Somebody Somewhere (43 page)

Y
ou can define a whole life in terms of what you do. You can also define a whole life in terms of a range of things that happen because of you or to you. I define a whole life in terms of my inner experience of the things that happen because of me or to me. My grasp on a direct, in-context, in-company, inner experience of whole life would probably always be transient, but my emotions and my thoughts and the connections between the two would be a consistent thread to hold it all together. My talents and the knowledge I accumulated would always be my playthings in a void of fluctuating inner-meaning silence and inner-meaning darkness. My skills and knowledge would be the bridges by which I could make connections and live a full life in spite of a hidden disability.

I
experienced having an outer-body sense by seeing and hearing where my body was. My inner-body sense, like everything else, was mostly mono.

If I touched my leg I would feel it on my hand or on my leg but not both at the same time. My perception of a whole body was in bits. I was an arm or a leg or a nose. Sometimes one part would be very much there but the bit it was joined to felt as wooden as a table leg and just as dead. The only difference was the texture and the temperature.

This was one of the main reasons I didn't touch myself for enjoyment and had little interest in being touched in any unexpected,
consuming, or whole way. There was simply no point. It only made me face again and again the realization of my own deadness and partial physical self and the shameful inadequacy that goes with it.

I had worked on the role of touch until I could accept it as a role and a topic. What was left was the experience of it and “want.”

I had worked on reducing the hypersensitivity of my hands, back, and neck (success at this was elusive because during total shutdown they were all dead, even though they could be irritatingly sharp during overload). I worked on getting some inner sensitivity in my legs, arms, face, and torso, which I often felt no connection to. I brushed my body, despite tears, despite deadness, and despite the sad realization it belonged to me in spite of the feeling that it didn't.

Slowly I had come to tell temperature better than before. I now pulled away sometimes under the hot tap and I felt a tingling sensation, which was called “being burned,” when I spilled boiling water upon myself. I could bear to hug myself and had begun to initiate basic touch with certain special people. I was getting a better awareness of when I needed to go to the toilet and could go at full instead of bursting.

W
ith Ian my emotions were reaching five on a scale of one to five. Both of us were afraid yet both of us knew we would be safe with each other, despite the inner battles and compulsions to run that came with fear of losing control in the face of big emotions.

“Something awful is happening,” I said to Ian, “I have a feeling I don't understand. I want to walk.” Ian went to get his coat. “Is it something you ate? Are you upset? Do you need to eat?” he asked. “I don't know what this is. I've never had this feeling. It's scaring me,” I replied.

It was overwhelming. My sense of hearing became intense. My hand was placed randomly upon my leg. Suddenly I became aware of inner feeling in both my hand and my leg at the same time. “I can
feel my leg!” I shouted in fear. “I can feel my hand
and
my leg!” I was afraid and shaking. Ian was smiling. His eyes filled with tears. He was “happy-sad.”

I moved my hand to my arm and fearfully whispered, “I've got an arm.” I felt it not on my hand from the outside, as usual, but from the inside. My arm had felt it from the inside. “Arm” was more than a texture; it was an inner sense.

It was foreign, and the foreignness was frightening. I felt like an alien suddenly acquiring humanness. I was a stranger in the vehicle that carried me about but which was only now telling me it was here, it was real, it was mine, and it was part of me.

I felt my hand, then my forearm, then my upper arm. “Is this frightening?” I asked Ian. “No, it's not frightening,” he reassured me gently. My hand moved to my body and traced a line down to my leg and along its length to my foot. I was crying uncontrollably. I had never felt so wholly alive. Repulsion and anger now faced me as fear, and fear stood back-to-back with happiness, who was ready to celebrate.

My hands went up to my face. My face was there from the inside. My body was more than just a series of textures that my hands knew, an image my eyes knew, a series of sounds my ears knew, and a pattern of movements. I cried out in a desperate whisper, “Oh my God, I've got a body.”

Ian was hugging himself, smiling through his own silent tears on the other side of the room. “Am I safe?” I asked. “Yes, you are safe,” said Ian. “I'm afraid to walk,” I said to him. “I don't want to move because it might all change.” Olivier's words echoed in my mind: “I lost my legs today.” I was getting mine back. I moved one leg and felt its weight. I stood on it. My balance was shaky. I was totally overwhelmed.

I walked across the floor like someone trying out new legs. I felt the distance between my shoulders and my feet. I knew how big I was, enclosed within the space of my own whole body.

“Oh my God, I'm so short!” I squealed in a surprised whisper. “I am not big at all!” I had always had the impression that I was as big as whatever person I was with, and, at five feet two inches tall, most
of them were bigger than I actually was. If I was with short people, I assumed I must be a short person. If I was with tall people, I assumed I must be a tall person. In the absence of an inner body sense, they had been my mirrors, my external “map.”

It was one thing to have an idea in theory of your own size, but another to feel the subjective experience of it. I had always known my height and size and knew in theory that these were socially defined as short and skinny, but I had nothing other than the visual comparison to test it by. Anorexics often feel fat. They have a distorted body sense. Beyond my vision and reflection I had no body sense at all. Up until now other people had provided this when a mirror was not around.

I was so happy. “You don't know how good this feels,” I said to Ian. It was the greatest tangible security of self-ownership I had ever known. “Is this what other people have?” I asked. Ian, like Olivier, had “lost” his legs occasionally and had self-other difficulties but generally his inner body sense was far more intact than mine. “Yes,” said Ian, “this is what other people have.” “It's so beautiful,” I said.

I had wondered what I wanted a body for. Now I knew. There was no greater feeling of self-security. This was the first security a baby knows long before it knows its mother. This was the first security in life, which had been missing. Connection with my body was the missing bridge across the impassable gorge that had stood between me and being touched with feelings.

“Will it go again?” I asked Ian. “If it does,” said Ian, “it will come back again, like everything else.”

“H
ow long have we known each other?” I asked. “Five months,” said Ian, sitting across from me on the floor eating Chinese food. “Are you sick of knowing me yet?” I asked, between mouthfuls of noodles. “No,” replied Ian, “am I boring yet?” “No,” I replied.

In five months our fax machines had gotten to know each other well and we had gotten to know each other better.

It had been three years since I'd written
Nobody Nowhere
and Ian felt he had lived six hundred years since he'd met me and unburied himself. He and I were now able to be ourselves in each other's company in an ongoing “specialship,” a place of belonging.

Ian,

Hi. I was so glad you called just to say hi. But I could not really show it. It was a battle to show it. Sometimes I wish you could be here or me there to help hold us each away from the inner monster that makes us be what we are not.

I am close to you. I feel safe with you. You are the person I feel a “belonging with.” You are the person with whom I have a “specialship.”

The safer and happier I feel, the more it will make me want to run and escape. Do you realize this? Do you care enough, have patience enough and understanding enough, to support my fight against this stupid compulsion? If you do not, it is okay. But it would just be too hard if you didn't understand.

Today I was running away. I wanted only to reach out. Could you ask me, “What does Donna want?” Then I could be free. I could tell you what I want even if my actions did the opposite. I could tell you that I wanted to reach out but that my actions would not let me…that my brain wouldn't let me control my actions.

When autism wins like this (or you mistake autism's reaction for being one of my true ones), I feel so trapped inside that I want to give up on the whole world. I feel scared you won't be able to see me apart from my autism. This would mean I am alone…you would have abandoned me to this inner monster.

It is hard for you…sometimes the monster robs you of your friend. Sometimes it hides your friend from you. Sometimes I am hanging from a cliff and you have my hand and it makes it too hard for you to hold on to me. I don't know if you have the strength to help me fight it for as long as I will need to. I believe so, because in fighting for me you are fighting and proving the same things to the monster within yourself. You would also need understanding. You have this. I am sure of that. But this monster outruns us sometimes. It is bigger than us sometimes. This is why sometimes it convinces me that I should give up and that no one can help me.

When I am driven to give up on people it is not what I want.
I would not be happy that way. I would merely not have to fight so hard anymore. But it
is
worth fighting. I have seen such happiness with you that I know it is worth it…but the tiredness…sometimes it exhausts me…it is so hard to fight and outrun and outsmart an enormous, overwhelming, invisible monster sometimes.

I am not sorry. I couldn't help how things went. You are not sorry. You couldn't help it either. Things will maybe always be hard for us but never in the same way as they have been with other people. I will not run from you, leave or replace you, because I am fighting for me. This life does not belong to autism, it belongs to me. Autism is not on the side of “simply be” any more than “the world” is, but I am on the side of “simply be” and so are you and I will fight for that right or die trying.

Your friend always…

      Donna