Step by step. Inch by inch

I have never met most of you, but you are all my village

by Brian Jude Loiacono

When I reflect back on my life playing all kinds of sports in the mid to late 1960’s, having muscular dystrophy was the farthest thing from my thoughts. The medical community was still evolving in its knowledge of neuromuscular diseases. Many practitioners were not keenly aware of precursors or early signs of the disease.

When I threw a baseball to my intended recipient, the ball would break in the opposite direction (the baseball pundits call it a “screw ball “). At that time, I just attributed this to my technique of throwing the ball, but there was much more to it than that, as time would prove.

Fast forward to the middle of the 1980’s. A chiropractor said to me during a routine adjustment that I had winged scapulas, and asked if any doctor had diagnosed the cause prior to my seeing him? My answer was no, and his solution was to have me face a wall and do finger exercises, make a pencil mark on the highest spot I could reach, and repeat it the next day to see if I could go higher.

Would I have followed his instructions if I had known that my problem was FSHD? Sadly, the answer would have been no. I would have dismissed the diagnosis as a non-event in my life. Boy was I wrong to ignore what was going on with my body. My winging shoulder blades have caused such distress and limited my upper body mobility. They have deteriorated to where I’m paralyzed from the shoulders up. The effort of putting on a shirt and combing my hair have become a daily aerobic workout. I could list each component of this muscle wasting disease, but the outer description doesn’t begin to capture the ferocious beast it is from within. It’s so hard to position myself even for the joy of sleeping.

The best medicine

I know there is hope for our community with the drugs in the pipeline, but honestly, my best medicine is sharing with all of you my thoughts and opinions, to encourage us all to never give up and to remain in control of our own destinies and narratives. I love the term “it takes a village,” and it does indeed demand just that. All of you people whom I have never met are my village.

I’m 68 years of age now, and that young man who played all sports and ice skated with the best of them now walks gingerly with the support of ankle braces. But I’m still walking step by step and inch by inch.

So my Thanksgiving wish for all of you is to stay calm, stay in control of that which is in our ability to control, and hold fast to the essential element. Be positive. Whether you believe in God or Community, may that higher power lend us strength on our journey until we reach the finish line. It’s a marathon, not a sprint.