“Are we there yet?” How many times did I ask my folks that question on our
trips to South Dakota back in the 50s?
Sitting quietly in the backseat of a hot car (no air
conditioning) during the summer while on a six hour trip wasn’t much fun for me
when I was young. Now I know it must have been far worse for my parents. Somehow, we always made it there and I never died along the
way–no matter how hot it was or how frustrated my parents became.
Patience has never been a virtue or a well-honed skill of
mine. Even though I am substantially better today, there are still times I catch
myself saying, “You’ve got to be kidding me” or “Come on!”
When it comes to clinical trials and research updates, I am
no better. I can rationalize why research and trials take so long to
accomplish, but it doesn’t help this anxiety I feel sometimes.
At 68 years old, I feel like I am running out of time. I
live with the hope that someday, sooner rather than later (patience?),
those of us living with Kennedy’s Disease will receive news that there is a
treatment available.
A good friend, John Coakley, who many of you know, is in a
rehabilitation center recovering from a stroke. By itself, a stroke is
difficult to recover from. When you have Spinal Bulbar Muscular Atrophy, the
recovery process becomes an even greater challenge. Fortunately, John is
strong-willed and he has a positive attitude.
Now, every time I find my patience is wearing a little thin, I redirect
my attention to John and say a prayer for him.
