To say it's difficult to find purpose after we've become disabled is more than an understatement. Whatever we did before, whatever life we lived and much of what we enjoyed very quickly vanishes into the past. It doesn't matter who we are, our credentials, our specializations or even our passions; that part of our life is over, and it is up to only us, as disabled adults, to find, create or uncover our new life's purpose ... a sort of mission statement by which we conduct ourselves each and every moment.
Understandably, we are easily daunted by the tremendous task of building a new life as a disabled adult. For us, the answer often isn't as simple as learning a new skill, going back to school or even just offering a helping hand. Many of us strive to find even one reason to keep living each new day.
Then, recently, a friend introduced me to the Netflix phenomenon "Queer Eye". In awe, I watched episode 2 of Season 4, when the Fab 5 teamed up to help the show's first visibly-disabled and wheelchair-dependent nominee. Wesley Hamilton, paralyzed after being shot (and through an incredible amount of very-hard work), turned his life around and began a nonprofit organization to help wheelchair-dependent people in his community (see the link below to an external article on the episode).
Being mobility-impaired all my life and having been wheelchair-dependent several years ago, my heart ached, as I watched this beautiful story unfold before my eyes. I was in such awe that I couldn't cry. I remembered how humbled I was when I also found myself in a wheelchair; how everything in my life changed the moment I first awakened and realized I could no longer walk ... and how so many people, professionals, family and friends pitched in to help me survive my injury.
And, subsequently, my wheels began spinning again ... but, this time, they were spinning in a very specific direction: "How can I give back to my community?" The answer was at my feet, literally, my whole life.
~~~~~
Adding Injury to Injury
(Profile photo of author's inside-left foot)
I was born with a rare genetic defect that affected my lower legs, ankles and feet. Known as a 'Bilateral Subtalar Tarsal Coalition', the defect consists of the natural fusion of some or all of the bones that make up what most of us refer to as the ankle. While most Google searches will show that about 1 percent of the population has a tarsal coalition, the truth is that true tarsal coalitions are found in much less than 1 percent of us. In fact, my specific condition is represented in less than 0.1 percent of the population; making the tarsal coalition far more rare than "club foot". The condition is so rare that it doesn't even have its own medical insurance billing identification code.
How does it affect someone? Well, as my podiatrist once explained to an employer, I have been "walking on two broken ankles" my entire life. Because I use my hips to walk, instead of my non-functioning ankles, my lower legs have atrophied, and it is highly unlikely that I will ever have appropriately-sized calf muscles for my six-foot-five-inch frame. In addition to the pain inherent to the defect, I've also had arthritis in my ankles since age 17. Not only can I not jump; I am also unable to walk more than two blocks without crippling pain.
A surgery is available for people with "TC", but it only has an 80-percent-reported success rate. And, those whose surgeries have failed are far more miserable now than before they went under the knife. Even patients who have a successful surgical procedure are bothered by having to repeat surgeries throughout their lives; for anything from replacing outdated parts to bolts poking through the skin on their heel bones.
Many of us have begged our doctors to amputate our feet and give us prosthetic feet in their place. But, those pleas have fallen upon the deaf ears of the inexperienced medical community, which believes that the phantom pain we might experience after amputation could be worse than the disabling pain with which we've been forced to live with, without amputation.
As if I wasn't already living with enough pain, in 2016, to treat a bacterial infection, my doctor prescribed me Levaquin and Ciprofloxacin. Because my doctor prescribed them, I thought they were safe for me. Little did I know that, in the tiny print of the medications' handouts, it is advised that people with pre-existing musculoskeletal conditions abstain from using these medications due to possible exacerbation of the pre-existing conditions, including the inflammation and potential rupture of affected tendons and muscles.
After three days of taking the antibiotics, I awoke one morning, slid my feet onto my bedroom carpet, stood up and casually took one step forward, when I heard a loud "Snap!" And, as I hit the floor, I felt as if my Achilles tendons were slashed. Not knowing what had happened or how to cope with it, all I knew was that I was in the most horrible pain of my life, I couldn't stand or walk, and I needed to use the bathroom.
After dragging myself 20-or-so-feet to use the toilet, I got on my phone and just started calling people; my doctor, the hospital, various social service agencies, etc. And, eventually, I was referred to the county's public health nurse, who delivered my first wheelchair (pictured below) to me later that first day.
Luckily, the tendons hadn't fully ruptured, but scans showed they (and all other tendons in my lower legs and feet) were greatly swollen and inflamed. And, there was no guarantee that I would ever be able to walk on my broken feet again. Fortunately, after six months of being confined to the chair, through great effort and physical therapy, I was able to put my wheelchair in storage. But, I will never forget my time in the chair, and I am always reminded that there will come a time, sometime in my life, again, when I will need to rely on that wheelchair once again.
But, on the plus side, I absolutely loved my manual wheelchair experience. Because I was plagued my whole life with difficulty standing and walking, I found joy in depending upon my wheels. For the first time, "going for a walk" was painless, because I was, instead, "rolling". Set me free in a big-box store, and I would roll for hours -- much faster than I could ever walk before, and no one could keep up with me. In spite of the infinite number of challenges of being confined to a manual wheelchair, I appreciated my new wheels. And, although I was happy to be able to walk again, I have oddly been looking forward to getting back in the driver's seat of my wheelchair once again.
~~~~~
My Movement
In the days following my viewing of the Queer Eye episode, with a friend who temporarily relies on mobility assistance, I noticed many ways in which my local community, my hometown, is and is not wheelchair-friendly. Although my community is home to an abundance of social services, there is no local wheelchair-focused club, group or organization. Also, aside from a couple pharmacies that carry limited lines of mobility products, the nearest mobility specialty dealer is over 50 miles away, which may not seem far but is still out of reach for many of us who can't drive ourselves. And, furthermore, to the best of my knowledge, no facility within 50 miles of this community allows people in wheelchairs to "roll" in their gyms or on their tracks; and, if they do, they certainly don't publicize that option.
Therefore, I'm embarking on this mission ... to establish such an organization in my local community, to advocate for the mobility-challenged and to also advocate for more wheelchair accessibility. It's simply not enough that local buses are wheelchair-accessible, when most local businesses don't offer wheelchair-friendly entrances, accommodations or restrooms.
But, while working on the future of this new organization over the next year or two, first I need to get back into shape. And, to do that, I'm getting back into my wheelchair. I'm no longer wheelchair-dependent, but I have a feeling that being wheelchair-reliant is exactly what the doctor should have ordered.
And, all of you are invited to join me on this journey to self-rediscovery, wellness and self-re-purposing. It will surely be a heck of a ride.
I am grateful for this opportunity and for your support.
(Photo: The author, Zach Jensen, in the fall of 2016)
https://www.indy100.com/article/queer-eye-season-4-wesley-hamilton-disabled-wheelchair-netflix-9017281
