No, I couldn’t resist the Whedon reference. Also have a Bon Jovi song running through my head (10 points to the first to get it)
Here’s a question for you. Before reading any of my rantings, ramblings and inane scrawls (truly, you should see my handwriting)…did you give much thought to what it must feel like for a para- or quadriplegic? I don’t mean emotionally. I mean physically FEEL in those areas of their bodies that no longer function as they should. If you were anything like I was before my chaired life began, I made some terrible assumptions. I didn’t know anyone who was a spinal cord injury victim (I do hate that word mind you). SCI’s were stories we heard, inspirations in the form of Rick Hanson, the work by Christopher Reeve and his foundation, but it wasn’t all that often you actually met someone with an SCI. When I saw them, I just assumed that if they were a paraplegic, they had no feeling in their legs and the legs were just…useless…flopping without help or support.
Of course, that was naively wrong, but I didn’t have any basis to know otherwise and didn’t have reason to give it much thought. I always assumed that the damage to a spinal cord meant nothing went down to those areas. No feeling, no pain, no signals from the brain. Now obviously, I can’t speak for all cases, each is unique…but with my own, it appears that it isn’t so much that the signals stop. They just get very…weird.
Why do I bring this up? Two words:
Pain and spasticity. (and please, don’t make me explain spasticity…it’s exactly what it sounds like)
For almost 3 years (frak has it really been that long?), my body has been fairly stable. Weak, nearly useless right leg, stronger and stable left leg. Sure, I’d utterly ruined my right ankle in between that (read earlier posts on how that one happened), but things weren’t really changing much…just a slow steady decline in the bad leg. Things change though as literally days after my 41st birthday, my body decided to sneak many in on me…and not in a good way
Imagine waking up in the middle of the night, where for 3 years one of your legs hasn’t worked but the other has “behaved”, mostly obeying you. This time though you wake up and both of your thighs, thighs that haven’t felt anything at all during those 3 years, suddenly feel like they are burning from the inside out. You calf muscles are spasming so hard you can see the knots through the skin. The muscles are tensing so much your ankles are turning inward and it feels as if they are going to snap of their own accord. You have to reach down and manually push at your knees and pull at your ankles to straighten your legs, feeling them fighting against you the whole time.
Then go to your waking hours, where sitting they bounce of their own accord, straighten out at odd angles, or as my right leg is doing even as I type this, they jump and slam your heel down to the floor with a strength you didn’t think was left in withered limbs. You try to control it, to stretch the muscles, to work them at the gym, to move them, even to stand with help to get some weight on them. Sometimes it helps…sometimes not.
You can’t find a pattern. Nothing that acts as a trigger. No stimuli that causes the spasms. No movement that explains the burning pain. It just starts…and then…stops. No rhyme or reason.
Now, please know, I don’t write all of this as a “woe is me” cry for help. I’m seeing my doctors, working on the exercises and doing the treatments…and I must admit that it has helped to almost separate myself from my own legs…in my own head of course. I can look at what they do, almost as a detached observer…which is fair since my legs have decided to detach themselves from my own control. It is actually quite fascinating to ponder just how amazing the human body is, how much has to work in tune for all of our body functions to work as they are supposed to. I can sit watching TV with Shannon and watch out of the corner of my eye as my right leg decides to just start twisting…and wonder what caused that. Shannon only really blinks at it any more if I grunt from a more painful spasm. She’s been getting used to it. These new changes though…they are something entirely different.
Now before you ask…there are meds I take…wow are there meds I take. Depending on how bad the spasms are I take 3-4 different pills nightly. These help to calm the spasms and help me sleep, which in turn helps Shan sleep, which in turn helps to keep us both a little more sane. There are downsides to these meds, side effects that I don’t even want to ponder to other parts of my body…and they make waking up in the morning VERY difficult…and everyone knows what a wonderful morning person I’ve been my whole life. I wake slowly, and spend anywhere up to a half hour each morning stretching those legs out, working them around, depending on how they ended up as I slept.
It’s funny, as I used to sleep in the oddest positions. I found sleeping crosslegged, flat on my back, legs almost in a full lotus position quite relaxing back in the day. It freaked the hell out of friends who saw it for the first time. Now though, I can’t do it. Sleeping with my legs bent at all leads to terrible muscle pain when I wake…so now I find lying flat as a board is the best I can do…not the most comfortable, but the best.
And so my body changes. The doctors and therapists come up with new plans. I keep moving on with life and just making it work. There are options…some I plan to explore and experiment with. This post was actually prompted by another blogger I’ve been following by the name of Rachelle Friedman. If you are on Twitter, look her up, or take a gander at her facebook page. She has some great thoughts of living with a spinal cord injuries and recently posted a fascinating look at how medicinal marijuana shouldn’t be so hard to get (she’s in the States). This was after she wrote a GREAT article about the stupidest things someone can say to someone in a wheelchair. I was actually jealous I hadn’t come up with that one myself. That being said, I think I’ll be sharing my own thoughts on marijuana soon.
It was her open admission of the pain she deals with daily that hit home with me…and made me ponder it more deeply.
And yes I know. I’ve been damn quiet since just after Christmas, but let’s be honest… it’s been one hell of a winter. And really? Who needs to hear anyone saying that over and over again. It doesn’t matter if you’ve got a disability or not, this winter in North America has been brutal on us all. I freely admit, I don’t want to be whining about snow trapping me, or pondering those neat ski-style attachments for the front casters of my chair…I haven’t had the energy. Last week we got what I hope will be the last brutal blast of winter, the March lion roaring once more. It trapped me under orders from all to not risk trying to get out the door. So this got me to thinking…and realizing I do need to write…It doesn’t matter how many read it, or who reads it…it’s an outlet, an exploration, and an escape all of its own. So here’s to more to come.
Now don’t mind me going back to the ’80’s. One more time…with feeling!