I stood outside the Hamilton hospital gutted, trembling, in shock, my mind racing.
Minutes earlier, in what I thought was another test that would rule out anything serious related to my weakened hand, a neurologist uttered the words I had dreaded: “Steven, I’m sorry, my diagnosis is ALS.” He offered words of encouragement, assuring me I would soon start a relatively new treatment. I appreciated his compassion and support, but I wasn’t paying attention. I just wanted out of that exam room. This had to be a bad dream.
I was only 47 with a young family. I was fit and loved being active, especially chasing my five year-old daughter around a playground. How could a weakened hand be the early stage of a terminal disease that would eventually ravage my entire body?
This wasn’t the way things were supposed to go, I thought as I stood outside the hospital waiting for my family to pick me up.
Dying consumed my thoughts in those early, dark days after my diagnosis five years ago.
But darkness eventually turned to light as my focus shifted to living — seizing each day with loved ones, making new memories and raising awareness about a disease I knew little about.
Fast forward five years, and my life looks a lot different as I lie in a hospital bed in my home writing this blog using only my eyes, connected to machines keeping me alive.
Still very physically active for two years after diagnosis, I began to experience mobility and breathing issues as the disease targeted every muscle in my body. Today I can no longer walk, speak, swallow food, and I rely on a breathing machine 24/7.
Despite the toll ALS has taken on me and my family, my heart is filled with gratitude.
Gratitude for the incredible support of my caregiver and best friend, Tiffany, who is also an amazing mom to our now 10 year-old daughter, Olivia.
Gratitude for the new memories I made following my diagnosis, including several trips to the East Coast with Olivia, so she could experience the beautiful area where I grew up.
Gratitude for a healthcare system that provides me with an extraordinary team of personal support workers and nurses so I can safely stay in my home.
Gratitude for the guidance and support we have received from ALS Canada.
And gratitude for the eye-gaze technology I started using last year that gives me a voice, even though ALS has robbed me of my speech.
The device, which tracks my eyes as I choose letters and words on the screen, has allowed me to continue sharing my journey on social media and through media interviews to shine a spotlight on a disease that deserves more exposure.
It gives me a sense of purpose to join ALS Canada and other ALS warriors advocating for advances in care, equitable and affordable access to therapies and increased research opportunities.
Reflecting on the past five years, I’m heartened by the promising research and emerging treatments aimed at slowing the progression of ALS.
Now in the latter stages of the disease, I continue to hold onto hope.
Hope that one day ALS will be a condition people can manage and live well with for a long time.
Hope that a newly diagnosed dad can see his young daughter grow up, pursue her dreams and chart her own path in life.