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Illustration by Chelsea O'Byrne
How do we navigate things that break our spirits as well as our bodies?
Until 24 years ago, my life was uncomplicated. I was a wife, a mother of three and an emergency room nurse. Then, at the age of 45, I was diagnosed with Amyotrophic lateral sclerosis and given a prognosis of three to five years to live. As I began to research this horrific disease online I read that it was like “living in a glass coffin” and “being buried up to the neck in sand.” It was an unimaginable and frightening prospect. I began having night terrors. How would I get through this darkness to find light again?
Ironically, years before as a student nurse, I worked in rehabilitation with people who were injured and disabled. I was young and struggled to feel competent and at ease in this setting. Now it dawned on me that perhaps my progressing paralysis might be a life lesson about walking in more challenging shoes. Well, here were the shoes and they didn’t fit. It was one particular morning after driving my son to hockey, I came home, parked in the garage and closed the door with the car still running. Kenny Rogers was singing I Will Remember You on the car radio. I didn’t want my family to watch my decline. Thirty minutes passed. I felt lightheaded. I felt guilty and I felt sad. I had three beautiful kids. I turned off the engine.
I had to make sense of this. I felt a desperate need to help the world understand ALS. Lou Gehrig’s famous last run around the baseball field, waving goodbye, was a romantic notion for a very unromantic disease. No one saw “the luckiest man in the world” being suctioned, turned or tube fed.
I turned to the universal language of music. Inspired by the Tears Are Not Enough recording that called on Canadian musicians to raise money for famine relief in 1985, I too would invite musicians to do the same for ALS. In my naïveté I found courage. I was politely bold and I was driven. I felt lifted. In 2001, the first Elizabeth’s Concert of Hope was held in Hamilton. It led to 17 concerts over nine years from coast to coast and would raise $2.5-million for ALS research and support services.
During the fifth year of organizing these concerts – and with little time for thoughts of my own looming fate – I was suddenly reawakened to it. One day, reality arrived on my doorstep. It was deluxe and slick. It was a big, black electric wheelchair, a “mobile monster” with headrest, tilt ability and a “sip-n-puff” option. The breezy nature of those delivering the chair was in stark contrast to the darkness of my thoughts. It was steel and powerful, and as it rolled into my world I felt my own power slipping away. I felt guilty. I knew I should be grateful. When they left, I sat on the stairs and cried myself silly. Then I continued organizing concerts.
Two years later, I received devastating news. I was on the phone when my sister came to my house. Her face was pale and stricken. She told me to hang up, and then she told me my eldest son was dead. He was 25 years old, an artist, an athlete, an honour student at Capilano University. My world stopped. Profound grief trumped everything. To survive the days I once again sought refuge in denial, imagining my boy coming home, hearing his voice, “Hi Mom!”
I was committed to the concerts and to my grieving family, but there was no rule book on prioritizing. I watched my marriage disintegrate, my children withdraw and my life implode. I was left alone with my devoted service dog, my best friend Kira. Darkness descended and the night terrors flourished. I dreamt the artists were burying me alive in sand. I slept with the lights on.
A few years later, an old friend from my teen years happened to drop by. We were both struggling and lonely. I had become numb to feelings but he brought kindness and comfort and we shared our stories. The months passed and we became loving partners, our challenges cushioned by our connection. He carried laughter and light to my darkest moments.
I am lucky to have survived ALS for 24 years, and although it still shadows me, it’s no longer intrusive. My physical decline has been slow, and thoughts of ALS are replaced by precious memories. The painful grief of my son’s death has settled deep inside. The tidal waves of sadness rise less often, and I mostly feel a quiet peace. Perhaps a portion of that peace is age and wisdom, and I want to believe that some of my weakness is just age. Still, a recent event has led me to believe in miracles, the ones that come to the right place at the right time; unexpected blessings that can make suffering cease altogether and the will to survive even stronger.
Last March, I was going through old photos, making albums for my two adult children and one for my late son, the one I will keep. My youngest son came to the house and asked me to sit with him in the living room. I was anxious by his formal request.
He spoke slowly and gently, “You have a 15-year-old granddaughter we’ve never met.”
I was tearful as I listened to him explain that one year before his death, his brother unknowingly fathered a child. My son explained that the results of his sibling DNA were a positive match and this young girl wanted to meet us; she was hungry to know about her biological father. My hope was tempered.
Two hours later, my new granddaughter arrived with her Mom and Nana. Our tears flowed. When she smiled I saw my son in her face. She had his eyes, his chiseled features and most notably, his serenity. This bright, beautiful girl brought my son home. They stayed until evening. As they were leaving I offered her my son’s beige corduroy jacket that I had kept. It was a tad big but she wrapped it tightly around her small frame and wore it home. Two weeks later, I received a beautiful handwritten letter telling me that we were the missing piece in her life and how filled-up she was to have found that piece.
“There is a crack,” Leonard Cohen wrote, “a crack in everything, that’s how the light gets in.”
Elizabeth Grandbois lives in Burlington, Ont.
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