Post by hephaestus on Aug 11, 2012 19:56:29 GMT -5
First, I’d just like to say that I relate so much with you, thatgimpguy. It's weird: while I generally relate with all people with disabilities, meeting another person with SMA always comes with its own mountain of “Yup, I relate with that” comments.
As far as diseases go, SMA keeps a very strict schedule. First this happens, then that happens, etc. And even though it progresses at different paces for different people, it always progresses. You can see why it’s so easy to relate. We all go through the same life stages, jump the same hurdles.
I guess this is what really made me want to respond:
That was a bit of a mindblower when I first read it because I know exactly what that was like. I jumped that same hurdle when I was 8. It was a very defining moment for me, one which looks in retrospect to have initiated a lot of the subsequent developments in my person -- kind of the way a scream starts an avalanche.
Up until that age, I had it in my head that my disability was just temporary. I was convinced that all I needed was a perfect set of leg braces which I would wear for a long time before shedding in the midst of a passionate Tommyesque sprint, like Forrest does in the “Run, Forrest, run!” scene. I was a weird kid.
Anyway, somebody, I forget who (I think it was my cousin), broke it to me that that’s just not how it works, that I was almost certainly never ever going to walk. I never again trusted that things ran according to a plan. I became a more contemplative, introspective kid, a 10-year-old Sartrean beatnik with an early penchant for dark humor and Weezer.
This new fact took about four years for me to totally absorb. It’s a fact that sort of comes at you in waves of “Yes, this is the case” as opposed to all at once.
When I turned 13, the hormones switched on (just like my ability to be a kid switched off four years earlier) and took all that unrefined kid-confusion and turned into angst and depression and general subjective pandemonium.
It’s weird thinking back on it now since I know how incredibly unhealthy this all was, but between age 13 and about age 16, I was extremely suicidal. The thing is, I couldn’t act on those ideations, even as a “cry for help” thing, because of how physically impaired I already was, and I sure as hell didn’t have the communicative tools to express it, so I just sort of stewed like that in my wheelchair for three years.
High school wasn't that bad because I finally met friends, but graduation was probably the worst time of my life. I was on the brink. I was only 75lbs because of the progressive inability to eat without choking or taking hours on end; I was sick all the time, probably because I was only 75lbs; I was close to death, probably because I was sick all the time; I had been going through another bout of teenage "unrequited love" which ended particularly badly; and to top it all off, I had lost both my abilities to draw (which I was banking on using for a future career in comic books) and to masturbate (which can exacerbate things when everything isn’t going so smoothly, as I’m sure you all can understand).
All that tension got released that summer after graduation when I had a feeding tube installed. I gained all my weight back plus a little more, got healthier, and finally faced someone telling me that she couldn’t be with because of my disability after years of suspecting that that was my problem with girls in the first place (it seems so obvious now, but hindsight is always 20-20).
Then I looked back at the events of the previous year and half and saw how close to dying I actually was (you can’t always tell how bad it is when you’re in the thick of it). That made romantic rejection look like the ice capades.
Just like the huge series of realizations I had had before about never walking and girls never being into me except for a possible few, realizations that ultimately surround the same basic premise that this, this right here, is real, I had another realization then, although this one was much heavier: I’m probably going to die from this.
That was four years ago and I’m still trying to wrestle with it. My lifestyle has become a tad fatalistic since then, I have to admit. Nothing serious, just a healthy amount of alcohol on the weekends, expensive food all the time, and the occasional sexworker.
I dropped out of college because of depression and because I have difficulty learning according to a course-curriculum (meaning I skip ahead way too often out of boredom). However, I’m looking forward to getting back into college once I get my head screwed on tight.
I’m seeing a therapist in two weeks (yikes). I’m lucky to have a stable living situation, a good family, and a great circle of friends. I preoccupy myself with blogging, writing fiction and non-fiction. I’m currently reading Samuel Beckett’s Watt, John Maynard Keynes’ The General Theory, and a ton of literature about a recent philosophical trend called speculative realism. I want to study economics and philosophy in college and maybe delve into disability studies.
Still, I can’t help but shake that last realization. It’s weird because the answer to the question of this thread (“When did you realize?”) for me is that: I still haven’t. I mean, life can’t hit you all at once because if it did it would kill you. And so it just happens in pieces, in micro-realizations. Ah, I guess I had a micro-realization just now.
Anyway, I’ve written a little too much. It’s high time I shut up! Sorry for the wall of text! I really hope it’s not obnoxious...
As far as diseases go, SMA keeps a very strict schedule. First this happens, then that happens, etc. And even though it progresses at different paces for different people, it always progresses. You can see why it’s so easy to relate. We all go through the same life stages, jump the same hurdles.
I guess this is what really made me want to respond:
Something inside me just turned off and I didn’t know how to be a kid again.
That was a bit of a mindblower when I first read it because I know exactly what that was like. I jumped that same hurdle when I was 8. It was a very defining moment for me, one which looks in retrospect to have initiated a lot of the subsequent developments in my person -- kind of the way a scream starts an avalanche.
Up until that age, I had it in my head that my disability was just temporary. I was convinced that all I needed was a perfect set of leg braces which I would wear for a long time before shedding in the midst of a passionate Tommyesque sprint, like Forrest does in the “Run, Forrest, run!” scene. I was a weird kid.
Anyway, somebody, I forget who (I think it was my cousin), broke it to me that that’s just not how it works, that I was almost certainly never ever going to walk. I never again trusted that things ran according to a plan. I became a more contemplative, introspective kid, a 10-year-old Sartrean beatnik with an early penchant for dark humor and Weezer.
This new fact took about four years for me to totally absorb. It’s a fact that sort of comes at you in waves of “Yes, this is the case” as opposed to all at once.
When I turned 13, the hormones switched on (just like my ability to be a kid switched off four years earlier) and took all that unrefined kid-confusion and turned into angst and depression and general subjective pandemonium.
It’s weird thinking back on it now since I know how incredibly unhealthy this all was, but between age 13 and about age 16, I was extremely suicidal. The thing is, I couldn’t act on those ideations, even as a “cry for help” thing, because of how physically impaired I already was, and I sure as hell didn’t have the communicative tools to express it, so I just sort of stewed like that in my wheelchair for three years.
High school wasn't that bad because I finally met friends, but graduation was probably the worst time of my life. I was on the brink. I was only 75lbs because of the progressive inability to eat without choking or taking hours on end; I was sick all the time, probably because I was only 75lbs; I was close to death, probably because I was sick all the time; I had been going through another bout of teenage "unrequited love" which ended particularly badly; and to top it all off, I had lost both my abilities to draw (which I was banking on using for a future career in comic books) and to masturbate (which can exacerbate things when everything isn’t going so smoothly, as I’m sure you all can understand).
All that tension got released that summer after graduation when I had a feeding tube installed. I gained all my weight back plus a little more, got healthier, and finally faced someone telling me that she couldn’t be with because of my disability after years of suspecting that that was my problem with girls in the first place (it seems so obvious now, but hindsight is always 20-20).
Then I looked back at the events of the previous year and half and saw how close to dying I actually was (you can’t always tell how bad it is when you’re in the thick of it). That made romantic rejection look like the ice capades.
Just like the huge series of realizations I had had before about never walking and girls never being into me except for a possible few, realizations that ultimately surround the same basic premise that this, this right here, is real, I had another realization then, although this one was much heavier: I’m probably going to die from this.
That was four years ago and I’m still trying to wrestle with it. My lifestyle has become a tad fatalistic since then, I have to admit. Nothing serious, just a healthy amount of alcohol on the weekends, expensive food all the time, and the occasional sexworker.
I dropped out of college because of depression and because I have difficulty learning according to a course-curriculum (meaning I skip ahead way too often out of boredom). However, I’m looking forward to getting back into college once I get my head screwed on tight.
I’m seeing a therapist in two weeks (yikes). I’m lucky to have a stable living situation, a good family, and a great circle of friends. I preoccupy myself with blogging, writing fiction and non-fiction. I’m currently reading Samuel Beckett’s Watt, John Maynard Keynes’ The General Theory, and a ton of literature about a recent philosophical trend called speculative realism. I want to study economics and philosophy in college and maybe delve into disability studies.
Still, I can’t help but shake that last realization. It’s weird because the answer to the question of this thread (“When did you realize?”) for me is that: I still haven’t. I mean, life can’t hit you all at once because if it did it would kill you. And so it just happens in pieces, in micro-realizations. Ah, I guess I had a micro-realization just now.
Anyway, I’ve written a little too much. It’s high time I shut up! Sorry for the wall of text! I really hope it’s not obnoxious...