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May. 27th, 2012 03:50 pmI sometimes get really freaking resentful at the unfairness of life. And of the fucker of a medical condition I'm stuck with -- and how trapped it's made me.
There was an article, making the rounds on some of the FOP community on facebook, about a woman with the same condition I have. She's 25, and the description of her current mobility state is that she can't move her head or raise her arms over her head.
And that she's worried about what might happen in the future if/when the condition starts affecting her leg mobility and she'd have to start using a wheelchair and she likes the independence she has now.
After the initial reaction (equal parts pissed off at the concept that wheelchair per se automatically equals pure dependence, and recognizing that the fear/worry is valid anyway), I was left with an aching resentment of how much I've lost.
By the time I graduated from college? I was using a wheelchair full time. I could walk, with a cane and grab bars and stuff, the distance it took to get from my chair to the toilet, from my chair to the shower, from my chair to bed; I was still sort of independent, but not very much.
By the time I was 25? Fairly sure that at that point, my right arm was completely fixed, and my left had barely enough mobility for me to awkwardly feed myself with regular silverware, and I was needing help doing stuff, but I was also able to do grad school, and LJ support stuff, and ... stuff.
(and looking back at my LJ from that period makes me want to cry, partly for how much I've changed for the worse, and partly for how much I *haven't* changed)
Right now? It's so much shorter to list the things that I *can* move (most finger joints, but not all and definitely not the base of the thumbs; jaw; fractional movement in wrists and about half my toes; minimal movement in knees) than the things I *can't* (...everything else).
It hurts.
Not physically -- or, well, yes, sometimes that too, and there is a reason why I have a stash of prescription pain meds, even though it's not the true Good Stuff -- but. Just. It hurts, how much I can't do. It hurts, not being able to do the things I used to; it hurts, not being able to really take care of myself at all; it hurts, being *useless*
(and computers and internets are a godsend in that respect because as long as I can interface with a computer I can still do stuff, except a) I'm typing with at best one hand and a stick, and b) the mental fuckery of depression means that I don't end up doing even the things that I phsically can)
(and there is a voice in my head that says I shouldn't resent the situation I have because there are people so much worse off -- there are people that have this condition *and* other conditions, and there are people that are as immobile as I am *and* have locked jaws, and I'm in a societal place where I can survive without needing to work, where I'm not homeless, where I have access to people that can afford equipment for me or subscriptions to games or whatever)
(and that voice also says that at least I have the excuse to be useless, that I would be just as bad if I didn't have the physical condition but wouldn't then have any justification)
(and I just want to curl up and cry, and I hate myself for wanting that, and I hate myself for hating myself)
(and)
(fuck)
There was an article, making the rounds on some of the FOP community on facebook, about a woman with the same condition I have. She's 25, and the description of her current mobility state is that she can't move her head or raise her arms over her head.
And that she's worried about what might happen in the future if/when the condition starts affecting her leg mobility and she'd have to start using a wheelchair and she likes the independence she has now.
After the initial reaction (equal parts pissed off at the concept that wheelchair per se automatically equals pure dependence, and recognizing that the fear/worry is valid anyway), I was left with an aching resentment of how much I've lost.
By the time I graduated from college? I was using a wheelchair full time. I could walk, with a cane and grab bars and stuff, the distance it took to get from my chair to the toilet, from my chair to the shower, from my chair to bed; I was still sort of independent, but not very much.
By the time I was 25? Fairly sure that at that point, my right arm was completely fixed, and my left had barely enough mobility for me to awkwardly feed myself with regular silverware, and I was needing help doing stuff, but I was also able to do grad school, and LJ support stuff, and ... stuff.
(and looking back at my LJ from that period makes me want to cry, partly for how much I've changed for the worse, and partly for how much I *haven't* changed)
Right now? It's so much shorter to list the things that I *can* move (most finger joints, but not all and definitely not the base of the thumbs; jaw; fractional movement in wrists and about half my toes; minimal movement in knees) than the things I *can't* (...everything else).
It hurts.
Not physically -- or, well, yes, sometimes that too, and there is a reason why I have a stash of prescription pain meds, even though it's not the true Good Stuff -- but. Just. It hurts, how much I can't do. It hurts, not being able to do the things I used to; it hurts, not being able to really take care of myself at all; it hurts, being *useless*
(and computers and internets are a godsend in that respect because as long as I can interface with a computer I can still do stuff, except a) I'm typing with at best one hand and a stick, and b) the mental fuckery of depression means that I don't end up doing even the things that I phsically can)
(and there is a voice in my head that says I shouldn't resent the situation I have because there are people so much worse off -- there are people that have this condition *and* other conditions, and there are people that are as immobile as I am *and* have locked jaws, and I'm in a societal place where I can survive without needing to work, where I'm not homeless, where I have access to people that can afford equipment for me or subscriptions to games or whatever)
(and that voice also says that at least I have the excuse to be useless, that I would be just as bad if I didn't have the physical condition but wouldn't then have any justification)
(and I just want to curl up and cry, and I hate myself for wanting that, and I hate myself for hating myself)
(and)
(fuck)