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.

3 comments:

Life's Journey said...

Sounds like we have a ton of similar situations throughout life. By the way, I totally understand all of what you said. I get it, because it seems like I was almost in that same exact boat, right down to reading the babysitter's book club. :) Life is really confusing isn't it. You never really know how you fit in, but somehow you more or less blend in and would rather hope that your just altogether invisible. Atleast thats kind of how it was for me. Hope your well. Happy Days! Thanks for sharing your insights.

Anonymous said...

I’m so sorry it’s taken me so long to finally find a block of time to sit and (hopefully) thoughtfully read all that you’ve so generously shared of yourself here. It breaks my heart to hear of the overwhelming burden that you’ve carried for so long. I can only imagine the pain that you describe through school and how hard it must have been to feel so alone. I desperately wish there had been some understanding, some support, some guidance to help you navigate a very confusing and even hostile world.

I’m so glad that you did ultimately find a friend, and then more and more as time went by. - that you had the strength to let people into your world and your heart – not easy things to do, especially when one’s been isolated for a long time. I give you a lot of credit for reaching out, making connections. It’s tough stuff to do.

I am blown away by the game that you created for yourself to get through the day when you were younger. It’s hard stuff to read, but at the same time I just kept thinking, ‘Damn, this girl is a survivor. She created and executed an entire construct just to get through a day.’ No wonder you were exhausted when you got home. I can only imagine that kind of CONSTANT and EXORBINANT expenditure of energy. I was exhausted just reading it.

And so, when you pose the question ..

What kind of person does all that make me? What does it say about me?

My answer is .. the strong kind. The kind who knows what she wants and is motivated to figure out how to get there. The kind who has an awful lot to offer to those who can appreciate her. The kind who will use a diagnosis to her benefit – to help her understand some of what she’s had to endure and lead her to find some help achieving her goals as she moves forward.

I do hope you can find a therapist who can help. I can’t tell you how important I think it is to find that support – to have someone with some experience and knowledge who can help create a roadmap toward the future you want to (and can!) create.

Thanks again for sharing all of this. It is never easy to lay it all out there.

Allison said...

Have you ever considered writing a book...a memoir perhaps. I would read it. It's just that the way you write and the things you write about are so interesting (if that's the right word).

I completely get it. The loneliness, depression, isolation, friendlessness...and by the way, your wording about suicide describe exactly what I have been trying to say for a long time. Thanks.
Just a thought - for all of us who struggle with words - you could write one heck of a book.