Talking About My Disability

Some of you have heard me refer to myself before here as "partially disabled", which is my preferred identifier for my level of physical ability. And I've been asked how that works, as it seems to some folks that being partially disabled is like being a little bit pregnant. So I thought I'd explain how one little aspect of my life works to make me disabled sometimes, but not other times.

See, I'd hesitate to call myself "disabled", or whatever other identifier might apply in a more robust way, because yah, I do play soccer twice a week still (well, not right now, as money prevented my playing this winter indoor season, but as a general rule).

My disability is that I have chronic serious pain, a result of a car accident when I was 21 (literally more than half a lifetime ago, for me). The initial injuries weren't that bad, but over the years the damaged vertebrae have continued to degenerate, along with the discs between them, and I've developed a pretty serious pain problem.

Now, I deal with that pain every day. I take a fairly heavy load of opioid medications to cope each day, and I do cope, to some extent, and manage to live a reasonably average life: I work full-time running my own business, volunteer with the local community theatre, and of course I have this minor blog habit (big lulz there; I have five Livejournals, as well as my gig writing here).

When it all goes pear-shaped, and the real disability comes into it, is when my also-chronic insomnia comes to visit, as it did in the last couple of days.

Monday night, I think it was (I'm still a bit foggy about the last couple of days - you should have seen how long it took me to sort out the NQDTR yesterday, when I was all pain-brain), I didn't get to sleep until 0730. And had to get up to meet a work deadline at 0930 (I work at home, one of the accommodations I make for my disability, and one of the huge privileges I have in having acquired the skills to be a brain-worker), and the phone just kept ringing all day.

Now insomnia on its own, that's a pain in the ass, but it's copable (ETA: As pocochina correctly points out, I should have been clearer that this is a statement from a personal point-of-view, rather than the bald statement of fact I initially wrote it as; insomnia can be absolutely debilitating for some, and I am sorry to have minimized it even unintentionally).

But one of the unfortunate side effects of my chronic insomnia is that it interferes very strongly with my pain tolerance. And if I have to blow my own horn here, my tolerance for pain can be staggeringly impressive; simply surviving has dictated that it must be. It's not universally applicable, though. I turn into a big mewling baby when I get headaches, which is thankfully quite rare for me.

So last night, when I finally collapsed into sleep around 2030, and woke again like clockwork six hours later, I was in a bad spot, because now I had insomnia *and* pain, because my med schedule had gotten all buggered up. Normally, I take them every eight hours, but going to sleep out of schedule had meant I missed the midnight meds, and sure enough, a couple of hours later, there I am awake again (I can never sleep more than six hours, except when I'm sick or something), and I'm in bad enough pain that I can't sleep.

Let's review briefly here: I need the combo of pain tolerance and meds to get to sleep. When I can't sleep, I have no pain tolerance. When I have no pain tolerance, I can't sleep. Lather, fume, repeat.

Now, I'm thinking of this as a bit of a teaspoon here, not asking for sympathy. My body is my body, and it's the only one I've got, so I don't really need or want pity; it has many, many advantages too, and it would be disingenuous to focus only on the one aspect in which I do experience disability. I have pretty much perfect vision, my proprioception is sufficient to have allowed me to be an expert shooter, a varsity athlete (back in the day), and so on.

What can you do to help me to get your own teaspoons up? Because I know Shakers, and I know this is on the mind of some of you. Well, for me, personally, you could do some work for marijuana legalization the next time you've got an inkling to get active. It's about the only thing that can break the insomnia/pain cycle for me, and allow me to be a productive member of society. Literally - if I had to do without for the rest of my life, I'd probably have to go on disability payments rather than running a business and paying taxes and so on.

Oh, and you can work against intoxicated driving, too. The guy who hit me was intoxicated while driving, and ran a red light to smash me to bits. This includes use of marijuana while driving, which is dangerous and stupid. I use the stuff, but I won't drive for hours after I've used last. It would be gallingly hypocritical to drive intoxicated, for me.

So there you go. That's what being "partially disabled" means to me (and of course, I speak for no one but myself in my use of the term; even someone with similar issues may well view their situation quite differently, and respond in different ways, and be completely reasonable in viewing and doing so).

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