I heard someone say not too long ago that most people with a disability will sometimes go to lengths to appear less disabled than they are. If a quad can get by with a manual wheelchair, he'll ditch all thoughts of a power chair, even if it means less mobility at a greater effort. In the last couple of days, I've seen guys who probably needed KAFOs or at least AFOs walking unbraced.
Over the last year, I've developed problems with my feet, ankles and knees. They aren't always painful, but when they are, they hurt like hell and I spend those days moving around as little as possible. Doctors I've consulted advocate surgery, but I'm not convinced that that's the proper route to take.
I have an ugly orthotic that I could wear on the bad days, but I don't.
Perversely, my pretender / wannabe / dev self has a new fixation. I live close to New York and I want very much to go to one of the museums there. No matter how I get there, it's going to take a lot of walking. As much as I need to see beautiful things, have a day away from my ordinary life, I know that this expedition presents problems.
Getting to the museum involves a train trip and a bus trip and a lot of walking.
Am I ready to take my crutches into the city? Can I deal with getting onto the train platform, then getting from the train station onto the street? It's a considerable distance. Will my shoulders give out? I know that by the time I got to the museum, I would be very willing to rent one of their wheelchairs.
If I don't take crutches, how far can I walk before my body lets me know it's had enough? Would I be able to make it to the bus stop? When I got to the museum, I would show up as someone who looks perfectly AB - who wanted to rent a wheelchair.
The last time I went into New York, to this museum, I ended my visit sitting on the steps, trying not to cry like a baby because I hurt so much. Walking a block and sitting down is not a possibility in NYC. Once you get up, you keep going until you fall down.
In the end, sitting here in front of my PC, I know that there are so many issues here that I don't know what the one real issue is. And so I stick in my day to day life and beauty will have to wait.
1 comment:
You say: "If a quad can get by with a manual wheelchair, he'll ditch all thoughts of a power chair, even if it means less mobility at a greater effort."
I'm a C6 complete. I was almost forced into a power chair when I was still in the hospital, but I refused. It wasn't about "looking less disabled". Nothing like that! It was because I still wanted to be a independent as possible.
Now you might think a power chair would give me more freedom than a manual chair, but a power can't go a lot of places a manual chair can (non-accessible cabs etc.) and it's a lot of extra work keeping the batteries charged, finding completely accessible places (no one is going to lift you PLUS a 4 or 5 hundred pound power chair up or down stairs!).
What people don't seem to realize also is that if I gave up and used a power chair my quality of life would plummet drastically! The muscles I can use and have managed to build up would quickly waste away until I was no longer able to transfer myself or take care of myself, my guide/service dog or our needs. My health would deteriorate simply because of the lack of exercise and I would be at even greater risk for developing pneumonia etc.
Plus when I go out and manage to get form place to place under my own power it feels good, unlike sitting in a power chair as life goes by. It just isn't the same. I enjoy being the active person that I am.
It might look like we are just "being stubborn" or whatever from the outside, but it's just because no one bothers to look deeper than what's on the surface.
Post a Comment