My disabled sister’s struggle to be understood – and my mother’s tireless quest to help her

Jillian Horton is a physician and the author of We Are All Perfectly Fine: A Memoir of Love, Medicine and Healing.

Last summer, after more than 50 years in Brandon, Man., my parents sold their house, and made the two-hour move to Winnipeg to be close to me and my sister. But here I leave out a crucial word, because the sister I am referring to is my living sister, not the one they left behind in Brandon, buried a few hundred metres from the home where she died.

If your parents or any older adult in your life has ever moved out of a house where they have spent a lifetime, you have known “the decanting.” Adult children become the keepers of things their parents couldn’t bear to throw away – china, books, photo albums. These things often look like junk, detritus. But they are often the receipts of a family’s history, the literal proof of lives.

One day my mother gave me a plastic bag containing a pile of papers. “I thought you might want these for something,” she said. “They’re all about Wendy. They go back a long time.”

I took them from her, my complicated inheritance.

Something else in that small cache of papers had survived the cull. She had kept it for more than a quarter of a century. It was a copy of Maclean’s magazine, dated Nov. 17, 1997. On the cover was a picture of Robert Latimer, the Saskatchewan father convicted of killing his disabled daughter, Tracy, in 1993. In the photo, Mr. Latimer held Tracy on his lap underneath the headline, “Should Robert Latimer Go Free?”

Tracy’s death – and Mr. Latimer’s case – were deeply, deeply personal to my parents. And let me be clear: that is not because they agreed with what he did.

It was because they knew what it was like to feel totally and completely helpless: to be gaslit when you asked for resources to make it possible for you and your to child live, and received help that looked very different on paper than it did in real life.

My mother kept more than that magazine. She did something important.

She kept the receipts.

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My sister Wendy Anne Horton was born in 1962, in a speck of a town of Gimli, Man., She was in seemingly perfect health, what we now call a neurotypical child. She was chatty, funny and articulate. The pictures of her from those years are almost unbearable to look at. She rides in a red wagon, clutching a stuffed bear. She mugs for the camera, sporting an irresistible grin. She is divine and unremarkable in the way someone else’s baby can be both these things at once.

In 1963, my dad was posted to the Air Force base in Clinton, Ont., and he, my mom and Wendy relocated. My brother, Christopher, was born that December. He had a congenital heart defect that required major surgery in the first year of life and was so skeletal my mother remembers the nurses in the children’s hospital in London, Ont., being afraid to pick him up.

Chris lived through that open-heart surgery, never really thriving, but surviving. By 1965, his health appeared to have stabilized, and in 1966 my dad took a job teaching electronics at a community college in Brandon, Man. My sister, Heather, was born a few years later.

My parents bought a house on an idyllic-sounding street called “Silver Birch,” and there, my dad poured a concrete wall along the side of an enormous red fence he built, writing all three children’s names in it along with the year: 1969.

Years later, I would sometimes detour to that part of town so I could walk by that concrete wall and trace my fingers along the outlines of my siblings’ names, as if it were a gravestone.

I think it marked my family’s last good year.

Wendy was 4 when my mother says she first knew – really knew – something was undeniably wrong.

Wendy could never hop on one foot. She threw up some mornings before kindergarten, her vomit arcing across the room in a sign a junior medical student would be able to identify as an ominous hint of raised pressure inside the brain. And yet, my parents were repeatedly assured by a wide array of doctors in Brandon and Winnipeg that Wendy was fine.

In 1969, on an annual medical visit to London – the city where my brother had had his life saved, and where he was regularly followed by cardiologists – my parents described Wendy’s symptoms to my brother’s doctor, and asked if he could arrange for a specialist to see Wendy. She was immediately sent to a pediatric neurologist.

That neurologist only took a few minutes to make the diagnosis. He used a simple tool, a fundoscope, and, leaning over my sister, he saw it as clear as anything – papilledema, a snake pit of engorged vessels obliterating Wendy’s optic disc. He knew right then that Wendy had a mass in her brain.

The neurologist was dumbfounded. He said to my parents, “Hasn’t anyone ever looked into this child’s eyes?”

That day was the end of Wendy’s first life. After her surgery, with its catastrophic complications, her second life began, and nothing would ever be the same.

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My mother’s earliest missives were to the Manitoba Department of Education, during the years after Wendy’s surgery when she had to fight relentlessly to get Wendy back into school. There were no such things as educational assistants in the 1970s – and nobody to help a child in a wheelchair with multiple disabilities. But it wasn’t until later, in 1986 that my mother thought to start keeping track of her letters, never imagining that her collection would come to span decades.

Some of the letters she gave me are ones she wrote herself; the others are a collection of replies from politicians, social workers and civil servants – including a number of former Manitoba political luminaries. I find them almost unbearable to read, like handling hot coal. She wrote them late at night at our dining-room table, hunched over in a funnel of light cast by an antique glass fixture, pouring her anguish onto foolscap sheets.

Wendy’s surgery years earlier had been a “success”; her brain tumour had been completely excised. But in the days after that surgery, she developed bacterial meningitis. That infection changed the course of her life. Over a few cruel days, Wendy lost the ability to talk, write, walk, regulate her emotions and control her body. Eventually, when she was conscious, she often raged and fought, unable to speak or communicate her terror, pain and frustration.

As soon as it became clear that Wendy would be left severely physically and mentally disabled, many medical professionals began suggesting to my parents that everyone would be “better off” if she were in an institution.

But who exactly would be better off? My parents’ dream for Wendy’s life did not include separation from her family. They railed against ableism long before it had a name. They knew Wendy’s worth as a person with a disability was unchanged from her worth as a child born without one. But as is so often the case when parents fight and advocate tirelessly for disabled children, they were often branded “the problem.”

Another remarkable thing about Wendy’s story is that my parents never stopped believing that some degree of recovery was possible, even in the face of the pervasive cynicism from professionals. We now know that severely injured brains like my late sister’s can relearn complex tasks, a principle known as neuroplasticity. But neuroplasticity requires opportunity. Rehabilitation needs to be relentless. And in a small 1970s prairie town, there was no rehabilitation team. When my sister was discharged home after two brutal years in and out of various hospitals, my mother and father were that “team.”

Wendy was almost eight years old the day they finally brought her home for good. As my parents unloaded her from the car in the back lane by that concrete fence dated 1969, they lifted her into a flimsy, borrowed hospital wheelchair. My mother has a vivid, flashbulb memory of a faceless kid in the back lane shouting like the town crier, “Wendy Anne Horton’s home from the hospital! She can’t talk, she can’t walk, she can’t do nuthin’!”

My parents wheeled Wendy to the front door, lifted her up the stairs, then took her to her childhood bedroom. From the height of her wheelchair, Wendy unexpectedly launched herself onto the carpeted floor, struggling silently to propel herself toward a chest of drawers.

It was obvious to my mother that Wendy wanted something, but what? She’d recently regained the ability to print in capital letters, and so my mother put a pen into Wendy’s left hand. She steadied that flailing, tremulous hand for almost an hour while Wendy tried to write something legible.

Like a message on a Ouija board, the letters emerged slowly, one after the other.

J – W – L

“Oh, Wendy,” my mother said, her voice surely cracking as it dawned on her, “I know what you want. You want your jewellery.”

Wendy tried to say yes, shaking with relief and exhaustion. Yes. She wanted her jewellery.

I imagine this as a kind of Helen Keller moment between my sister and mother – both of them in anguish, trying to communicate in a void, my mother’s grief and my sister’s desperation building, until suddenly, a light went on – the tiniest candle flickering in the darkness. It feels embedded in my memory even though I wasn’t yet born. My mother going into the chest of drawers, retrieving the cardboard musical jewellery box adorned with a plastic ballerina in a tiny hoop skirt. Then, propping up my tiny sister in her lap, helping her take out those trinkets, one by one. Beads, a silver charm bracelet, a string of imitation pearls – beautiful, like my courageous sister – and just one of the millions of Herculean efforts she made throughout her life, only to be seen and heard.

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I was born in 1974, 12 years after Wendy. Sometimes I wonder at the faith it took for my parents to have me. My other sister, Heather, was healthy. But with two sick children with incredibly complex needs, didn’t they fear how they would manage another medical catastrophe? Maybe what had happened in our family already seemed so improbable that they took a strange comfort in it, thinking lightning wouldn’t strike the house on Silver Birch again. Surely simple mathematics would protect me. Or maybe they believed, consciously or unconsciously, that there was some broader calculus at work in the universe, that tragedy was doled out unevenly, but not obscenely.

That is wrong, of course, as survivors of far more brutal disasters can tell you – whole families are wiped out in earthquakes or tsunamis, lives are upended and ended through generations in war-torn regions. Myriad illnesses stalk families – Huntington’s, cancer syndromes, predilections for severe mental illness. As a doctor, I think of them as casual, impersonal cruelties of nature – the deletion or mutation of the occasional gene, the random assignment to that much more difficult life.

Maybe that is part of why I don’t always know how to describe my childhood. I’ve written about it before, but even in that telling, there is always a plexiglass wall between it and me. As with any healthy sibling of a person with a disability, mine was not the more difficult life. And so it becomes difficult to articulate that anything is hard or painful, lest you be perceived by anyone as complaining, when your lot is so much easier than the alternative.

Let me at least offer that it was challenging – Wendy unable to reason or control her emotions when frustration overwhelmed her, relearning so much of what had been taken from her, my brother with a suite of troubles of his own.

There were absolutely moments of happiness. Some of my earliest memories are of colouring with Wendy, watching The Muppets with her on her little television, the raucous way she laughed that made everything seem that much funnier. Camping with her and gathering driftwood from Lake Superior. Riding in her lap while she sat in her wheelchair when I was very small, her asphalt-black hair meticulously braided by my mother in two long ropes.

There were also months and years I would rather not relive. My sibling’s yelling and shouting, falls and injuries and seizures, fits of frustration and anger, radios and televisions blaring, help with toileting, sleepless night after sleepless night. Then lightning struck my brother twice. He developed severe mental illness in his early teens, requiring intensive psychiatric care and group home placement for much of the rest of his life. My parents’ modest dreams that he simply live independently were shattered. But at least he fit into some kind of existing pathway of long-term care.

There were no such things for people like Wendy. My parents just wanted her to be able to live her life with safety and dignity. That seemingly simple quest became their life’s work.

It would almost break them.

My mother’s first letter to Manitoba Premier Howard Pawley is dated Nov. 21, 1987.

By 1987, Wendy was 25 years old. She had aged out of the school system at 21, and from that time on, there were no “suitable” programs she was welcome to attend. At an age when the kids she had gone to kindergarten with were finishing universities and starting families, Wendy’s life revolved around television and radio, and she was totally dependent on her family’s care.

Against all odds, Wendy had regained her ability to speak, read, write, feed herself and do some basic physical tasks. Her interests were eclectic and even inexplicable; she devoured comics and country music magazines. She loved the soap opera Another World, could name every type of dinosaur, adored the British monarchy and had a wicked sense of humour.

But Wendy’s needs were also voracious. Her badly damaged frontal lobe no longer had the capacity for reasoning, and it hijacked her brain’s cockpit. Going to McDonald’s at 1 a.m., driving to Nashville to talk to Dolly Parton about co-writing a song, and putting together a team of experts to raise the Titanic are examples of actual schemes that figured prominently in her day-to-day life. To her, they all seemed legitimate, and each took on the time-sensitive urgency of an organ transplant. This surreal combination of high cognition with no reasoning meant Wendy could be not only hilarious, but also incredibly persistent and disruptive. As a result, she was unwelcome in any of the array of day programs for people who had more severe forms of cognitive impairments but did not pose any behavioural problems. My parents were told repeatedly that no existing group home in the province could accommodate such disabilities, and Wendy was “unsuitable” for personal care homes – a statement they agreed with, since Wendy didn’t have much in common with older adults near the end of their lives. Wendy needed a residence that was capable of managing the complex medical needs of adults with brain injuries. The problem was that in Manitoba there was no such thing.

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By 1991 – five years after her letter writing to government officials began, and tired of inaction – my mother started writing to the opposition parties. She wrote a desperate letter to Senator Sharon Carstairs, then leader of Manitoba’s Liberal Party, describing her life as Wendy’s full-time caregiver. Ms. Carstairs replied a few weeks later:

Perhaps because my mother had involved Ms. Carstairs, a reply to a previously unanswered letter to the Minister of Family Services, Harold Gilleshammer, arrived a few days later. Mr. Gilleshammer wrote that it was “agreed that a placement in a community residence was the preferred and most appropriate option.” And yet he closed his letter:

I think my mother got under the skin of bureaucrats because she had been through too much in her life to mince words. She wasn’t afraid to point out hypocrisy, discrimination or contradictions, and she had the ability to sniff out insincerity at a hundred yards.

Ms. Carstairs also blasted Mr. Gilleshammer’s response:

That was it, in a nutshell; the Alice-in-Wonderland nature of what families like ours were up against. My parents – like most other families fighting for their disabled children – were just two regular, exhausted, traumatized people trying to advocate for their profoundly disabled daughter.

As the letter-writer, all my mother had was her unwavering love for my sister and a pen. It was as if people were counting on one of those two things to finally run out.

But somehow she kept writing those letters.

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The Maclean’s magazine my mother saved from 1997 is an in-depth report on Robert Latimer’s trial and conviction for murder.

“While he may feel relatively isolated on his 1280-acre canola and wheat farm,” reads the feature, “Latimer is at the centre of an emotional public debate that is addressing thorny ethical and philosophical questions about the fairness of the Canadian legal system, the value of a human life, the meaning of pain and suffering, and the morality of mercy killing.”

The Maclean’s article quotes Mr. Latimer’s lawyer, Mark Brayford, as arguing that Mr. Latimer had no choice but to kill Tracy to alleviate her pain and suffering. Mr. Brayford told the jury that Tracy could not be prescribed anything more than regular Tylenol because of complex interactions with her anti-seizure medication and unacceptable sedation. Tracy’s mother Laura testified on the stand that her daughter was facing yet one more drastic and disfiguring surgery.

“Now they’re going to start mutilating my little girl,” Laura Latimer reportedly said. “It just seemed like something you wouldn’t do to your pet.”

In the Maclean’s article, Mr. Latimer speaks to the reporter Sharon Doyle Driedger in the weeks after his verdict.

“I don’t believe the jury had a good enough idea of just what Tracy’s problems were,” he said. “People think she was a happy little girl. I cannot understand these people.”

Why not institutionalize her? Ms. Driedger asked.

“That wouldn’t have done her any good,” insisted Mr. Latimer. “We put her in a group home and she lost a sixth of her body weight.”

That resonated, for very specific reasons.

On March 22, 1991, Harold Gilleshammer replied to Sharon Carstairs’s indictment of his letter to my mother.

My mother, who is copied on this letter, replies to Ms. Carstairs with palpable outrage:

My mother sent those sickening medical reports to both Mr. Gilleshammer and Ms. Carstairs. Ms. Carstairs wrote that she was “shocked” by them – although she expressed confidence that conditions at the centre had improved, “particularly as there has been a substantial reduction in the numbers being serviced in that community.”

In 2018, the Manitoba Development Centre was the subject of a massive class-action lawsuit, alleging residents were sexually abused and starved. (A $17-million settlement was reached in May of this year.)

These were the “options” that were often afforded to people like Wendy, and families like mine.

It was much easier for everyone to pretend we had real choices.

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In 1992, a new name appears in my mother’s archive of letters. James C. McCrae was our member of the legislative assembly, and after the 1988 election returned the Manitoba Provincial Conservatives to power, he occupied a series of high-level government appointments. In 1992, he was Manitoba’s Minister of Justice. That year, I was finishing high school, planning to leave the province for university, anxiously contemplating leaving my parents alone with the monumental challenge of Wendy’s care.

In one of her letters to Mr. Gilleshammer from 1990, my mom writes that she was afforded an average of 16 hours of respite care a week. During those precious 16 hours, my mother started to go down to Mr. McCrae’s constituency office. Mr. McCrae had a big-hearted assistant, a woman named Donna. She was charismatic, with the gravelly-voice of a jazz singer. She never treated my mother like a nuisance; she seemed to understand the desperate nature of Wendy’s situation. Donna always poured my mom a coffee and spoke to her like an old friend. Mr. McCrae was frequently in Winnipeg, but Donna always promised to relay my mother’s messages to “Jim.” And she actually did.

In his first letter to my mother, Mr. McCrae displays a true grasp of the situation. This is what always stood out to me about Mr. McCrae. He did what most others had not bothered to do: He researched what services were actually available for a person like Wendy, and promptly discovered there were none.

In a letter dated March 16, 1992, Mr. McCrae made a very concrete suggestion: My parents could pool resources with others in the community to establish their own group home. He suggested specific funding sources. He offered the direct support of his staff. He ended with a promise to do what he could to help.

In close consultation with Mr. McCrae’s staff, my parents spent the following year working with another family in a similar situation and wrote a heavily researched proposal for a group home. It was the kind of final product a government would have paid several thousand dollars for a consultant to put together. My parents did it for free. Later, Mr. McCrae would leverage his influence as Minister of Health into resources and strategic supports for my sister’s care.

It was far from the end of my parent’s struggles to secure a livable future for Wendy, but it was a critical first step.

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I reached out to Jim McCrae this year. He is 74. He still lives in Brandon, where he currently sits on the Social Services Appeal Board for Manitoba.

“The recollection I can share with you about your family was that they were not just another sort of, ‘angry person with a cause,’ ” Mr. McCrae told me. “There might have been anger – I don’t know – but it was never put across that way to me. It was ‘please help somehow.’ That’s the way your family was. They were not confrontational people in my mind at the least.”

I told Mr. McCrae that his advocacy for my family had been critical during very bleak years. I contrasted it to countless bureaucrats and administrators who had offered non-solutions – who seemed to regard Wendy’s existence as a nuisance, sometimes even patting themselves on the back for their ineffectual interventions. I told him his compassion had been particularly rare and exceptional, and we still remembered it gratefully more than 30 years later.

True to form, Mr. McCrae graciously deflected my praise. “I don’t think I can claim a whole lot of what you are offering to me,” he insisted. “But I appreciate it very much.”

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Wendy and Tracy Latimer led very different lives.

Tracy died when she was 12. Wendy died in her sleep in 2015 – my parents self-managing her complex care – when she was 52. Tracy was non-verbal. Wendy was able to articulate her thoughts and emotions to a degree that strangers often found unbelievable in light of her physical disabilities. Tracy suffered from painful contractures. Later in her life, by the time I had finished medical school and returned to Manitoba to practice, Wendy had a laundry list of excruciating medical issues. She suffered from extreme and severe chronic headaches, as well as a second cancer, a seizure disorder that left her partly paralyzed, a recurrent infection that left her malnourished and emaciated, and terrifying auditory and visual hallucinations she could not distinguish from reality.

She had a caring and gifted family doctor, and a specialist who tried all his tricks to help alleviate her symptoms. But none of the tricks worked. She received excellent medical care in those final years, a mercy for which I will always be grateful. But her symptoms were intense and relentless, and her suffering was absolutely brutal.

Mr. Latimer’s prosecutor asked the jury, “if Tracy should die because another person cannot bear to watch her fight.” But thinking about it in terms of my own family’s struggles, that question strikes me as egregious.

The heart of my parent’s agony – and so many parents just like them – wasn’t centred in their own experience. It wasn’t about what they could stand to watch.

It was about what their daughter had to bear.

Maybe you could only ever really care about that distinction if you were there.

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My mother’s stack of letters from politicians don’t do much to humanize Wendy. The best way to do that is with the letters Wendy wrote herself. My mom kept an archive of those, too.

Wendy wrote them on her Underwood typewriter late into the night, pecking out a key at a time. They offer a window into the personhood, the eccentricity, the absolute hilarity that was so often stripped from her in the characterizations of politicians and bureaucrats.

The addressees are talk show hosts, celebrities, the local mayor, radio personalities, tobacco companies, her grandfather, the Queen.

I thought about her last year when I read about Sathya Kovac, a 44-year-old Winnipeg woman with ALS who chose medically assisted death because she no longer had the energy to fight with the provincial government for the supports she needed to live.

“Life doesn’t end with less physical ability,” Ms. Kovac said. “It ends with less support.”

Neglected by her government, I wondered if she also had a stack of letters like my mother’s before she chose the only real option she had been afforded.

We push people so close to the brink. The wonder isn’t that they break. The wonder is that it doesn’t happen more often.

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Last summer my kids and I were up at the lake. It was the eve of Wendy’s birthday. We had gone for ice cream and were walking back along the gravel roads. My boys can’t remember her any more, and I wanted to tell them a story about her.

I asked my sons if they had heard of Helen Keller. They said yes. I said I wanted them to know there are a lot of Helens in the world, whose hardships are sanitized to suit various agendas, whose stories never make it into inspirational books. There is a lot of pain between the epiphanies. Some people have to work so hard just to live.

I started to tell them the story of the day Wendy came home from the hospital when she was just shy of 8. But then my voice seized up, choking on each of those letters:

J, W, L.

My middle son put an arm around my shoulder. He was almost 12. Twelve, like I was in 1986. Twelve, like Tracy Latimer was when she died. Twelve is so young to suffer unrelenting pain. It is young to watch your powerless mother write endless anguished letters. It is young to see your mother cry.

“I just wish she had an easier life,” I finally manage to say through my tears. “I wish she could still be here with us.”

But I told them how amazing, how improbable it was that Wendy made it as far as she did.

Struggling to be understood, just like my mother – one urgent, painful letter at a time.