LITTLE CURRENT—Former Expositor editor Diane Sims is nearing the end of her life, but that is nothing new for this most remarkable of women—she has been palliative for over two years, currently, and was given her first end date as a teenager when she was first diagnosed with multiple sclerosis (MS). Her two-word reaction pretty much sums up her response to any of life’s insurmountable challenges.
The journey, and her chosen outcome, were commissioned by McLean’s Magazine for its website and the story will be published in the August 10 issue of the national magazine.
The first inkling of what was to come in her life came when, at age 14, she lost the sight in one eye—fearing eye cancer, which had recently claimed a cousin, an emergency flight to Toronto to see specialists failed to discover the cause and the issue “mostly” disappeared. Fast forward three years to age 17 and “I woke one morning unable to walk, with a freaky tingly sensation from my thighs to my toes,” she recalled. “I screamed, ‘Mom!’ Ten days in the Sault hospital followed, full of X-rays, bloodwork and electrical prods testing nerve impulses.”
It wasn’t until she had a spinal tap at Toronto’s Sunnybrook Hospital that she was faced with the devastating news. “You have multiple sclerosis,” Ms. Sims recalls the doctor telling her. “You’ll soon be permanently in a wheelchair, bedridden by 27 and dead by 35.”
Ms. Sim’s reaction was swift. “A good Baptist, I turned from the window and spit two words: ‘Fuck you.’” Still, anxiety and doubts filled her mind. She described MS as a shadow that loomed in the corner of her eye, but never obscured her path forward.
“I chose instead to live in the light,” she said. “I graduated high school not only with awards, but with that boyfriend I feared I’d never have. I went on to finish two bachelor’s degrees and a Master of Journalism by age 30.”
That was just the beginning of a life that would be filled with accomplishments, despite dealing with constant pain, countless doctor appointments, ovarian cancer (requiring the removal of a 10-pound ovarian tumour), and a host of other ailments that would stop a lesser person dead in their tracks.
Despite the MS fatigue that was growing more significant, she persevered. “It’s not normal exhaustion,” she notes, “but a weariness that completely knocks the stuffing out of you.” Still, although she began walking with a cane, she didn’t slow down. “I worked for magazines, newspapers and broadcast media, including the London Free Press and CBC Radio. I was editor of The Michener Award–winning Manitoulin Expositor in Little Current where I was able to work on provocative coverage of issues around self-governance and sovereignty pertaining to nearby First Nations.”
Ms. Sims even had the experience of assisting Group of Seven painter A.J. Casson in preventing the almost pure white quartz of Willisville Mountain, where he and other group members had painted, from being blown up and excavated.
At age 38 she received the news of ovarian cancer and yet another terminal date—guess what her response was? Ms. Sims went on to write two books, ‘Gardens of Our Souls,’ a book about friendship, gardening and healing; and the second, ‘An Ovarian Cancer Companion,’ the first book on that disease for Canadian women.
“Just before the release of my third book, I found small lumps in my breasts,” recalled Ms. Sims. “I would need a bilateral mastectomy. First my ovaries, uterus and cervix, now my breasts.” She went on to publish two more books.
Still, disease stripped her of so much of life. “By the end of 2010, the MS was clearly marching faster than before,” she said. “I was using a walker and my vision was weaker. I stopped driving—no more trips with my long hair blowing in the wind.” For now.
The indomitable Ms. Sims focusses on the silver lining—she met her husband and love of her life, Dennis, who drove Stratford’s mobility van. Captured by Ms. Sim’s wit and spirit, Dennis proposed, and the couple were soon married. They travelled to Europe, the Caribbean and California before new medical issues forced them to stick to domestic travel.
Oh, and about that blowing in the air hair thing, even with her ever-less mobility, another silver lining of sorts appeared. “My electric wheelchair became my new legs and my car,” she said. “It has lots of power to scoot downtown, about a kilometre away, for errands and lunches, or to Stratford’s theatres—and my hair still blows in the wind.”
But even the most indomitable of spirits can only hold the reality of MS at bay for so long. Ms. Sim’s health and mobility continues to decline, stripping away much of what makes up quality of life, to be replaced by a living hell. While she may be tough, stubborn and prone to a positive outlook on life, the constant pain and steadily deteriorating ability to communicate, the utter indignity that comes as part of the package, Ms. Sims knows there will come a time when what life remains to her will not be worth the living. She has made arrangements for medical assistance in dying (MAID).
“It’s been hard because, while so many precious friends have placed their hands and hearts to uphold my decision, others haven’t. ‘Suicide’ is often an ugly code word that opting for MAID is a sin,” she said. “It hurts to admit members of my family feel this way. However, there’s no purchase in a suicide lecture to me. Like many others, I worry too that MAID could be frightfully widened, too easy to access. Steady brakes need steady pressure. However, given the right circumstances, including the ability to give assent at the end, MAID is a right, to be used when appropriate.”
Her doctors agree.
But for quite a while her partner Dennis did not.
“We live in a Victorian cottage in Stratford’s south neighbourhood,” said Ms. Sims. “Over the past 18 years I’ve created a sort of Mexican-Italian grotto on the terrace, full of flowers and vines, and metallic art and painted quotes on the brick. I took Dennis out there to talk to him. I already knew his feelings. He felt MAID was a selfish cop-out, committed without regard for those left behind. He’d clearly expressed that opinion plenty of times. And his reaction was what I feared. ‘You’ve fought so hard all your life,’ he shouted. ‘Why can’t you keep fighting?’”
“Can’t you bloody well see the pain I’m in from my legs and bowels?” Ms. Sims retorted. “Can’t you understand I hate lying in shit?”
It took several months, but even the most hardened of hearts could not miss the misery and pain that was ever-increasing for Ms. Sims. One day, as their van bumped over potholes on the road home, each eliciting a grimace of pain on Ms. Sim’s face, he finally turned to her to say: “I finally get it. I understand.”
Ms. Sims has spent the last few months dealing with the minutia of dying: legal papers, financial arrangements and arranging a final resting place and an urn, all the while continuing to advocate vigorously for the disabled and other issues near and dear to her heart with all the passion that has defined her life. One of her articles was published in The Expositor during the midst of the pandemic and revolved around concerns regarding the vaccination. Or lack thereof, of personal support workers dealing with the disabled.
“My overwhelming favourite position in my varied wonderful careers was as the editor of The Manitoulin Expositor,” said Ms. Sims. “Working with Rick and Julia McCutcheon and Kerrene Tilson because The Manitoulin Expositor is the best paper in the universe.”
Ms. Sim’s full article, along with far more in-depth description of her life’s travails and the process involved in accessing MAID, can be found at mcleans.ca. It is an article that she hopes will help others who are facing challenges such as hers, and more even importantly the people around them, to understand why, when life becomes a living hell, it is no sin to voluntarily quit this mortal coil.
No intelligent person could ever suggest that Ms. Sims is any kind of coward or that she is giving up without a fight. Since age 17 this remarkable woman has faced down the unbearable, defied all odds, lived through numerous end dates and grasped life with both hands. Just a couple of years past she took up painting with the encouragement and mentorship of her friend, renowned painter Ivan Wheale.
The Expositor is proud of its continuing association with Ms. Sims.
The article will be published in the print edition of the magazine in the August 10 edition.
Expositor Correction
In this article a reference is made to Diane Sim’s efforts to protect Willisville Mountain from being mined out of existence. The Group of Seven inspiring mountain that should have been referenced is Fraser Bay Hill, now known as Casson Peak. The Expositor regrets this error.
