I lost my Mom almost ten years ago. She lived with ALS for three years and taught me how to face life and its challenges with gratitude, humility and grace. During Mom’s illness I promised myself that if I could help it, I would not have regrets after she died.
Amyotrophic Lateral Sclerosis, also known as Lou Gehrig’s Disease, affects the nerve pathways in the brain, spinal cord and muscles of the body. Those afflicted with ALS progressively lose their mobility. Many also lose their speech. I remember Mom explaining that her body felt normal, so it was hard to understand why her arms and legs wouldn’t ‘listen’ to her brain.
We spoke on the phone every day from the point of her diagnosis – her voice was strong and familiar – to the time that a voice simulator ‘spoke’ the words she typed in to it ahead of time. One of the most difficult stages of her illness was realizing that she was unable to speak any longer.
We take so many things for granted in this life. The familiar voice of a parent. The safety and warmth of a hug. A grandparent playing with their toddler grandchild. The presence of those we love.
I remember when she told me that her days passed by so much more quickly as her mobility declined. When I asked her to explain what she meant, she said “everyday things take so much longer now.” She wasn’t complaining or feeling sorry for herself, it was more that she was making an interesting observation about how her life was changing.
We spent time together while she was still independent and mobile; then at her home when she required help to eat and drink; to the end of her life in hospice care. We watched her move from foot braces to cane, from cane to walker, from walker to wheelchair. Those times were difficult for our entire family, but I don’t regret a moment.
What I do regret is not making a point of sitting down together and talking to her. Not as my mom, but as an individual, a fellow human being. What where her highlights, her adventures? Her regrets in life? Ask her to tell me the story of her and Dad’s romance, one more time. And about the day I was born. To ask her if she was frightened of dying.
My biggest regret is not recording her voice, my mother’s voice, so I could play it back when I miss her the most.
(My second biggest regret is not taking more photos of Mom. This is not my favourite photo, but it’s one of the few I have of her and I together. Don’t make the same mistake as we did. Take photos of the people you care about!)