Читать книгу We've Been Here All Along: Autistics Over 35 Speak Out in Poetry and Prose - Rachel Inc. Cohen-Rottenberg - Страница 10

While not officially diagnosed, I believe that I am on the autism spectrum. I also believe that the same is true of my parents.

My father was a semi-famous science fiction and fantasy writer, known to all of his friends as quite eccentric. He was a prolific writer, an even more prolific reader, and admired by all who knew him as highly intelligent. But he was never able to get a college degree, or hold a regular job, or maintain a relationship, or make a good living from his writing. In his later years, despite his wit and sense of humor, he became depressed and irritable.

He talked to himself, as do I.

My mother, though less famous, was similar in many ways. Their short marriage in the early 1960s produced a few written collaborations, a lifelong friendship, and me.

After my parents’ divorce, my mother remarried — a marriage that has survived.

From an early age, I was a thoughtful but peculiar little kid. I spent lunch and recess during first grade digging a hole — the same hole. Other kids joined me at first, and then moved on. I didn’t care. My mastery of spelling, handwriting, math, and sports was poor, though I had good skills in the areas of reading and writing. I was bullied, and in the sixth grade, I remember leaving my physical education class, where I was supposed to be learning football, to lie on the concrete and see how close I could get a seagull to come to me. I was a comic book fan until age 12, when I started reading the books from my mother’s college literature class and became an avid reader.

At the same age, I started quarreling with my parents, using intoxicants, and becoming fascinated with religion, studying seven of them at once. While I grappled with Western and Eastern theologies, my grades remained poor. As is normally the case when grades and intelligence level don’t match, I was blamed for not trying.

The next six years were completely chaotic. Between the ages of twelve and eighteen, I never lived anywhere for more than six months. When I was not bouncing back and forth between my parents, who were totally nomadic, I joined a cult, lived on a commune, wandered all over Belize and Guatemala, and lived with punk rockers in the slums of San Francisco. I attended only about two years of high school. By 17, my drug use had reached the injection stage. At 18, back with my mother and stepfather, I contracted hepatitis C and was kicked out of the house.

What to do with an adult like me? Two possible plans were laid out. I would try to get SSI. If that failed, I would join the Navy. Thankfully, I got SSI.

At that time, my psychologist might have saved my life by seeing that I had a learning disability. She diagnosed me with motor skills dyspraxia (poor motor skills) and a personality disorder. In retrospect, I believe that the personality disorder was not there. But the motor skills dyspraxia definitely was.

I have other quirks that cannot be fully explained by motor skills dyspraxia, dysgraphia (poor handwriting), or dyscalculia (poor math skills). I talk to myself. I become fascinated with certain topics and talk about them at great length. I don’t like to make eye contact, but I also stare at people — so much so that they become angry, and I don’t always know that I am doing it. I repeat what people say. I hold expressions on my face without realizing it, and I am puzzled by the reactions of other people.

I got married, entered college, got divorced, got off intoxicants, joined 12-step programs, and earned a bachelor’s degree in English literature. Then I got another bachelor’s degree in social work and eventually got four certificates. I attended a total of ten years of college, quite in contrast to my two years of high school. But my core strengths and weaknesses remained the same.

In the 1990s, I entered another intensely explorative phase in my life, keeping company with anarchists, pagans, and sado-masochists. Anywhere that people were weird was the place for me. Anywhere that people rejected society’s norms, anywhere that they didn’t start a conversation with “What do you do for a living?” was the place for me. To this day, while I’ve done a lot of volunteer work and casual labor, I’ve never held a “real job” for more than a few months.

At the start of the millennium, however, I found myself lonely and depressed, and I decided that I needed to take my spirituality in a different direction. Buddhism was the next step for me, and I started going on frequent meditation retreats.

In 2003, at the age of 41, I entered a sixty-day silent Vipassana retreat.

I knew that it would be difficult for me, and I knew I had to do it. It was difficult for me because it required that I feel the sensations in my body. My body was the last place I wanted to be.

For the first four weeks, I met regularly with two teachers, and they told me to stick with the physical sensations of my breath. After two breaths, my mind was wandering. After four weeks, the teachers changed, and I met with two other teachers. They said that if I couldn’t stay with my breath, I should try to notice the sensations in other parts of my body. I reported that there were none.

I was telling the truth. Sitting in the chair, I could not feel a thing. Nothing was happening. In the S&M dungeons, I could feel the floggers, the cat of nine tails, the canes, the clamps, the hot wax, the clothes pins, and the “play piercings.” I could feel hot and cold water. I could feel the sensation in my body when I swam in the ocean. I could usually feel it when I had sex. But here? Nothing.

And then, at six weeks, I broke through. I felt the fabric of my clothing moving up and down every time I took a breath. I realized that there was an ocean of sensations in every part of my body. And I realized that it was there constantly.

And then I realized why I had not been able to feel it before.

Trauma. Every part of my body holding memories. Memories of being punched in the stomach, and having my fingers bent backward, and being punched in the head. Some of these things had happened at home. Many of them had happened at the hands of other children — the socially acceptable, ubiquitous, daily torture of children at the hands of other children that is known by the name of “bullying.” These sensations are what I had been trying to feel, and struggling not to feel.

And with the awareness of my own suffering, came compassion. When I realized how much the unkind actions of other people had hurt me, and I felt the pain that they had caused, the idea of deliberately doing the same thing to somebody else became unthinkable.

Near the end of the six weeks, my teachers opened the retreat up for some structured talk, and then for casual conversation. It was on the very last day that I overheard a woman talking to a few other women about her work with autistic children.

“Excuse me,” I said. “This is interesting to me.”

“You know,” she said, “I have been here the whole eight weeks, too. I’ve been watching you, and I’m pretty sure that you have Asperger’s Syndrome.”

“Really?” I said. “Why?”

“For example, when you eat, you like a lot of space around you. You show up for the yoga classes, but you can’t really follow them. During the questions, you say things that, while very creative, are on a different page than other people.”

On the ride home, I pondered her words, and when I arrived at my house, I turned on my computer and Googled “Asperger’s Syndrome.” I got the DSM criteria, and they suited me quite well.

Temple Grandin has said that people on the autism spectrum tend to think in one of three ways. There are the visual thinkers, like herself. There are the pattern thinkers. And then there are the language thinkers. I believe that my parents and I fit into the third category.

I remember visiting my father when he was in the hospital, recovering from a coma. He had already had several strokes that had robbed him of the ability to walk and to regulate his emotions. But his abilities to read, write, and speak articulately remained intact.

He emerged from his coma in a hospital room not knowing where he was, but he recognized me. He asked whether I could bring him something to read. I told him that there was nothing.

I could see the wheels turning in his head, until finally, he said, “You mean in this whole room, there is nothing to read?”

The next time I visited him, I saw that people had brought him copies of the New Yorker and a collection of stories by James Thurber. He could read them, and he could explain why he didn’t believe Puerto Rico should become independent. He could do all of these things, even though he could not always tell whether he were standing up or lying down.

After he died, I went to his room in the nursing home, and there were several letters that had been written, stamped, addressed, and dated the day he died.

The workings of the human brain are mysterious. We are only now beginning to understand them, and our understanding is still very crude.

As I approach my fiftieth year, a new set of difficulties emerge. My stepfather is dying. My income has been cut. Hepatitis C is catching up with me, so my own health is failing. My future is very uncertain.

My Asperger’s has, in some ways, made my life more difficult, making it harder to support myself and harder to develop friendships.

But then there are the gifts:

•The poems and essays that emerge in my mind regularly, uncalled for, as if sent to me directly from the gods.

•The memories of a life lived so differently from anybody I know, or anybody I’ve heard of.

•My piercing ability to see through logical flaws, to take no cliché or catch phrase for truth without examining it thoroughly.

Of course, I must be careful of the arrogance and grandiosity that, along with depression and low self-esteem, have haunted me all my life.

Everybody has areas of strength and areas of weakness. But for those of us on the autism spectrum, the strengths and the weaknesses, the hills and the valleys, are much more pronounced. And so, we must learn to forgive the fates for the areas in which we have difficulties, and to be profoundly grateful for our areas of strength. We must relish our gifts, enjoy them, and try to use them in a way that will benefit others.

May you be well.