kerry said:
I am thinking about writing a mainstream story in which the main character is in a wheelchair. I'm considering making her incontinent. Should I do so, I'm wondering about how being unable to use one's legs affects incontinence. I know I have read posts from wheelchair-bound people who use diapers (rather than catheters or colostomy bags or whatever). My question is: as you move through the world--working, shopping, dining out, etc.--how does this work? Or do you need a helper to change? Or what?
Forgive me if I am asking really stupid questions.
Kerry
Hi. My wife is mostly wheelchair bound, though she's continent, so I can't help in that regard. My wife is a diabetic amputee and we do home dialysis, so she doesn't pee. She does get around on her prosthetic leg, but she spends most of the day in her wheelchair.
My wife and I have tried to not make her wheelchair the center of her life, if that makes sense. I remember when she first was confined to it, and we suddenly became the wheelchair couple. People try not to stare, but it's there. We'd go to a restaurant, and it's difficult to get past people, and tables and chairs. It was impossible to do Christmas shopping in stores because we couldn't get through the sea of people.
Walking people when shopping for clothes just move between the close isles of clothes and racks, but a wheelchair doesn't fit. It's incredibly difficult to go to a store. You have to find a handicapped parking lot that has the slashmark bars so you have the room to move the wheelchair to the passenger door because it's hard to get from the car seat to the chair. Then after using the ramp, you realize all public doors open outward, into the chair. I can't open and hold the door, hold the handles to the wheelchair and wheel my wife in. She has learned to help with the door, even though most doors seem to have a door return with 100 lbs. of torque.
So my point is that everything is a challenge and everything takes thought. You think ahead for everything you want to do. When my wife came home from the rehabilitation hospital, we both were scared. She barely had the strength to use a walker, lifting herself off the ground with her arms and hands especially since she is a little over weight. Transferring oneself from a chair to a bed, or a toilet or commode took planning. We solved it by placing the commode between the bed and her wheelchair and her using the walker. Washing is a similar challenge.
I think having to wear diapers would be similar. From my perspective, the impact of having physical challenges is an almost equal impact for the caregiver. I was with my wife at the doctor's when they told us the leg would have to come off. I've always done wound care on my wife's feet, and I felt like I had failed, but I had to be strong for her. I promised her I would make this work. I gave her my word and I was able to keep it. The caregiver can be another part of your story.
My wife's feet problems started ten years ago and I worried about it every day. The anxiety was always there, gnawing away at me. It's what led me to write my novel. In my novel my protagonist Katelyn realizes that bad things are always happening to someone else. There is the kid at school in a wheel chair, the kid with muscular dystrophy, something, but never you. It never happens to you, and then it does.
I hope that helps. I'm always available to you if you need insight from someone who deals with this at a similar level.