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"Always accept yourself the way you are."
Sep. 21st, 2011 02:01 pmAccording to the unerring wisdom of the local Chinese takeout's fortune cookie's slip of blue-printed paper, anyway. It did elicit a wry smile on my part.
So much has happened in the last eleven years of my life. Curiously, and often to my chagrin, much of the details elude me. Perhaps it's my hind-brain's way of smoothing over, fogging out, overwhelming events. A turbulent relationship, followed by Reemul's unexpected death, followed by a passionate yet disturbing relationship with a married woman, followed by the unexpected deaths of Meeka and Miriam. Then my three major health scares; the deep vein thrombosis resulting in invasive surgery, two bouts of dire and sudden sepsis (blood poisoning) from mysterious urinary tract infections. Not to mention the on-line dramas that occurred, which pale in comparison to the big events... the real events, aforementioned. Why, then, do such small events, events that mean nothing in the grand scheme of things, niggle at me with more intensity than the bigger, real problems? Is it all a mental trick designed to place my focus on petty grievances to distract myself from the real issues beyond my control?
Maybe. That actually sounds reasonable. Thanks for the creative distraction, hind-brain. I just wish you'd keep my heart from hurting at such petty grievances.
I'll be 40 come May. While not a big deal to most, this is strange and, well, remarkable to me (as reaching such an age is to most with a neuromuscular disease that was diagnosed in childhood). As one, misdiagnosed at 14 then rightfully diagnosed at 18, the elephant in the room was the iteration that I'd be lucky to reach 30, and if I reached that I'd be incapable and totally dependent. I proved this notion wrong, though by 32 the DVT hit and the blood clots nearly snuffed out my brief candle, so to speak. Since then all has been, for lack of an eloquent descriptive, going to hell in a hand basket. Those of us diagnosed with degenerative neuromuscular disease as children were simply not expected to live to this age. We were never given advice on how to cope with, or desire to survive despite, our catastrophic physical disabilities.
It's not merely the overwhelming sense of physical futility and helplessness. There's such a biting emasculation to it. I'm nearly 40, yet live at home, utterly dependent on my parents, home health care aides, and friends for everything, from bathing to using the bathroom to eating to handling objects. It's difficult not to imagine myself as a perpetual child in some ways, an old infant. I fully recognize how lucky I am to have such down to earth, open minded, responsible parents--were it not for their selflessness and diligence, I wouldn't have survived half this long.
I still yearn for physical intimacy, yet I know that can only be attained in dreams now. It chokes me up, hits me hard in the gut, but I'm not deluded enough to imagine anyone seeing past my myriad physical needs, my obvious mortality, to go there. This is for the best, as my prior track record tended toward unhealthy situations at best. Also, my expectations and desires aren't necessarily realistic. I fall too hard for characters and singers, not real people.*chuckles*. Masturbation? Sure the need's there, but I haven't been able to, erm, relieve the pressure for four years. It's irksome and sad to be unable to do anything about it but let it go.
In my teens and twenties I swore to myself that I'd never be in the condition I'm in now. I never allowed being in a wheelchair to hold me back. I did whatever I wanted. My disability was a non-issue; I went camping, clubbing, dancing, partying, traveling, to cons, to concerts. I was outspoken, even vibrant. Nothing was gonna change that... nothing was supposed to change that... yet, inexorably, time itself did. With a little help from 25 years of living with a degenerative neuromuscular disease, 12 years with Diabetes type 1 (aka juvenile), and three long hospital stays, of course.
What is it that propels me forward at this point? Intellectual curiosity. A keen desire to see how things turn out, how things change as they inevitably will. Books are my best friends and sometimes lovers, as are film and music. So, in effect, I haven't changed much at my core, save to strip away social proclivities.
Can I accept myself the way I am? Can anyone? I don't know. I don't know that I can ever accept all of my losses, my constant changes and struggle. I've burned so many bridges, or had them burned for me, that my sense of trust in others and want for camaraderie is minimal. For years this relative isolation upset me, and I pined for the thriving social network of my teens and twenties. Now I'm finally at peace with this particular development. For this peace I'm grateful--it's been a long time coming.
This train of thought fits in well with the other night's dream. Interesting.
And, for levity's sake, my existence isn't entirely pitiable. I still cling to my often dark wit, and revel in childish bouts of laughter with the boys. Nature walks with the boys keep my chin up and my soul unfettered. The horror genre, often referred to as dark fiction now, serves as my life raft, which is odd in itself and deserves its own essay tomorrow. Then, the photos from September 3rd... honest. >;-)
So much has happened in the last eleven years of my life. Curiously, and often to my chagrin, much of the details elude me. Perhaps it's my hind-brain's way of smoothing over, fogging out, overwhelming events. A turbulent relationship, followed by Reemul's unexpected death, followed by a passionate yet disturbing relationship with a married woman, followed by the unexpected deaths of Meeka and Miriam. Then my three major health scares; the deep vein thrombosis resulting in invasive surgery, two bouts of dire and sudden sepsis (blood poisoning) from mysterious urinary tract infections. Not to mention the on-line dramas that occurred, which pale in comparison to the big events... the real events, aforementioned. Why, then, do such small events, events that mean nothing in the grand scheme of things, niggle at me with more intensity than the bigger, real problems? Is it all a mental trick designed to place my focus on petty grievances to distract myself from the real issues beyond my control?
Maybe. That actually sounds reasonable. Thanks for the creative distraction, hind-brain. I just wish you'd keep my heart from hurting at such petty grievances.
I'll be 40 come May. While not a big deal to most, this is strange and, well, remarkable to me (as reaching such an age is to most with a neuromuscular disease that was diagnosed in childhood). As one, misdiagnosed at 14 then rightfully diagnosed at 18, the elephant in the room was the iteration that I'd be lucky to reach 30, and if I reached that I'd be incapable and totally dependent. I proved this notion wrong, though by 32 the DVT hit and the blood clots nearly snuffed out my brief candle, so to speak. Since then all has been, for lack of an eloquent descriptive, going to hell in a hand basket. Those of us diagnosed with degenerative neuromuscular disease as children were simply not expected to live to this age. We were never given advice on how to cope with, or desire to survive despite, our catastrophic physical disabilities.
It's not merely the overwhelming sense of physical futility and helplessness. There's such a biting emasculation to it. I'm nearly 40, yet live at home, utterly dependent on my parents, home health care aides, and friends for everything, from bathing to using the bathroom to eating to handling objects. It's difficult not to imagine myself as a perpetual child in some ways, an old infant. I fully recognize how lucky I am to have such down to earth, open minded, responsible parents--were it not for their selflessness and diligence, I wouldn't have survived half this long.
I still yearn for physical intimacy, yet I know that can only be attained in dreams now. It chokes me up, hits me hard in the gut, but I'm not deluded enough to imagine anyone seeing past my myriad physical needs, my obvious mortality, to go there. This is for the best, as my prior track record tended toward unhealthy situations at best. Also, my expectations and desires aren't necessarily realistic. I fall too hard for characters and singers, not real people.*chuckles*. Masturbation? Sure the need's there, but I haven't been able to, erm, relieve the pressure for four years. It's irksome and sad to be unable to do anything about it but let it go.
In my teens and twenties I swore to myself that I'd never be in the condition I'm in now. I never allowed being in a wheelchair to hold me back. I did whatever I wanted. My disability was a non-issue; I went camping, clubbing, dancing, partying, traveling, to cons, to concerts. I was outspoken, even vibrant. Nothing was gonna change that... nothing was supposed to change that... yet, inexorably, time itself did. With a little help from 25 years of living with a degenerative neuromuscular disease, 12 years with Diabetes type 1 (aka juvenile), and three long hospital stays, of course.
What is it that propels me forward at this point? Intellectual curiosity. A keen desire to see how things turn out, how things change as they inevitably will. Books are my best friends and sometimes lovers, as are film and music. So, in effect, I haven't changed much at my core, save to strip away social proclivities.
Can I accept myself the way I am? Can anyone? I don't know. I don't know that I can ever accept all of my losses, my constant changes and struggle. I've burned so many bridges, or had them burned for me, that my sense of trust in others and want for camaraderie is minimal. For years this relative isolation upset me, and I pined for the thriving social network of my teens and twenties. Now I'm finally at peace with this particular development. For this peace I'm grateful--it's been a long time coming.
This train of thought fits in well with the other night's dream. Interesting.
And, for levity's sake, my existence isn't entirely pitiable. I still cling to my often dark wit, and revel in childish bouts of laughter with the boys. Nature walks with the boys keep my chin up and my soul unfettered. The horror genre, often referred to as dark fiction now, serves as my life raft, which is odd in itself and deserves its own essay tomorrow. Then, the photos from September 3rd... honest. >;-)
