Shortly after I got my new wheelchair about two years ago when I was working with physical and occupational therapists and a wheelchair technician, two clickers were Velcroed onto the gear box. Given the very limited use I have of my left arm and thumb – I have no use at all of my right arm and my legs – since my spinal surgery three and a half years ago, one is to enable me to more easily turn my chair on and off, and the other is to make it easier for me to change the speed and access the tilt function. They work pretty well.
Except when they don’t.
It’s not that the clickers don’t work. They work fine. It’s my arm that doesn’t work.
Not all the time, though. There are times when my arm works okay, and I can use the clickers just fine. Easy peasy. There are even times when I can even press the buttons on the gear box.
But there are times – lots of times – when, for some reason (being too cold, too tired, not sitting right…?), I can’t get my arm down and can’t use the clickers which were supposed to enable me, which were supposed to make things easier for me. (Hitting the clickers without hitting the joystick is also an issue.) I end up right back at being stuck, not being able to do anything and needing my attendant to do it.
This is most frustrating, to say the very least, when, before the surgery, I had no problem pressing the buttons on the gear box and operating my wheelchair.
And so many other things. Before my surgery, I was able to do them with no or little problem. No special clickers needed. (Although I did have some special equipment, such as my speech device and additional programs and attachments on my computer that made things easier for me.)
I have been thinking a lot about this lately, about how my life is so different now, about how I used to be able to do so many things. I notice how weird it is when I try to tell my attendants now what my life was like, what I was able to do, about all that I did, like go on camping trips, until February, 2017. It’s like they don’t believe me, like they roll their eyes at me and say “sure, sure.” At least this is how I feel when I try to tell them. (In a weird way, this is a blessing, in that my attendants accept me as I am and aren’t sad and/or angry about all that they have to do for me.)
But, as it is occurring to me, it’s also me who can’t believe what happened.
Yes, I’m frustrated, extremely frustrated. And I’m sad, terribly sad. That I can’t press the buttons on my gear box and operate my wheelchair as I used to. That I can’t turn pages or swipe on a tablet. That I can’t wipe my nose or flip on the light switch, open the door or take a cookie from the tin and eat it myself. And so many other tiny and not so tiny things that I could do before.
What I experience even more, I realize, is disbelief, that I can’t or don’t believe what has happened to me – like, “What the Hell happened?” As I recently explained to a friend, I don’t wake up in the morning thinking this. No, it will hit me at random times, like when I have to ask an attendant to feed me a piece of candy, when my attendant positions me in bed like a rag doll or turns me from side to side at night, when my attendant has to assist me in having a bowel movement when I used to be able to sit on the toilet (after my attendant helped me onto the toilet – I was able to stand with my attendant helping with balance) and go on my own. I could go on and on with examples.
What the Hell happened, indeed!
I don’t know what it means that I’m experiencing this still three years after the fact. Where does this put me on the stages of grief?
Am I stuck at denial? Friends assure me I’m not. And I cried plenty during the first year after surgery (although, perhaps oddly, not for a while now).
As I’ve told friends, I wish I had been in a car crash or some other accident. Then I would understand better, it would make more sense, why I ended up more disabled like this. I could get my head around that more than osteomyelitis, some weird infection that I’d never heard of, that got into my spine apparently after starting off as a urinary tract infection after a botched catheter insertion and that almost killed me. Talk about hard to understand. Or, if I had to have an infection, why couldn’t I have had cancer or something that I had heard of.
It’s kind of like this pandemic – seemingly a small thing that came at us almost out of the blue, or, more accurately, wasn’t prepared for or heeded properly, and now we are or should be going around wearing masks like in some sci-fi or horror movie, kids are staying home and having school online and millions are out of work, not to mention all those getting sick or dying, with perhaps, given our divisiveness over everything including masks and, yes, vaccines, no real end in sight.
What the Hell happened, indeed!
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