Sunday, December 20, 2009
Monday, December 14, 2009
Sunday, December 6, 2009
On Thursday of this week, I'll be 55 years old. It's time to give voice to this:
To give you an idea of what the early years of my life were like, I had two stuffed animals whose names were Needles and Ether.
People often ask me why I run a lot and bicycle a lot and compete in Ironman and other things like that and the answer I give is always trite. For years I’ve been asked why I’ve worked with challenged kids, when I could make more money doing something else. The real reasons are much deeper, both light and dark.
I am haunted by the faces of boys who would never run and bike or hear their name at a finish line. Boys who had no one to help.
Keeping it simple, suffice it to say I was born with what used to be called birth defects. Like all medical conditions there are big Latin rooted words that tell you exactly what the problem was. By the time of my last surgery at age eleven I knew a lot more about medicine and what could go wrong with the human body than most adults do now.
A series of surgeries starting at age two would put everything right.
There isn’t much I remember about those early trips to the hospital but of the later ones at age nine, ten and eleven, I remember every detail.
At Kernan’s Children’s Hospital there was a ward of across from the nurses station where the boys would be. We were boys of all ages, some younger than eight, others sixteen or older. Twelve or more of us.
It was a place where we were repaired for in all cases, in one way or another, we were broken. Physically, we were not normal. They did a lot of reconstructive surgery there.
When I went back for my last trip in the summer of 1966 there were other boys there I recognized from previous trips. We were brothers of a special darkness. I won’t say I remembered their faces, because some of them had no faces. Others, no legs. A few, no arms. Some laid on their stomachs all day in hard body casts. Quite a few had multiple problems capped off by faces better left to Picasso.
Usually it would go like this: Mom and Dad would make the long drive from Cumberland to Baltimore on a Saturday. I’d have surgery on a Monday and after making sure I was fine they would go home. The next weekend they would return to pick me up, the back seat made into a big bed because I wouldn’t be able to stand or sit for any length of time. I’d spend some weeks in a bed in our TV room reading comic books with friends. “Classics Illustrated” were a favorite but only because I wasn’t allowed to see other kinds.
On this trip, I arrived at the hospital and after my parents left for the evening I would join the other boys and we would talk and watch TV and laugh and play games and just be, well...broken. If you couldn’t walk, others would get things for you. If you couldn’t feed yourself we would take turns doing it. It was no problem to dump out a urinal or empty a bed pan. If you could walk, you wheeled the legless around the floor. Some of the boys were always alone. During visiting hours no one came to see them and they kept to themselves.
Having seen each other before and being friendly I spent time reading with The Boy with No Face. There really is no other way to explain him. There was a gaping hole in the front of his head, a few teeth, and two eyes in places eyes should never be. He wrote since he couldn’t talk and we’d read comics and laugh at each other, his laugh being more of a flexing of the throat that made a “Gaa” sound. He read by holding comic books up by the side of his head. Another lad, Legless, brings us drinks from the nurses station and shares his comic books.
Monday came and off I went to surgery. It took quite awhile according to the records and it was afternoon before I came into recovery. I stayed the night there with Mom. The next day I was wheeled back up to the ward where the boys checked me out and looked at the stitching and drain tubes and the gauze. (We were always keen to see each others work)
Mom and Dad left for the drive home and were reassured I would be fine even though I was still a bit sick.
Drifting in and out I was feeling more alert by evening although I still felt ill.
The evening calms down and the TV goes off. We boys settle down as best we can.
During the night (I have no idea of the time) I get sick. Real sick. I start to heave and it’s everywhere. It doesn’t stop... I’m retching and heaving and before long I’m ripping stitches and there is blood mixed in with the vomit.
I remember yells for a nurse, words I can understand and throaty yells by those who can’t make speech. The night nurse doesn’t come. There are no bells to ring, no buttons to push.
It’s hurts in ways I can’t describe.
Suddenly there is an arm around my shoulder and someone holds my head. Another has grabbed a basin for me to throw up into. While the retching doesn’t fade for a bit a calmness comes and soon the vomiting passes. There are hands with folded towels that stop the bleeding. I am not alone. Lifting my wet face, It is Legless who holds the basin and the arms I feel belong to The Boy with No Face.
The nurse arrives and is quite upset. She yells for help and I’m wheeled out of the ward on the way to get cleaned up and re-stitched...I leave the ward to the sound of Faceless yelling at the nurse in a way I am sure she has never forgotten.
There isn’t a day that goes by where I don’t think of them. They would all be my age or older, some a tad younger. Some lived through a hell I can only imagine. Years of surgery. Pain of many types. Some would be gone by now.
When I stand at a starting line, I think of my parents, now long gone. I think of my wife and how lucky I was to find her. When I cross a finish line, however, it is the boys I think of. It is they I have carried across the finish line all these years.