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This isn't intended to elicit pity or upset, or misplaced guilt. This isn't to invoke any feelings in others. If it does, so be it. This is simply me, emoting, because I need to. No, I am not suicidal--never have been, never will be. I'm being forthright, honest, and candy-coating nothing; thus, if you're ill-prepared for frank discussions of disability, health issues, the emotional impact of them, and the uncertainties stemming from them, read no further.
Also, know that my experiences and condition in no way reflect everyone's with either Friedreich's Ataxia or Type 1 Diabetes. FA, being a degenerative neuromuscular disorder, truly effects each individual differently. Diabetes Type 1, until recently titled Juvenile Diabetes, while not a neuro- disease, nonetheless effects the individual differently (as with FA, some are disabled younger than others, some are effected worse than others ever are, etc.)
One last thing: I'm disabling comments, simply because I'm not looking to start a conversation regarding this. Not that I don't appreciate your thoughts on the subject matter. I have a lot of difficulty discussing these things without succumbing to a complete blubbering mess. So, no comments here, no calls wanted, nothing. Simply emoting, and knowing I'm being heard/read by people I respect, is all I need.
My ruminations began in earnest on Saturday, after viewing the excellent 2009 account of the band Joy Division's rise to fame and lead singer Ian Curtis's suicide, Control. It angered me that Ian, diagnosed with epilepsy at the same age I was when I was finally diagnosed with Friedreich's Ataxia, chose to embrace his diagnosis as a death sentence and allowed it to be an excuse for his adultery and inability to commit. I was pissed off, initially, particularly when reflecting on Ian's musical and lyrical talent, and how he blew it all off when he offed himself. Pissed off, in particular, because he wasn't a fool, and he could've researched his condition to satisfy his questions to some extent. Yes, he had a lot going on, not just the epilepsy--but that was the recurring theme through it all.
The more I ruminated on the movie and my reactions to it, a realization dawned on me. I was upset at Ian's actions which, given time, I myself have adopted. Or, perhaps more appropriately, adapted. I'll be 39 this year, when it was pressed upon me from the age of 18 that I'd be dead by 30. That in itself is such a strange feeling, to have had that specter looming for so long, and to not have expired when told. As if predictions were guarantees...
With that reminder of an expiration date niggling at the back of my subconscious, I became passive-aggressive with myself. I sabotaged career opportunities and relationships. After 26 I stopped writing with intent to be published. Some folks, when given a projected finite amount of time, whip out books or other works with a fevered passion. I feel cheated; rather than have that affect, I instead began to retreat. I became my own ghost, prematurely.
I caused a big internal stink back in 1999 when I had to give up my apartment and independence. I believed all of my non-online friends had abandoned me, unable to deal with being confronted by my diminishing physical capability, and thus their own frailty, their own mortality. In retrospect, while some of that was no doubt true, a lot of what I chose to perceive as me being abandoned was, in fact, me subconsciously withdrawing. Okay, not so much subconsciously, as literally. Up to this point, I refused to allow my life's circumstances to hold me back in a physical sense. From the age of 16 I shaved, teased, and dyed my hair in numerous ways. I wore the oddest personal fashion. I had no fear being seen and sticking out; being in a wheelchair, I did so anyway, but with my appearance there was control. A sense of control that also gave me great expressive freedom. I traveled, went wheelchair-dancing constantly at clubs, attended many concerts, maintained a busy social life, all up 'til the return home in 1999.
In 1997 Diabetes reared up and took notice of my state. I had a hell of a time adjusting to it. Initially I had an allergic reaction to insulin, followed by a reaction to the (soon after, recalled, pills). Once that leveled out, after a few years, it all seemed fairly manageable. Then, not until 2010, after a referral to an endocrinologist, was I actually tested for the type of Diabetes I had. One would think, upon my initial diagnosis, I'd have been seen by an endocrinologist, but I suppose that would've been too logical. As it happened, in 2010 I discovered that all along this has been Type 1 (or Juvenile) Diabetes. As such, the Metformin pills I'd been taking in conjunction with the insulin, 5000 mg daily for 13 years, were for naught. Metformin doesn't help with Diabetes Type 1. I quit the Metformin then and there, of course, with no telling what the unnecessary, prolonged use of it in the first place caused.
By 2000 I had to stop dancing and clubbing. My body simply wouldn't cooperate as it had. I couldn't drink anymore, as it wreaked havoc with my blood sugar, and the reason for drinking at the clubs had always been to relax my taut muscles. It helped me move fluidly as I danced, and kept my feet from spasming off the foot rests. The smoke in the clubs began to effect me more than ever before, the proverbial icing on the cake. Reality slapped me upside the head, and it wasn't a reality I liked. I had become dependent, with only worse to come. Degenerative, progressive; such things do not a positive future paint.
There were two close-calls: Deep Vein Thrombosis in late 2003. Roto-rootered out several clots, implanted two stints and a filter in my right femoral artery. In 2010 had a freak virus that wreaked havoc with my blood sugar, breathing, muscle spasms, speech, and digestive system. Took a long time to recover. The full use of my hands never returned.
Next Wednesday my motorized chair arrives, ushering in a new chapter. While necessary and a welcome addition, this serves again to acknowledge my disability and growing level of need. To be utterly frank, my dad wipes my ass on the toilet. Any idea how emasculating that is? Puts a lot into perspective, actually. I haven't been intimate with a woman in 11 years. I've yet to figure out how to masturbate since my fingers began curling up. I've never ceased to be sexual, yet I've had no choice but to, well, give up. That's, sadly, reality.
I can't be without my parents. That's not me being dramatic. That's truth. I can't--won't--let a nursing home absorb me. Makes it hard to gaze into the future, to make big plans, pursue dreams, when the end must come before my parents go. I will not be done in by another freak and uncomfortable virus; I will not succumb to blood clots, heart attack, or worse. It's the when that's the question. When is enough enough? How unfair a thing to even have to ponder.
Also, know that my experiences and condition in no way reflect everyone's with either Friedreich's Ataxia or Type 1 Diabetes. FA, being a degenerative neuromuscular disorder, truly effects each individual differently. Diabetes Type 1, until recently titled Juvenile Diabetes, while not a neuro- disease, nonetheless effects the individual differently (as with FA, some are disabled younger than others, some are effected worse than others ever are, etc.)
One last thing: I'm disabling comments, simply because I'm not looking to start a conversation regarding this. Not that I don't appreciate your thoughts on the subject matter. I have a lot of difficulty discussing these things without succumbing to a complete blubbering mess. So, no comments here, no calls wanted, nothing. Simply emoting, and knowing I'm being heard/read by people I respect, is all I need.
My ruminations began in earnest on Saturday, after viewing the excellent 2009 account of the band Joy Division's rise to fame and lead singer Ian Curtis's suicide, Control. It angered me that Ian, diagnosed with epilepsy at the same age I was when I was finally diagnosed with Friedreich's Ataxia, chose to embrace his diagnosis as a death sentence and allowed it to be an excuse for his adultery and inability to commit. I was pissed off, initially, particularly when reflecting on Ian's musical and lyrical talent, and how he blew it all off when he offed himself. Pissed off, in particular, because he wasn't a fool, and he could've researched his condition to satisfy his questions to some extent. Yes, he had a lot going on, not just the epilepsy--but that was the recurring theme through it all.
The more I ruminated on the movie and my reactions to it, a realization dawned on me. I was upset at Ian's actions which, given time, I myself have adopted. Or, perhaps more appropriately, adapted. I'll be 39 this year, when it was pressed upon me from the age of 18 that I'd be dead by 30. That in itself is such a strange feeling, to have had that specter looming for so long, and to not have expired when told. As if predictions were guarantees...
With that reminder of an expiration date niggling at the back of my subconscious, I became passive-aggressive with myself. I sabotaged career opportunities and relationships. After 26 I stopped writing with intent to be published. Some folks, when given a projected finite amount of time, whip out books or other works with a fevered passion. I feel cheated; rather than have that affect, I instead began to retreat. I became my own ghost, prematurely.
I caused a big internal stink back in 1999 when I had to give up my apartment and independence. I believed all of my non-online friends had abandoned me, unable to deal with being confronted by my diminishing physical capability, and thus their own frailty, their own mortality. In retrospect, while some of that was no doubt true, a lot of what I chose to perceive as me being abandoned was, in fact, me subconsciously withdrawing. Okay, not so much subconsciously, as literally. Up to this point, I refused to allow my life's circumstances to hold me back in a physical sense. From the age of 16 I shaved, teased, and dyed my hair in numerous ways. I wore the oddest personal fashion. I had no fear being seen and sticking out; being in a wheelchair, I did so anyway, but with my appearance there was control. A sense of control that also gave me great expressive freedom. I traveled, went wheelchair-dancing constantly at clubs, attended many concerts, maintained a busy social life, all up 'til the return home in 1999.
In 1997 Diabetes reared up and took notice of my state. I had a hell of a time adjusting to it. Initially I had an allergic reaction to insulin, followed by a reaction to the (soon after, recalled, pills). Once that leveled out, after a few years, it all seemed fairly manageable. Then, not until 2010, after a referral to an endocrinologist, was I actually tested for the type of Diabetes I had. One would think, upon my initial diagnosis, I'd have been seen by an endocrinologist, but I suppose that would've been too logical. As it happened, in 2010 I discovered that all along this has been Type 1 (or Juvenile) Diabetes. As such, the Metformin pills I'd been taking in conjunction with the insulin, 5000 mg daily for 13 years, were for naught. Metformin doesn't help with Diabetes Type 1. I quit the Metformin then and there, of course, with no telling what the unnecessary, prolonged use of it in the first place caused.
By 2000 I had to stop dancing and clubbing. My body simply wouldn't cooperate as it had. I couldn't drink anymore, as it wreaked havoc with my blood sugar, and the reason for drinking at the clubs had always been to relax my taut muscles. It helped me move fluidly as I danced, and kept my feet from spasming off the foot rests. The smoke in the clubs began to effect me more than ever before, the proverbial icing on the cake. Reality slapped me upside the head, and it wasn't a reality I liked. I had become dependent, with only worse to come. Degenerative, progressive; such things do not a positive future paint.
There were two close-calls: Deep Vein Thrombosis in late 2003. Roto-rootered out several clots, implanted two stints and a filter in my right femoral artery. In 2010 had a freak virus that wreaked havoc with my blood sugar, breathing, muscle spasms, speech, and digestive system. Took a long time to recover. The full use of my hands never returned.
Next Wednesday my motorized chair arrives, ushering in a new chapter. While necessary and a welcome addition, this serves again to acknowledge my disability and growing level of need. To be utterly frank, my dad wipes my ass on the toilet. Any idea how emasculating that is? Puts a lot into perspective, actually. I haven't been intimate with a woman in 11 years. I've yet to figure out how to masturbate since my fingers began curling up. I've never ceased to be sexual, yet I've had no choice but to, well, give up. That's, sadly, reality.
I can't be without my parents. That's not me being dramatic. That's truth. I can't--won't--let a nursing home absorb me. Makes it hard to gaze into the future, to make big plans, pursue dreams, when the end must come before my parents go. I will not be done in by another freak and uncomfortable virus; I will not succumb to blood clots, heart attack, or worse. It's the when that's the question. When is enough enough? How unfair a thing to even have to ponder.
