General Discussion

When first diagnosed with Progressive Bulbar Palsy and given a timeline of 6 months to 2 years, I was consumed with grief. Found Jesus (thank the Lord), then set about getting my affairs in order. In fact, I had already had symptoms for at least the two years it had taken to finally reach the specialist who gave me the diagnosis. And I had symptoms at least a year or two before that, so getting my affairs in order was top priority. I was living on borrowed time.

Two months later, I got a second opinion. I did not have progressive bulbar palsy. I had another more benign (as if anything ALS can be benign) variant of ALS, which gave me room to breathe…literally and figuratively. I continued to get my affairs in order, but the pressure wasn’t on.

I began to look at all the opportunities, especially for writers.…

Many years and lifetimes ago, after digging in on our traditional Thanksgiving meal, we would go around the table and say what we were thankful for.

Before my son’s cardiac arrest, and even though we were blessed to have saved his life, still this life was different…for all of us, having experienced our child’s death, regardless of the outcome. He died. Sudden cardiac arrest is terminal unless CPR ensues immediately and a defibrillator is available soon. But at the time of the Thanksgiving meal just a couple of months after his event, the tradition of going around the table and saying what we’re thankful for just didn’t work.

In the past, nearly all thanksgiving went to our health.

“I’m thankful for my health.”

“I’m thankful for my good doctors.” Ditto. Ditto. Ditto.

Patience was never a virtue of mine. From birth I was always in a hurry. I started my life prematurely, coming two months before term in precarious conditions in Ivory Coast, Africa. I was a quick one, always on the go. A racing horse impatient in the stall before a race. An activator, learning by doing, and eager to get started on any project. I carried this desire for action in my adult life, and it served me well personally and professionally. At the peak of my existence, life was about to teach me an important lesson.

When my first ALS symptom appeared, I blamed my fast pace. This sudden slurred speech was a sign for me to slow down. My primary care physician was quick to render his judgement: you’re young and healthy, nothing to worry about. To appease me, however, he referred me to a speech therapist…

Tom Petty understood. “The waiting is the hardest part.”

We’re taught to get good at waiting. “Patience is a virtue.”

I’ve waited for important stuff my whole life. Waiting for a call from a med school, “I want to be the first to tell you that you’ve been accepted into the class of ’81.”  I waited for my med school classmate to ask me out. That wait was tough. I almost had to ask him first. Waiting the nine months for my first child to show up! A letter from the American Board of Orthopedic Surgeons to tell me I passed the board exam. It seems we wait so patiently for the critical challenges life throws our way. It might be years in between these huge “waitings.” And they consume us with their importance, and the waiting can sometimes be excruciating.

I can’t think of anything I wait for every…