Paralyzed author writes about loss and grief in book written with his eyes
TORONTO -- “We have all suffered loss … my losses have at certain points felt unbearable, and still I lost more.”
This is one of the first lines in a memoir soon to be published by Ken Whyte's Sutherland House press, “Still Life” by Dr. Jeff Sutherland, who wrote the entire book with the only part of his body he can fully move and control: his eyes.
It was supposed to be a personal memoir for just his family, but it became a book about loss, grief, and survival that he wanted to share with the world.
“A terminal disease enables me to know that I have a limited time to express the important things about life,” Sutherland told CTV News via a specialized computer device that speaks for him.
“The book is an opportunity for me to have a voice.”
Sutherland was a physician and Chief of Staff at an Ontario hospital, the father of three boys, and living his ideal life when he was diagnosed with Lou Gehrig’s Disease, or ALS, 12 years ago, at the age of 41.
Within two short years of his diagnosis, he was forced to retire from medicine.
He lost his ability to move his limbs, to speak, and eventually, to eat, drink, and breathe. He was locked in his own body, eating through a feeding tube and breathing through a ventilator.
Roughly 80 per cent of people with the disease die within two to five years of diagnosis, according to ALS Canada. Globally, there are more than 200,000 people living with the disease. Approximately 3,000 Canadians have ALS. People with ALS become paralyzed because the motor neurons that enable movement start to break down and die, preventing the brain from communicating with the body’s muscles.
Sutherland beat the odds and made peace with the disease, despite the difficulties. Today, he is an ALS advocate, and major fundraiser for The Walk to End ALS.
“Jeff amazes me every day, he is so unique in that he is so patient and kind and challenges himself every single day with a new opportunity,” his wife Darlene said.
In “Still Life,” Sutherland wrote about his and his wife Darlene’s decision to “opt out” of the real world as much as possible, shielding them from the fear of missing out: “Darlene and I live in a cocoon built for our own protection.”
Still, he wrote about watching friends being at the peak of their careers, missing simple pleasures like being able to run with his wife, and the heartache that comes when close relationships deteriorate. He wrote about the guilt that weighs on him and his wife: “I wonder if it is worthwhile making two lives miserable just for my limited existence. My guilt is overwhelming.” Despite his own doubts, Darlene calls him “the ‘love of her life’ and the ‘pillar of her strength.’”
But for Sutherland and his family, the greatest loss came when their eldest son Zach and his girlfriend, Kaya Firth, died in a kayaking accident on the Credit River, which runs behind their home in Terra Cotta, a hamlet just north of Toronto.
Heartbroken, Sutherland poured himself into his writing -- using a computer that tracks his eye movements as he spells out each word, letter by letter, blink by blink, on a visual keyboard. It was painstaking: just 15 words a minute.
But it helped him find a way through his grief -- to live, despite his own illness.
“I wrote the book as a personal journal to help with my grief. Later, I recognized my writing might help others,” Sutherland said. “The passing of our son and his girlfriend completely and utterly devastated us and extinguished hope.”
A draft of “Still Life” arrived in the email inbox of publisher Ken Whyte, who had been wading through hundreds of manuscripts. It grabbed him from the very first page, and he had to publish it, he said.
Sutherland is a medical doctor and his mission is to help people, so writing this was an extension of his career, Whyte said, calling the book and its message inspiring.
“Whatever loss you suffer in your life, there’s a way through it. ‘I’ve been through this. I can guide you, I can lead you.’ And so it’s a very uplifting and optimistic book, despite being about profound loss.”
The Sutherlands started a foundation in memory of Zach and his girlfriend that gives scholarships to young people who have lost a loved one or a parent.
“If I can find peace, I hope that other people who have had loss can find peace and joy in their lives,” Sutherland said.
“We have no ability to stop immense adversity when it enters our lives. We do have a choice in how it defines our future.”