I should be in Maryland right now. Maybe Ohio, or at least Illinois – somewhere on the road to Washington DC for a Roll on Capitol Hill that starts on Monday. I’d take anywhere but where I am now. There is an old adage that says that life is what happens when you’re busy making plans. So it only figures that, in what is undoubtedly the most productive point in my journey thus far, life would throw me a curveball that has landed me on bed rest. Yep, my almost 4 year run of being pressure sore free officially came to an end last month.
I knew this day would come, I just didn’t think it would be now. Then again, I guess no one ever does. On the heels of the first Here and Now Project event, and just before what was sure to be an epic East Coast road trip to rival last year’s West Coast run, the timing couldn’t have been worse. And of course it pops up during summer, the time of year when we in the Seattle area are guaranteed a good dozen or so days where the clouds part to reveal that warm, golden orb we always hear so much about, but rarely see. It’s hard not to feel like the unseasonably hot June weather is mocking me from the window.
3 Doors Down has always been one of my favorite bands. Their second album, Away from the Sun, came out the year before my accident, and it took on a completely different meaning after that. The title track became one of the songs that best fits my life after paralysis, and it’s even more appropriate to this situation. Here’s the lyric video:
For those unfamiliar with paralysis and its inherent risks, prolonged pressure in the bony areas where we sit cuts off circulation and essentially kills the tissue from the inside out. The body has to expel the dead tissue before it can heal, so it slowly opens up. By the time you notice it, it’s already too late. That’s what happened to me. What looked like a minor skin irritation a week or so before Memorial Day became a hole roughly the diameter of a quarter and almost a centimeter deep by the time the holiday arrived.
The issue is much more of a figurative pain in the ass than a literal one. I can’t feel it whatsoever, but it still manages to f#ck with my entire world. It’s yet another illustration of how my life has gone from one polar extreme of the human condition to the other. What was once my greatest asset — my body — has now become my biggest liability. It is frustrating as hell but also terrifying, because these things are like kryptonite for people like me. It was infected pressure sores that precipitated the deaths of Christopher Reeve as well as my good friend Dan who just passed away in February. That’s a list I’m not interested in adding my name to anytime soon.
Plus bed rest sucks. I liken it to the limited understanding of solitary confinement I’ve gleaned from prison movies and TV shows. At best, it’s an hour or two of relative freedom in my chair per day, the rest is spent flat on my back in bed. The only other time I become remotely vertical is the 20 minutes or so when I raise the head of my bed up 30° to eat dinner. My eyes get blurry from staring up at a laptop, and my whole concept of time is thrown out of whack. The hours creep by at a snail’s pace, but the days somehow melt together and, before you know it, weeks have passed; a slippery slope I’ve been down before.
The last time I had a sore it cost me the better part of three summers, when I spent the two and half years between April 2008 and October 2010 primarily in bed. The prospect of losing another summer is crushing, especially when you consider how much life has changed since my last prison sentence. Back then, I was a shut-in and had no idea what I was missing. Not anymore. I have a rich and full life, one where I regularly put more miles on my wheelchair in a single month than I did in my first two or three years combined. Of course, that overcompensation is partially to blame for where I find myself today.
I’d known for a while that I was pushing my luck by spending nearly 14 hours a day in my chair, relying far too much on the “miracle” cushion than I should have. The system prevents most, but not all of the damaging effects of pressure, and I wasn’t doing my part to relieve the rest. Factor in four years of wear and tear on my chair and the inevitable body changes that come with it — both of which went relatively unaddressed — and I can only point the finger of blame in one direction. Right at myself.
But as dire as this all seems, it actually serves as a litmus test for the state of my overall mental, emotional and spiritual health which has improved immeasurably over the years. With my last sore I was in such denial, I wouldn’t so much as look at a picture of the wound, let alone actively engage in its treatment. Now I know what’s on the other side of that window and I want it back. My recovery is my responsibility alone, so I’m doing everything necessary to give myself the best chance of salvaging my summer.
I put myself on bed rest early and I’ve already had multiple physical therapy appointments to assess my seating and adjust my cushion. I’m pounding protein shakes like a Mr. Universe contestant, and my team is taking enough close-up butt photos to make a Tim Burton-esque stop-motion movie of the healing process… we’ll call it “The Nightmare Before July Fourth.” Here’s an outtake of the Ear Stabber photo bombing when she should have been working. At least someone’s having fun, I guess. Yeah, I’m a little bitter and snarky right now. It’s just because I’m impatient.
But I’m doing everything I can, the only thing left to do is give it time and have faith that, just like with the previous sore, these are growing pains that will help me mature into a stronger and healthier person. Because, if I’m honest, I know those 30 excruciating months stuck in bed were necessary to break me out of my reclusive funk and get me back out in the world and doing life. (Okay, the pretty girl didn’t hurt, either.) But in my attempt to make up for lost time, it appears I let the pendulum swing a little too far the other way.
So just like the song suggests, “It’s down to this. I’ve got to make this life makes sense.” I have to find a new way of living somewhere in the middle. The discomfort and frustration I feel will eventually pass, and I am sure I will be better because of it. One day I’ll be able to look back at this situation as a lesson in balance and moderation, hopefully learned in a matter of weeks instead of years. Until then, I’ll continue laying waste to my Netflix and Kindle queues while thinking up dorky puns in an attempt to laugh off the madness sun deprivation brings. Really awful stuff like, “I’m so bad-assed, my butt needs two holes.” Wish me luck.