I’m not driving right now. I was trained and certified to drive with hand controls but since I’ve almost had to learn to use my body again after the baclofen pump, I’ve had to push that and getting an accessible vehicle back. Right now my wife helps me get in and out of the passenger seat and drives me everywhere, so when the front right brake pads reached the end of their life while we were at Disney World, I was not the first to know. Obviously……well maybe not obviously, we made it home fine and had both front sets of pads and rotors changed.
It doesn’t seem like that long ago I would have had a good idea of their wear level before the trip and could have changed them myself. Not that I would have, mind you. It took the professionals less than an hour, the labor charge was reasonable, and the parts were about what I could have gotten them for. My point being that it would have taken me most of my Saturday to do what they can do in under an hour and since I consider my personal per hour rate to be pretty high for a driveway brake job on a weekend, I wouldn’t have really saved anything. Same goes for a lot of things, automotive and otherwise, but somehow there’s a difference to me between having something done because I don’t want to do it and having it done because I can’t do it. When I was able to do them myself, I didn’t particularly like replacing brakes, but now, I find myself almost ashamed to have it done for me. If I had it done for me in the past, it was because it was the sensible choice. Now it’s the only choice; i.e. there is no choice and the loss of that freedom to choose is perhaps worse than losing the actual ability.
In case I set the bar too high with brakes, I put on and tied my own shoes the other day.
“But Ben, that doesn’t sound too bad”.
“You wouldn’t think so but my legs and feet aren’t passive, they are actively uncooperative”.
“So like putting shoes on a 2 year old?”.
“Well, my hands and arms aren’t 100% either, so yeah, like putting shoes on a 2 year old…if another 2 year old was doing it and they both hated each other”.
Obviously, the sensible choice is for my wife to put my shoes on me and we’re sensible people, so we choose that route 99% of the time. She can do it in under a minute. I didn’t time myself, but I’ll bet it takes me 5 at least and those are 5 minutes I’ve used up from my daily, (variable) pool of hand and finger dexterity.
It’s not ego (I have one, but like to think of it as my healthy excess of self confidence) and it’s not a misplaced or wrongly emphasized priority. I don’t think it’s purely some childish assertion of independence either, although I have used the words, “I can do it myself”, from time to time. It’s knowing I have a choice and have the freedom to choose the sensible one. With a disease that slowly takes our freedom from us, hanging on to even the smallest ability becomes a priority.
Abilities are precious to those with disabilities.