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Originally Posted by abbas child  I'm glad to see you're able to open doors--wasn't sure you could. Good set-up! |
UMND has kindly given me time to get over the disability hump. (I refer to the initial injury - crazy helpless - learn stuff - be independent mountain climb.) Some of the ways I do things are very creative, but give me a year with a disability and a little cash and I'll have figured out how to get it done. If I hadn't figured out how to use my biceps in tricepy actions, I would have all my doors set up on x-10 switches to be push button opened from my wheelchair.
On this site particularly, most people are on a bad slope of the independence mountain. Either they are most of our PLSers: not so crip they can't do things the old way at all or they are our PALS: not staying at a point of disability long enough to master it. So the PLSers muddle around doing things the old way with great difficulty/pain/etc, but don't seem pushed into learning the crip way just yet. The PALS never make it off the upward climb, they are living in new injury land all the time, and never have time to adjust.
Due to they way my UMND stayed in my lower body so long, I'm in a better position. I have been a functioning paraplegic with an occasionally usable posture based spasticity for 6 years at this point, living 24/7 in a wheelchair. I had my new injury time, and I was as new to it all as most of our guys are here. I bought a really cheap wheelchair, thought I couldn't do a ton of things, etc.
But another hidden advantage - I didn't know what I had, and I didn't have insurance to find out either! So I cut my crip teeth with the people who had traumatic spinal cord injury. Those guys received full rehab training, and were willing to teach us progressive folks what they knew. Moreover, they were more injured than I was at the time, and accomplishing MUCH more with their days than I was. While everyone who surrounded me in real life was all too willing to cut a break to the kid in the wheelchair, the transfer, dressing, etc videos and comments of these guys were calling me on the carpet for laziness.
I busted my first wheelchair to pieces learning and had to buy a better one, but in less than a year I had accomplished what had appeared a lifetime dream: I was sitting in the rocky crags of a mountain summit. After that, the sky was the limit. Two years later I took me and my wheelchair solo down 7 flights of stairs to see the bottom of a waterfall, then all 7 flights back up. I could hop a curb up to 6" up, 15" down, or do a quick transfer to ground, throw my wheelchair up a few stairs, pop back in and be in whatever establishment I wanted to. I could get to the top of a climbing tower or the fridge, no legs necessary. I worked, took my 8 hours with my newborn niece so my sis could work too, etc. I had hit the good side of the mountain, when you can do anything, it just will be in a different, probably longer and harder way than able bodieds. It is often more efficient and energy saving to let them help, but no task could hold me back forever.
So understand that when my hands started to go, in my life that was not something to freak out about. In a couple months I had my wheelchair set up with rims that don't require fingers to push, my kitchenware had bolt on perpendicular handles, and I was packing a utensil cuff for eating out, holding a pen, typing. I was practicing picking up game pieces with tenodesis, and learned I make a lot less of a mess if I drink with a straw.
Losing much of my core torso strength stunk, and my head function was a big blow. I even cried for a few days when my sight started to sneak off. But the disability mountain is easier to climb the second or third time - after I got my equipment in place and put in my practice and study time, I regained my independence. It is a more costly independence than it has ever been, and I let those zippy ABs handle things most of the time so I can have time and energy to devote to more than just fighting disability, but it is still independence. And no one who has seen me move my stuff by using my powerchair as a miniature forklift would say I'm underusing it's capabilities.
To be honest, I'm still underachieving for an incomplete quad. I can't put socks on with my teeth yet, and I haven't tackled driving now that I don't randomly twitch anymore. I can't catch myself falling, either. But if I plateau, I'll get all that stuff done eventually. I'm doing pretty well for my vision level: I can take and read notes in Braille, and get on my wheelchair lift backwards safely, even when I can't see it at all. From an independence view, I underuse my spastic ability, but from medical view, whenever I push those limits I tear stuff up in my bowels and bleed (like with this move).
And I've had a lot of good turns too: my vocal spasticity eased off into a slow weakening, WAY more convenient. I still have full bicep strength, and finally enough hand contracture to make holding stuff work in some positions. I can do most anything I have to do - just don't ask for it on a schedule or for me to be able to do anything else, heh!