No one reads this blog, so I'll recap some events. In November, I got arthroscopic surgery on my left knee because I could no longer stand the constant pain I was in and it was hoped that the surgery would alleviate some of that pain. The fact that the surgery would possibly allow me to walk without a cane for the first time since 2001 almost didn't matter. The success rate was low, but the pain was terrible and I had to risk it.
The surgery worked. Mostly. I should be off the cane by the end of the summer. The doctor says I'll still have to carry a folding cane in my bag, "probably forever" "just in case", but if I hadn't gotten the surgery I'd have been an almost full-time wheelchair user within a year or two.
The pain, however, has improved, but is not gone. Not by a long shot.
I said, often, that if I was just on the cane but did not hurt, I would never have even considered the surgery. And now, after I got it - I'm getting off the cane, but I still hurt. Add to that all my other health issues, most importantly my mental illnesses, and I have gone from visibly disabled to invisibly disabled.
Before the surgery I was afraid that if I could walk normally I'd lose my identity. If I was no longer disabled, I'd cease to be me. I knew that was wrong on many levels, mainly being my disabilities do not define me, but also that even after I'm no longer visibly disabled I'll still be invisibly disabled.
I've always considered other invisibly disabled people to be disabled, so why am I having such a hard time wrapping my head around my mental illnesses, health problems and nerve damage counting?
Not only that, but I feel like I've betrayed the disabled community. When I next see wheelchair-using acquaintances in situations where I would have previously needed to use my wheelchair (like at a comic book convention for example), what will I say? I've formed bonds of solidarity spending nearly a decade being a fairly militant crip. Now I've gone all walky.
I didn't mean to be a traitor to the cause, I just wanted to not hurt all the time. And I couldn't even get that. I feel like I betrayed you all, and for what?
I'm going to keep fighting as I always have, but I don't know what good it will do anymore. When I continue to fight for curb cuts and increased handicapped parking as a person with no mobility issues, I imagine I'll have a hard time being taken seriously.
I don't know why I feel this way. Everyone I know tells me I'm being ridiculous, but they're all able-bodied and mentally-well. This is the first time I've said this to anyone in the disabled community.
So, this is my confession. I'm a disablist, I'm a self-hating crip. Or am I about to lose the right to use that word?
Right now my bipolar is Slightly Depressed.
Right now my pain level is 6.5.
By the way, if you're interested, you can check out my other writing at my geek news website, The Nerd Signal.
By the way, if you're interested, you can check out my other writing at my geek news website, The Nerd Signal.
Your disabilities still "count". And you know, even if you were all-around-all-cured-up or something, your alliance in disability activism would still be so super welcome. I'm not anywhere near in your position, so I can't say I understand how you're feeling. But I do know that sometimes if I first met another disabled person on a day when I needed a mobility device and then see them again on a day when I don't, I do feel kinda strange about it. I know I shouldn't, but I do...
ReplyDeleteFirst, pain is a bitch.
ReplyDeleteSecond, self-image is a tricky thing, and so tightly wound up with what we see in the mirror, that feeling uncomfortable around a sudden and unexpected bodily change is to be expected.
Third -- yes. Your advocacy is more than welcome. For one thing, it's based on personal experience. For another: once a fighter for the cause, always a fighter for the cause.
Totally relate. I'm experiencing something of a remission from my disability and I too am out of my wheelchair. I feel between two worlds, not well enough for the well, not sick enough for the sick. And I too am determined to keep on campaigning. What such changes can give us is an ability to reflect. You can communicate the experience of being disabled even when you don't consider yourself to be as disabled. That's okay. Don't judge yourself so harshly.
ReplyDeleteYou are who you are and how you are is no one else's business. I, too, used to be in and and out. Then, there was a long period of in. Then, there was a hip surgery and now ... now .... there is a glint of in and out again. The internal disability police are as if not more destructive than the nons.
ReplyDeleteGood luck --
WCD
Thank you guys, for the kind words of support. I honestly expected to get savaged for this and was terrified of posting it.
ReplyDeleteThis is something I'd been struggling with for a while, since we first started talking about the surgery even. My wife flat out told me that if I didn't get it, didn't do something about the pain I was in, because of what I *thought* other disabled people *might* think about it, it was one of the stupidest things she had ever heard of.
In the end, even though I'm still in pain, I'm in less than I was so it's good that I got it. But I still feel awkward about the whole thing.