My husband Neill was diagnosed with ALS on August 23rd, 2021. He had been suffering with a loss of leg strength for over a year, but with the pandemic it took time to get proper appointments and, finally, a diagnosis.
We were living between Calgary (where my family is), Vancouver (where Neil was working as a television director), and Nelson, BC, where we had a house and were planning to retire.
I was so sure that it wasn’t too serious. I was in Calgary when Neill got his results in Vancouver, from his then neurologist. Neill had polio as a child and it was thought to be post-polio syndrome, which isn’t great, but certainly not life-threatening.
Before Neil’s diagnosis we both lived very busy lives. Post-diagnosis, Neill continued to work summers in Vancouver on a series he had been with for 11 years. The production team made all the necessary adjustments for Neill to be able to do his job. They built ramps and put up tents to accommodate his growing need for support. I am happy to say he had three great years of working before finally retiring just last month.
I was an Art Therapist in Vancouver before we relocated to Calgary to be closer to my family. I continued to work virtually during the pandemic, but since retired to be available to care for Neill full-time.
It took some time for us to slow down and adjust to our new reality. Initially, there was so much grief. We needed to process the enormity of what we would be losing. At the forefront, plans for our future and retirement, which weighed heavily on both our hearts.
Early in our journey, I met a woman whose husband was suffering from dementia. She gave me some important advice, “don’t project into the future, you will be who you need to be when you get there.” I used her words as a mantra whenever I felt overwhelmed and doubtful about my abilities to cope.
Today, I would also like to add that it does not get easier, but it does get better. So much of my ability to cope was tied up by my willingness to accept our circumstances - and initially I certainly did not! Over time though, I have learned to try and live in the moment as much as possible. An Eckhart Tolle quote I read also helps in those moments of anger or frustration. It goes something like, “If you can’t find acceptance, enjoyment, or enthusiasm in any given moment - you are creating suffering for yourself and others.” I have found that if I can move into acceptance, depending on the circumstances, I can often move into enjoyment and even enthusiasm.
I have returned to painting,a long-time passion of mine, and Neil is writing a short film that he would like to direct. We both find creativity to be the best way to stay in the moment, finding it meditative and life-affirming.
We are very fortunate to have good friends and a large, supportive, family. Without them this journey would be much more difficult. We are so grateful to all those who have shown up for us in ways we didn’t even know we needed. Our plans for the future involve spending as much time with them as possible.
Along with our support system, the ALS Society of Alberta has been invaluable, from their quick response to any equipment needs or queries we may have, to the caregiver support groups which, like a community, alleviates the feeling of being alone in navigating ALS. To them, we give our greatest appreciation and heartfelt gratitude.
