I spend a lot of time in my mind these days, since my body doesn’t work quite right. See, the connective tissue throughout my body doesn’t form properly, so my ligaments and tendons can’t hold my joints together the way they should. If I move any of the joints in the just the right – or really, just the wrong – way, they will dislocate partially (really, the technical term for that is subluxate) or completely. Sometimes I can pop them back in, though the doctors prefer us not to; of course, sometimes they pop themselves back in without me really knowing. Sometimes I need a doctor or physical therapist to put them back in; and some of those times, it’s the physical therapist who says, “Wow, your second and third ribs are out again. What did you do this weekend?”
So I spend a lot of time trapped in my mind, trapped in my house, trapped within the broken body that I’m afraid to use. My work is mostly cerebral. I’m a software engineer. I do a lot of requirements and architecture work. I’m on a lot of conference calls. I write specs and process documents. Basically, they’ve hired me for my brain. If I could do the job without a body – if a brain within a jar could still operate the computer – then I could still earn my salary. Of course, that means that when medication side effects (or the side effects of the pain itself) cloud my thinking or affect things like concentration or short-term memory, I get rather concerned. Even if my body is broken, I really need my brain to work!
My brain has been thinking a lot about disability. Am I disabled? What does the word even mean? I mean, I’m not in a wheelchair, but that’s probably in my future, since the connective tissue problem affects my upper body just as much as my lower body. So anything I might use to help my ankles, knees, and hips – like a cane, or crutches, or a walker – well, that would put more stress on already-stressed hands, wrists, elbows, and shoulders. To the average onlooker, I look fine. In fact, I’m usually smiling, chatting, trying not to let the illness show. It’s only when I think nobody is looking that I’ll allow the winces and cringes to appear on my face, that I’ll allow my gait to slow, that I’ll start to limp. I’m 36 years old, and most of the time, I move like I’m 80. Heck, most of the time, I feel like I’m 80.
My mother has this condition, too, but she only found out about it through me. When she finally got a referral to a rheumatologist to look at her knees, in her late 40s, he told her she had the knees of an 80-year-old. She’s since had both replaced. Well, the joints of an EDSer wear out more quickly, because they are hypermobile; they move around a heckuva lot more than the joints of a so-called normal person. My hands already show osteoarthritis on x-ray, and I can feel it. Research also tells me that EDS patients also tend to have more advanced arthritis than their x-rays reveal… so if my hands are showing it, they’re already degenerating, and if the other joints aren’t showing it yet, that doesn’t mean they don’t have it.
So am I disabled? It appears that, by some definitions, I am. Of course, one I didn’t even know until recently that I could claim is that simply by having proportionate short stature, I have a disability that I can request reasonable accommodation for under the Americans with Disabilities Act. But under the definitions in that same act, the major life activities of sleeping, performing manual tasks, walking, standing, lifting, bending, concentrating, thinking, and working are all affected by the chronic pain. All of them – and those are all ones listed explicitly in the law, not ones that are lumped into other broad groups.
There are times I feel despair, watching my kids, watching other parents with their kids. See, I can do the things those other parents are doing. I can run and play and do that stuff… but if I do, I’ll be in bed for three days straight with the pain, unable to get up to eat or drink or work or do much of anything. I can lift that heavy laundry basket and carry it back to my room, and then I’m going to need to rest for a while. I can vacuum the entire house, but then I better not have any other plans for the rest of the weekend, not unless they involve ice packs, horizontal planes, and relaxation CDs.
Friday, I woke before it was time to get up for the day, and I rolled over to check the time. I put my weight on my right wrist in just the wrong way, and it dislocated. My wrist exploded in pain, and it shot up my arm. I collapsed onto my stomach and just lay there for a moment, clutching the wrist with my left hand, under my chest and throat. I felt it pop back into place, but it was too late; the wrist was sprained. It still hurts like the devil. It’s lightly swollen, and I’ve tried to ice and rest it, and to keep it splinted as much as possible this weekend. In spite of this, I got the laundry done. I got up to the grocery store to pick up heavy bins of cat litter and a giant bag of cat food. And now I’m sitting at my computer again, trapped inside my beat-up body, trapped inside my beat-up brain.
There is no cure for my condition. It is genetic. I will live with chronic pain for the rest of my life. I have cycled through the stages of grief several times this year, and I’m sure I’ll continue to cycle through them for years to come. ‘Cause just when I think I’m there, I’ve finally accepted it and made peace with where I am — BLAMMO! — some new wrinkle comes along, sweeps me off my feet, and has to be dealt with. I’ve had enough of those just this year. I’m not just tired of them; I’m weary. I’m bone-weary. I wish I could sleep for a week, except, of course, that I never manage to sleep through an entire night. There’s always something to wake me up, something to remind me that it’s aching and wanting attention. And I just… well, I don’t know what I just. I just don’t know. I don’t know what I want any more. I’m afraid to want. I’m afraid to hope. I’m afraid to dream. I’m afraid to think about anything much more than what’s beyond my beat-up body, my broken-down brain. And that’s pretty sad.
So I think I’ll call it a night, now. Good night, my friends. May God bless you this night, and may you find peace.