At some point in our lives, sometimes sooner than others, we all have that one experience that makes us feel totally alone. Sure, most people with and without disabilities have been made fun of, bullied, or pushed around in their youth. And it’s common to – at least once – be mad at the world because life isn’t fair. Even if you have a generally great childhood overall, as I am lucky to be able to say I did, there will be that first, singular moment that reminds you that sometimes, there won’t be anyone there for you.
When I was 20, as the frequency of my falls increased due to the progression of my Becker Muscular Dystrophy (I would eventually stop walking and start rolling at around age 25), it was getting to the point where if I tripped and fell while walking, I would not be able to get myself up. I was at the mall doing some Christmas shopping by myself, and I was slowly and carefully making my way through the crowds, trying not to get knocked over. Unfortunately, someone with a big bag slung over her shoulder rammed right into me, sending me to the ground. She shouted “Sorry!” without turning around and was gone in a flash. I was a bit shaken up but thankfully unhurt.
The hordes of shoppers continued to pass by: some ignored me completely, others looked right through me; some looked down with pitiful eyes; others appeared annoyed that I was in their way. I tried to muster the strength to get up, but despite my best efforts, gravity was winning. Not one of the dozens of passers-by offered to help. I then started asking for help, but in a major metropolitan area where many people have turned a blind eye the problem of homelessness, I shouldn’t have been surprised that some of them would totally ignore the guy on the ground practically begging for help.
Then he showed up. A U.S. Marine who had been doing his own shopping happened to see me. He immediately put down his bag, knelt down in front of me, and looked me directly in the eyes: “How can I help you, sir?” As best I could, I explained the expert maneuver my “little” sister (she’s actually 5’11” and ripped now) had invented for getting me off the ground: sit me upright, squat down in front of me, give me a bear-hug, let me wrap my arms around the back of your neck, and then stand up quickly so I can also stand up, but don’t let go until I lock my knees and get my balance. The Marine did just that, and after making sure I was steady on my feet and out of the way of the major foot traffic, I thanked him profusely and he went on his way.
So the story ended well, but the feelings of loneliness and helplessness that I had during those several minutes on the ground represented a rude awakening. It was the first time I had been the victim of whatever the disability equivalent of “fashion roadkill” is. For those unfamiliar with the HBO series “Sex and the City,” just picture a model who starts her walk down the runway at a fashion show only to trip and fall, and the next model in the line starting her walk, disdainfully stepping over her fallen colleague, and continuing the show.
Fast-forward 17 years; my life is good for many reasons: great job; caring friends; helpful family; and an absolutely wonderful wife (and a bonus: really nice in-laws). And I’m part of a great organization with great leaders – PPMD – that battles Duchenne Muscular Dystrophy and Becker Muscular Dystrophy every day on many different fronts.
Also, I’m also honored to be a member of the inaugural group of men that was selected to form PPMD’s Adult Advisory Council (PAAC). As a group, we bring a wide variety of skills and talents to the table – along with a long list of plans and dreams for the future. My new friends in the PAAC (and others I’ve met through PPMD and other channels, for that matter) have faced and overcome many of the same challenges I have and understand what it’s like to grow up and live with DMD or BMD.
We are committed to remembering those who have gone before us**, paving a path for those whose journey has not yet begun, and banding together to forge ahead in this journey known as life.
It’s nice to know I’m not alone.
** I dedicate this blog entry to my cheerful, courageous, kind-hearted, and accomplished cousin, Charles B. Keefe (September 21, 1970 – April 15, 1993; Duchenne MD).