Living with ALS isn’t just a personal journey. It’s a journey that my loved ones and I travel together, albeit from different vantage points. Today, I’d like to share a glimpse into my life, navigating the bittersweet complexities of distance, love, and resilience.
I live alone in Holland, but I’m far from alone in spirit. My steadfast companions are my fantastic 24/7 care team, who uphold not just my physical wellbeing but also my emotional strength. Their compassionate support empowers me to lead a life of purpose and creativity, despite my ALS diagnosis.
Yet, every day, I feel the weight of the geographical distance that separates me from my wife, Antoinette, who lives in Portugal. We had to make this difficult decision as the intensity of care I require escalated. It was not an easy choice, but one borne of necessity and deep love. We wanted to ensure the best care for me and the least emotional burden for her.
It’s challenging for Antoinette, no doubt. Watching a loved one decline is a deeply emotional journey, one that leaves an imprint on the heart and the soul. The same goes for my two sons, Joost and Emiel, who are based in London. Our bond transcends the physical limitations imposed by ALS, but it doesn’t make it any less difficult to bear witness to my deterioration.
My sons, much like their father, have embraced the entrepreneurial spirit. They recently launched their company, Greenlights Ventures in London. The pride I feel for their accomplishments is immense. Their drive, their passion, and their courage echo my own sentiments when I embarked on my entrepreneurial path all those years ago.
As I find new purpose in my life through my AI art, I often reminisce about our shared past. It feels like ages have passed since my diagnosis, and yet, the memories are fresh and vivid. We’ve journeyed together to stunning places around the world, accumulating a treasure trove of shared experiences until my condition made it impossible.
While it’s crucial to acknowledge my emotions as I navigate this journey with ALS, it’s equally important to acknowledge the emotions of my family. It’s not just about me. It’s about us, each of us carrying our struggles, our fears, our hopes, and our love. And through it all, we are connected, regardless of the distance, the disease, and the challenges.
The beauty of life is not defined by the absence of adversity, but how we choose to face it. My family and I choose to face it, albeit separated in distance, together – with courage, with love, and with resilience.