Preparing for MAID is exhausting and expensive. I’m glad I lived long enough to do it.
In September of 2021, my husband Dennis and I made one of our semi-annual trips from our home in Stratford, Ontario, to the MS clinic at University Hospital in London, Ontario. I’d dressed up for the occasion. I thought I looked quite smart in my new, navy-blue linen two-piece and tall brown leather boots—despite being in my electric wheelchair, as usual. Dennis and I sat patiently in the small waiting room, which was crowded with patients and the accompanying jangle of wheelchairs, walkers, scooters and canes.
Soon we were ushered into a small, green exam room. We were told to tuck in tightly—the room would be very full. My neurologist, Sarah Morrow, entered, followed by two more doctors and a nurse. Dr. Morrow introduced them as palliative specialists. I glanced furtively at Dennis. Without beating around the bush, Dr. Morrow told me I was palliative with end-stage multiple sclerosis, a disease I’d had for years. Suddenly I didn’t feel so smart.
Dennis found his voice first: “No, no! There must be a way to stop this!” Of course, there wasn’t. After a few beats to recover my wits, I asked about MAID—I knew this day would eventually come, and the possibility of MAID had long been in my thoughts. I already knew a friend with MS who had chosen it. I was 63 and the fight against the disease was tiring me. Dr. Morrow said it was an option, but it would be premature: “We’ll keep it in our back pocket right now.” There were still plenty of palliative pharmaceutical measures to help with pain, she said, though the speech and hand mobility problems I’d experienced would keep deteriorating—despite my best efforts at exercising with arm weights, keyboarding and deliberate enunciation.
Before we headed home, Dennis and I tried to digest the news over parmesan pasta and Pinot Grigio at a Milestones restaurant. I was wrinkled and weary. We both admitted we knew this day would arrive, and now the question loomed: How did I want my life to end?
***
It took a long time to get here—plans for my death have been greatly exaggerated for more than five decades, beginning when I was only 14. On Christmas Day, 1972, I suddenly lost vision in my left eye. In a split second I went from reading The Forgotten Soldier by Guy Sajer to frantically rubbing my eye for a splinter. I was flown from my hometown, Sault Ste. Marie, to Toronto, where doctors at Toronto General Hospital believed I had eye cancer (a teenage cousin had recently died of it).
Without my permission, I was taken to a lecture hall. Shivering in a faded blue gown softened by thousands of worrying hands and industrial washings, I sat in front of a hospital ophthalmology class. Thirty-seven people peered into my eye—my case was unique, I was told, because I was so young. But they found no tumours, so I was treated for inflammation along the optic nerve. Four months later, my eyesight returned, somewhat diminished.
In June of 1975, at 17, I woke one morning unable to walk, with a freaky tingly sensation from my thighs to my toes. I screamed, “Mom!” Ten days in the Sault hospital followed, full of X-rays, bloodwork and electrical prods testing nerve impulses. My friends Cathy, Dave and Bob brought pizza, subs and Big Macs. We’d whip my wheelchair around and sing along as my friend Jon belted songs by the Beatles and Bachman-Turner Overdrive. Another friend, Cindy Howard, basically camped there—classmates nicknamed us “Cin and Di,” and those names have stuck for a lifetime.
But there was no diagnosis, and one morning, I was loaded onto an air ambulance bound for Toronto’s Sunnybrook Hospital. There I finally had a lumbar puncture—a spinal tap—to retrieve a sample of cerebrospinal fluid, the protective bath that surrounds the brain and spinal cord. The makeup of the cells within the fluid can reveal a host of illnesses. Later that week I met with a neurologist.
The crinkling hospital-bed paper bunched underneath me while he sat, polyester legs crossed, on a rusting exam-room chair. “You have multiple sclerosis,” he says. “You’ll soon be permanently in a wheelchair, bedridden by 27 and dead by 35.” A good Baptist, I turned from the window and spit two words: “Fuck you.”
That night I sat with the nurses as wisps of ward gossip crept into anxious thoughts: the reactions of my parents and friends. Imminent physical disability, including vision and mobility. And, most frightening to an A-plus student, cognitive decline. What shadows and stumbles were next? Would I be blind, tripping around with a white cane? Had I offended God? What about university? Would I ever have a boyfriend?
My parents learned the next morning. I flew home with a cane, where friends met me with bouquets, balloons and tears. Cin and I arranged for ACTH (adrenocorticotropic hormone), a potent anti-inflammatory, to arrive from Arizona, and for a nurse friend to inject my butt daily. With a shout-out to BTO, I was taking care of business. Soon I ditched the cane.
***
Years before visualization became trendy, I saw MS as a shadow. It often loomed larger at day’s end, but I trusted it would recede as morning broke. That visualization has been a lifelong lesson; time after time, as the disease progressed, I found myself trusting it. I could have been bitter and angry, but I chose instead to live in the light. I graduated high school with awards—and that boyfriend I feared I’d never have. I went on to finish two bachelor’s degrees, and a master of journalism at age 30.
By then, the MS fatigue was growing more significant. It’s not normal exhaustion, but a weariness that completely knocks the stuffing out of you. I had again begun walking with a cane. Still, I didn’t slow. 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, Ontario. I was able to work on provocative coverage of issues around self-governance and sovereignty pertaining to nearby First Nations. I once assisted Group of Seven painter A.J. Casson in preventing an almost pure white quartz mountain where he and other Group members had painted from being blown up for mining.
But all the while, illness stalked me. In January 1996, my sister, Karen, died from cancer that had spread to her ovaries. That March, our last living aunt died; my mother and I held hands as we quietly sang a hymn called the doxology. Then one morning in May, my mother herself suffered a stroke. She died less than two days later. It was a crooked piece of time.
That autumn I began to get sick to my stomach, which began bloating until it turned hard. On Thanksgiving weekend I had emergency surgery to remove a 10-pound ovarian tumour. “Hey, I gave birth to a 10-pound turkey,” I softly joked through my pain the next afternoon. Tissue samples sent to Toronto confirmed ovarian cancer, and I got another drop-dead deadline: one year. I was 38.
I wrote myself into healing, publishing two books. The first, Gardens Of Our Souls, was about friendship, gardening and healing. The second, An Ovarian Cancer Companion, was the first book on the disease for Canadian women. Just before the release of my third book, I found small lumps in my breasts. I would need a bilateral mastectomy. First my ovaries, uterus and cervix, now my breasts.
I published two more books, but by the end of 2010 the MS was clearly marching faster than before. I was using a walker and my vision was weaker. I stopped driving—no more trips with my long hair blowing in the wind. But through taking the city’s mobility services I met Dennis, the van coordinator. One day on the way home from the bank I took a big gulp, and invited him in for a glass of wine. He accepted. Then he invited me to a movie, where he held my hand. For a couple in their 50s we felt like teenagers. We moved in together, and a few years later married in the backyard of our Stratford house. Dennis and I travelled with a manual wheelchair throughout the Caribbean, Europe and California. When a bladder infection landed me unconscious in intensive care, my doctors banned foreign travel. We stayed domestic, discovering Victoria and Stanfest, the annual celebration of singer Stan Rogers in Canso, Nova Scotia.
In 2016, I fell, and my femur snapped in two places. My left leg lost strength, and MS-related sensory distortions left it even more rubbish. With the numbness and tingling creeping up my back, my electric wheelchair became my new legs, and my car. 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 blew in the wind.
***
Woman with short orange hair and wearing a washed out blue shirt and black sunglasses holding a camera, smiling, against the backdrop of a large body of water.
In the spring of 2021, the MS became more fearsome. My colon, long damaged by the disease as well as the ovarian cancer surgeries, was no longer flushing fibre. My bowels nearly stopped working, and I spent a month in hospital on a liquid diet and intravenous fluids. Floods of diarrhea squished up my back as I lay in the hospital bed. Again, I was given an expiration date: three months. I went on an ultra-low-fibre diet: white rice, pasta, shellfish, processed cheese slices, white bread, peanut butter—a diet a four-year-old would love.
I had not yet decided on MAID, but I expected to die, and wasted no time putting things in order once I got home. No intervention was possible, because I wouldn’t survive a surgery. I updated my will, called a funeral home to discuss cremation rates and found a man who makes wooden urns for $250 each. Next, I made an appointment at Stratford’s Avondale Cemetery. We were told to look at the empty cremation cubicles before the office appointment. I learned the proper name for a cubicle is a “niche.”
The cemetery has semi-circular walls, containing niches in columns and rows. The column walls are about six feet high, with five rows of niches, each just big enough for two urns. We walked—or rather, I rode—around the “Avon” wall. We decided on an outside niche for Dennis and me, because it overlooked a field. (Dennis is afraid of heights, so we opted for a niche only halfway up the column.) After going to the office for paperwork and payment, I told Dennis, “We just bought our last house.”
A year after that 2021 meeting with my palliative team, in which I’d first broached MAID, I met with them again. Unquestionably, my condition had deteriorated. The dying colon, the decline in speech, jerky arms, shaky hands and spasticity in my legs had increased. It was all contributing to more pain for me, and more concern for the team. My right lung had been compressed as well, thanks to MS’s tendency to weaken the lung muscles.
As a former skier and a determined redhead, I was not to be tripped up by moguls. The horrid conditions in the country’s nursing homes during the height of the COVID pandemic cemented my decision to pursue MAID. No way was my deterioration going to land me in an institution, waiting for God.
In the ’90s, I had followed the case of right-to-die activist Sue Rodriguez, who advocated for her right to end her life as she suffered from ALS. She eventually took her own life illegally, in 1994, with the assistance of a still-anonymous doctor. And of course I had been paying attention during the legalization of MAID in 2016. But it was really the MAID death of a friend with MS in 2021 that prompted my own thoughts. Jim had fought hard, but was very tired of it all. So was I. I’ve had a rich life with the people I’ve loved, the places I’ve been, fulfilling advocacy work and a meaningful career.
“I’ve decided on MAID,” I told my team. They nodded assent and murmured “good” all around.
The first step was medical assent. MAID requires the approval of your own doctor, as well as a second opinion from a specialist in disease. The first query was to my own doctor, Dr. Sean Blaine. The most important question he and my other assessor asked was, “Can you still find joy?” For several months pain had narrowed my view, until an artist friend challenged me to put brush to canvas. I hadn’t painted since grade five when my teacher, Mrs. Herbert, told me I was an awful painter. But joy returned with painting. People even paid me for my work, which helps with hefty pharmaceutical bills not covered by my health plan.
“I’ll try,” I answered. No MAID, then—not yet. Still, I knew MAID was my ultimate destination. My medical team was on board. Now I needed Dennis to be.
We live in a Victorian cottage in Stratford’s south neighbourhood, and 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?” I shouted back. “Can’t you understand I hate lying in shit?”
The argument went nowhere, not then, and not for several months. Knives couldn’t cut the tension and anger: his at me, for daring to die; mine with him, for not understanding. Dennis’s fear of losing me was clear. Ill as I am, I am his best friend, his long-time lover and companion. He’d be lost without me. Now my sympathy and love for him turned my own stomach.
Periods of forgetful peace brought calm and laughter. We travelled a bucket list of day trips, perching on the windy pier at Port Dover, taking in tourist-choked Port Stanley and a delightful play at the Blyth Festival. Driving home from our last outing, at Blyth, I heard the unexpected.
“I finally get it. I understand,” he said quietly.
I asked him, over the rattling of our wheelchair van, to repeat himself. I was stunned into what was, for me, uncommon silence. He admitted he could see the pain I was trying to hide as the van bounced over bumps in the road, and the energy it took to make these little day trips. The agony at night waiting to finally lie down.
At our next appointment, my doctor made the referral to Dr. Eric Thomas, a MAID assessor and provider for southwestern Ontario. In a couple of weeks he called, and we arranged a visit. He makes house calls, so he doesn’t need an office. When Dr. Thomas came through the door, I blurted out, “Are you Scandinavian?”
Startled, he said, “Yes, my mother is from Sweden. How did you know?”
“The shape of your head, look at mine! Do you have trouble wearing hats?” My mother was Swedish, and my family’s big Scandinavian noggins caused no end of trouble fitting hats. Dr. Thomas agreed with a smile. The ice cracked.
Dennis and I had been so nervous. Dr. Thomas quickly made us comfortable—he had a copy of my extensive medical file stressing I more than qualified. His was the final approval I needed. He affirmed we were completely in the driver’s seat as to when and where it would take place. But he offered sage advice: don’t set a date months in advance. People often change their minds. Instead call him when we knew it was time—he’d arrange it within 48 hours.
His phone number is in my cell.
Dr. Thomas’s bedside manner could not have been more starkly different from the callous, indifferent treatment I received from the doctor who first delivered my diagnosis to me, nearly 50 years ago. End-of-life conversations have become far more complex and far more careful in the decades since, and for that I’m tremendously grateful.
I needed to know how I’ll die. Dr. Thomas explained that it will only take three minutes. First, a heavy tranquilizer, and then the main drug. My bowels won’t let go, much to my relief. We plan to have a few close friends and a family member with us ahead of time for bubbly, and my lifelong friend David playing viola. My long-time nurse, Amy, will accompany Dr. Thomas.
“The person who applies for MAID has a level of empowerment that is hard to measure,” says Dr. Thomas. “Peaceful and dignified most often describes a MAID death.”
***
Last week I bought a yellow acrylic paint tube for clouds I was working on, for a new piece of art. Rolling out of the shop I wondered if Dennis would end up selling my supplies for a bit of coin. After all, dying is expensive. The will, the niche and the cremation will cost around $12,000—pricey for a humble writer. And that cost pales compared to the energy required to take care of everything. With joy, I’ve given a nephew my mom’s writing desk, our Swedish family china and my dad’s Second World War medals. But I have a plethora of personal and Indigenous art, jewellery and nautical items to designate. It’s exhausting. My executors will have to sell the house to cover the remaining mortgage and directions in my will. That means Dennis will need somewhere new to live—with three cats, no less.
I have lists of lists, legal, financial and personal. Legal includes everything my executors must do, starting with calling my lawyer, contacting my beneficiaries, following my last wishes and so on. My executors must also call my bank, open an estate account to handle house expenses and ensure the obit I’ve written gets to the correct papers. The personal list includes who gets my jewellery and art—and first dibs on my awesome clothes, shoes and boots. I’m so grateful that Cin, my friend of a lifetime, is in charge of contacting people after I pass. My dear girlfriend Christine, who is an ordained minister, will conduct my funeral. The list of music to be played is a revolving record as I change my mind constantly.
At times it’s been so damn hard, yet at other times easy, because we forget: that we might not see our Manitoulin Island family of friends, that we might not see another play at our cherished Stratford Festival, then stop for a drink with Glen at Foster’s pub, or sip splendid goblets of prosecco with Christine in the gazebo. That we might not again wake up holding hands.
It’s also 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. 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.
I now suffer from all the final stages of MS. I require four hours of intensive personal care a day, the maximum Ontario will fund. Really I could use more, but I can make do for a few hours alone, while Dennis is at work. A ceiling lift installed in our bedroom means that each morning, Alice, my support worker extraordinaire, manoeuvres me into a sling, and I run the control along the track to the commode at the end of the bed, and descend. There, modesty ends. My bowels release to much fanfare, courtesy of powerful medications. I then ascend and try to pretend I’m somewhere else while Alice wipes me. This occurs at least twice a morning. Then Alice has to dress me—choosing what I wear remains one valuable, tangible choice I have.
Dennis does the job if Alice is away, if my bowels let go in the night. To this day, Dennis reiterates our wedding vow, to love in “sickness and in health.” His gentleness proves it. This dependence shows how broken and lame I am, yet I remain living with joy and gratitude.
“Health setbacks don’t define Diane,” says Elaine Anderson, a university friend of 46 years. “Joyful tenacity is how I describe Diane’s approach to life, embracing the wonder and mystery of the journey.”
Pressure sores and bladder infections continue to hospitalize me. Sores have required day surgery; infections rendered me unconscious in intensive care. Twice, doctors left emergency rooms to tell Dennis they had to get invasive to save my life. “Do it,” he said both times. “I’m not ready for her to die yet.”
I’m on the highest dose of Botox to prevent wrenching, MS-induced leg spasms. I take 39 different medications a day, some multiple times totalling 71 pills plus injections.
But it’s the breathing and digestive troubles that signal the worst. My left lung no longer works well, and my right is getting weaker. It’s getting harder to breathe, and the MS is narrowing my esophagus, which means my very limited diet has necessarily become even stricter.
MS is also causing my epiglottis—the flap covering the trachea, which prevents liquid and food from entering the lungs—to dysfunction. I recently aspirated, meaning food went into my lung. I wheezed painfully for breath that night, and by the time I arrived in emergency the next morning I had pneumonia in both lungs. I experience frequent nausea, and vomit from both my stomach and my esophagus—in the latter case, huge amounts of phlegm and gob come up. I can’t breathe, and tears pour down my cheeks. I fear that if this happens at night, and I aspirate, I could die wretchedly. No one warned me the end could be so breathless and violent.
Yet I remain “joyful in hope,” as Paul told the Romans. My hope is for energy to write, to paint or enjoy Dennis’s awesome scallops and a movie together. Although I am eligible for MAID anytime, I’ve not chosen my date.
In many ways the MAID process is like taking the biggest exam of your life, while going through the entire grief experience from denial, anger through to acceptance and peace. I’ve been doing my spiritual homework for decades, but the lessons continue. Even the fear of darkness as I say my last “I love you” pulls me into light. There’s a crack in everything, to quote Leonard Cohen, and for me, for now, the light of creativity continues to get in.
This year I’ve had both the nail-biting deadlines and joy of writing—most recently for an Ontario-based publisher called Mediacorp Inc. Giving voice to others has been my passion, and wordsmithing is a craft of love, never dread or drudgery. “We’ve been tremendously fortunate to have Diane as part of our magazine team,” says Anthony Meehan, the company’s president.
When I’m finally unable to give voice to others, utter my own voice, use my arms, can’t eat or even swallow a sip, and the pain is too great, I hope for understanding. “I fully support Diane’s right to a dignified death,” emphasizes my own doctor, Sean Blaine.
Fully cognizant, I will summon Dr. Thomas. He will kindly perform his task, as I gaze goodbye into Dennis’s baby blues.
source macleans