General Discussion

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…

I can live without pretty much anything…I think…because as a pALS, I will learn to live without anything I previously thought was necessary for quality life. Like air, exercise, conversation, and being able to wipe my own butt. Now that list of things I can’t live without has changed, and while there likely was a time in my life when I said I couldn’t live without those things and I’d just as soon end it if I didn’t have the ability to get or do them, I know it isn’t true. As I saw in my practice, and as is evident to me now, having met so many  pALS, we can and we do live without…a lot!

I often wondered why many of my patients continued to persevere, and live when so much had been taken away from them. I once took care of a wealthy, royal princess. She was…

There are two versions of me: the one before and the one after my ALS diagnosis.

Let me introduce you to Raphael before the diagnosis. Joie de vivre would define me best: joy of living. Full of passion, energy, and ambition, my life has been a rich and fulfilling adventure, both personally and professionally.

On the personal side, I grew up in a loving family in Quebec City, Canada. The second of five children, my parents always had an open heart and open house policy, where diversity was not only accepted but celebrated. From a young age until I was out of the house, my parents welcomed children in need of a stable family through the foster care system. At 18 years old, I was encouraged to leave the comfort of home and dedicate a full year to people who lived with a disability in Toronto. This is where I got my…