“Acceptance” is such a lovely word. It is what I have been fighting to achieve for years. I don’t know if I have arrived there. It really takes a lot of … well, nothing. In fighting to achieve acceptance, I constantly pushed myself further from it. Achieving acceptance doesn’t require fighting, but the systemic integration of my disabilities into my life and living anyway. I really don’t think a verdict of Huntington’s or any other disease or disorder really matters to me anymore. I just am. I can list my symptoms and categorize them as either skeletal, muscular or neurological. The skeletal problems are a result of the neuromuscular conspiracy to try to rob my life of a happy ending.Well, every day is a testament to their failure to break my spirit and my will to continue to live, love and laugh every chance I can.
A few days ago, I was have a very troublesome day. My wife and I had a day of adventure. We road around town, stopping at restaurants and shopping centers that I haven’t been to in years due to the progression of the disorder. Just getting out of the house requires close coordination of planning, execution, resting then continued execution. Not listenting to my body and giving what it needs is costly mentally and medically. Yet, my beautiful wife planned for all of these needs. Location, resting, location, resting, location, … is how the day went. What started as a quick outing turned into a half-day event.
Managing my symptoms was everything. I often believed that to achieve longevity, I needed to know when to take rests. When I was a distance runner, I tried to find a moment in my stride when I could rest my muscles and then try to control when I could rest those particular muscles. This would allow me to shift the energy to those muscles that were pushing me.
The longevity of the day was a product of nothing more than the considerable training that I integrated into every stride all those very long years ago as a competitive distance runner. It doesn’t matter if you win the race. Just being in it and running is winning.
Here I am, thirty years older, at fifty-four, often writhing in the pain of a multitude of muscles, barely cognizent due to the medications or living in a pseudo-imaginary world existing only in the confines of my mind. I am running that race. Trying to take all these symptoms in stride. Exhibiting all the coordination, planning, execution, resting and execution in every moment of a very long day.
After taking medication a little early, as my symptoms receeded my normal voice came back for a time. The sounds out of my mouth were foreign. The medication wore of and my new normal voice returned. My mind is now more comfortable with my slurring, contorted voice than with the voice I use when the symptoms are nill.
Acceptance is an incredible word. I hope my ceasing the fight against my symptoms and beginning the fight with my symptoms, we can go forward and run the long race. Soldier on.