Incorporating both sensory motor neuropathy and peroneal atrophy with an uncommon level of pain severity results in eliminating the possibility of being classified in the most common subtypes of CMT. Despite genetic testing and EKG's, all test prove to be inconclusive and nothing can be done to confirm which rare subtype I have; outside of a dangerous and experimental nerve biopsy. Basically meaning that because I fall within the smallest percentile of those who have CMT, I'm a low-importance in research and treatment. Theoretically, a cure for CMT could be found and it still would not be of any help to me.
I've shown oddly advanced symptoms at a young age. Experiencing weakness, pain, and muscle tremors in my hands and lower body. It cannot be predicted whether or not I will develop problems with my breathing, vocal cords, optical control, equilibrium, gastrointestinal system, or spinal stability... these have appeared in the rare percentile of patients in which I am considered. What sets me apart from those patients and completely eliminates me from taking part in experimental treatments and drug trials is my other conditions, injuries, and operations that are unrelated to my Muscular Dystrophy.
I have had eight concussions, a scratched cornea in my right eye, a repeatedly dislocated left shoulder, a cracked solar plexus, and three inoperable herniated disks. My right knee was scoped and I've endured sprained or torn leg & pelvic muscles. I've broken all my fingers, toes, ankles, ribs, wrists, and my nose on multiple occasions. I've popped my ear drums several times, needed numerous minor cosmetic reconstructive surgeries, and I'm about to undergo complete dental reconstructive surgery in the near future.
In my early teens, I developed an addiction to morphine and other painkillers. I have had three major relapses since then which were followed by three spiritually-altering detoxing periods. The first moved my beliefs from unsure to christian, the second from christian to atheist, and the last detox moved my beliefs from atheist to something that I just cannot describe. I wouldn't categorize it as agnostic, but I actually wouldn't try to or want to categorize it at all. I was with Anne during my last relapse and detox. So when I got through it all, I felt that I had realized a personal understanding and indifference towards any powers that may be. I did know, with absolute certainty, that there was someone watching over me and that they would always be there to help me through the toughest times in life... that just turned out to be Anne.
According to a psychologist (whom I have little respect for) that I had been assigned to as a part of my physical & occupational therapy, I showed the signs of a few different types of social phobia's. One of them was Basiphobia (fear of walking or standing) with the core origin of that fear stemming off of a possible case of Dysmorphophobia (fear of a bodily defect not noticeable to others). This sat oddly well in my mind since I was probably the only person to ever be happy to go from walking unassisted to using a cane. Not just because I fall down a lot, from either tripping over my drop-foot or my knee just giving out, but because it strangely made me feel more independent. Before I had my cane, I only felt comfortable around a few select people that knew I needed (but was too proud to ask for) help sometimes. Even some close friends were too oblivious to know when I was struggling. For the longest time, my friend Monica from OHS even didn't believe that I had Muscular Dystrophy. You can't blame her though because all she had to go on at the time was my word, which doesn't mean much to most.
Strangers would give me so much shit when I politely asked for help with opening a door or letting me walk near a handrail. I think that's why I grew out my hair for dreadlocks and got facial piercings... because people then tended to leave me alone or get out of my way. When I got my cane, people would be embarrassed if they were blocking the elevator door or offer me their seat in a crowded cafe... which I always met with a humored smirk. On top of falling over less often, I could silently make others aware that I was struggling without having to make myself ashamed about it. I didn't feel any kind of self-consciousness from sticking out of the crowd. I had already made myself the dark kid with crazy hair and metal in his face, plus I finally felt more like me. The headbanger image was just not who I was. I worked with some bands, even sang in a few groups, and I had more than my share of degenerate friends in trench coats. But in my mind, I always thought of myself as the martial artist. I never felt comfortable as the headbanger... despite how awesome I pulled it off in my humble opinion! The cane gave me back who I really was. I was a fighter who couldn't fight anymore. I think that also gave me an excuse for the cane that wasn't based on my Muscular Dystrophy. In my head, I was using the cane because of injuries that took away my ability to fight and to coach. At least there is more truth in that manifestation than the headbanger could have ever represented.
The cane took away so many of these lies... but now the realization is that under all of the masks, I am in more pain than ever before. It has nothing to do with anything I ever did to my body in the past and there is no way to relieve it. I am disabled, handicapped, and in denial about it all. It takes everything I have to not let it define who I am. I cannot be the cripple. But it won't let me be the martial artist. Quite frankly, I don't know what to do about it.
In my early teens, I developed an addiction to morphine and other painkillers. I have had three major relapses since then which were followed by three spiritually-altering detoxing periods. The first moved my beliefs from unsure to christian, the second from christian to atheist, and the last detox moved my beliefs from atheist to something that I just cannot describe. I wouldn't categorize it as agnostic, but I actually wouldn't try to or want to categorize it at all. I was with Anne during my last relapse and detox. So when I got through it all, I felt that I had realized a personal understanding and indifference towards any powers that may be. I did know, with absolute certainty, that there was someone watching over me and that they would always be there to help me through the toughest times in life... that just turned out to be Anne.
According to a psychologist (whom I have little respect for) that I had been assigned to as a part of my physical & occupational therapy, I showed the signs of a few different types of social phobia's. One of them was Basiphobia (fear of walking or standing) with the core origin of that fear stemming off of a possible case of Dysmorphophobia (fear of a bodily defect not noticeable to others). This sat oddly well in my mind since I was probably the only person to ever be happy to go from walking unassisted to using a cane. Not just because I fall down a lot, from either tripping over my drop-foot or my knee just giving out, but because it strangely made me feel more independent. Before I had my cane, I only felt comfortable around a few select people that knew I needed (but was too proud to ask for) help sometimes. Even some close friends were too oblivious to know when I was struggling. For the longest time, my friend Monica from OHS even didn't believe that I had Muscular Dystrophy. You can't blame her though because all she had to go on at the time was my word, which doesn't mean much to most.
Strangers would give me so much shit when I politely asked for help with opening a door or letting me walk near a handrail. I think that's why I grew out my hair for dreadlocks and got facial piercings... because people then tended to leave me alone or get out of my way. When I got my cane, people would be embarrassed if they were blocking the elevator door or offer me their seat in a crowded cafe... which I always met with a humored smirk. On top of falling over less often, I could silently make others aware that I was struggling without having to make myself ashamed about it. I didn't feel any kind of self-consciousness from sticking out of the crowd. I had already made myself the dark kid with crazy hair and metal in his face, plus I finally felt more like me. The headbanger image was just not who I was. I worked with some bands, even sang in a few groups, and I had more than my share of degenerate friends in trench coats. But in my mind, I always thought of myself as the martial artist. I never felt comfortable as the headbanger... despite how awesome I pulled it off in my humble opinion! The cane gave me back who I really was. I was a fighter who couldn't fight anymore. I think that also gave me an excuse for the cane that wasn't based on my Muscular Dystrophy. In my head, I was using the cane because of injuries that took away my ability to fight and to coach. At least there is more truth in that manifestation than the headbanger could have ever represented.
The cane took away so many of these lies... but now the realization is that under all of the masks, I am in more pain than ever before. It has nothing to do with anything I ever did to my body in the past and there is no way to relieve it. I am disabled, handicapped, and in denial about it all. It takes everything I have to not let it define who I am. I cannot be the cripple. But it won't let me be the martial artist. Quite frankly, I don't know what to do about it.
wow man. i couldn't relate more. i know exactly how you feel... and that is pretty much unique to us and people like us. i don't know what to do about it either. its been a 30 year battle. its hard to dream when you are so grounded in the harsh realities of physical limitations.
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