Outlier or miracle?
Elizabeth Grandbois has lived with ALS for more than 25 years — long past the normal life expectancy. She is believed to be the first non-HIV-positive ALS patient in the world to be treated with the AIDS cocktail
Elizabeth is making tea.
She fetches the milk and mugs while the kettle boils.
A simple task.
Yet miraculous. Elizabeth Grandbois ought to have died decades ago. Within a few years of being diagnosed with ALS.
Everyone with amyotrophic lateral sclerosis dies. There is no cure. But for Elizabeth, there was hope. She is believed to be the first non HIV-positive ALS patient in the world to be treated with the AIDS cocktail. That was more than 20 years ago.
She regained some strength and mobility. And when she didn’t die, Elizabeth expected to be poked and prodded by scientists. She invited it — literally reaching out to ALS researchers around the world asking if they’d like to study her. There were no takers.
A former ER nurse practitioner, Elizabeth, 71, knows better than to say she has found a cure for ALS. She still has the disease. However, she believes the possible benefits of the AIDS cocktail cannot be ruled out without proper, scientific investigation.
She thinks ALS patients deserve to know her story.
In fact, we can all learn from Elizabeth’s story, because it goes beyond the grief of an ALS diagnosis. Adversity has been a constant in her life and she will say that ALS is not even the greatest obstacle she has faced. But despite that, she has found love and joy and reasons to live for as long as she possibly can.
In 1996, when Elizabeth was 43, she lived in Calgary and juggled nursing, a husband and three kids. Then she had back surgery after herniating a disc while lifting a patient. Recovery was slow.
In August 1997, the family moved to Burlington.
Elizabeth was still struggling with balance and a limp. She thought physiotherapy would fix things, but
she also sought the advice of specialists.
She was in a hurry. She had a family to raise. A household to run. And she was aiming to be hired by the emergency department at McMaster University Medical Centre (MUMC).
That fall, her busy life came to a screeching halt.
In a small office at MUMC, neurologist Dr. John Turnbull diagnosed Elizabeth with ALS.
“I asked if it was terminal,” she says. “He just nodded his head.”
Elizabeth was told she had three to five years to live.
About 3,000 Canadians live with ALS, also known as Lou Gehrig’s disease, after the New York Yankees great who developed increasing paralysis and died in 1941 at 37. ALS prevents motor neurons from communicating with muscles.
Elizabeth’s body would shut down. She would lose the ability to walk, speak, swallow and, finally, to breathe.
Months later, over wine, Elizabeth told a couple of girlfriends she had an idea.
She and her husband Marc had watched the “Tears Are Not Enough” video that joined Canadian musicians together in 1985 to raise funds for famine relief. It was, she says, “a light bulb moment.”
What if she organized a concert? What if she brought together Canadian music stars? All to benefit ALS care and research?
They clinked glasses and Elizabeth’s Concert of Hope was born.
Eventually, the idea grew into 17 concerts over the span of nine years, with the likes of Ian Thomas, Amy Sky, Loreena McKennitt, Tom Cochrane, Susan Aglukark and Murray McLauchlan, taking to stages across the country to raise awareness and more than $2.5 million.
Elizabeth was propelled into the spotlight. With determination but also trepidation, she became the most famous Canadian living with ALS.
“This is my story, a story that started out like a fairy tale and suddenly changed into a nightmare,” began a book of poetry Elizabeth wrote. There were very dark times. “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,” Elizabeth once wrote for the Globe and Mail. “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.”
Two years after her diagnosis, she was using a walker, taking falls, struggling to smile, and having night terrors about her death.
“I was having difficulty doing the stairs. My left hand was not holding a coffee cup safely. My speech was impacted, and my swallowing. I felt like I had a golf ball in my throat.”
“I remember getting ready for a wedding and trying to get pantyhose on. I couldn’t get these damn legs into the pantyhose, and I was getting upset. So I went without pantyhose. Everything was frustrating.”
The first time Elizabeth spoke publicly about her illness was in the spring of 2000 to a Rotary club. The first concert was in its planning stage and Elizabeth was meeting with anyone who might help.
“I bought a new green dress,” she says. “I stood up and I told my story.”
Her doctor, Turnbull, there to show support, was asked to say a few words. He spoke of the need for ALS research. Until scientists understand what causes ALS, they cannot know how to cure it. Or even effectively treat it.
He mentioned an article in the April issue of the Neurology medical journal.
It was written by an American doctor who treated a 32-year-old woman who had AIDS and then developed symptoms of ALS. The doctor prescribed the AIDS cocktail and the woman’s ALS symptoms resolved.
Elizabeth was stunned.
“I want the AIDS cocktail,” she immediately told Turnbull.
She recalls his response: Your insurance may not pay for it, it may be toxic and it is not a proven treatment for ALS.
The doctor said prescribing it could counter his oath to do no harm.
“There’s not much more harm that can be done,” she responded. In fact, she argued he had an ethical obligation to give her the chance.
Cheekily she added: “It’s my problem how I’m going to get the money. I’ll sell telephone sex if I have to.”
“I believed this was the one opportunity I had to beat this,” Elizabeth says. “I had nothing to lose. I didn’t care about side-effects. I’ll deal with the side-effects.”
“You sign a waiver, I’ll write a prescription,” Turnbull relented.
“Doctors are so tied to recommended treatments,” she says, thinking back. “They don’t take risks of going outside the box because they could always be liable. This was very much outside the box for Dr. Turnbull.”
Turned out, Marc’s insurance plan covered the cocktail, which otherwise would have cost $1,500 a month.
“Within five days I remember feeling differently,” says Elizabeth. “I could go upstairs. I could hold my coffee cup. My voice was stronger. I just felt stronger. Maybe because I believed I was stronger, I was acting stronger. But I wasn’t just willing to bank on that.”
At Turnbull’s clinic, Elizabeth’s grip strength was tested. She says within a week it had improved. “I knew it had made me stronger.” Elizabeth says she experienced no side-effects.
For 18 months, only her family and closest friends knew her secret.
When she finally spoke publicly about taking the cocktail and how her deterioration had slowed, Turnbull was deluged with queries from around the world.
Turnbull is a thoughtful balance of empathy and scientific reasoning.
For 35 years he has specialized in ALS care. In 1990 he started the ALS clinic at MUMC, the second largest in Canada, next to Toronto’s.
He and his team have conducted research and treated about 2,000 patients. The clinic sees four new patients each week. The outcome is always the same.
“The survival in ALS is not a bell curve,” he says. “Everyone dies of ALS.”
Among all those patients, Elizabeth is a standout.
No ALS patient in Turnbull’s practice “is doing as well” as Elizabeth is, the doctor says.
One year after beginning the cocktail, Elizabeth had an electromyography (EMG) test to assess her muscles and nerve cells. She says it showed virtually no sign of ALS.
Other tests showed no deterioration in her muscle cells and some increased strength.
Turnbull gave 15 of his other ALS patients an opportunity to try the AIDS drugs. Pharmaceutical company Glaxo Smith Kline agreed to give them free medication.
Since then, 14 of those patients have died. One is no longer in Turnbull’s care and may be alive, but on a ventilator.
“Nobody did as well as Elizabeth. In some cases, all I’ve done is make these people worse,” Turnbull says.
Scientists do not yet understand why some people with ALS fare better than others.
About half the people with ALS live two years, one-fifth live five years, one-tenth live 10 years and one-20th of people live 20 years, according to Turnbull. Elizabeth has lived 27 years.
Turnbull offers a particularly bleak example of a woman in her early 50s diagnosed with ALS one September “and she didn’t see Christmas.”
Outliers are rare, but they do exist. Stephen Hawking, the famous theoretical physicist, lived for 55 years with ALS, although he was unable to walk or talk through much of that time.
“I have had people who just stabilized for many, many years,” Turnbull says, adding he has had patients with ALS who have been stable for 15 years.
Research shows one in 10,000 patients has a “spontaneous reversal,” according to Turnbull.
But living longer can be a problem in itself.
One patient who has had ALS for 20 years and is on a ventilator feels guilty he is alive, according to Turnbull. He believes he is depriving his wife of the opportunity to start a new life.
Some ALS patients die by suicide to end their own suffering, but some, says Turnbull, do it to end the burden on their loved ones.
The cause of ALS is unknown. Turnbull says five to 10 per cent of patients have inherited a gene that predisposes them to the disease. “Even in those cases we have no idea how that causes the disease,” he says.
The lifetime risk of having ALS is one in 350.
Since the cause of ALS is a mystery, scientists have been unable to create a reliable diagnostic test. Turnbull likens it to migraines, schizophrenia and Alzheimer’s, which also lack a definitive test.
Instead, when a patient presents with a progressive weakness, physicians rule out discernible causes such as a brain tumour, stroke, neck issues or muscle disease. ALS is arrived at through a process of elimination.
“We don’t usually make mistakes,” says Turnbull.
Yet patients often cling to the hope of an obscure study or an internet theory. For instance, “every patient asks about Lyme disease,” he says, though there is no scientific evidence of a link.
“If they are insistent, I send them to an infectious disease specialist to be tested,” he says. Sometimes, ruling out Lyme disease is necessary for a patient to accept their ALS diagnosis.
Science, at every point possible, must be the guide for doctors and researchers, Turnbull says, and that can create ethical tension between medical professionals and ALS advocates.
ALS is an “orphan disease” that sparks little interest from big pharmaceutical companies because the illness is rare and short.
There are only three approved ALS drugs. One, says Turnbull, costs about $8,000 each year. The others cost $174,000 and $225,000 annually. All have minimal or unproven benefits, he says.
When he prescribed the AIDS cocktail “off-label” to Elizabeth, he was remaining well inside the parameters of the law, Turnbull says, comparing it to prescribing Ozempic as a weight-loss aid, when it was originally intended as a diabetes medication.
While Turnbull keeps “an open mind” about the AIDS cocktail’s potential to treat ALS, he says so far there is zero scientific evidence to prove it’s effective.
“As a physician, we try to inspire hope,” he says. “Even when you know, deep in your heart, it’s not very likely.”
Yet Turnbull must also consider if
‘‘ Living with ALS for 25 years is not unprecedented, but unusual.
DAVID TAYLOR NEUROSCIENTIST
he is doing a patient harm by prescribing a medication or treatment.
“How do we balance the hope with the side-effects?”
The AIDS cocktail can cause sideeffects such as anemia, bleeding, liver damage, blood-sugar problems, allergies, diarrhea and nausea.
“If the treatment is something innocuous, I don’t mind if they take it, but I don’t want them to hurt themselves.”
He has, for instance, had patients who had all their teeth pulled out because they believed mercury in their fillings caused ALS.
And what of financial harm? “People are desperate, and it opens the door for all kinds of snake-oil salesmen,” says Turnbull.
He can’t, in good conscience, prescribe or endorse an unproven treatment costing so much that a patient has to sell their home to pay for it. ALS already creates a huge economic burden on a family. Younger patients have to quit work and often so does the spouse to become a full-time caregiver. Older patients are on fixed incomes.
They will eventually need to pay for equipment and care the government doesn’t cover and will likely need to renovate their home to accommodate a wheelchair.
Turnbull says many families cannot afford experimental treatments, “and I wouldn’t want them to feel guilty that they couldn’t buy the AIDS drugs or whatever the flavour of the month is.”
There is a political component to ALS treatment, too.
When the AIDS epidemic was raging in the 1980s, people living with HIV loudly demonstrated and lobbied for funding to find a cure. They pushed governments to invest in research and the AIDS cocktail was one result.
ALS patients, because of the very nature of their disease, can’t march on Parliament Hill to bring attention to their plight. The illness is usually so fast-paced and debilitating that patients and their families don’t have the ability to direct energy to an awareness campaign.
Two large research trials, both in the United States, looked at ALS and the AIDS cocktail, which is also known as the HAART treatment (Highly Active Antiretroviral Therapy). Both concluded nobody was better off for having taken the cocktail.
But Turnbull says that doesn’t mean scientists have or should stop exploring the relationship between the cocktail and ALS.
Elizabeth’s Concert of Hope premiered in February 2001 in Hamilton at what was then called the du Maurier Theatre and is now Theatre Aquarius. The sold-out concert grew into a spectacular, multi-year series of cross-country performances.
The journey was documented by Hamilton journalist Connie Smith who became Elizabeth’s close friend.
“Her grace and strength is probably the most inspiring thing about Elizabeth,” says the former CHCH anchor, whose documentary called “Elizabeth’s Hope” aired on that station as well as PBS and networks across Europe. “I was so impressed with this aura, this serenity she exudes. It’s a charm. It’s a human connection. It’s a positivity. It’s a persuasiveness.” Smith encouraged Elizabeth to share her story about the AIDS cocktail with The Hamilton Spectator.
“Why shouldn’t other patients be given the choice?” Smith says. “It’s a story of hope, not necessarily a happy ending.”
The scientific community has such a fear of giving false hope, she says, but it should not be able to take all hope away.
The concerts implied a hope Elizabeth didn’t always feel. But those around her saw her as an inspiration to others.
“Mom, you are really going to make a difference,” Elizabeth’s son, Philippe, told her.
Once, in the home of singer Murray McLauchlan, Elizabeth lamented she didn’t want the events to be all about her.
“You, my girl, are the poster child for ALS,” he replied. “If you’re going to be the poster child, you need to be it all the way. If this is the right thing you’re doing, then you’ll have no regrets.”
She says he was right.
Still, Elizabeth was tired.
In 2005, the Big Black Monster had arrived in her life.
That’s what she called her motorized wheelchair she now used to keep up the pace required of her busy schedule.
And, after five years on the AIDS cocktail — a time during which Elizabeth was expected to have died — she chose to stop taking the medications because she wasn’t seeing any further improvements.
She decided there would be one last Concert of Hope. It would come at the end of a coast-to-coast tour that would take her and a slate of Canadian stars on a grand farewell trip.
The kickoff was just six weeks away when Elizabeth’s life was again shattered by tragedy.
On July 26, 2006, Philippe, 25, died of an accidental drug overdose while attending school at Capilano University in Vancouver.
He was an exceptional hockey player. A goalie. The Ottawa 67s signed him but he never played.
The family had moved often and Philippe struggled to make friends. And he was devastated by his mom’s diagnosis.
He went to Western University, then transferred to McMaster University before moving to British Columbia.
“The unbalancing of who he thought he was eased when he started taking drugs,” Elizabeth says. “He wasn’t using them all the time, but socially he started to develop anxiety. He was such an easy child and then one day, when I realized what he was doing, I asked, ‘Why are you doing this?’ He said ‘It makes me confident. It makes me feel stronger. Faster. Stronger. Smarter.’
And I said ‘You are an honours student and an athlete.’
And he was crying.”
On his last night, Philippe went to a party and used drugs. Later that night, his heart stopped.
Elizabeth says it is Philippe’s death and not ALS that is the great tragedy of her life.
The grand Concert of Hope tour was set to launch in Vancouver. Philippe had helped organize the event there.
“There were 35 artists ready, and there was no one to take over. I knew Philippe would have wanted it to continue,” Elizabeth says.
Deep in grief, Elizabeth was determined to fulfil her commitment to her concerts. So she went on the road, crossing the country for soldout concerts in nearly every province.
After the final ovation, Elizabeth receded from public life for months.
“I watched my marriage disintegrate, my children withdraw and my life implode,” Elizabeth wrote in the Globe and Mail. “I was left alone with my devoted service dog, my best friend Kira. Darkness descended and the night terrors flourished.”
The family was in tatters. Marc left and the remaining children struggled to make sense of it all.
Still, Elizabeth didn’t withdraw for long. Her advocacy work gave her purpose that she was otherwise lacking. She re-emerged to organize several, more intimate, concerts.
In 2009, the final Elizabeth’s Concert of Hope was performed.
“The music was done, the curtains were closed,” she says. “We gave the country the gift of music.”
Meanwhile, the curtain was rising on a new miracle in Elizabeth’s life.
As a kid, Elizabeth spent summers at a cottage up north. Once, a boy her sister briefly dated picked Elizabeth up and playfully tossed her into the lake.
Paul Tovee was his name. Over the decades, they loosely kept tabs on one another through mutual friends. Each got married, had children.
When Elizabeth’s father died in 2005, Paul attended.
A few years later, as they each went through a divorce, they arranged to have dinner.
“She was a pretty nice lady,” says Paul. “My good friends thought I was crazy because of what was coming down the track with Elizabeth and her ALS. ‘You’ve always been a bit of a gambler,’ they said.”
“I don’t see the wheelchair,” he says. “I just see Elizabeth. The girl I knew.”
They have been together ever since.
“He carried laughter and light to my darkest moments,” Elizabeth has said.
“He makes me laugh. He’s my best friend.”
The last time Elizabeth saw Dr. Turnbull was eight years ago. At a fundraiser.
She hasn’t needed a proper appointment with her neurologist because, apart from her wheelchair, ALS became “less significant” in her life. Gone are the night terrors of her own death.
“I’m hoping something else takes me,” she says.
“My angst about ALS is more about the secret I live with,” she says of her five-year experience with the AIDS cocktail, which she believes drastically slowed the progression of her ALS. “No one has really been interested — outside friends and family — as to why I’m still alive.”
Elizabeth recognizes the cocktail may not be the miracle she wants it to be. She knows she may simply be an atypical patient. Consequently, she says she would accept the conclusions of a scientific study, no matter the result.
About six years ago, on Christmas Eve, Elizabeth got a phone call from a senior researcher at the National Institutes of Health in the U.S. He asked for her blood.
He was studying ALS and knew Elizabeth’s story. She readily agreed.
But a year after sending her blood, she had heard nothing. She emailed the scientist.
“We’re still researching,” he answered.
In the end, his study could not find any benefit to ALS patients taking the AIDS cocktail.
She then contacted a scientist in Winnipeg who was also studying the cocktail’s effect on people living with ALS.
“I got zero response.”
Next she contacted a doctor in Australia who was working on ALS research. He messaged back and said he was glad she was well and there was a pilot project ….
Elizabeth asked for more information. She never received an answer.
“Even though there was something incredible happening, nobody was interested,” she says.
In 2006, neuroscience PhD student David Taylor attended one of his first conferences.
The evening speaker was a remarkable woman with ALS named Elizabeth Grandbois, who had been staging Concerts of Hope across Canada.
“She was the first person living with ALS I had ever met,” says Taylor. “She had a very natural warmth to her. I remember it being very uplifting in the way she spoke about it. It was very motivating as a young scientist.”
Today, Taylor is vice-president of research and strategic partnerships with the ALS Society of Canada.
The impact Elizabeth unwittingly had on Taylor is significant. At that time, young scientists didn’t have much opportunity to meet people with ALS. The scientific culture wasn’t as patient-focused and there was no social media to allow patients and advocates to have a voice.
‘‘ It is understandable that she feels it’s a travesty that people haven’t had the opportunity to experience what she has.
DAVID TAYLOR NEUROSCIENTIST
The funds raised by Elizabeth had a very real impact on the education, support and research conducted by the ALS Society, but also on the trajectory of the organization. Elizabeth spurred the society to become more “sophisticated,” Taylor says.
The number of people in Canada living with ALS is growing slightly. Taylor says researchers are unsure if ALS is on the rise, or if the increase is because doctors are better at diagnosing it. It may also be tied to the aging population, since age is a risk factor.
What is certain is that care for ALS patients has improved. In some cases, people with ALS live far beyond what is expected.
“Living with ALS for 25 years is not unprecedented, but unusual,” says Taylor. “We do know some people will slowly progress with the disease.”
Even fewer people experience a “reversal.” Meaning that while they still have ALS, its symptoms improve. Scientists have so far been unable “to decipher how or why that’s possible,” though the secret may lie in “the genetics of the individual.”
One theory is that ALS can be caused by a dormant virus that is part of our genetic code which can be activated again, leading to ALS.
Taylor says it is remarkable Elizabeth has “lived well for so many years.” But her well-being can’t be chalked up to the HIV cocktail.
“We don’t know if the experience she had was because of the treatment or her natural course of the disease. It’s very difficult to learn from one individual.”
“I think the real point is there is just zero evidence. That’s a really hard thing to say, because you don’t want Elizabeth to think it didn’t work. It is understandable that she feels it’s a travesty that people haven’t had the opportunity to experience what she has.”
“Her feelings are 100 per cent natural.”
Taylor points out that with the AIDS cocktail — unlike some other untested treatments for ALS — “there is some validity to the potential of this one.”
Taylor says most doctors are waiting for scientists to figure out the cause of ALS before they start prescribing treatments. Large, controlled studies of potential drug treatments are needed. Studying potential treatments in an “informal way” only does a “disservice” to the goal.
“This is a clinical community that weighs evidence as a very strong indicator of what they’re willing to prescribe for their patients. I think a lot of them are very careful because there’s no evidence to support it works. Physicians do not want to give people treatments that could potentially make them worse.”
Other long-surviving ALS patients have taken different experimental treatments — supplements, or changing their diets — that they feel have worked for them. However, there is no evidence any of it is effective.
“When you have a landscape like that, you can’t just pick one and call it successful with no evidence,” says Taylor. The ALS Society does not want to endorse expensive and potentially harmful treatments that have not been proven.
“ALS strives for equity across the country when it comes to any treatment,” says Taylor. “The ALS ecosystem in Canada is very aware there are a lot of people who couldn’t pay for any therapy out of pocket.”
The only answer, says Taylor, is more research and more studies. And that costs money. There is little government funding available in Canada because ALS is a rare disease.
“I wish we could test things faster. I wish we could know things sooner.”
“Time is very precious.”
Elizabeth and Paul live in Burlington with Molly, their shy golden retriever.
The house is two storeys, however, Elizabeth only uses the first floor. It is open and uncluttered to allow for her wheelchair.
Elizabeth knows her public legacy is her concerts, and she is proud of that. But she would like more. She would like to be the person who helped establish the AIDS cocktail as an accepted treatment for ALS. She wants to have helped other ALS patients live longer and better.
Advances in medical care have made small improvements in the lives of ALS patients since Elizabeth was diagnosed, she says. “Better machines” help them live longer and more comfortably, but they are still “dying voiceless, unseen and alone in their homes.”
“They’re invisible because they die so quickly.”
Elizabeth frequently refers to the 1992 Oscar-nominated movie, “Lorenzo’s Oil.”
It is based on the true story of a family on a quest to cure their son’s rare and fatal illness. They find what they believe is a cure devised from olive and rapeseed oil.
“Sometimes the answers are closer than we think they are,” says Elizabeth. “We have blinders on.”
“There’s still a part of me that doesn’t want it to be about me. I want it to be about other people knowing there is a possibility out there that may be able to help them … I just need to share what I know. What I believe.”
Meanwhile, Elizabeth lives on. She moves forward.
Some days she paints. Or writes poetry.
She adores her three grandchildren by her son Andre and daughter Renee, and lights up when she speaks of them. Plus Paul has four grandchildren.
And then there is the grandchild Elizabeth never knew she had.
A young woman once spent a night with Philippe.
She had a child. He never knew. Their daughter was 18 months old when Philippe died.
“She didn’t want to tell us because I had ALS and she was embarrassed,” says Elizabeth.
Five years ago, when the child was 14, the child began pestering her mother to join an online DNA genealogy company in an effort to search for her birth father.
A connection was made with Andre, DNA testing was done and it was confirmed Philippe was the father.
Andre told his mother she had a granddaughter she’d never met.
Two hours later, the woman and her daughter were welcomed into Elizabeth’s home. That visit lasted 12 hours.
Elizabeth was shocked, delighted and eager to know them.
When it was time for them to leave, Elizabeth wrapped her granddaughter in Philippe’s beige corduroy jacket.
“When she came that day, I saw my son in her face,” says Elizabeth, who gets together with the girl, now 19, a few times a year. “I think the knowledge has settled her. She wrote me a letter that the hole in her life is now filled.”
While it is miraculous Elizabeth is alive, it is perhaps more astonishing that she is capable of joy.
“My experience is that joy or happiness is not a state of being. It comes in moments. When I need to find happiness, I look to the next moment. Whether it’s my grandchildren running through the door, or decorating for Thanksgiving or going out with friends for dinner.”
Elizabeth’s pain is never far away though. She doesn’t pretend otherwise.
“There’s a constant weight of sorrow that sits very deep. It just sinks. It never goes away. It just sits there.”
Still, she is less afraid of dying than she once was. Aging has changed her perspective.
“I don’t think as much about what I’m losing now with my death as what other people will lose without me.”
She worries most about how her son and daughter will cope with her death. They have all felt the aching pain of loss and she can’t bear the thought of her children going through it again.
“I know how they’ll feel when I pass on. The bonds between us are unlike other families. We’ve had to save each other. With their father leaving, their brother dying … My loss will be so significant in their lives.”
Until then, Elizabeth strives to live in a way that will inspire her children.
“I want to share the wisdom I have learned … To the day we die we are setting examples of how to behave in times of trouble. How to navigate the hard times. People are watching you.”
Elizabeth may never push ALS science forward.
Though that disappoints her, Turnbull says from his perspective, that is not her legacy.
“If you had to identify a factor in her that is truly remarkable, it wouldn’t be biological,” he says. “It would be psychological. A psychological outlook that helps her to carry some of the burden. No matter what the world throws her way, she has found it within herself to be buoyant.”
Turnbull wants to make it clear he is not serving up “toxic positivity.” No amount of hope or positive thinking will cure Elizabeth’s ALS or save her life. “But it can help with survival in the face of adversity.”
‘‘ My experience is that joy or happiness is not a state of being. It comes in moments.
ELIZABETH GRANDBOIS
The tea is ready. Elizabeth pulls her wheelchair up to the kitchen table and prepares to tell the story of her life. She speaks softly and carefully. Some of that is the ALS. Mostly, it is just Elizabeth. She begins at the end.
“It’s a privilege to grow old,” she says.