My reaction is unexpected. Maybe it’s the wheelchair, or the marbles-in-the-mouth sound of his voice, but it all comes back. My throat tightens and the tears threaten.
I’m at a local bookstore in support of the ALS community. A man named Norman MacIsaac has written a memoir about living with ALS called The Best of the Worst News: Tales of Inspiration from Around the World and My Life with ALS. He will be reading from his work tonight, sharing his experiences and raising awareness of Amyotrophic Lateral Sclerosis.
A prominent area of the store has been dedicated to the event. His work, ready for purchase, covers a tall shelf. I recognize Mr. MacIsaac from the cover of his book.
Ten years later, the memories of Mom’s illness flood back. A wave of challenges, gifts, and grief throws me off centre. Unsure of what to do and where to go – I don’t do well without a plan – I welcome the distraction of the book displays. And the puzzles. And the notebooks. I wander around, smiling at the others when they look my way. I feel my throat tighten. I suddenly find the wedding stationery display especially interesting. And convenient.
The Club They Didn’t Choose
Barely hidden behind a tower of agendas, I watch as others in his community start to gather. They exchange hugs, kisses on the cheek, and catch up on each others’ lives.
These people are members of a club they did not choose. Their lives have been impacted by a difficult disease, one currently without a cure. Everyone handles that reality in their own way, but having a group of people who ‘get it’ is a comfort. I had forgotten. No explanations needed, no hoping for patience when Mom’s careful gait was slow, no embarrassment – maybe less – when someone asks how you are and the tears fall.
How Could I Forget?
I think that’s what has hit me so hard. I had assumed that there would be a small turn out. I wanted to show this man support. How could I not go? What if I was the only one who did?
Of course he had a supportive circle! How could I have forgotten how people of the ALS community support each other? That they make up for their size with their participation – at fundraisers, in person events, and in online forums. As with so many other life experiences – giving birth or losing a loved one – it takes living through it to understand how others feel.
Tomorrow – June 21st, 2020 is the Walk to End ALS. This year we will walk virtually, joined by technology and in community to start our walk at 9:30 a.m. We will celebrate our success at 11:00 with a virtual finish line. Though our family will be walking in different cities for the first time this year, we will have Mom in our hearts and on our minds. I will be forever grateful for the ALS community that supported us through her journey.
Click here to support the Walk to End ALS 2020.