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.
8 comments:
Hooray, that you are outside and able to worry about what the able bodied think about you! I'm guessing they will cut you a wide path, afraid you will run over them. Double Hooray that your wife cares enough to get you out and makes you walk. Sadly she, too, is disabled along with you right now, but you will both be healed quicker with the efforts put in today.
Thankfully you are still here to share this journey.
Having a physical disability and being out among people is good for them and good for you. For others, it reminds them of the gift of a normal day in their lives. If you only see people walking and running, it’s easy to forget how great it is to be able to do it. For you, it’s hard to remember that this not your “new normal”, but rather a waypoint on the road back. We’ve seen you pass so many on the road you are on.
I used every tool I could find during a couple years on a walker and double canes. There’s a very practical plastic tray that fits on the walker that even allows carrying drinks (albeit with a learning curve). My tools are piled in a corner of the basement now, thanks to incredible surgeons and a great husband. But the experience changed my thinking on the kindness of strangers. Most people wanted to help, and at first it embarrassed me. I got over it. A young man who will always be in that chair told me, “Let them find their goodness, and you find your humility.”
What a great partner you have in Layne! I look forward to hearing about the struggles and victories on your road.
You both make excellent points. I’m here and alive and not dead which was a close call.
And I am here to show others that being able bodied can change in an instant.
Suggestion when you don't have someone to mop up after your misses. On a boat in rough weather a guy can sit down to pee. Rivers use it sometimes because toilets are undersized. It works as long as the guy isn't oversized.
I do sit down. That’s the problem. To shit I need to sit forward. Then when I per I need to sit back far enough. Then to finish shutting I need to move forward again. And time it all correctly. Standibgbto oiss is easy. Then I’d shot on the floor.
Husband Bob is mobility challenged here and a big guy too. We have learned what works and what doesn't. And we keep adjusting. The basket on the walker is a great invention! Keeps track of phones, remotes, wallets, etc, important mail. Amazon is a great source and lots of medical equipment sights. We have learned to ask for help if we need it, better than to risk a fall. Will you get any more therapy in KW? Is there an option of a therapist coming to you? We found Bob got tired just getting to the therapy....coming to the house made the therapy more effective.
2 words......elongated toilet. Handier than pockets on a shirt for us big boys!
Hi, Mike...Greetings from the Hill..."Yeah, life sucks, but when you are blessed with good humour and a love of life, the crusader carries on.", laughs the oldman, crippled for five years, no benefit of a therapist, only a stubborn sense of survival, struggling down the fifteen steps each morning, after breakfast of bran, milk and a banana, then a Pall Mall and Pabst on the balcony, and a bowl at noon...........! hohoho somatatic visceral types can bulk up....MJ
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