… Thoughts on growing old with Kennedy's Disease
One thing I noticed as I lived through thirty years progression of Kennedy's Disease was that what negatively affected me (mentally and emotionally) in my late twenties and thirties is often no longer a concern today. What I thought was earth shattering back then is now something that I live with every day. In other words, I have matured with the disease and discovered more about it and its impact on my family's daily lives and me. In the process, I also began to learn more about myself, my family, and our ability to adapt and cope. Most importantly, I learned that people are there for you when you need them as long as you do not push them away or block them out of your life.
Especially in the beginning of my battle with this disease, I was unable to share the intimate details of the potential impact of Kennedy's Disease on our lives and our future. I feared the worst and hoped for the best. I told little 'white lies' when asked if anything was the matter because admitting that 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 man (husband, father, breadwinner, and co-worker). Today I realize that the real weakness was my inability to discuss the truth with family, friends, and co-workers. Life would have been far simpler had I just been open and honest about my health issue.
I now understand that living with the disease is never as bad as what I originally imagined and, in some ways, is much worse. The most difficult part about living with the disease today is seeing how far my strength has deteriorated over the last thirty-plus years and wondering how much further it will go. I still live with the fear that I will someday become a burden to my wife and I would hate that.
I live with the creed that "safety is job #1." When I am hurt because of an avoidable fall, I am not the only one that suffers. My wife has to change her life to accommodate my injury. That is why today I error on the side of caution. Yes, I could be more mobile, but at what price (if I should injure myself again).
The Serenity Prayer, "God grant me the serenity to accept the things I cannot change (i.e., my health issue), the courage to change the things I can (i.e., my attitude and patience), and the wisdom to know the difference (i.e., maturity)," is also something that I need to fully embrace.
"Patience fosters acceptance"