All in the Family
On a dreary January evening, as I contemplated the meaning of my existence I felt the unsympathetic bitterness of the glacial chill winter seemed to bring…. Nah I’m just kidding, this is not that kind of blog! I am actually the furthest thing from a writer. Shamefully I actually failed several english courses between high school and what was a disaster of a first few years of college. But you live and you learn; and now I’m here with absolutely zero regrets about my life.
Leaving me to why I’m writing, and why you’re probably reading this. When I was a kid, I remembered my grandmother having difficulties with muscle weakness and fatigue. I remember years of tests, and possible explanations that physicians would through out there. Eventually they landed on muscular dystrophy. Specifically, Facioscapulohumeral muscular dystrophy or FSHD. At the time, I was so young I didn’t understand. I never really understood until the day it first effected me. Its strange to feel your body let you down. Everyone I have ever talked to with MD can remember “The Day”. Mine was playing baseball in my late teens.
I was a die hard baseball kid growing up. I took to it naturally, and was an addict from day one. For whatever reason, I was blessed with an “Arm”. Starting my life pitching for the simple fact that I could consistently throw a fastball over home plate, a tall order for kids fresh out of coach pitch. From there, the game evolved to stealing bases, so I was rotated to catcher. In part because I was never afraid of the ball. Lets be honest, its a baseball, just get in front of it, it may sting for a minute but you’ll live. Nothing could hurt as bad as an older sister who picked on you from the day you were born, but more on that another day. The largest factor of the move to catcher was I was the only kid who could make the throw from home plate to second base first time, every time. From there, the move was to Center Field for the same reason. With all the moves, my natural position and home for me was 3rd base. I idolized Atlanta Braves legend Chipper Jones as a kid, wanting nothing more than to wear the number 10 and play 3rd base for the Braves. I will always and forever be a 3rd baseman. Its something about the way the ball comes off the bat. For right handed batters, the ball comes off “crisper” and with no slop. With the ball traveling hotter, there’s less reaction time but its clean and predictable.
Which leads me to “The Day”. I forget my exact age, but I was playing AAU Travel ball for Hickory Grove. I remember it being a fall, night game. I was on 3rd base, where I wanted to be. We were winning and the game was winding down. When the kid at bat made a SOLID connection and the next thing I know I have a very hot single bouncer coming my way. Seemed routine, positioned myself perfect, ball to my left and hips angled to make the throw to first. Ball was coming in just a foot or so over my head to the left side. EASY grab and throw to first. When for whatever reason, my arm wasn’t where I thought it would be. It just…. wasn’t…. I vividly remember the moment, and the moments after. My team bailed me out and we still won the game. But I can still see my buddy Joseph Tart looking at me saying “You had it Hondros, what happened?” My life from that moment would never be the same.
Everyone in my family has similar experiences. Even those without MD are directly effected. Its hard to quantify or explain, but I’d like to try. There are many great organizations out there like the MDA and the fire departments “Fill the Boot” campaign for Muscular Dystrophy. But one thing I’ve always felt, that its hard to relate. I’m fortunate in many ways in that I have FSHD, a very slow and manageable form of MD. Trips to the MDA are always humbling. Here I am just having to take moments to figure out ways to overcome tasks hampered by the FSHD, and there are children fighting for their lives with Duchennes or another aggressive form.
Leading me to my final thoughts on this opening post. I find it hard to relate. There is not a whole lot of awareness for Muscular dystrophy. Not a lot of user groups or comforting connections. At 30, I’ve had to figure a lot of it out alone. FSHD has taken different forms with everyone in my family, its never the same. I’d like to share our experiences and lives. Show whoever reads this that there is SO much more to life than the diagnosis. How we as a family overcome the not so simple tasks of everyday life. So I’m going to leave you with a photo of the goons that are my family, and hope that you stick around to see what life has to bring us!
