The Man in the Chair

Our house had a ramp. None of my friends' houses had a ramp. We had extra-wide doorways and hallways. (In fact, when I was looking at this house to buy it--it has a very similar layout to my childhood home--this thought came to me unbidden: The hallway is not wide enough for a wheelchair to pass through.)

Our car had hand controls for the brake and gas pedals too. We drove all the way down to some weird place called City Island where they were put in--a custom job. When my step-father, the man in the wheelchair, first got out of the VA Hospital in the Bronx, a chamber of horrors my mother had dragged me through at much too tender an age, I am probably still at too tender an age for such sights and smells of suffering, he stayed close to friends he had met there, and so had connections like this shop in City Island where hand controls for the cars of the disabled were made. Because this was the early 1960s, and handicapped awareness was not a concept. Sensitivity to the needs of the disabled was not an ethic. Not. No special parking spaces or ramps or bathrooms or doors--nothing. Nada. Not a thing. No.

He was very adept at bumping up and down curbs. He had a way of tilting the chair back on 2 wheels to get down them. He could even bounce down 2 or 3 steps if he had to. He got up curbs with someone giving him a push from the back. If the curb was low enough, he could simply tilt the chair back up onto the curb and then bull his way with the strength of his arms pushing the wheels up and over it. If there was no one with him to help him, he would sit and wait for someone to come by who looked able to help. Then he would call out, "Hey chief, hey chief--can you give me a hand here." Not a question, really, but a statement. To say it was a massively humbling experience is to understate an obvious truth. He was disabled but he was fatally proud. You could see it in his face. I often thought in another lifetime, he could have been a king. He was larger than life, even in his injury. And people liked him, and they liked the fact they had a friend, like him. It made them look good that they were friends with the disabled guy. They made a special space for him at the high school basketball games, and mostly all of my friends simply liked him a lot.

I still remember a family vacation we took with my Aunt and her family. There was a particular restaurant they wanted to eat in one night. But it had steps, a lot of steps. Arrangements were made for my uncle and some men from the restaurant to carry him up the back steps and bring him in through the kitchen. He was not a small man, either. If he could have stood, he would have been well over 6 feet. He had a massive chest and big forearms, both from all the years of pushing the chair, but also from years of milking cows on the farm where he grew up. Only the lower half of his body was small--the long legs with no muscle anymore and his feet in useless shoes (the final pair of shoes he wore were brown suede with laces that came up over his ankles and he called them his 'fruit boots'). The color of his legs and feet were bad; their circulation was compromised. Eventually he got pressure sores on his butt, despite his sheepskin seat and special pillows, that left him bed-ridden most of the day, tilted to the side with his ass in the air. That was in the last years though, before he died of a cerebral hemorrhage at 40, the same way both his parents died. Heredity and a bad accident, he had such a burden to carry in life. It always made me wonder about karma, and the effects of past lifetimes. Was it simply a random thing, the tragic pattern of his life? My mind always looked for reasons, for meaning behind the suffering. Still does, and I have come to conclude that sometimes there is meaning, and sometimes, there just isn't.

He did not always carry the burden of his life gracefully or well, but how many people would? He drank too much, he always drank too much, it was a drunken driving accident that broke his back and left him paralyzed from the waist down. The other guy in the car, his friend, walked away from the crash (and later died an old alcoholic in a nursing home, practically abandoned by the family he had hurt so many times with his drinking. But he could be so funny and so gentle too, he taught me to swim, at age 10, when I had despaired of ever learning and could not relax in the water-- he was the one who taught a little bundle of nerves like me to relax in the water). My step-father, with a grievous back injury, was carried away from the accident scene in a blanket. Who knew about back boards for back injuries in that volunteer rescue squad in a poor rural county in the late 1950's?

His paraplegic friends all drank too much too. A lot of my childhood was spent in their company, them and their wives all at someone's house--often ours, and I was the only kid, these guys were functionally impotent--for the weekend, drinking and smoking and snacking and playing cards for pennies. My mother would cook up a big pot of chili or spaghetti and meatballs and Italian sausage for supper. I would sit at the table most of the day and listen to their dirty talk and wise ass humor. Much of their humor was dark and often directed at themselves, and I learned a lot of dark truths and dark survival skills from it. They called themselves 'gimps'. They were a fraternity of people the rest of the world preferred not to see, or stared at all too rudely. I got used to it as a small child, people staring at him like he was some freak sitting there in his chair, instead of a big farm boy who had gotten into a bad accident. They tended to see the chair and not the person. I got used to it. I knew the person, and after awhile, I never saw the chair. I didn't see any of the chairs anymore, just as I did not see how the one friend who had been paralyzed from his shoulder blades down in a diving accident could not cut his own food, or the amputated stumps of the friends of later years, men who came back from Vietnam missing limbs. I remember one guy, a double amputee (both legs), never used his chair in private. When he wanted to leave the card game to go to the john, he'd hop down onto the floor and locomote along somehow on his hands. What I remember thinking was how strong he was.

When these guys in the chairs got up in the morning, they'd wear a towel over their legs. They were naked underneath them. They did not wear boxers or briefs--getting into pants was difficult enough. My step-father had several beach towels just for this morning time. One friend of theirs wore a wash cloth. I became quite adept at not seeing him from the waist down. And the smells I learned to ignore--the morning smell of an unwashed alcoholic paraplegic is something that could be used as a torture technique.

Every couple of weeks, he would monopolize the bathroom on a Saturday for hours, washing and doing whatever he did in there. Lots of splashing sounds. Tricky for a small kid who just needed to pee. I would wait and wait and wait until he got to some point in his ablutions that he could take a break and let me use the bathroom. I would sit in there holding my breath and not looking at the stuff scattered all around the sink.

These guys were permanently catheterized. They had a bag on their legs where the urine trickled in all day. They called it a duck. Many times on road trips, we would pull over by the side of the road (because there was no public bathroom anywhere his chair would fit inside) and he would slide across the front bench seat to the passenger side and stick out his leg, pull up his pants a bit, and unclamp the clip on the tube of the duck and let the dark, bad smelling urine gush out onto the roadside. Something else I learned to ignore. Suffice it to say, the people I knew with spinal cord injuries did not have healthy bodies!

These guys played wheelchair basketball though. They participated in handicapped games. We went to those every summer. There were races in wheelchairs and swimming. My step-father was actually on a wheelchair basketball team (he had been a small town basketball star in high school) that competed in the Pan-American Games. He went to Cuba with the American team back in the late 50's, before it was illegal to travel there.

And, yeah, he used the strength of his big scary arms to beat me and the dog, sometimes brutally. He stuck his big, rough fingers in places on my body where they did not belong. He humiliated and shamed me. He also helped me with my math homework. When I was very small, I would stand on the foot pedals of his chair when we were out shopping, and I would ride along there. He taught me to tie my shoes as we sat in the car waiting for my mother at some store. Except he was a lefty, and taught me left-handed, and it took me years to figure out why my bows never looked as nice as the other kids. When I played field hockey in high school, he came to my games. He could not get across the grass to the field, but he parked as close as he could in the parking lot and watched with binoculars.

Besides the scars of abuse, living with him gave me a compassion that runs deep. It gave me eyes that tend to see the inner person first and a mind that does not judge people by their appearances (though I have learned with age that, in some cases, judging by appearances can be precisely the right thing to do). It gave me the ability to have extended conversations with almost anyone. I look in their eyes and talk with the spirit residing in there. I am proud that I am able to do this. And the fact of that gift, that ability, almost brings me to a place where I can forgive him the hurt he did me.

Almost.

Until next time, I remain, your friend, Rozenkraai