On an unforgivingly cold night in January 2014, I found myself face down in the middle of Massachusetts Avenue in Cambridge.
I had been crossing the intersection after emerging from the elevator at the Central Square T stop, eager to get home and into the warmth of my apartment. I made sure to walk at a careful, deliberate pace, moving in lockstep with my forearm crutches.
Living with an adult-onset form of muscular dystrophy called Miyoshi myopathy, I had learned long before that night never to take any step for granted. I had the scars on my hands and a drawer full of torn jeans as reminders.
But even with all my concentration focused on my safety, I still missed a bump in the street, a change in gradient too slight for an average person to notice. I took an awkward step on this bump, my right knee buckled in disapproval, and I crumpled into a heap in the middle of the crosswalk. My crutches went flying, my face landing inches from cold sand and slush.
Two strangers lifted me up by my armpits, and with assistance, I made it to the other side of the street. I walked the remaining block home, my body shaking the entire way. I was traumatized by the fall, a toxic combination of vulnerability and danger. Even worse, I was angry with myself for letting my condition get to that point.
I knew at that moment I needed to get a scooter. I knew that my body, decimated by the effects of my disease, had weakened to a point where mundane tasks were becoming unnecessary risks.
Living with an adult-onset form of muscular dystrophy called Miyoshi myopathy, I learned ... never take any step for granted. I had the scars on my hands and a drawer full of torn jeans as a reminder.
Miyoshi myopathy is caused by a lack of a protein called dysferlin that aids in muscle cell membrane repair. It entered my life only weeks after I graduated from Northeastern University in 2008. I first noticed weakness while running, and ever since then the regression has been relentless.
Within months of my first symptoms, I lost the ability to run altogether. A year later, I suffered my first fall. A year after that, the stairs to my apartment became so difficult to navigate that I had to move, away from my four roommates, my best friends.
I was exhausted physically, but even more so mentally. I was tired of resisting, tired of fighting pointless battles and deluding myself that, no matter how bad it got, I would always be able to walk.
Weeks after my Mass. Ave. fall, I finally got the scooter I needed. I enjoyed how I could get from point A to point B safely, cruising over inclines and bricks that otherwise would have been my demise.
Today, however, the scooter has become obsolete. Sure, it allows me to get around just fine, but getting out of the darn thing is becoming too tough. My body has continued to weaken and the consequences of each fall are more severe. Just last year, I found myself on the floor of my apartment, trembling from yet another fall. I had bumped into my kitchen table, and as I fell, I felt my left foot twist, followed by a shooting pain.
As I lay on the floor, I thought back to my fall on the crosswalk in 2014. Just like that night on Mass. Ave., I felt the clarity of an unwanted truth, one that I had fought and suppressed time and again.
Now it was time to get a wheelchair.
Accepting my circumstances has not been easy, but I’ve had help in fighting the emotional battles. Over the years, I have sought out inspiring stories of other patients who have dealt with adversity. I needed to know how they thrived and continued to achieve their goals. I needed the permission to believe in myself once again, after so many doors have slammed shut in my face.
I could spend all day listing people who have helped me come to grips with my disease, but a few stand out in particular:
- Sam Berns, who had a rare condition called progeria, only lived to be 17, but he packed more wisdom into his life than people five times his age.
- Pete Frates, one of the co-creators of the ALS Ice Bucket Challenge, has inspired me to become an advocate for my own disease, and to approach each day with determination and gratitude.
- Carly Hughes was a coworker and friend of mine from 2011 to 2012. On her 24th birthday she was diagnosed with gastric cancer and passed away four months later. Watching her handle her diagnosis with grace while still finding a way to be happy in every moment left an indelible impact on me.
I am keenly aware that these inspiring stories represent only one side of the experience. I have also come across stories of people who have become increasingly embittered by the hand they have been dealt in life, resenting and chastising anyone who takes a seemingly trivial movement like going up the stairs for granted.
I often wonder where I will fall on this spectrum: Will I stay positive no matter what, or will I give in to jealousy, frustration and regret for everything I should have done when I had more strength? My pessimistic thoughts on my worst days can be overwhelming, yet buoyed by the examples of Sam, Carly, Pete and so many others, I am determined to be optimistic at all costs.
The wheelchair will enable me to reintegrate with society, not withdraw from it.
That’s not to say that the frustrations will magically disappear or that I’ll stop thinking about what I cannot do. I miss going for walks. I miss going out to events instead of opting to stay home because I am too frail or afraid that I might get stuck in a chair and need help. I look at this next step with cautious pragmatism, not delusion. I’m still uneasy and fearful of such a life-altering step. But I know if I am to get through this intact, I must embrace how the wheelchair will be freeing for me.
The wheelchair will enable me to reintegrate with society, not withdraw from it. This disease has made me a more confident communicator, and with a wheelchair, I know it will become easier to share my story with audiences, as my career goal is to be a motivational speaker. No longer will I have to turn down events because I am too fragile.
I realize now that by resisting each subsequent piece of adaptive equipment — leg braces, crutches and scooter — and by giving in to my worst fears over the years, I was the one who was limiting my future. If there is one mistake I made, it was in resisting tooth and nail the very devices meant to prevent me from lying face down in a crosswalk or getting X-rays on a sprained foot.
The fall in my apartment cemented the reality of my condition. This time around, outside of a little bit of resistance here and there, I am ready. I don’t have the wheelchair yet, but I'll start using it in the next few months.
I can’t say I’m looking forward to this next step, but I accept it. I have no choice. The temptation to become bitter and jaded will be intense. It’s going to take all the strength I have to resist it.
I hope that, in that resistance, I find out how strong I truly am.
Chris Anselmo is a 2008 graduate of Northeastern University and a 2016 graduate of the Boston College MBA program. He blogs about his experience living with an adult-onset form of muscular dystrophy at www.sidewalksandstairwells.com. Hat-tip to Health Story Collaborative for connecting him with CommonHealth.