General Discussion

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 first taste of travel. Not too long after that, I signed up for a similar community, but this time in Honduras. Having learned English and French, the world was my new canvas. It was not a surprise to anyone that I ended up falling in love with Rebecca, a beautiful American girl whose father is from Roatan, an island that belongs to Honduras. Twenty-eight years later, we are still happily married, and we have two healthy and vibrant children.

On the professional side, my pharmaceutical career was also very exciting, spanning 23 years. Starting at the bottom of the ladder, I performed well and was recognized with new job responsibilities every 2-3 years in the US and Europe before coming back home to lead Canada. Having achieved my dream position, I was contemplating my next steps. Now that the kids were both in college, should we return to Europe or perhaps to Asia?

Then the inevitable happened…

It started with a subtle slur in my speech. A few weeks later, I mentioned this to my primary care physician during an annual physical. He was quick to brush it off, “You’re young and healthy, nothing to worry about.” Rebecca noticed the second symptom, also really subtle: a small twitch in my arm. I turned to Google and searched for the keywords: slurred speech and muscle twitches. The first result rendered: Amyotrophic Lateral Sclerosis (ALS). No, could it be? Not me, not now… Alarmed by my scientific discovery, I scheduled a follow-up visit with my PCP, sharing my findings and concerns, demanding a referral to a proper neurologist. Several weeks later, on a day that I was not traveling between the US and Canada, I met with my first neurologist. He performed a few physical tests, confirming that there were some signs, but a more comprehensive evaluation was needed. After a series of unpleasant tests, namely electromyography and nerve conduction studies, the doctor told me that it was “highly likely” that my suspicion was accurate, and he referred me to the Duke ALS Clinic. Several months later, the ALS diagnosis was confirmed, and the treatment protocol initiated.

Although I had been living with the fear of this diagnosis, nothing prepares you for the final verdict, pronounced by the expert. My life stopped; everything around me disappeared in a blur. All my dreams and ambitions came to a screeching halt. A deep sadness took over. Why me, and why now? How would I tell my family, my children? Would I become a burden?

It was important for me to tell my children in person. Thanksgiving weekend would be perfect with my daughter home from college. This left me two months to prepare. Meanwhile, I had to tell my family. I wrote them an email. Words on a page are easier to digest; you can go back to the text and re-read it repeatedly, without interruption. It’s much easier to write a complete story on paper, knowing very well that the moment I announce my diagnosis, people will stop listening to my words. It also leaves much-needed space for the reader to react to the news. It was important for me to convey a message of love and resilience, hope and peace rather than a distress call. We would get through this as a family, the same way we had faced other challenges. Little by little, my brothers and sisters called me to express their support and love. My parents took a few days to adjust to the news and garner enough strength to call. Parents are not supposed to outlive their children; losing a child is the greatest tragedy and fear of any loving parent. But, to this day, telling my children was the most difficult thing I had to do in my life. Dreading the Thanksgiving holiday where we should be celebrating joyfully, the moment of truth arrived. Speaking from the heart, I informed my children. It did not take long for them to grasp the devastating news. When we lived in Paris a few years earlier, a friend from work living with ALS was a guest in our house for dinner. They remembered all too well the wheelchair and respiratory devices that came with our guest. Despite their shock, both met me with tenderness, love and resilience. To this day, I am so proud to see how my children are choosing to face adversity.

In the months following my diagnosis, as the deep sadness subsided, I was faced with two fundamental choices: giving up or fighting with all my might. I was never one to quit or to withdraw in the face of adversity. Always a glass half-full. I refuse to be a victim. “I’m a Viking, not a victim” are words that I live by. After all, we all must face our destiny, our own mortality. Remember the joie de vivre that defined me so well? How can I find joy today, going through this sad journey? Little by little, I regained control of my spirit, outlook, and attitude. Accepting my predicament came with a certain peace and calm. I compared my story to other people dealing with worse situations than me. My brother had a close friend with young children when he was diagnosed with a brain tumor the size of an orange. He suffered terrible headaches, had to go through surgery, and passed away within months of his diagnosis. People who face aggressive forms of cancer have a tremendous battle ahead of them, with uncertain outcomes: you are burned, cut, and poisoned. Those who slowly lose cognitive function and are unable to make decisions for themselves. Those living with chronic pain. Those living in a war situation, facing famine, constant fear, and oppression? These are real tragedies. I read a post from someone living with ALS describing her condition as the “closest thing to hell on earth.” While I don’t know the full context behind these comments, my situation is different.

As I reflect on my life journey, I am very grateful for the many blessings in my life, and I remain optimistic about the future. I have a loving and supportive family, I married my soulmate and life companion 28 years ago, and I am a proud dad of two healthy young adults who promise to be good citizens. I have traveled the world, had a fantastic and fulfilling career, and met incredible people along the way. What else could I ask for? The road ahead will present its challenges, but we will address those together as they come along, face the wind, adjust our sails, and continue forward.

While there are two versions of me, the one before and after the ALS diagnosis, deep inside I am still the same person. The key difference, other than the physical limitations, is the renewed appreciation of life’s magical moments and a heightened joy of living—joie de vivre.