Somebody Somewhere (14 page)

May 1991

Dr. Marek,

…I feel I am coming a long way here. It doesn't sound like much. But these are all things I've experienced in the last year (since writing the book and finding out what autism is). Sometimes I felt bad to know. It has also helped me a lot because now I can distinguish between my personality and my difficulties. I think it is this sharp contrast that makes me try so hard. I think there is hope here. The more I get out of the difficulties that confine me, the more people will respond to me as I am rather than as I appear (one of the fallouts in class was because someone felt it was my
personality
that I
wanted
to be different and think differently from others all the time and that I didn't want to be part of things)…

Thanks,

      Donna.

“Have you told anyone in the course about your autism?” asked Dr. Marek, sitting across the room from me. I hadn't seen any point.

Throughout my life I had tried to explain these things. Meaning-deaf I had hit my ears and shouted, “I can't hear you!” I had asked constantly, “Am I making sense? I can't tell what I am saying.”

When the meaning fell out of everything I saw, I had said, “Help me, I'm stuck, I can't wake up.” People just thought I was crazy.

Feeling-dead, Carol and Willie had told people they could do what they liked to me because I was dead anyway. Carol had hit herself and laughed, saying, “Can't feel it.” Hypersensitive, I had also told people touch hurt. “Rubbish,” they had said. “Touch cannot hurt you.”

Explain things? They wouldn't understand. Those who knew anything of autism would conjure up images of low-functioning, mute people with minimal or no living skills who had a repertoire of repetitive movements they had not learned to control or to be “motivated” to limit, channel, or hide.

June 1991

Dr. Marek,

…In the part-time job I had at my father's workplace, I had been called a “smart kind of crazy-backward.” I explained to one of the people there about autism (he had known me for years and had seen me tearing about my father's workplace). He told the others (who also knew me for a long time and had heard of or experienced my behavior), and I got told off for telling them because I had made my father ashamed by their knowing I was autistic.

I don't get it. Why would he be happier that people thought of me as crazy or backward but ashamed that they knew I was autistic (which means I am not very crazy at all, intelligent in many ways, and not necessarily mentally retarded)?

It confuses me that you've suggested I explain my autism to people if it will solve difficulties because it is not a one-hundred-percent, money-back-guaranteed answer. I guess you never said it was.

One thing is that people think all autistic people cannot talk. Because I can talk well, most people can't see why things can stress me out or confuse me so much or why I can speak so well but understand not nearly so well…

      …Donna.

I was obviously clever enough to have completed an undergraduate degree, supported myself, lived independently, and developed the
vocabulary of a dictionary (probably because I spent years reading and memorizing them instead of reading “proper” books). No, there was no point in explaining things.

A
s part of the teacher's course, we had three classes that threatened physical contact: dance, drama, and physical education. They were free to mess with my mind and even to try to tackle my emotions, but physical contact with a me intact was asking for too much.

In the drama class and dance class, I eventually told the lecturers that I might have to step out if there was physical contact I didn't feel able to cope with and I explained why. Surprisingly they were wonderfully understanding.

Physical education had always been a nightmare. I never understood the instructions for games or the social rules about sport and competition, and the concept of enjoyment in involvement with so many moving bodies seemed totally illogical. It made people seem like sadomasochists.

I stood back trying to observe the game. I was trying to extract the rules and expectations. “Go on Donna, get in there,” said the Phys Ed lecturer. “Join in.” “I'm trying to work out the rules,” I explained. “I already explained them,” she said sharply, “you weren't listening.” She was sharp as tacks and stood for every other sharp as tacks P.E teacher I had ever had who gave me hell. The walls were going up.

She couldn't seem to understand that I had got zilch from her verbal instructions. I needed to analyze the scene in order to know what to do and feel safe. All she could see was a clever honors student enrolled in a postgraduate teaching course. Of course she assumed I'd have understood if I had listened.

Swimming was on the agenda. Everyone changed into bathing suits. I tried to work out who was who. They all looked different now with very little clothing on. The images of my classmates were now a mass of black, white, and brindle bodies merging into a picture of
foreignness. My brain was just catching up with the soggy feeling of water under my feet, the breeze on my exposed back, the disorderly rows of colorful towels and bags, and the chlorine smell as steam rose from the heated pool.

“Everyone into the pool,” ordered the lecturer. Everyone jumped in. I stood chest-high in water, wide-eyed, stunned, and disoriented.

A few people splashed each other. Water hit me. I tried to make sense of what the experience might mean to the people doing it as the lecturer spoke. I lost the meaning of her words but worked out that the students splashed because they thought it was fun. I tried to stay calm.

“Everyone hold hands and make a circle,” ordered the lecturer. My guts twisted. Something soggy reached out gropingly for my hand. I pulled instinctively away from it. “Donna,” said the voice belonging to the body next to me. Ah, the hair…it's Helen, I thought, remembering the long curly hair I had been tempted to grab and shake when I had first seen it in front of me. Helen had friendly, smiling eyes, a gentle and fairly predictable voice, and a happy smile, and had always been understanding.

I looked at Helen's hand and at all the others holding hands. I took it, glad to know it belonged to someone I knew rather than one of these moving blobs around us.

Someone took my other hand. I forgot that I owned it. Fear and vomit began to rise in my throat. My entire body began to shake in the grip of panic. Tears came to my eyes and poured down my face as my nose began to run. I tried to remain attentive as best I could when falling to pieces. “It's okay, it's okay,” I said to myself and broke my hand free from the stranger. I tapped myself to check that I was there. “Are you okay?” asked the lecturer quietly. I looked for a moment and asked myself the words. I nodded.

“Right, move around in a circle,” ordered the lecturer. Everyone began to move. The bodies, the splashing, the proximity, and the hands were too much. I had to break away. I broke hands with the others. I was in a deeper part of the pool now and had to tread water. It was okay. I could swim just fine.

Suddenly something grabbed my arm. “Are you okay?” came
verbal garble. I pulled away sharply and hands grabbed my other arm. First one and then several hands were upon me. I was trapped. Bodies began to enclose me like fish circling in on bait. Hands were grabbing me and I threw myself backward underwater to get away from them. I pulled arms off me as though they were leeches and kicked out wildly. My head tilted backward under the water.

I was a terrified, thrashing, kicking, drowning blob. Managing to distance myself from the others, I came to the surface gasping. My heart was pounding and like a wild animal I glared at the beasts who had attacked me. The lecturer crouched by the edge of the pool. “It's all right,” she said to the bodies. “Move away from her.” The faces looked as stunned as mine. The lecturer came over to where I was gasping and shaking at the edge of the pool. Tears and snot streamed down my face. I was ashamed.

“Are you okay?” she asked, her voice firm and controlled. I drew upon her strength. “Yes,” I nodded. “Do you want to get out?” she asked. I looked at the faces staring at me like some freak in a cage. There was no way this horse was going to throw me, or I knew I couldn't face another class and would have to drop out. “No,” I said decidedly, “I'll rejoin the group.” I edged my way slowly back to the people who had almost drowned me through their well-intentioned “the world” efforts to help.

Willie hadn't come to save or protect me or cut me off from body and emotion. Carol hadn't come to cheer me up or make me laugh and pretend it was some big joke. I was sharply aware of my vulnerability. I was on my own. A sense of danger was born.

I felt I needed someone who understood me but my two best friends, Carol and Willie, had died and I had not even been to the funeral. There were no bodies to bury. The realization left a heavy impression. I went home and spoke to the typewriter.

June 1991

Dr. Marek,

…I find it difficult to talk about the loss of the characters, yet I need to recognize the reality and to say goodbye. It is like my best friends slowly died and I couldn't say anything to anyone, so
all the abandonment just sits there. Yet this time I abandoned them. I didn't reject them, they disintegrated (or did they reintegrate?).

I accepted their abilities and turned my attachment to Travel Dog and Orsi Bear as a bridge between what was once “my world” and the external world outside of my own body. From the pool incident I now know for sure that as entities Willie and Carol no longer exist. They are like memories of puppets that once had an existence of their own, and now there is just a me. But they held my world together and now I'm just shaking a lot in “the world.”

There is a place for me in “the world” and I will eventually learn to give up some of my special things and special ways as I learn to value new things to replace them. I need some help to stay aware of the new things because my fear and aloneness are not helping and I'd just be running to a big, black nothing now. If we talk about the new things they will become foreground things and I may grasp them better as things to latch on to for security in “the world.”

Regards,

      Donna.

There were two more swimming sessions to go and I dreaded them. In the absence of “my world” strategies, I needed some “the world” strategies by which to help them help me. I couldn't “disappear.” I couldn't break into characters. I knew one thing. If I was going to survive these people, they were going to have to know how not to help me.

The lecturer let me address the class five minutes before the next session. I explained that I had trouble with touch and proximity and that I could swim just fine. I explained that if they wanted to not drown me then they should move away from me if I appeared to be in distress. I never mentioned autism.

Back in the pool for the next session, it seemed bad but not so bad as the last time. Everyone seemed to have glossed over what had happened the week before. I felt relieved.

One of the women in the course swam up to me. “I don't know why you had to put on a big performance,” she said cuttingly. “You can swim,” she scoffed in disgust.