I mark the end of the idyll of childhood as the point of my gradual awakening to the reality of my brothers’ situation. For many years I lived in the sunshine of my companionship with them, when we all were children and our lives were full of fun. The first shadow fell when I must have been in 4th grade or so, around 8 years old. There was an increase in tension around the house from both my parents, my mother in particular. The story was that the school in Rhinebeck could no longer keep Tommy because he was becoming destructive. There had been an incident in which he had put his hand through the glass on a door, and cut himself badly. He would need to move into the State Hospital system, specifically to the Metropolitan State Hospital in Waltham, which had an adolescent unit.
My reaction was to see the whole business as an adventure. I compared our family emergency to a chapter in Little Women, “Dark Days,” about Beth’s descent into her fatal illness. Now we had our very own novel, with our very own Dark Days. “I like Dark Days,” I told my mother, “I think they’re fun.” She groaned. On our first visit to what I thought of as Tommy’s new school, I spent some time walking around the grounds, imitating my brother’s gait with my hands up around my ears, until a staff member told me to get back to the car where I was supposed to be waiting for my parents. I was a bit disappointed not to have been taken for a resident. Later, when we were all together, a resident asked if I was a new girl, and my smart-aleck father said, “No, she’s an old girl.” I was pleased by the question, but had no idea what to make of my father’s joke. Soon after we left Tommy there and went home.
At some point during his stay at that hospital, my brother changed. He never was much of a talker, but he did have a couple of things that he came out with regularly. For example, he always loved getting donuts, and would say, “Take a ride in the donut car!” when he wanted us all to go out and get some. He also knew his abc’s, although he had a tendency to rush through them, ending with “w-x-y-zebrudder!” (because there was a picture of a zebra in his book at that letter). There was a particular bowl he liked with a flower pattern, which we called the flower bowl. It became Tommy’s bowl. We would laugh together, he would sing, he would throw his arm around me when we sat side by side.
The person who replaced that Tommy was far, far away, barely verbal, and unhappy. One Sunday a month my parents and I would drive from Pittsfield to Waltham and visit him, drive around with him for awhile, and then return him to the hospital. On one such occasion we were told that he was in the medical wing. Apparently another resident had stuffed some burning newspapers down his shirt, and he was being treated for second and third degree burns. Lord only knows how the other person got his hands on matches, but then again the state hospital wasn’t known for being a great place to be. We went into his room and saw him there, in bed, wrapped in bandages. He said, “Stay in bed,” demonstrating that he had understood his instructions, and “Drink water.” I felt nothing. The next day I was back in my own world, in school. As I sat in homeroom I thought about how odd it was that the day before I had been witness to my brother in his suffering, and now the world was going on just as it always had been, with no one else the wiser.
(Many years later, when I had taken over from my father as Tommy’s guardian, I got some paperwork from his then-current residential program and read his history. I had never seen it before, specifically the fact that during his stay in Waltham he had received approximately 50 insulin induced coma treatments. My blood ran cold. As I began to consider what this meant, I speculated that Tommy lost much of his functioning as a result of that treatment. Is this true? I honestly don’t know, but it’s as reasonable a story as any other.)
Eventually, Tommy would be moved again to the State Hospital in Northampton, Massachusetts. The day of the move, I rode in the back seat with him. As we sped along the Massachusetts Turnpike he suddenly became agitated, grabbed my right hand, and bit me, hard. The scar lasted for many years. The people at Northampton eventually “solved” his biting problem by filing his teeth. I don’t think my parents knew this at the time, although they had received reports about biting. We continued to visit him every month. Usually my father would go alone, because my mother just couldn’t stand it, and sometimes I would go with him. I did not know how or what to feel. My emotions had gone numb. I suppose I would just as soon not have gone at all.
Mark in the meantime moved to a school in Berkshire County, nearer to where we lived. His visits home continued at regular intervals, as well as our visits to him. I continued to think of him as my buddy. We made a game of finishing each other’s words, even words of only one syllable. A favorite pastime was the what-would-happen-if-I game (e.g.: “What would happen if I refused to go back to school and screeched really loud and ran out the door and, and, and— threatened to jump out of the car?”). I would come up with ways the adults would take charge, and punishments, and so on, while he would come back with more outrageous responses, until there was nowhere left to go with it, at which point I’d answer, “turn into a great big—“ and he’d finish, “rock!”, thus ending the game.
Eventually, these games became not so much something we did together as something I did to amuse him. My childhood was over.
Light Getting In 