the twinge that teaches

I started my current job nearly five years ago. Just weeks after being hired, I was scheduled to travel to Florida for a major orthotic and prosthetic trade show. Appearing for the first time at a national event while working for a new employer held special significance for me. I thought of it as a bit of a coming-out party, though I doubt anyone else in Florida particularly knew or cared who I was.

Three days before my flight, I stood in my bedroom and reached to my right to grab something off a bench at the end of my bed. That’s when I felt The Twinge. It wasn’t a jabbing pain, or a shooting jolt. Just The Twinge, a shot across my spine’s bow to let me know that something was amiss.

The thought, “Oh, that’s not a good thing at all,” flashed through my brain, and I immediately lay down on the floor to start stretching. I had pulled muscles in my back before and while they had never slowed me down too much, I didn’t enjoy the experience. After several minutes of calisthenics, I stood up again. I had full range of motion. I could walk without pain. I concluded that The Twinge was nothing to be alarmed about, congratulated myself on my regimen of prophylactic stretching, and climbed into my SUV to pick up my dry cleaning.

I live only 6.1 miles away from the dry cleaner’s. The ride takes a mere 14 minutes on a bad day. I wasn’t worried as I pulled into the parking lot and prepared to climb out of my truck. But as soon as I tried to swivel my body out the door and plant my feet on the ground, I realized I was in serious trouble. My spine had gone into lockdown. Any upper body rotation at all resulted in a blast of spasms that left me convulsing wildly as I tried to find a position that would allow the pain to stop.

Not fully appreciating the seriousness of the situation I now found myself in, I theorized that once I got out of the car and started moving, things would loosen up. If I could get my feet from the floor of the car to the pavement beneath, I was sure – well, pretty sure – that I’d be able to walk normally. Motivated by this unsubstantiated conviction, I carefully extricated myself from the vehicle and started to move towards the dry cleaner’s.

That’s when I discovered that not only could I not rotate my upper body, I couldn’t walk. The Twinge prevented me from getting my torso upright over my hips and legs. Instead, I was pitched forward at 25 degrees, looking like a man walking into hurricane-force winds. But with my upper body precariously leaning into a non-existent storm, I could not generate enough power to force my prosthetic knee to bend. The end result was a compromise between pain and progress. Walking with my head about two feet in front of my feet prevented the flash-bursts of spinal explosives that had strafed me as I tried to exit the car. On the other hand, I now had the gait of a geriatric male with a fused left knee. It was, I suppose, not a pretty sight.

(For those of you who don’t have a full grasp of the impact of walking “like an amputee” on my psyche, please refer to this.)

So, Igor-like, I hobbled into the dry cleaner’s, picked up the clothes for my pending trip, and gingerly navigated back to my truck to hang my freshly pressed suits off the ceiling handle in the back seat. Having completed this simple task, I now grappled with the reality that I had to somehow get back into the driver’s seat. This simple action, one I had performed thousands of times before, now required planning (and perhaps materials) akin to an Everest expedition. Indeed, using a harness and pully system seemed more likely to get me into the vehicle than my own limbs.

However, motivated primarily by fear of public embarrassment – one of the more powerful forces in human nature – I planned and implemented a work-around. By turning so that my rear end rested against the driver’s seat and standing on the toes of my sound foot, I could nearly inch my way onto the seat. With a little bit of help from my arms, I lifted myself into the vehicle, albeit facing the driver’s-side window instead of the windshield. All that remained was to turn 90 degrees so that I could drive home. But that 90 degrees was 90 miles in the world of spinal spasms. I finally concluded that turning from left to right in increments of about an eighth of an inch minimized the scream-inducing paroxysms of pain that arched my back like voltage firing through my body. (Yeah. This wasn’t embarrassing at all.) And so, covered in sweat and quivering from the stress of anticipated pain, I was now ready to drive home.

I navigated the short ride back to my house without incident. But as I pulled the key out of the ignition, I realized that I was now in even worse shape than I had been at the dry cleaner’s. I simply couldn’t move at all without triggering brutal, all-encompassing pain. Anything I did produced sensational and expletive-inducing back spasms. My wife wasn’t home, so unless I wanted to sit in the car for a few hours, this was a solo mission. The short walk from the SUV to the front door increasingly looked like the distance between New York City and London.

I’ve got four years of undergraduate study at a fine college in my not-so-distant past. I have three years of post-graduate education on top of that. And I’d spent 8 of the 10 years of my professional life in and around health care, 5 of them in prosthetics. In short, I possessed not-insignificant mental capacity and relevant, real-world experience to bring to bear in situations like this.

Drawing upon those vast reserves of knowledge and sophistication, I came to a well-thought-out, logical, and unassailable conclusion: the only way I was getting out of my SUV was to intentionally let myself fall out the door. I couldn’t pivot my upper body to swivel my feet towards the pavement. I couldn’t execute the incremental spin maneuver that had gotten me into the car 10 minutes before. At this point, I could barely open the door, much less navigate the open space that lay beyond it. And so, with the grace of a severely wounded animal, I let gravity remove me from the car.

As I now lay on the ground next to my vehicle, I reconsidered the wisdom of the expert analysis that had left me sprawled on the pavement. I’m fairly certain that I looked like the poster child for a medical-alert bracelet. But, I concluded, this was a win-win situation: I was out of the car AND no one was there to see how ridiculous I looked. Unfortunately, I soon came to understand the downside of my innovative SUV-exit method. I couldn’t get back on my feet.

Triaging my situation in light of this unexpected turn of events, I determined that while my lower half clearly wasn’t working correctly, my arms and shoulders appeared to have been left untouched by The Twinge. And so, in suburban Long Island, a world away from the battlefields of Iraq and Afghanistan, I did what any self-respecting, highly-educated amputee would do. I Army crawled my way from the car to my front walk, up the three steps to my porch, and eventually, into my house. (While I imagined this in my mind as epic in a Full Metal Jacket kind of way, in retrospect it probably much more closely resembled the training course run of the new volunteers in Stripes.)

The next two days involved a flurry of medical-related activity designed to get me to Fort Lauderdale walking like Upright Man once again. I discovered that crutches avoided any of The Twinge’s messy aftereffects, and so began using them full time (while still wearing my prosthesis), hoping that relieving pressure on my lower back would magically allow it to heal in 48 hours.

I drove to my doctor, who introduced me to the wonderful world of trigger point injections. I concluded that they were wonderful because they made me feel like a real medical procedure was occurring, but they had no impact, good or bad, on my condition. I took muscle relaxants that he prescribed. They didn’t help either.

So, filled with horror and embarrassment, on the third day after The Twinge, I climbed out of the car at JFK airport with crutches in hand, made my way onto the plane with my prosthesis attached uselessly to my body, and eventually entered the Florida hotel containing hundreds of prosthetists from around the United States. I could not walk.

I spent the several days I was at the convention awkwardly defending my disability (my back, not my prosthesis). I answered unasked questions and explained why I had been relegated to using crutches. I made frequent trips back to my hotel room to try and stretch for extended periods in an effort to expedite the recuperation process. I memorized the pattern of my hotel rug with alarming clarity. It was, in my mind, an unmitigated disaster.

And then came the trip back home.

Infuriated with a crutch-bound life, I navigated the airport and walk onto the plane without crutches (Win!). I covered those distances in slightly more time than it would have taken a glacier (Loss!). And I did it with the grace of a seizing engine. (Loss #2!) In my hand I held a now-empty cup of soda, filled halfway to the brim with ice. I jammed the cup into the seatback in front of me, intending to consume the ice over the life of the flight.

But then, shortly after getting airborne, as I reached into the seat back, I somehow managed to dump the ice and its run-off all over my own lap, the red and white cup explosively propelling the miniature ice-field across the expanse of my khakis. As I sat there with freezing ice and water forming a disastrous-looking stain across the region south of my belt, I realized that I couldn’t even stand up to get the ice and liquid mix off my front. I was stuck in my seat. I weakly tried to brush the ice cubes off my lap, no doubt drawing the curious sideways stares of my seatmates, who presumably wondered why the idiot next to them wouldn’t just get up and go to the bathroom to clean himself up.

And I said to myself, “This pretty much caps it all off,” as I sat in the cloth jetBlue seat, water seeping into the fabric not only of my pants, but of the seat underneath me, leading to an unfortunate liquid pattern suggesting that I had lost all control of my bladder mid-flight. The only positive thought that went through my head over the next few hours was how fortunate I was to have my prosthesis on, as it at least prevented me from feeling the wet, cold descent of liquid through my pants and underwear, all the way down to my skin, a progression that I was experiencing in super slow-mo from the zipper of my pants across my right thigh and buttock.

All in all, it took about another week before I was able to walk normally, and another 2-3 before I was fully pain free. (As you might guess, I still haven’t recovered psychologically.)

You might ask why, after two weeks away from less is more, I return to the blogosphere with this humiliating tale of ambulatory degredation?

I’ve often joked off-handedly about this experience over the last five years with some version of the following comment: “The amputation of my leg was much less disabling than when I pulled a muscle in my back.” But as I’ve thought about it more and more, I’ve come to understand that it’s not a joke: it’s true.

And the point has further been driven home in conversations with able-bodied individuals who begin to tell me tales of their physical ailments, but ultimately abort their stories, convinced that it’s inappropriate for them to complain about their bodies when I’m missing part of mine. As an acquaintance of mine once said to me after she had undergone knee surgery, “Why am I complaining about this? When I think of what you went through with your accident . . .” And she had to stop as her eyes filled with tears.

I think there are two really interesting things going on when you examine the dynamics of a conversation like that. First, I believe that able-bodied individuals generally overstate the limitations associated with limb loss/limb difference. And I hypothesize that this happens because people with all their limbs subconsciously need to associate such an obvious physical difference with profound impairment to remind themselves that they’re “normal,” or at the very least, not that. It’s not done with malice or forethought – it’s reflexive. I’ve seen patients refuse to amputate an entirely non-functioning leg or foot because they don’t want to become an amputee, even though having the surgery would unquestionably improve their ability to actually live. And I’ve had those same individuals, as they describe their nonexistent quality of life, apologize to me and comment on the fact that they shouldn’t be complaining when, after all, I’ve (gasp!) lost my leg.

Second, at the same time that the able-bodied people draw this clear distinction to demarcate the line separating them from me, I’m identifying with and welcoming the connection that we share: the challenge of adapting when your body doesn’t let you function in the way it was originally designed to. Between my amputation and the lovely trip to Florida that I described above, I appreciate and understand what they’re experiencing better than most. In fact, I’m much less likely than the storyteller’s able-bodied brethren to be thinking to myself, “Stop your whining and suck it up!”

So here’s the paradox: the person who stops telling their story of pain to me because she unconsciously needs to create a mental moat that separates me from her is depriving herself of the opportunity to communicate with the listener most likely to understand and empathize with her. As I’ve become more aware of this phenomenon, I’ve always encouraged the person who’s suddenly unwilling to talk to continue. I often tell the story of The Twinge as a way of poking fun at myself while implicitly prodding the other person to resume their tale. Because, in the final analysis, I believe that people with LL/D and our able-bodied peers have much more in common than we at first think (or fear).

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