About Me

  • Gender Male
  • Age 58
  • Relationship Divorced

My Story 1 Appreciate this

My MS story starts when I was a teenager in the US Army. I started have sporadic symptoms of what I now know is MS. These ranged from optic neuritis symptoms (blurriness, "shiny confetti") and legs that would "fall asleep" for minutes at a time and be numb for a day or so. When these became more frequent the problem was I was an Army platoon sergeant with 30 or so soldiers I was responsible for. I couldn't be sick, I was trained to lead by example. Plus, all those symptoms had "logical" explanations and could be easily excused and written off. Blurry eyes? We spent hours looking through binoculars and laser targeting devices, so who wouldn't have blurry eyes? Aches, pains, and numbness? In Alaska we literally walked over mountains in winter for weeks at a time at 30, 40 and 50 below zero -- who wouldn't have gripes about that? One mantra among Army combat arms units was "pain is weakness leaving your body" -- there was a plausible excuse for all my symptoms. <strong>Diagnosis</strong> After 8 years in the Army I got out and started working in the civilian sector and soon I had my first major MS attack. It started with a tingling feeling in my left thumb that then spread to my hand and arm. And then the diagnosis phase started. Electric shocks to measure the speed in my nerves, spinal taps, and then MRIs, which were pretty cutting edge in the late 80s. After months a neurologist lowered the boom and told me I had MS. And then the real "fun" started with a variety of symptoms in my legs and eyes. For about a week I could not walk and could not see -- that was a wake-up call! I was bummed thinking of how I was going to provide for my wife and four kids, and thought I should learn braille since I couldn't see. The only problem with that was that my hands were so numb there was no way I could feel the bumps of braille writing! Steroid treatments that induced "roid rage" and all sorts of fun with doctors began. Asking what I could do about this disease, a neurologist recommended that I enroll in an experimental chemotherapy in an out-of-state hospital. No patient ever wants to hear the word "chemotherapy" coming out a doctor's mouth. And when you put the word "experimental" in front of it the word becomes even worse. It was about this time I started thinking doctors didn't know that much about this disease and, worse, there wasn't a whole lot they could do about it. My attitude was that I needed to cope with this disease mainly on my own. Fortunately, those major symptoms in my eyes and legs disappeared or dramatically reduced as mysteriously as they arrived. Great, though I was left with a left hand that was mainly cosmetic and not very functional. <strong>Benefits of MS</strong> That initial MS attack was useful, however. It caused me to rethink the definition of being a man, analyze the meaning of life, and put a great deal of thought into how I was going to raise and what to teach my children if they had a father who was blind and in a wheelchair. This caused me to delve deeply into theology and eastern philosophy and in the process allowed me to jettison years of military brainwashing and indoctrination. Without MS it is highly likely that never would have happened. Though I was physically challenged by MS, mentally I became a much better human being because of this damned disease. <strong>Life with MS</strong> Over the bulk of my late 30s and 40s I was able to rack up college degrees, work at many fun jobs, and lead a semi-normal life. But no matter what I appeared on the outside, I knew that I had MS. Over the years I have tried a variety of alternative treatments, everything from bee venom therapy to cannabis to radical changes in diet. While some do indeed have impacts, unfortunately I have not discovered a magic cure. Living with MS my default mode was to hide the fact that I had the disease. Since I was right-handed, hiding my left hand was easy. The vast majority of people don't notice MS details like a neurologist does, so a combination of compensating and not complaining or talking about the disease worked pretty well. There are pluses and minuses to such a hiding strategy. At work timely vacations could hide an attack or flare-up, and even some of my family members thought I did not have anything wrong with me or was "faking it." The big minus is that such camoflage reduces human interactions and sympathies and, of course, there comes a time when one cannot hide MS no matter how hard you try. That's the stage I'm at now. <strong>Nervous systems</strong> My last attack put me in a wheelchair for a couple of months, and I credit stubbornness and a contrarian attitude in me getting back to using "Canadian crutches" and then to walking. Some of the "fun" of the disease is discovering the various parts of your body that MS can impact. For example, one day I awoke with a metallic taste in my mouth which disappeared in a day or so. My surprise was discovering I lost my sense of taste. If you ever want to lose weight, just kill your sense of taste -- it really takes the fun out of eating! When impacted with those types of things, what are you going to do? You can whine and complain about them, but trust me, that gets old and doesn't do much good. And since you cannot do much about them, you might as well put a happy spin on them, right? Whether you laugh with sarcasm or dark humor, or if you cry is a choice. And to me laughing is a helluva lot more fun than crying.

Interests

Living Well with MS Emotional support, Healthy living, Healthcare
Getting Involved Advocacy, Volunteering
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