When initially diagnosed with ALS, I was devastated. I could live five years—perhaps ten if I was fortunate. When Dr. Fischbeck later correctly diagnosed me with SBMA, I felt I had a new lease on life. Then, the fears and paranoia showed up again. I was my own worst enemy.
One thing I noticed while living with forty years of progression of Kennedy's Disease was that what negatively affected me (mentally and emotionally) in my late twenties and thirties is not a concern today. Most were unfounded fears of what could be, not what was. What I thought was earth shattering back then is something that I live with every day, and most often do not even consider today. In other words, I have matured with the disease and discovered more about it and about me.
In the beginning of my battle with this disease, I feared the worst and hoped for the best. I told little 'white lies' when asked if anything was the matter. Admitting I had the disease was something out of the question—especially at work. I looked at it as a weakness, something that will make me less of a husband, father, manager, and co-worker. Today, I realize that the real weakness was my inability to be honest with others and myself. Life would have been far simpler.
I now know living with the disease is never as bad as what I imagined. And, in some ways, it is worse. The most difficult part about living with the disease today is seeing how far my strength has deteriorated over forty years. The most satisfying part is knowing I am still active, engaged, enjoying life and helping others.
Today, "safety is job #1." When I am injured, I am not the only one that suffers. My wife has to change her life to accommodate my injury. That is why I error on the side of caution.
The Serenity Prayer, "God grant me the serenity to accept the things I cannot change (i.e., Kennedy’s Disease diagnosis), the courage to change the things I can (i.e., my bad habits, outlook, attitude and patience), and the wisdom to know the difference."
In closing, I leave you with my last and probably my most important learning. People are there for you when you need them.
Photo: Trip Adviser