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Imagine for a second that you're a perfectly healthy, able-bodied person, minding your own business, walking down a quiet suburban street just after nightfall. Suddenly, you are caught in the tremendous vacuum of a strange whirl of blue light, and you feel yourself abruptly whisked right off the face of the planet. Milliseconds later, you find that you've been deposited on an alien world, transported by some kind of rip in the time space continuum. Hey, it's unlikely, but so was Frank Sinatra marrying Mia Farrow. Shit happens…
After getting up and dusting yourself off, you start to look around. Everything seems fairly normal; the sky is blue, the grass is green, and the sunshine feels warm on your face. You walk around for a bit, and although you don't see any of this new place's inhabitants, you do start to notice certain oddities. Approaching a fairly ordinary looking building, you can't figure out how to use the door. There seem to be way too many knobs and buttons on it, and no matter which you twist or push, the door won't open. You see vehicles on the street, which you recognize as the equivalent of automobiles, but looking in their windows, none of the controls are recognizable. As you make your way towards what appears to be the center of town, you come across a variety of objects that seem familiar but at the same time odd, all of them somehow strangely complex.
You turn a corner onto the main drag, and are shocked to see the residents of this peculiar new world. They have the familiar head and torso of human beings, but instead of two arms, they have four, and on the end of each arm is a hand with 10 fingers. They also have four legs, two pointing forward, and two pointing back, but are able to orchestrate all of these extra limbs with perfect fluidity and grace. Oddly, they notice you, but don't really make too big a deal out of your presence. Certainly, they make no move to harm you, and in fact seen kind of indifferent to you.
After composing yourself, you head to what looks to be a restaurant, and walk through the propped open front door. The scene inside is stunning, the place is filled with these eight limbed, 40 fingered creatures, drinking, eating, and having a good time, while using a variety of exotic tools and utensils that require the use of all of those extra arms and hands and fingers. You take a seat, but it's hard for you to get comfortable, because the chairs and tables are designed to accommodate two extra legs and feet, and the menu is almost impossible for you to open, it's many folds and pages meant to be manipulated by folks with a whole bunch of extra extremities.
Overcome with anxiety, you bolt to the bathroom to splash your face with some cold water. Luckily, the door simply pushes open, but once in the bathroom you find an almost impossible to understand array of gadgets and fixtures, all of which require the use of more extremities than you possess. As you explore the rest of this world, the situation repeats itself over and over again. Everything appears frustratingly familiar, but actually using any of this planet's devices is damn near impossible, all having been designed for beings with abilities far beyond your own.
The above describes the feelings and situations I often experience as a disabled person here on earth. I find myself stuck in a world in which I can no longer easily function. Amidst an abundance of gadgets, conveniences, and everyday items that require ten fingers, two hands, two arms, two legs, and two feet, I find myself at times helpless.
A knife and fork are terrific tools for carving up a meal, unless you're reduced to only using one hand, in which case a fork without its trusted companion, the knife, becomes an instrument of frustration and dismay. Zippers, buttons, shoelaces, and socks might as well be Rubiks cubes, there's no way I'm ever going to figure out how to use them. Showering with one side of your body completely disabled requires creativity on the level of Picasso and the stamina of a triathlete. I spend my days adjusting to life in a world designed by and for creatures with abilities that are now far beyond my own. And since the upshot of having a progressively disabling disease is that it progresses, with new disabilities layering upon older deficits, the act of adjustment is a perpetual process. Settle into one routine, and soon enough that routine is no longer routine, and it's time once again to adjust.
We live in a hyper materialistic society, consumer goods being dangled in front of us by a whirlwind of marketing and advertising. When I was able-bodied, I was as much a sucker for the siren call of the newest, shiniest, and brightest as the next guy. I'd satisfy my cravings for one car, only to have my consumerist fires stoked a few months later by a fancier or faster new model. These days, I could just as easily will myself to fly as to drive a car.
On the corner of my street is an Apple Store, with lines of eager consumers often snaking down my block, all eager to get their fully functional hands on the slickest and most ergonomically designed doodads thought up by Steve Jobs and crew. Ergonomically designed? Ha! As far as I'm concerned, most of those devices might as well be made out of barbed wire and broken glass, as my one-handed approach just isn't going to cut it with the latest super iThing.
I turn on the TV and have to laugh at the endless stream of commercials for products that are impossible for me to use. Cars and shoes and exercise devices and electronic thingamajibs of all kinds, some of which I might have formerly found irresistible, but which now hold all the appeal of a burning stick. What the hell am I going to do with an Ab-Cruncher or Shake Weight? I understand that these commercials and advertisements were not meant for the likes of me, but living with disabilities has ripped the veil of consumerism from my eyes, and allowed me to see just how crass and blatantly manipulative all of these efforts to get folks to mindlessly buy, buy, buy really are. I mean, does anybody really need an Ab-Cruncher? For goodness sake, if you really need to have those sixpack abs, just do some freaking situps and give your Ab-Cruncher money to the charity of your choice, where it might do some actual good.
I am what is known as a "collector". I'll fixate on some items of interest, usually something antique, and start obsessively collecting them. I have collections of old postcards, vintage fedoras, old New York City travel guides, and World's Fair paraphernalia, among others. When I was healthy, my biggest collecting obsession, by far, was antique wristwatches. I loved them, was fascinated by their intricate mechanical workings, learned the history of their various manufacturers, deeply appreciated the craftsmanship and art that went into making them, and spent huge gobs of money on them. I wound up with a collection of over 50 of the suckers, most from the 20s and 30s. Many have inscriptions carved into their backs, dedications from loved ones, or sometimes just a person’s name or initials. These inscriptions would fire my imagination, and I'd picture the circumstances under which the watch was bought and treasured by some long-ago person. I delighted in in the fact that my collection was actually functional, and I loved wearing a different watch each day. They became my trademark, friends and family often asking about my "watch of the day", and if they showed actual interest, I'd happily take the watch off, pry open the back, and display the artfully constructed mechanical "movement", all gleaming artfully polished metals and gears, proof that in some far-off time it not only mattered what something looked like on the outside, but on the inside as well.
Now, due to my disabilities, what were once my most prized possessions sit up in a closet, hardly looked at for several years. In my current state, I couldn't wind a watch, set the time, or even fasten the leather straps to my wrist. The collector in me still likes knowing that I have them, and from a financial point of view, they've appreciated in value, but in many ways my watches have come to represent the alien I have become on my own planet. Yes, the proof of my otherworldliness quite literally surrounds me, in almost every commonplace item I encounter. But there's something about those watches that sums up my predicament, objects once so treasured now become symbols of the toll my disease has exacted.
Of course, my illness has led to fits of remorse, some of them quite intense, but it's also led me to fully grasp that the worth of a person lies not in the objects they possess, their outward grace and elegance, or their physical beauty or prowess. The true worth of a human being lies far, far deeper, in their essence, their spirit, their soul. Though this disease is a curse, it has led me to befriend some of the finest people I've ever known, people who likewise have been stripped of all the adornments and material goods too often used as armor and camouflage in the land of the healthy, people who have nothing to offer but the kindness of their hearts and the keenness of their minds. We may be unwilling aliens here on planet Earth, but in our shared state of otherness I've learned the values that make us truly human.