On Monday I wrote about how you need two hands to “drive” if you’re sitting in a manual wheelchair. I would like to revise that statement since I met a man at Planet Rehab this week whose left side is much worse off than mine, but he was able to drive his chair using only his right arm and right leg. He was attended by a nice lady I assumed to be his wife, and she was very sweetly trying to help him steer until PT37 said she wanted to see if he could do it himself. Apparently he could – he even handled the busy parts of the gym quite nicely. I was very impressed and told his wife so. She then informed me that he usually drove a powered chair, so the change to a manual one was an even bigger shock to his system since he hadn’t practiced before.
This lady knew something about spending time in a wheelchair having done so after breaking her pelvis and she used every spare moment to encourage her husband to exercise, e.g. when PT37 went to go get some paperwork it was not time to rest for the patient – his wife was his biggest cheerleader and turned out to be almost as hardcore as PT37. This is the caretaker’s dilemma: How do you help the patient while fostering independence?
Sometimes Mommy will get out of her chair after I’ve gotten out of mine to go get an apple or something. She’ll then sit back down and tell me she has to remember that it’s good for me to go get an apple and wash it. Her instinct, of course, is to do that for me – but she makes certain decisions to let me do some things on my own. The point is that it’s a choice.
The urge to push me to do more comes more naturally to Tanpo (see post 7. An Infinite Do Loop). When we first came home Dad supervised my exercises one evening. I was still using “that wretched stick” – a thick dowel from the hardware store I used for my OT exercises for a full range of motion. I used to tell Mommy that when I didn’t need it anymore we were going to chop that stick up and barbeque it. Well, I don’t use it anymore but it’s not been barbequed – it sits quietly in the umbrella stand next to my rainbow bouncing ball. Maybe I’ve gotten soft. Anyway, I paused momentarily as Dad supervised my stick exercises (specifically, he was to ensure I did not fall out of my chair when I laid the stick on the ground and had to pick it up again) and when he saw me pause Tanpo just said, “No resting.”
Isn’t that funny? Tanpo will hold my hand as I navigate a curb or cut a piece of fruit for me, but I think he’s wired to make me do more. So since I have the luxury of having two full-time caretakers I get a good mix of helping and pushing.
The incongruity of “No resting” vs. “Resting gives you energy to do more stuff”is something I haven’t figured out yet. I have encountered a lot of incongruity lately and it has been the source of much amusement for me more so than anything else. Example: A Rehab Hospital isn’t generally a place where you want to laugh loudly, but I can’t help it. Brain injury, paralysis and amputation are not laughing matters, but I honestly can’t contain myself and (would) just start laughing spontaneously at Hospitals 3-5.
I was on my way to PT one day at Therapy Boot Camp (3rd Hospital) and I congratulated myself on wheeling my own chair down the hall to the elevator – PT2 only had to walk next to me – he didn’t have to steer or anything. Maybe it would have been better with him pushing me because CRASH! I drove my chair straight into a wall. I immediately dissolved into laughter but poor PT2 almost jumped out of his skin. Once he ascertained that I wasn’t hurt this was our exchange:
2: You weren’t sleep driving, were you?
Me: No….but my eyes might have been closed briefly.
(I didn’t do this on purpose. This was how I found out my eyes sometime closed involuntarily.)
Me: (quiet giggling. At least I was trying to be quiet.)
2: What’s so funny about being in a wheelchair?
Me: Umm…I ran mine into a wall?
I think he was trying to tell me that being in a wheelchair is quite normal for lots of people and I shouldn’t be self-conscious of mine, but my laughing derailed the teaching moment. As I dissolved into peals of laughter I made no attempt to conceal he admitted that the situation had been a little funny and laughed with me. When we arrived downstairs at the gym he was specific with his instructions: e.g. Come over here to the mat – eyes open.
So I am thankful that I can see humor in many unfunny situations, but I’m also thankful I do not face the Caretaker’s Dilemma of Help vs. Push. I wouldn’t know how to walk that line. I actually don’t know how to walk any line, based on my parallel bars experience on Thursday. But anyway, I’m not a caretaker – I’m a ward. So all I have to say is, “Thanks, Mom and Dad! Xxoo.”