it), but it is a bit scary.
I try to assimilate all the memories I have shared, to make sense of them. What kind of person does all that make me? What does it say about me? What is the root of my problems? Is there some way I can frame these that other people can relate to, that I can maybe find solace out of sharing them in a way that other people can understand? I'm still not sure, but at least it doesn't hurt to write about them quite as much as it used to. I suppose that is one consolation. Although a relativelt small one. These experiences made me stronger internally, but I have to figure out a way to interact with the outside world better.
I find myself in this situation, of trying to figure out MCS, health, how to make my life meaningful, how to solve every day problems, how to manage my anxiety, and then adding my social issues on top of everything is just a bit overwhelming.
I think it would be great if I could find a therapist who could help me work through all this stuff but I don't know if it's possible, and I am slightly afraid of re-experiencing all the emotional pain of social issues that I did in the past while at the same time trying to deal with MCS and everyday survivial issues.
But, if it can be done, I will, because I am tired, so tired, of carrying around all this pain, hurt, anger and resentment. It's a heavy load. It sure would make life easier to be without it. But I know I have to be patient with whatever happens. I have to learn to accept whatever happens. That's the best survival skill a person could ever hope to have. Accept what it is while working in whatever way possible to improve it - but accept it as fully as possible, because wanting is the root of the most profound misery that is, and acceptance at least brings enough calm to function on.
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