A physical disability can provide a unique perspective on sweeping social trends, particularly if those trends require physical attributes you don’t necessarily possess. Take, for instance texting. Or more to the point, walking and texting at the same time. Though modern teenagers might argue texting to be the pinnacle of the evolutionary use of our species’ opposing thumbs, consider how curious this phenomenon must appear to those who have little or no use of their opposing thumbs, such as quadriplegics. Even for those like me, paraplegics who have the great fortune to have the full use of our hands, texting and moving forward in a manually powered wheelchair is nearly impossible—unless you text with one hand and push with the other, which will only result in you traveling round and round in a circle. And forget actually stopping in one spot and texting—that is so Your Grandmother it’s not even worth considering. This leaves us wheelchair users with only one option for remote wireless communication, which is to swallow our pride and hold the device up to our ear and talk; but that’s far worse than even Grandma—it’s Methuselah. Of course a slightly better alternative for wheelchairs is the Blue Tooth Ear Thingy, which would allow for simultaneous verbal conversation and forward motion; however, the Blue Tooth Ear Thingy only belongs in one place in my opinion: on the bridge of the Starship Enterprise in Lieutenant Uhura’s left ear. So that leaves us wheelchair users back where we started; hopelessly out of step, raptly watching the world of ordinary humans as they walk, run, drive and do just about everything else, all while texting at the same time.
After four laps I’m gasping—only four laps in; I would have thought I’d have made it a bit farther, given that in the old days I could crank out a 20 lap warm up without even thinking about it. Then the real workout would begin. But this morning, after a decade and a half of shoulder injuries and a plethora of other minor excuses—the lamest being that I’m a 49 year old paraplegic—I’m back in the lane. Bound for glory, or an extremely anti-climactic drowning, which, based upon my performance this morning, is as real a possibility as any.
It’s as if my heart is pumping tar through my veins, like I’m an old car in need of an oil change. Its okay, I think to myself as I linger too long on the sixth turn at the wall. The triathlon isn’t until September. Triathlon—what? That’s right, half mile swim, 12 mile hand-cycle and 3 mile push. I had to go and sign up last week. As a former member of the U.S. International Disabled Swim Team in the late eighties and early nineties, I figure I’ve got the swim covered, as long as I don’t embarrass myself by prematurely dying while training in the YMCA pool. The hand-cycling could be doable; I own an old one, but sadly, I’ve probably put in a total of 12 miles over the past 5 or 6 summers. As for the 3 mile wheelchair road race, I’ve never done an actual race-paced push; in fact I don’t own or even know where to get my hands on an actual racing chair, so that part of the puzzle is still a mystery.
So begins another typical chapter in my life: a triathlon, what better activity to sign onto when I’m ill-equipped and out of shape—what am I waiting for?
I’ll check in again and let you know how the training is going; that is if I survive the first twenty laps.
To be continued….
Light at the End of the Shovel
For those with mobility impairments, Winter conditions—snow in particular—can be especially demoralizing. As a full-time wheelchair user for the past twenty six years and inhabitant of the Northeastern United States, I have gradually watched my child-like excitement at the falling of the first few flakes of the winter season turn into a cynical dread when faced with the necessity of wheeling through several inches of the stuff. Even in perfect conditions getting around with a physical disability is for most of us a challenge; add to that just one more factor that diminishes our already limited mobility, and bingo—that annual “Winter Depression” sets in right on schedule, along with the first significant snowfall of the season.
But this year,
depression be-damned, thanks to a wonderful invention known as the Electric Power shovel. There are several on the market from a few different manufacturers such as Toro and GeenWorks; it’s like a small, handheld snow blower, approximately a foot wide and in most cases tethered by an extension cord to an electrical outlet, however there are some cordless models, and even gas-powered variants as well. For my needs I need
ed something simple, light-weight and effective, for swinging a snow shovel from a wheelchair is an awkward one-armed affair especially for high paraplegics like myself, where the other arm is holding myself upright in my chair for balance so as not to be spilled over to the side by the weight of the snow in the shovel itself. All this bending, reaching and pitching are also a perfect recipe for rotator cuff misery, beyond that experienced with the typical wear and tear of everyday wheelchair operation.
‘Dignity’ regained, but what about functionality?
The Argo Technologies Rewalk, one of several recent “exo-skeletons” designed to give the wheelchair-bound the ability to stand and ambulate, recently gained some more visibility (Fans of the T.V. show Glee will recall the Rewalk’s now famous appearance in the 2010 Christmas episode) by being chosen one of Popular Science’s Innovations of the Year in the Health Category. As these devices inevitably make their way from medical journals to the mainstream media, those of us in wheelchairs will undoubtedly face the question, as I did recently: If a Rewalk showed up at your door tomorrow, would you use it?
Sex…the final frontier. These are the voyages of the wheelchair known as ‘Matesky’. Its 25-year mission: to explore strange new social situations; to seek out new life receptive to intimate relations with partners who cannot move some or all of their limbs; to educate, enlighten and forge new alliances with the skeptical, or embarrass myself beyond the point of no return in trying; to boldly go where no mid-thoracic, lower-motor neuron lesion, neuro-genic bladder-equipped, center-cord injured paraplegic has gone before…
[Cue Star Trek theme music]
I walk myself backward on my hands, planting my butt in the wet sand every 3 feet. My heels trailing leave strange elongated tracks, as if some exotic mammal had dragged itself to the edge of the salt water inlet and back. I suppose right now I could fit that very description, with my spandex bike shorts, skinny legs and diving booties; my skin scorched red-brown by the sheen of the Cape Cod sun on the water. When I’ve gone about twenty feet or so, I remove the braided line from my clenched teeth and pull the plastic kayak the same distance along the tracks I’ve just laid until it’s nearly touching my toes. Then I repeat the whole process—plop, plop, plop, pull—until I’m finally at the foot of the stairway that traverses the sea wall leading to the higher ground of our resort. It’s more civilized up there; green manicured lawn, chaise lounges and Weber grills off the back porches of the water-facing units. But until I get my gear back up there I’m stuck down in the flats—my boat, my paddle, the muck, a few hermit crabs and squirting clams and me: the paraplegic who insisted on going paddling at low tide.
It’s ten steps up, and my wheelchair sits up at the top where I left it nearly 2 hours ago. My ass is covered with sand, but I figure by the time I’ve raked it over these stairs most of it will have rubbed off. I reach back with my arms, weary from my spirited jaunt around Green Harbor and plop myself up on the first step. A group stares at me from across the inlet—residents, a whole mob of them, down the way from their eponymous Cape houses, slouching in sand chairs at the end of the dock, sipping beers. Luckily a whole 50 yard expanse of water separates me from them; I don’t have to worry about any of them trying to help me, lest my experiment in crippled brawn be tainted by outside influences. Come to think of it, my sixteen year old step son is just one cell phone call away, in our room playing x-Box; he’d be happy to come on down and grab the boat in one fell swoop (Gee, I guess he didn’t run out too badly after all), but I will have none of it. They genuinely want to help—God bless them all, every one of them—and I know it would be a lot easier for me if they did, but I must know: If I were the last man left on earth, paralyzed from the chest down, could I still do this?
Is it polite to burp at the dinner table in China?
God knows our own parents used plenty on us: ‘Wait a half hour after you eat to go swimming, or you’ll get cramps!’, or who could forget ‘If you swallow your gum it will take seven years to digest!’, or my favorite ‘Don’t cross your eyes—they’ll get stuck in that position for good!’. In turn, we’ve updated, recycled, re-calibrated and re-released many of the same myths upon our own children—for as we ourselves learned, what better way to get kids to at least stop and think about whatever bad behavior they’re about to partake in than to instill a bunch of nebulous half-truths (well, let’s face it, the swallowing gum one is an outright bald-faced lie). Nevertheless, it’s how we parents have rolled probably since the dark ages. (Imagine: ‘Don’t go dating any Visigoths from the other side of the Alps or you’ll wake up with pointy ears!’, and so on…)
As winter 2011 grips the country, barely a state in the union has been spared at least a few inches of snow, if not a few feet, which is the amount we are presently buried beneath in the Northeast. This is bad news for anyone who needs to get anywhere, but even worse for us wheelchair users.
This will be my 25th winter in a wheelchair; my first was just after my twentieth birthday, having been paralyzed in my friend’s car wreck the previous spring. For my part, instead of sliding into my typical Wheelchair-Bound Winter Depression, this year I decided not to be bullied by “Snowmagedon”, “Snowzilla”, “Snowtorius B.I.G” or any other schmaltzy media cliché. I resolved to summon my powers of problem solving and logistics—the very same that had carried me through these past twenty five years of impairment—and face that “Wicked Winter Wallop” head-on!
Artie on Glee Walks with a ReWalk!
Barely three weeks after writing about new robotic walking systems right here on TCMW: it’s Tuesday night, I’m watching the last segment of the Glee Christmas show and I almost fall out of my chair when Artie, the show’s token singing, dancing, rarely moping paraplegic gets a bona fide Robotic Walking Device for Christmas! And what to my wondering eyes should appear, but the actual ReWalk system developed by a quadriplegic in Israel (the real thing, not Hollywood smoke and mirrors). I should have seen it coming during the sub plot that features an Artie dream sequence with him sans wheelchair dancing it up with the rest of the cast, and Brittany, Artie’s girlfriend telling Santa (Coach Bieste in a Santa suite) that all she wants for Christmas is for Artie to walk again. But I am nevertheless overjoyed; not just because the most-watched prime-time television show has featured the very latest in walking technology as part of the plot, but that there’s also a mention of stem cell research earlier in the show (“we’re still a few years off,” claims Sam as the Gleek jocks discuss the latest research developments for SCI with Coach Bieste).
Public awareness of Spinal Cord Injury has truly come a long way, not just of the disability itself, but now, more than ever, potential cures that were once obscure even to the SCI population are miraculously making their way into the daily conversation. As I mention in I Robot ; The Rise of Robotic Walking Technology, when I was first injured in 1984 I was told by doctors that little had been done in the way of a cure for paralysis from spinal cord injury since the first battle field survivors of WWII began arriving home in wheelchairs. As I encountered more practitioners closer to the Physical Medicine and Rehab (PM&R) discipline, it was generally accepted that there would most likely be a “mechanical” cure for SCI long before they figured out how to organically reconnect the millions of broken synapses in an injured spinal cord.
The Rise of Robotic Walking Technology for the non-ambulatory
Big news is afoot for those permanently confined to wheelchairs: Robotic Walking Devices are finally here. For those like me, who have been paralyzed for several decades, this is an astounding achievement. By contrast, when I suffered a traumatic spinal cord injury in 1984, I was told by doctors that a) there was unequivocally no cure for SCI, b) that virtually no research toward a cure had been done since World War II, and c) to expect no significant gains thereof within my own lifetime. Granted, this was the standard prognosis script at the time for SCI; purposefully calculated to steer us clear of any false hope—not that there were any prospects that would actually facilitate hope of any kind, fictitious or otherwise.