Saturday, April 4, 2015

The Waiting Game

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.

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