Transabled

An able-bodied friend and I recently discussed the swirl of issues surrounding transgender people, spurred by the President’s sudden tweeted edict banning transgender volunteers from serving in the military. My friend expressed mixed thoughts on these matters, most of them based on the fact he just couldn’t identify with a person feeling they were somehow born into a body of the wrong sex. I replied that I too couldn’t entirely relate to the emotional state and cultural pain experienced by transgender folks, but my feelings should have no bearing on issues of fairness and equality. If all people are indeed created equal, any person's standing as an equal should not rely on my ability to fully grasp the intricacies of their circumstances.

As those thoughts turned into words and left my lips, the realization hit that in many respects I can identify with at least some of the feelings I expect transgender people experience. I’m in no way equating my own situation with theirs, but thanks to Creeping Paralysis the inner me is now almost entirely divorced from the body in which it exists. I’m not transgender, but I am transabled.

My concept of “me” is still that of the wiry six-footer that I used to be, the mannish boy who reveled in meandering strolls through the city, long-distance swims, a vibrant social life, and a full tapestry of sensual and tactile delights. The self I hold dear bears no relation to the embodiment of decrepitude that confronts me whenever I glance down and take a gander at the frame that sits in my wheelchair. The image staring back at me when I muster up the courage to roll up to a full-length mirror and take a peek is a complete stranger, at least from the neck down. With its bloated belly and ravaged limbs, that thing in the chair is most emphatically not the me that dwells inside of it. The old me lives on, cocooned in my heart and soul, trapped within a penitentiary of increasingly useless flesh and bone.

Though I try my best to quiet the frenzied feelings engendered by this gaping disconnect between body and spirit, at times there is simply no denying the emotional tempest raging within. Confusion, anguish, sadness, a gnawing yearning for what used to be – negative energies all, especially when directed inward. And though I try my best to silence or at least contain them, these destructive emotions seek out seams and points of weakness through which to burst, like grasping fingers of flame blasting through an apartment building window, threatening a conflagration that will take down the entire edifice. Thus far my attempts at emotional alchemy, seeking to turn negative energy into positive, have helped neutralize the threat, but the potential for self-immolation always lurks within.

As a transabled person, I often find myself an alien on my own planet, a victim of a variety of discriminations. Outside the cozy confines of my home, there are bathrooms I can’t use, restaurants and shops that apparently don’t want me as a customer, and passersby to whom I appear to be invisible. Indeed, maybe even something worse than invisible, a threat, a reminder of the ephemeral nature of their own sense of normalcy, a not-so-subtle hint that the supposedly solid foundations of their lives are in fact made of nothing more than gossamer.

The New Testament warns us to judge not, lest ye be judged. As members of a society increasingly riven by social and political divides – largely manufactured by would be puppet masters who seek to gain wealth and power by exploiting the very fissures they have created – it should be contingent upon every individual to live those words as a matter of personal and national survival. It’s far past time to reject outright the prefabricated outrage bombarding us and not fall prey to manipulators who have nobody’s good at heart but their own. We are all in this together, black or white, gay or straight, abled or transabled. If we allow the cracks in our society to further widen, we may all too soon find out what lies at the bottom of the abyss.

To my fellow transabled people I can only offer the same advice that I try to follow myself; make every effort to channel the despair and outrage you feel over being trapped in an increasingly unrecognizable body into some sort of positive force. As the great Johnny Lydon stated, anger is an energy. For your sake and the sake of your transabled brethren, make every effort to direct that energy outward, to vent it in some sort of constructive way if only to not let it combust within you. Cry out against a multiple sclerosis status quo that has made treating but not curing somehow acceptable, confront a medical industry that obscenely sees us first not as patients but as consumers, and offer comfort and understanding to those similarly afflicted.

To the transgender community, I tender my support, as somebody who is now experiencing the turmoil of being transabled. Although we may not live in the same house, I believe we might reside in the same neighborhood. I didn’t choose my circumstances and neither did you. Stay strong.

Celebration-Elizabeth Jameson
Created from MRA image of my brain.

My dear friend Elizabeth Jameson (click here), a disabled person who is far more comfortable with her imperfect body than I am with mine, recently gave the below Tedx talk. Her words and deeds perfectly illustrate the power of directing potentially negative energy outward, thereby forcing it into becoming something positive. Elizabeth’s MS journey found her turned into an accidental artist, transforming MRI images into thought-provoking pieces of fine art. My brain had the honor of being one of her subjects, and the prints she created out of my MRIs reveal that I have a couple of dancers jitterbugging away inside my skull. Thanks to Elizabeth, images of my brain have appeared on the covers of medical journals (click here) and textbooks (click here). Though MS has now rendered her quadriplegic, Elizabeth’s radiant spirit and message of everlasting hope come through loud and clear in this riveting and important talk. Enjoy…

(For those receiving this via email, you can view this video on the Wheelchair Kamikaze website – click here)

The Un-Comfort Zone

Image via Wikipedia

My recent trip down to Bethesda, MD really accentuated just how disabled I've become. Placed in unfamiliar surroundings, the veneer of normalcy that I cocoon myself in at home quickly comes apart at the seams.

Not that I'm waltzing around my apartment with the dexterity of a spider monkey, but I've incorporated all kinds of workarounds and improvisations into my everyday life that allow me to do the things I need to do. If I'm alone, or with my wife, beyond the view of outsiders, the fact that a caffeinated snail could beat me in a foot race has simply become an accepted fact of life. I know it, my wife knows it, and life goes on...

As my level of disability has gradually increased, though, my efforts to remain functional have led me to develop ever more elaborate choreographies. Getting into the bathroom now requires an intricate series of clumsy maneuvers. Once I've reached the threshold of the loo, my "good" left hand, holding my cane, reaches in and flicks on the light switch. Then, with one foot on the tiled bathroom floor, I hang the cane on the towel rack, and my now empty left hand grabs at the doorknob for balance. Using the knob as a fulcrum, I stumble into the bathroom, and then swing the door shut, in one motion releasing the knob and then frantically reaching towards the sink for support. My every move requires some sort of compensatory action to get around the fact that my right side is completely uncooperative, but over time, and with repetition, these actions have become more or less routine.

Likewise, getting around my neighborhood in my power chair now seems commonplace. The road map in my head is aware of which curb cuts are suicidal, which sidewalks are pockmarked battlefields, and which routes provide the least bone jarring path to my usual destinations. After using the chair around the neighborhood for a year, these calculations have all become automatic.

Take me out of the familiar, though, and I'm increasingly helpless, as our recent trip down south unnervingly demonstrated. Making a highway rest stop is now anything but restful. Once parked, I slowly and painfully unfold my obstinate legs and drag myself out of of the car. Karen pulls out the collapsible manual wheelchair we use when traveling, and sets it a step or two from the passenger side car door. Using the roof of the car for balance, I pivot and then plop myself into the chair. My fate now rests entirely in Karen's hands. I have been rendered a wisecracking blob of flesh and bone.

I confess, I detest the manual chair. The power chair can be a hoot, and as I've mentioned in other posts, I almost feel like it gives me superpowers. Karen sometimes even hitches rides on the back of it, when we're traveling long distances over reasonably smooth pavement, much to the amusement of passersby. The manual chair, on the other hand, makes me feel about as useful as a pile of manure in a wheelbarrow. I've tried to make the best of it, sometimes shouting, "Mush, mush, onward Huskies!” (much to Karen's chagrin), but let's face it, you can't polish a turd.

Once arrived inside the rest stop building, attempting to use the men's room has become an act of pathetic derring-do. As the other fellas enter and exit the facility with various degrees of urgency, there I am doing a slothlike wobbling shuffle, gripping my cane with white knuckles as I desperately try to avoid any wet spots and discarded paper towels on the tiled floor. What used to be just a quick stop for a pee is now a nerve-racking trek through a not-so-funhouse filled with potential hazards.

The same can be said for navigating supposedly "accessible" hotel rooms. In my experience, most are "accessible" in name only, having gained that designation through the implementation of mandated modifications made without any thought given whatsoever to real-life usability. The shared tile between the bathroom floor and the roll in shower is usually silky smooth and becomes a skating rink when wet, shower seats are often installed as far from the actual showerhead as is architecturally possible, and handrails are attached in what appear to be abstract impressionist patterns.

Whereas at home I know my workarounds by heart, when confronted with a new layout, my every move requires planning and consideration. Going about even the simplest task is physically exhausting and mentally taxing. Weaving between thoughts of "Hmm, should I grab the wall and then the edge of the dresser?", are internal exclamations of "Holy crap! I am an honest-to-goodness cripple!”

Away from my home base, my carefully crafted illusion of normalcy gets stripped naked, and exposes my true state of vulnerability not only to the world outside, but most disconcertingly, to me. Assuming the persona of the Wheelchair Kamikaze is therapeutic; the reality of being the "Going to the Men's Room Kamikaze" is anything but.

Still, one day follows another, and we learn to suck it up and force or fake our way through. It's incredible what a person can get used to, isn't it?