what happens when you don't die on time?
9 minute read
after emptying her bucket list, hélène campbell finds herself wondering what's next.
bruce deachman
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postmedia
“i suck at dying.”
hélène campbell says this both matter-of-factly and jokingly. the two-time double-lung transplant recipient has had plenty of opportunities to meet her maker, especially after learning years ago she wouldn’t qualify for another transplant. it’s not her lungs that are likely to kill her, though: the anti-rejection medication she must take exacts a heavy toll on the rest of her body, and doctors have long warned that kidney failure is the more probable endgame.
that delicate dance — protecting the health of her adopted lungs at the expense of other organs — spiralled downward in the years following her second transplant, in 2017. in november 2022, campbell was told she had between nine and 12 months left to live, give or take. that put her estimated “expiry date” — her words — sometime between august and november 2023.
better get to that bucket list.
and she did: a mediterranean trip with her parents, her sister mary and a couple of friends in 2023, followed by an alaskan cruise with her grandmother — trips she previously wouldn’t have considered because of insurance and health-care constraints.
“but if i’m dying,” she reasoned, “it doesn’t matter.
“it sounds terrible,” she recently told me, “but i thought, ‘if i’m not here and this money is still here, i could give it to my siblings — or i can have experiences with my siblings and friends now, where we make these memories.’”
she bought gifts. she treated friends to meals. around the time her best-before date passed without incident, she attended a concert in montreal by gregory alan isakov, afterwards telling herself: “ok. now i can die.”
she made smaller plans, too, like making it to an upcoming wedding or the birth of her nephew. some hoped-for milestones were darkly comic, revealing her sense of humour: staying alive long enough to see avatar 2, for example, or the planned wicked movies.
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“there’s actually a privilege in finding out you have limited time,” she said. “it gives you the motivation to focus on your priorities and do the things you’ve been putting off.”
bit by bit, she emptied her bucket list — and, not insignificantly, her bank account — and now, at 34, is left to wonder: “what next?” she wasn’t supposed to be here now. she’d prepared for that final trip. and now it’s on hold for … well, no one knows for how long.
these days, the questions she finds herself circling are unexpectedly ordinary. should she look for a job? should she consider dating? they’re the kinds of decisions that assume time — not just months, but years — suddenly a strange constraint when trying to plan a future. she had already organized her life around an ending. now she’s expected instead to plan for something open-ended.
this is not a cautionary tale. nor is it about overcoming adversity or beating the odds. we’re good at telling those stories — stories about rising up.
we’re far less practised at what comes after someone has already accepted an ending and reorganized their life around it — the what-happens-next part. what does a person’s inner landscape look like when she believes her life is almost over? do her plans get simpler, her priorities clearer? and when that ending doesn’t arrive as expected, what next? the prospect of living past a life you had already finished arranging can be unsettling — unwelcome, even.
and it’s inevitable in some cases. prognoses, after all, are never fixed calendar appointments. according to dr. james downar, head of the division of palliative care at the university of ottawa’s department of medicine, even when physicians are drawing on solid data, they’re simply trying to communicate probability — and the odds of being wrong are high. “if we’re going to make an estimate of somebody’s survival, we’re probably going to be wrong, but we’re usually optimistic.”
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when an estimate becomes the organizing principle of a patient’s life, and subsequently proves inaccurate, the aftermath can be jarring. that uncomfortable space between having accepted an ending and being forced to keep going is hardly unique to campbell.
bill staubi was also ready to die.
diagnosed with stage-4 liver cancer that had already metastasized to his lungs, he was told in november 2023 he had about 18 months. it was a diagnosis staubi says his oncologist was reluctant to give, only relenting after staubi said he would otherwise go online and find some number to use in planning for his remaining time.
unlike campbell, he didn’t have a bucket list. he looked at his remaining time as an opportunity to get done what had to be done. within days, he applied for medical assistance in dying, or maid. he began monthly immunotherapy and a short course of radiation. he started doing the practical work of dying: divesting himself of his collection of nearly 1,500 pieces of art, notifying friends and family, and writing an emailed newsletter outlining his condition, treatment plan, and wishes. he valued his independence, he wrote, and didn’t need help yet. and as an atheist, he didn’t need to be notified of friends’ “thoughts and prayers.”
he moved quickly to acceptance and pragmatism. there wasn’t time, he said, for denial or despair. “i had shit to do.”
this past november, about six months after his prognosis estimate had come and gone, staubi learned that his cancer had gone into remission. that’s when he got angry.
“i had been so invested in preparing for my death,” he recalls. “and then it quickly dissolved into annoyance. i had gone from not knowing when i was going to die to not knowing whether the cancer was going to come back.
“my initial reaction was ‘what am i going to do with this? how do i move forward? how do i stop my brain from going in the direction it was going?’”
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friends, meanwhile, were reacting to the remission with joy — an exuberance staubi found difficult to share or return.
when he tried to express how unsettled he felt, he was often met with reassurances he didn’t find at all comforting. “oh, well, you don’t need to plan,” friends told him. “you’re like everybody else now. you’ve got your whole life ahead of you.”
“and i’m thinking, yeah, theoretically,” staubi said. “i get it — we’re all one-step-in-front-of-a-bus away from dying, but i also know that every three months now i’m going to have to face the possibility that, when the tests come back, the cancer will have recurred.”
staubi’s anger surprised some of his friends, but the logic behind it was simple: he had already organized his life around an ending, and then was forced to reverse course without a map.
bill staubi is a great collector and supporter of arts and artists. when he discovered two years ago that he had liver cancer and about 18 months to live, he decided to give away his collection of between 1,200 and 1,500 pieces.
jean levac
/
postmedia
diane gratton finds herself in a similar situation these days, but with one key difference: her cancer hasn’t gone into remission. instead, her body responded well enough that the goalposts of her expected lifespan were pushed further away.
diagnosed in 2021 with stage-4 breast cancer that had metastasized into her bones, gratton, now 71 and a retired nurse, was told she had “maybe five years” left. for her, the diagnosis wasn’t simply some actuarial estimate: it embedded itself into her very being at a cellular level.
“the term stage 4 is invasive and disruptive because it siphons away hope and plunges us into the dreadful wait for a deadline,” she says.
she remembers the moment of diagnosis as a kind of emotional collapse — the sort of news that makes some people’s legs go out from under them. she didn’t fall, but something inside of her did, and for the next three years she lived under what she describes as a dark cloud of terror that never went away.
“it was like walking toward my death, but not knowing when it would come,” she recalls. “is it three months? is it six months? is it three years? i only know it’s coming, but not when.”
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the thought of dying wasn’t the worst part. more unsettling were the questions she asked herself as she imagined the end: was i enough? was i a good mother, partner, friend? was i enough as a person? the diagnosis didn’t just affect her future; it made her question the life she had led in the years leading up to it.
to help her deal with her existential angst, gratton eventually sought out legally approved psilocybin therapy. she didn’t want to spend whatever time she had left paralyzed by the fear of dying. the experience, she says, didn’t erase her cancer or provide her any more certainty. but it helped eliminate much of the cloud hanging over her.
“i don’t want to die,” she says, “but i’m at peace.”
but peace isn’t the same as certainty. or relief. her body responded well enough to treatment that last summer her oncologist revised her “maybe five years” estimate to possibly another 10 years, maybe even 15, a prognosis that gratton found difficult to process.
“i was walking out of her office thinking, ‘why am i not happy? something’s wrong with me. why am i not happy?’”
she believes that the earlier five-year prognosis was so embedded in her that the new one couldn’t find a home. additionally, it came with an expectation, from others and from herself, that it should feel like uncomplicated good news, and it didn’t feel that way.
she’s now trying to learn how to inhabit that expanded horizon. some aspects of that are more difficult than others. for the past five years, she greeted each new year with a crashing sense of foreboding. this year, she’s trying to meet it with celebration and gratitude. for years, she went to sleep each night by reminding herself of three good things that happened that day: the first was always that she woke up alive. she’s leaning into that this year, glad for any extra time she’ll have with her two sons and four grandchildren. “i’m happy,” she says, “but it’s a non-euphoric joy.”
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it’s also a happiness tempered by a cancer that could worsen at any time, making it difficult for gratton to plan more than three months ahead — beyond her next scans and test results.
“before, death clung to every thought,” she says. “now, it is living that clings to every thought.” either way, she adds, it’s exhausting.
diane gratton was diagnosed with breast cancer that metastasized into her bones. she was told at the time that she “might” have five years left, sending her into an existential crisis. last year she was told that her five years might now be 10 or more, and she’s having difficulty dealing with that change.
jean levac
/
postmedia
what struck me most in talking to campbell, staubi and gratton was how each finds themself in a place where the ground to comfortably continue living doesn’t feel so solid. they had already reorganized their lives around an ending, and now have to change course.
downar says there isn’t really a clinical name for this state — the psychological aftermath of outliving a terminal diagnosis.
“i would say it’s less of a medical question than a philosophical one. if they come to me saying, ‘i don’t know what to do now,’ i’m like, ‘that’s probably the one thing i can’t actually help you with.’
“most of how we define ourselves is really by what we do and who we are to others,” he adds. “when illness robs you of the ability to play those roles in other people’s lives, or to do the occupation or activity that you like to do, that is not just an illness — it’s an assault on your identity, on your existential purpose.”
downar learned early in his training how powerful certainty — and uncertainty — can be, even when the news is terrible. years ago, when he was a resident physician, he told an older woman that she had lymphoma and would be treated palliatively. instead of the tears he expected and feared, the woman simply exhaled and said, “well, thank god.”
“for her,” downar said, “no aspect of life and death was as upsetting as uncertainty.”
in that sense, the uncertainty that campbell, gratton and staubi are facing isn’t that unusual. they’re not struggling because they feared death, but because they’d already made peace with it, only to have the map each created to arrive there taken away. most of us don’t realize how much certainty, even terrible certainty, steadies us.
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meanwhile, campbell is trying these days not to suck at living. she’s finding things to do: she started a weekly crafts night in a church basement in greenboro and is also working on a potential podcast featuring interviews with people she knows and admires.
“and i’m buying green bananas now instead of just yellow ones because i plan on being around for a while.”
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