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 By Michael J. Coppi Jan. 28, 2005 I'm not especially selective about where, geographically, we live. As long as there's some 110 volt outlets [Ok, so forget Europe] & phone jacks [guess that leaves out a few oceans, forests & deserts] within local AT&T dialup capability of my ISP [well, I should've just said "anywhere near a US urban center" to start with], I can adapt. As far as I'm concerned, "home" is where the computer is. Oh yeah, my wife is inevitably there too. Luckily I've become accustomed to maneuvering around UHaul crates. Kathleen is very slow (better make that "not known") to unpack boxes. Eight years in this apartment and my typewriter is still in cardboard storage. By the time it ever sees the light of my office fluorescence again, I should be able to sell it as an antique on eBay. Actually it's just a humble adobe [no spelling error there - cracks in the walls reveal the original construction base, "reinforced" by 15 layers of paint]. I immediately confiscated one of the 2 laundry rooms [turns out they're bedrooms - real estate prices increase exponentially in California for each additional square inch of space] to use as a primitive cyber-frontier post. My dad transformed the door of the wardrobe area [as it was labeled on the floorplan - I had thought it was where the washing machine went] into a desk. I didn't need a chair because I already had one, but I get to come out of the closet *every* day. Really a liberating experience. **************** 30 years ago, such routine self-expression was unthinkable. I tried to hide it, but by around 1978 it became very apparent that my gait was abnormal and worsening. Various situations terrified me: the prospect of a flight of stairs with no handrail, someone on the other side of the room asking me to bring them a hot cup of coffee [try doing that without spilling any after approximating a lack of balance by drinking several glasses of Romulan Ale], attempting to traverse the uneven sand of a beach, seeing a stream to be crossed only by jumping from rock to rock, going through a museum full of priceless, fragile vases [negotiating a field of landmines might be comparable]. Man, did I admire tightrope performers and Olympic gymnasts. There was no previous history in our known family of anyone displaying such symptoms, so I drifted amongst various specialists for a few years until being diagnosed with Friedreich's Ataxia ["FA"] at UCLA in 1980 [after undergoing some testing that would have pleased Boris Karloff, since simple genetic blood sampling was not yet available]. I'm the eldest of 6 siblings. As it turns out, 3 of us have FA and 3 don't. The *theoretical* odds of inheriting an autosomal recessive illness such as many forms of Ataxia [no, that's not an Italian cab], when both parents are carriers, is 25%. If 2 carriers had 1000 offspring, one could expect about 1/4 to be affected. When smaller "populations" are considered, however, the ratio may seem skewed. This can be compared to tossing a coin. If you flipped it 5 times, you *might* get all "heads". But after tossing it 5000 times, the percentage of "heads" to "tails" would be closer to 50/50. Never partake in "genetic gambling" at Las Vegas. ************************ Although in hindsight (realizing now that symptoms are progressive) it was rather absurd, I refused to "give-in" to a wheelchair until I broke my leg in 1984, basically "forcing the issue" [using crutches requires more balance than walking]. By that time, I was living independently on the Central Coast of California working as an Aerospace Engineer (I had somehow managed to traverse the hilly terrain of the Cal Poly Pomona university campus long enough to obtain a B.S. in 1982) at Vandenberg Air Force Base. The wheelchair that I had dreaded so much now became a tremendous asset! No longer was I "exiled" to my desk, reluctant to stumble 50 feet down the hall to submit a report to the secretary. I was "free" to interact with people throughout the building. In fact, I soon discovered some distinct advantages accorded to wheelchair usage at work and beyond: Riding in a wheelchair can also be a great way for single guys to meet women, especially if you have a notice on the back of the chair such as: Free Lap Rides Females Only ******************** The symptoms of FA also have other merits, such as affording me a complete immunity to motion sickness. Since a lack of equilibrium is one of the primary manifestations of my affliction, you might say I have permanent vertigo. Having thus "gotten used to it," I find that I'm immune to becoming dizzy or otherwise submitting to the effects of random disturbances (although some may argue that this is a disadvantage in California since I rarely detect earthquakes - perhaps instead I should become a pirate and spend my life on a ship, where I'd never get seasick. I also have a slightly irregular heartbeat. I go once a year to get an EKG. The technicians are always aghast at the fact that my heart skips a beat every now and then. I see no reason for alarm though. I figure that every beat missed is a beat saved. With so many accumulated saved beats, that particular organ should last a lot longer. I could never understand why an electrocardiogram is called an "EKG." Do doctors think "cardio" starts with a "K"? (I listened to an audio rendering of this arrhythmia once, and discovered that the beat sounded very much like the theme to "Bonanza." Maybe I watched too many westerns when I was younger). ******************** I remained fairly independent until about 1989 (being able to put the wheelchair in/out of the trunk, drive where necessary, take care of all personal needs). By this time, I had gotten married and transferred to Kennedy Space Center in Florida. But as my condition deteriorated, certain tasks became impossible to perform and by 1992 I found it necessary to go on disability from work. We drove back to California. Geez!! Talk about an acid test of my patience (with Kathleen driving)! You know those women drivers (no offense to female readers). ********************* The curious-minded will happily note that I have included a link to a photo in the byline at the end of this article. People are just NEVER as we imagine, so I always try to picture the worst. I envision unseen women encountered online as frazzle-haired, buck- toothed, pimple-faced wenches wearing horn-rimmed glasses. Cinderella's stepsister Prunella, at best. I'm certainly not exactly Harrison Ford myself (Kathleen has me growing this black & gray beard, prompting my dad to remark that I was trying to take after Fidel Castro [What?! How about Sean Connery? Well, not quite. Now one sister noted "a skinny version of Saint Padre Pio," but I don't claim ANY degree of 'piousity.' Then there my more blunt brother who discerned a likeness to Osama bin laden. No comment]). As for my head, it wasn't always so desolate. For a truly HAIR-raising experience, truly adventuresome individuals may search on....... Arcadia Apaches, Yearbook, 1978 ......if you dare! ------------ About the author: Mike Coppi is a freelance writer from Arcadia, California. Email: mjcoppi@cs.com Tell a friend about this site! ------------ All articles are EXCLUSIVE to Useless-Knowledge.com and are not allowed to be posted on other websites. ARTICLE THIEVES WILL BE PROSECUTED! |
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