No time to wait.
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 -who was happy to schedule an appointment with me 10 months later! Unbelievable. My wife Rebecca noticed the second symptom, a subtle muscle twitch in my arm. I turned to Dr. Google only to find out that these combined symptoms may signal something more serious. I was not going to wait 10 months for a speech therapist knowing what my internet search rendered. Taking matters in my own hands, I demanded a referral to a proper Neurologist. Once again, weeks to wait for the first appointment available. Frustrated and eager to discover the truth, I started calling the Neurology office every day to inquire about possible cancellations or “no-shows”. Within days, I was in front of my first Neurologist. After a series of blood tests, scans, EMG and nerve conduction studies, my suspicions became validated. It was “highly likely” that I had ALS. I was referred to the Duke ALS Clinic for consult. There again, waiting. To see Dr Bedlack, a world-renowned expert in ALS, I had to wait 8-10 months. I was relieved when they offered another less famous Neurologist, at the same clinic, with a shorter waiting period: 3-4 months. After all, I confessed to the scheduler, why worry about who I’m seeing if there is nothing they can do to save me? I don’t think she found my ironic tone funny -but I did. I still had a sarcastic sense of humor. Good!
From that moment, something changed in me. I still had no intent to wait, but for a completely different reason. I was no longer concerned about the hours on my agenda, about getting somewhere, or getting something done. My life was ticking, like a clock, not knowing when it would stop. In the months waiting for a confirmed diagnosis, I faced two choices: worry and waste time or live to the fullest. I chose the latter.
In August 2024, I did something incredible. Without much training or advance notice, I decided to join the Friends for Life bike rally, cycling from Toronto to Montreal in 6 days, camping in tents, to raise awareness and funds for people living with HIV (PLHIV). For several years, I had led the Canadian team that manufactures and commercialize life-savings medicines for PLHIV. Although my company was the main sponsor for this event, I wanted to do more, hungry for purpose and community. So, I joined the ride, knowing very well that I might never be able to do this again. Together we rode our bikes through hills and valleys, sunshine and rain, for roughly 700 kilometers. We saw the thousand islands, the back country, we bathed in lakes, smelled of sweat, we ate ice cream, listen to heart breaking stories of how the virus affected so many lives. I slept, ate and met so many people. I was alive.
Applying the same approach, I befriended the scheduler at the ALS Clinic and was able to get in on September 26, 2024. By the end of the day, after seeing a multidisciplinary team, my ALS diagnosis was confirmed and treatment protocol initiated.
I faced the same choice, once again: fight and live, or withdraw and seclude myself. This time, it took me a while longer. Facing the certainty of my condition and my own mortality is not a process that can be rushed. I had to go on a personal journey that lasted several months, grasping to this new reality. The Viking in me emerged on the other side. I refuse to be a victim. Moving forward, no need to wait, not knowing what tomorrow looks like.
In the past 25+ years, I cannot remember ever taking all my vacation days. I would usually get to October or November with several weeks of unused vacations -ultimately losing them at the end of the year. In 2025, things changed. Not knowing for how long I could remain in the workforce, by March I had already used half of my vacations. A romantic trip to St-Lucia with my lovely Rebecca; a trip to Edinburgh to reconnect with expat friends from our time in Paris, a “guys’” fishing trip in Canada, trips to see the kids in college, etc. I was grateful to be able to assume my functions at work until the end of the year. By then, other trips had materialized, Florida and Punta Cana -not a single day of vacation left at the end of the year, not even a personal day. There was no waiting to create memories with family and loved ones.
2026 is also off to a good start, despite losing a great deal of mobility and ability to communicate. I’m writing this text in an airplane, coming back from three weeks with family in the Caribbean. I always believe things happen for a reason. Today, I’m at peace with my life, with my ALS. Now that the dark curtain of negative emotions has been lifted, I start to witness the good in my situation, the good in my life. My diagnosis has made us stronger and closer as a family. My condition is a source of renewed connections. While in the bathing in the sun, many brothers and sisters, cousins and friends came to celebrate life with us. I see things around me with different lenses and a greater appreciation for the small but magical moments. I’m proud of my wife for her quiet strength, for her advocacy, her full engagement in my wellbeing. I appreciate my children, their tenderness and compassion. I love my parents, siblings for being so present and supportive. I’m grateful for my colleagues who have become friends over time. I traveled the world, what else can I ask for? Sure, the road ahead will present its challenge, but we will address those, together. I don’t know how much time I have left, nobody knows, but one thing is sure, I will never ever wait again to have enough money, time, vacation days to live my best life. Carpe Diem.