Webb Chiles is a man who describes his job as traveling to the edge of experience and then taking the time to send back reports. To reduce anyone to one role in a life lived over several decades would be a disservice but for the purposes of this page today it will do. He saw me doing the same thing in rehab and pointed that fact out to me. And now he wants to know what it’s like being outside. So what is it like living alongside the able bodied? Tough. Here’s a dispatch.
Everywhere you look, they are doing what you can’t.
You can look through the imperfect windshield of the car (which you can no longer drive) and watch them being:
They walk, they bicycle, they run, you hobble. See the handicapped sign behind me? I qualify.
My wife is heroic. She manages my life. She clears my path. She makes being a cripple possible. Without her I don’t know how I’d cope. You wouldn’t be reading this page for a start. But she also has to hear me cry out with frustration when I pee and miss the bowl. I got good at it in Room 508 in rehab but here the bowl is different. I have to relearn. Easier to pee in a bottle. Guess who empties it? That’s right. You can’t carry anything when you walk with a walker. Chuck offered me a pink basket to hang off the front. I was half tempted.
He came by and stepped in to help Darnell assemble my shower bench. Layne who is shameless and brilliant because of it, asked Darnell to assemble the contents of the box so he got his toolbox, she gave him a second beer and with my advice he assembled it backwards. Hmf. This is some IKEA shit Darnell grunted. By the time Chuck got involved my wheelchair and I were shunted into the background and the two geniuses assembled it wrong a second time. I was on the Percocet Express still and a beer didn’t help. How is it backwards I argued, bored by the drill and the bolts and the mistakes.
Because, my wife said, if you sat on the bench with the backrest this way you’d have your back to the shower. Unarguable. So Darnell got the drill out for the third time, Chuck held the erection and the rest of us watched as Rusty snored. Ha my wife said. Michael thought we could assemble this sitting up on the bed.
The doors are too narrow for my chair. I have to walk which is good for me but hard work. The furniture is low which is hard work for me but I suppose it’s good. The terrazzo tile floor jangles my nerves but I am coping. Where to wash is awkward but maybe a bowl on the kitchen counter will work in the long term. If you leave your phone on the couch arm I can’t sit down. I need to hold the the couch arm before I lower myself. A phone would slide my hand off into space and I would fall. So small a detail. The night stand can’t be up against the wall. I can’t reach it if it is. On and on.
Like Webb I am not a single note symphony. I am more than a cripple. But my dispatches must come from the edge of experience and right now my experience is right here. And yes, members of the public where we went walking around Higgs Beach were properly deferential and helpful. I have to get used to the notion that sometimes I can’t. Can’t do things. Thanks to the guy in the truck who helped fold and put away my chair in the trunk while I sat lording it in the passenger seat. Thanks to my wife for encouraging me to walk. To test my limits. To feel the burn.
Plus she cooks cleans and organizes my pills. I am a lucky man. But it’s still hard being out in the world.
It isn’t easy being handicapped but if you have to do it you do. Ignore them Webb says. He’s right I just keep pressing on. Good advice from a dear friend who cares and has the courage to express it. He makes me feel silly for worrying how I am perceived. As long as I don’t fall I’m doing okay. Peanut gallery be damned. Thank you Webb.