“THIS IS THE MOMENT” 2018: About living with the cancer that has entered my life
A separate space dedicated to my journey through the aftermath of a cancer diagnosis, which I received in late June 2018, featuring the stories that arise when the future is no longer projected in decades, but in moments and breaths.
It’s about the way events in our lives can become connected; even the smallest, which taken individually seem insignificant, strung together in a sequence that not only heightens the meaning of each, but which can make you feel as though life is sending a message directly to you. As though nothing about this string is random. If you think about it, you’ll surely be able to recall this kind of moment. Here’s what I experienced just days ago.
In a book I was reading, I came across the story of a couple who, already the parents of a preschooler, found out that they were expecting twins. Things had been going smoothly until, well before 28 weeks into her second trimester, the mother went into labour and both baby girls were born. One died very soon after in the neonatal ICU unit. Her sister hung on and was saved, though she suffered so much damage in the weeks following her birth that she has never been able to walk or move or speak or do much beyond breathe and take in nutrients and love.
The book mentioned that at the funeral for the lost twin baby, Raymond Carver’s short poem, “Late Fragment”, was read.
I must tell you now that I was already shivering, because while my twin sons will be 37 in May and are beautiful, healthy men, the fact is that one, Jeremy, the “second” twin, could have so easily died in childbirth when his umbilical cord prolapsed as he was beginning his exit from my body. Jeremy, who had to be cut out of me by emergency caesarian. Jeremy, who after 5 minutes, was still not breathing, simply hanging limp, unconscious and blue and…I shudder, because he came so close to death. Jeremy, who spent a week in ICU and yet miraculously came home with his brother Simon 6 days later. Still, for weeks and months and years, he was followed at the pediatric pulmonary clinic for what was thought to be congenital lobar emphysema. Whatever it was, it eventually corrected itself. He is brilliant and perfect. How this is so, I can’t fathom. His fate could so easily have been the same as either of those little premature twins— with an APGAR score of only 1, five long minutes after his delivery.
And because the story of those tiny twin girls unlocked such tender and intense feelings in me, I looked up Raymond Carver’s poem, which goes like this:
And those verses…Those verses…They are everything. They speak directly to me and to the lesson I’m learning every day since my diagnosis. And then I saw that “Late Fragment” is the final poem in Carver’s last published work, A New Path to the Waterfall, a collection that was written while he was dying of cancer. It was enough to cause me to gasp.
During all of this, while overcome by the mixture of unutterable sadness and traumatic memory and astonishingly, joy—a joy that grew out of the absolute resonance of that poem’s message in my life–I’d been messaging back and forth with Christian. I was telling him that our beloved friend/family member Mario, for whom I’ve recently posted an online review of the biography he’s just finished—but which cannot be promoted the way it deserves because we are living in the time of COVID-19—had just then written the most kind, radiant short message of thanks to me.
So there was the tiny lost twin, and also the second, from whom life withheld so much of its richness; and there was my Jeremy, rescued from the grasp of life-altering injury; and there was a brief, staggering poem and its luminous message; and there was and is cancer, ever present; and the consolation of love, lavished upon me at that moment by Mario…all of these tapping one into the other like dominoes…
And I wrote to Christian, right then, amidst this unfurling wave of emotional truth: There are moments that simply are not coincidence.
I woke up at 5 o’clock this morning, feeling the effects of the 5 FU (Fluorouracil) that I won’t be getting tomorrow during chemotherapy because it has surprised me and my medical team, with side effects that harken back to the early days, when I was at full concentration, which, over time, has been lowered incrementally by 6 % (at least I think that number is correct).
All this really means is that my body has been struggling. A severe recurrence of swelling and burning in my hands that are now difficult to close into a fist or do much else with painlessly, and their almost mummified skin which, when it splits open, turns the newly exposed patches into areas especially sensitive to the alcohol-based hand soaps I had to use 20 times yesterday at the CHUM. And, something akin to being desiccated from the inside: burning corneas and sinuses that ache and fill with mucus that seems to petrify on contact with air; the interior of my mouth swollen and heat sensitive and unable to produce much useful saliva.
When I awoke, all of this hit me, all of the discomfort at the same time so, rather than get up and quite likely wake Simon up if I moved around, I stayed put and entered a cycle of trying to fall asleep, almost succeeding, being awoken by snorts that I was responsible for with my saharan nasal passages (so undignified), and starting over again…
(My complaints are now officially finished)
At 9 am, just minutes ago, my phone pinged (with an interesting COVID-19 related article link sent by Simon), and I looked at the time, and here I am. I dislike feeling that a few extra hours of life, bright and early life, escaped me. I am so happy to greet each morning.
But I didn’t awaken to a quiet house because Simon is at home, teaching his college-level biology students online, holding office hours online, orchestrating “labs” online. Minutes ago, he was online with a student, and though I couldn’t hear everything—the door was closed and their voices slightly muffled—I could hear the younger man’s voice, and his questions, and I could make out bits of Simon’s data-supported answers. Simon was clarifying some of the confusion surrounding our coronavirus infection rates in Quebec, and why our numbers are what they are. They bantered back and forth and I could hear understanding in the student’s voice, the deliverance of knowing more, of making sense of the mess out there…
He seemed a lovely young man. His teacher, my son, is only 36. They are in it together, aren’t they? Their individual fates will play themselves out in much the same time-space.
Sitting here, it also occurs to me how different the two obvious threats to my own life are. Covid-19, a virus, is an INVADER. It’s out there, in other bodies, in the droplets that the latter produce when they sneeze and laugh and spit. It covers surfaces for a brief while before it dies. It attacks other people’s bodies and, if given a chance, will do the same thing to mine, because it is ALIVE and seeks to remain that way, and needs “living vessels” to do that. It can also mutate.
And this, from a human standpoint, makes it merciless. It’s alien and aggressive and our bodies single it out quickly and attack it ferociously, and we humans feel terrible in this predicament of having become a furious battleground. But it also offers, in most cases, the very strong likelihood of our survival. Death rates from COVID-19 are between one and ten percent, I think. It depends more on where it emerges and how prepared humans are to treat it. So we hate it for the fear it causes us, and the terrible loss of life that any percentage ALWAYS represents, as we wait for our bodies, all of them, everywhere, to win this fight to the death, leaving behind a life-altering perspective on the precarity of human civilization; bringing about, I HOPE, a sea-change in human attitudes toward each other and the life that surrounds us. What matters; what was only ever superficial and ephemeral; what can be taken away by a microscopic pathogen doing what it is programmed to do, nothing personal.
And then there is cancer, my cancer, which, in contrast with COVID-19, is NOT an invader, is not alien. Whose purpose is NOT to harm me. All of our bodies contain cells that can potentially change just enough to make us sick as they continue to reproduce and make more dysfunctional cells, as though they are the one and only cells. Mine were able to reproduce and cling to each other and sustain each other for a long while before I felt ANY ill effects whatsoever. YEARS, in fact. My body supplied them with everything they needed, not sensing that they would, in time, kill me. My cancer cells have no “reason” to kill me: they just could, and likely will. Sooner than I would wish.
And yet, when humans see a person whose complexion is sallow, often yellowish, whose hair is thin or almost gone, whose weight has dropped visibly and whose clothing just hangs on their shrunken body or who seems to be in constant pain, we feel as great a fear (perhaps even greater) of them and their sickness as we would of a person with flushed cheeks and a cough (though probably not these days). And we feel revulsion. We would prefer to occupy a minimum safe distance. But we don’t become hysterical, run out to hoard toilet paper and medical masks, and buy up so much more than what we need and what is our fair share.
We are each other’s keepers. Have we begun to internalize this deeply yet?
My long commute to the CHUM and my time spent there allows me to observe the emptiness of our city under lockdown. What it means to be living without life around us. Large cities spell this out in the most awful way. Montreal has become an architectural ghost town. The buildings still reach up to the sky, still posture and preen for our attention. But they mean nothing, until you remember that at least some of them, apartment and condo complexes, are actually human hives—swarming with social beings trapped there for a while yet.
When I reach home in Hudson, its birdsong and plant life—it is spring after all and nature is bursting with reproductive energy— remind me instantly that life is everything. Not objects, not buildings, not a pantry or garage overstocked to the point of bursting with hygiene products, flour and sanitizers.
Life. People. We miss each other! We miss being touched by each other. We miss the astonishing, reassuring proximity to each other. And we’re learning to live in a decelerated, hushed world.
The appearance of a person at the end of the road with cancer very much resembles the appearance of things that humans have done to each other. That is, the way we found humans in prisoner of war camps and concentration camps, or exhausted and hollowed-out refugees, eyes wide in the dark, piled into boats like so much trash: emaciated, starved bodies that can’t take any more suffering. And maybe that’s part of what terrifies us about cancer: it’s also a reminder of what we’re capable of doing to each other…
But when we enter stores and empty out the shelves, piling our carts full of “stuff”, to the detriment of everyone else around us, not caring; shoving, pushing, losing our shit in parking lots and aisles, then I think we’ve become cancer cells too, and it’s a horrible thing to witness: each person-cell seeking only its own survival, oblivious of the needs of the community—the social body. How ugly is this breakdown of human solidarity and this intensely focused desire to self-protect!
At the end of their lives, people with very advanced cancers, they just fall…they fall from life, the way the leaves on the trees do in late autumn and early winter.
I’ve been away from THIS IS THE MOMENT for a while. This past month, I’ve been thinking that if ever I succeed in shaping these pieces into a book, that it will have a long title, It will have to be named:
THIS IS THE MOMENT
Cancer, Chemo and Covid-19:
Two improbable years in a clinical trial
It’s certainly the alliteration that rocked my world. I wonder if the best portrayal of the person I was when I was diagnosed with stage 4 cancer in July 2018, is of a woman with training wheels: not yet competent and ready for the ride ahead?
But 2020, my gosh, what a year so far! Four months in, and I don’t dare look around the corner—which I think is a reasonable response.
* * *
In February 2020, Covid-19 wasn’t yet a familiar word. Instead, I was hearing warnings and reports about a new coronavirus outbreak in China…so many miles away…But Simon, versed in epidemiology, already understood that something was up, and was reading the available scientific literature about it.
By the first week of March, the coronavirus had begun to loom over everyone and everything, as we were starting to grasp the fact that it posed a very serious, yet still mysterious threat. It was Spring Break in Quebec. Many Québécois were gone for the week: to ski locally, to see the sights of New York City, to the beaches of sunny Florida, to Europe and on cruises. They had, in fact, for the most part, picked the worst possible destinations. The worst infection zones. My cancer keeps me welded in place, so instead, we had friends and family over for dinners, my grandchildren for a full day of jewelry-making and baking and fun.
The news grew worse. The expression “social distancing” was read and heard more and more. My inner alarms had activated. I knew I had to go into Montreal twice the following week, to the CHUM, for my usual chemotherapy but also the standard pre-chemo blood tests etc. Two consecutive days: March 9th and 10th, and that I would have to take the train and the metro and hang around at the hospital for hours, both days.
It was a torment. The word pandemic had emerged by then.
And my innards began resisting. I felt chronically upset and anxious. More so than I’d felt since I was first diagnosed. I didn’t want to go into the city and take all of those risks, but neither did I want to miss life-sustaining treatment.
I went into the CHUM that Tuesday reluctant, resistant, frightened. During the preceding days, I exchanged several emails with my research nurse, hoping she’d say something magical that would keep me safe.
The week before Spring Break, the strangest thing had happened. My oncologist, Dr. Aubin, who is always gracious and kind, but who also weighs every word carefully, had greeted me in her office with the warmest smile. Bonjour Mme Payette, she’d said, and continued to smile. And after the usual questions about any side effects I might have, she’d simply said (in French): “I’m so happy. You’re doing so well. Really! Bravo!” , and she’d looked at the spreadsheet with all of the information gleaned from my blood work that filled the large screen of her computer, and had said: ”I’m really very happy for you. This is the Nivolumab we see at work [the immunotherapy drug|. And honestly, you can’t really be considered immune-suppressed right now.”
This never happens. This kind of unguarded, spontaneous revelation? Never. Reassurance that things are going in the right direction? Yes. That my tumours have shrunk almost 60% since I started? Yes. But this smile that revealed that, as an oncologist, this was truly gratifying progress (stage 4 cancer is at best a chronic disease)? Never.
For a few days, I got to live in an almost carefree state. Or at least, in a mind space that I could sprinkle optimism and a newfound joy into.
Ten days later, the human world seemed to be imploding. And still does. It’s a world smothered by Covid-19, the name of the virus we will all have been branded with, whether infected or not.
Daily catastrophic news and statistics poured in, and not so long ago, I found myself thinking: I don’t want to NOT die of cancer!
* * *
When I arrived at the train station early in the morning on Tuesday, March 9th, I was so stressed that I felt a bit sick to my stomach. There were two cars in the parking lot which usually accommodates more than a hundred, maybe even hundreds: mine and a blue one, side by side. It was 7:09 and I thought for sure that I wouldn’t make it up to the actual boarding area on time for the 7:10 train. But when I climbed the concrete stairs, the train was just idling there. Its doors open. No one in sight. Not a soul. A ghost train.
Unsure what was going on, I boarded, and saw a young man in the next car and felt immediate relief. And then the doors shut. Almost soundless. And the train started to move, with stealth. I was completely alone in my section. There were eleven stations left before I was meant to get off. I saw two or three people, at the most, get on at any of these stations. No one ever joined me in the section I had chosen. This should have been the most packed train of the morning. Standing room only. Rush hour. Instead, it felt dead. Post-apocalyptic. It took just a few minutes for my sense of relief at not being at risk of infection turn to a terrible, lonely feeling. I got a lump in my throat. I felt the urge to cry. I felt anguished. The part of my brain that Malcolm Gladwell wrote about in his book, BLINK, was signaling unease, unease, unease, something’s off, something’s wrong…
When I reached Vendôme station to take the metro, it was much the same.
At the underground entrance of the CHUM, again, near desolation.
It was as though the physical world had transformed itself into the way cancer made me feel during those first months and seasons of treatment.
The cues that guide us every day had disappeared.
Since then, I’ve grown more accustomed to this strange, empty world. I head into chemo alone now. Only the very weak, those suffering the most, are allowed companionship and that’s the way it should be. I miss Louise, my precious friend, who accompanied me so regularly, then drove me all the way home after chemo, and stayed for supper. But I’m lucky, my son Jeremy who is now working from home, has come all the way to the CHUM to pick me up and bring me home several times. I miss Christian, who often popped in on a day he wasn’t working, to keep me company.
Simon is here, teaching online. Keeping his energy up. Keeping me informed. Making delicious meals and, I’m sure, feeling starved of the physical company of the colleagues, friends and family he so happily mingles with and opens this home’s doors to at every opportunity.
In truth, my life has changed less than most people’s. I’ve been in training for the past 19 months, learning to stay put, monitor my health, avoid germs and stay out of harm’s way.
* * *
Last Monday, I had to return to the CHUM for my scheduled CT-Scan (every eight weeks, like clockwork). On this day, I waited a long time for my turn: several hours, sitting in a hospital gown, a catheter stuck in my arm, on a stiff plastic chair in a cool hallway staring at a wall. When I was finally called, I did as asked, and lay down on the sliding “bed” that is part of the scanner. And then the phone rang, and the technician told me without a shred of gentleness in her voice to get up, that someone suspected of having coronavirus was on the way, and I would have to go back to the waiting area.
And so I got up off the machine, and looked at this woman, and wondered why they couldn’t just do the scan which barely takes 5 minutes. And then I think I said (in French): Well, I’m not sure that after 19 months of cancer treatment, coronavirus is very good for me either…”
It wasn’t my finest moment. I was imagining the virus lingering in the room. It’s what fear does. And being cut off from fellow humans. And getting worn down.
I’ve noticed how, in the metro, the train, and all the enclosed spaces where we’re asked to practice “social distancing”, we’ve stopped making eye contact. We’ve reduced each other to mobile, possible threats to our wellbeing.
That incoming patient on the way to be scanned…
I don’t know who they were: man, woman, young, old. I don’t know if every intake of air into their lungs was agonizing. I don’t know if they were accompanied. But I’m sure they were scared.
I’m also sure that the CT-Scan technician has seen many such patients, and that the area she works in had to be scoured and decontaminated for the umpteenth time that day, that week, that month…
Her tone had changed when I was eventually called back in. Some of the stress had left it.
I will receive my scan results tomorrow. I want to say “as usual”, but those words ring hollow.
Among the many staggering lines in Terese Marie Mailhot’s Heart Berries—a book I’ve mentioned before—there is one, spoken by her then boyfriend, and now husband. During a very intense period in their relationship, she writes that he said:
I’d burn my life down for you.”
I gasped. I read that statement and a feeling of heat and…envy rippled through my body. A shock wave. I wondered what It would mean to me, to be the woman who is told something like that—to want to say that to a lover—to have a man I love say that to me.
I’ve never been in such a relationship. I married the boy I met when I was barely 17.
Younger, those words would have thrilled me, but not for long, and the fire of them, the intense passion of them, would have scared me too and caused me to back away.
But reading that line now, and understanding its context which is fully revealed in HeartBerries…Hmm…I think of what passed me by. What I missed. I feel a pang of desire and envy. To feel so intensely about someone; to be desired so intensely by someone (in the context of the memoir, he is a quiet, introverted man), an outer skin would melt away.
I’m sure of it.
But after that, in the aftermath of that, there is the inner voice asking:
What does that mean?
How far would you go?
What would-could be the collateral damage of that?
Such an intense flame would frighten me, but I would also be bursting with my body’s response: heart pumping wildly, my very centre filled with such desire that I would do as a moth does…
* * *
What a startling way to be reminded that I am still a passionate, sexual person! That my body still wants what it wants.
Well, I know that already, those drum beats have stirred in me since my separation (and before, causing me such sadness and loneliness) and my diagnosis…With my hair falling out and my body and its energy being reshaped by cancer and treatment, feeling envious of the lovers in some Netflix movie…At bedtime, when memories of my skin being touched and meeting other skin make me restless and prevent my falling asleep…
I feel happy that my altered and damaged body is still very much alive to my sexuality and to its unique energy. But I also feel that that chapter of my life is over, and that door should remain closed.
How on earth could I do this to another person? Offering my body to a man now is offering him illness and decay; it’s trading insouciance—carefree lust, intimacy and love—for pain and sadness. It’s: HERE I AM, CANCER AND ALL. Ugly, damaged dry hands that will be rough against Your skin (You, that man); a body whose sexual responses will be unpredictable from one moment to the next. A sense of body shame that I don’t think I will ever shake. The unknown of it all…
The price of attachment.
I will be so much more trouble than I’m worth.
How could I do that to You (that man) ?
But then I sigh as I think of what it would be like to feel Your skin, the texture of it, how age has affected it, and Your smell, and Your hands and how You use them to touch…
Wouldn’t it all be lovely?
It would, it would. I would steal those moments and die having remembered that I was that woman too. Once. Again.
This brings me backward in time, to regret—not sexual, that was never a problem—and to emotional memory.
I know that it isn’t that I want You (that man) to burn down your life for me. No, after long years of heartache, I want the intensity and intimacy of KINDNESS. The loving that is wide open, exposed, vulnerable, wholehearted and generates JOY.
I would relish Your body, You (that man) who revealed in your smile, in the way Your eyes found mine anywhere, anytime, and showed warmth and love.
I would climb all over a body that held within it goodness, tenderness, patience, sensuality and generosity. I would blossom from this contact with You. I would risk in order to overcome my shyness, my self-consciousness and the pain I carry under my skin.
But it would be an invitation to suffering, for You. And that wouldn’t be love. Your kind heart would deserve better.
But I can daydream about what it would be like to fall passionately in love with a good, kind You. I believe You are possible. And that will have to do.
Note to readers: in the same way as the Branches blog post, this isn’t actually written text: it’s transcribed speaking (into my Iphone, to be precise). It thus has a different cadence, and comes together the way speech does, that is, not always in perfectly structured sentences and paragraphs. Rather, it loops back on itself now and then. It’s a bit of an experiment that I hope connects us more intimately.
* * *
One of the challenges that cancer has placed in front of me is figuring out what my worth is…what’s my value now that really, all I do is … draw resources out of the medical system and give very little back to society…
It’s hard to explain the value of some of the things that are important to me.
The first one is writing. Without work, the work that I used to do teaching, and without being able to actually take care of people in any significant way without becoming very tired or risking getting some infection, writing and reading are the two things that give real value to my days.
When I think of the quotidian, you know, the everyday life that I have, aside from cleaning and picking up and doing a bit of cooking: what do I do? What do I create? And I think that the writing really, really matters.
* * *
So I guess that there’s a wheel that turns and the reading expands my life—there’s a density of content that comes into my life through reading all kinds of things. I’ve been reading Heart Berries by Terese Marie Mailhot. I was afraid to read it, originally, because I was afraid of the pain in her memoir. I bought it right away when it was first published, and then I thought oh my gosh I don’t know—this is a while back, too—and I’m just finishing it now but it could be read 5 times and each time you would draw out more and more, and I love that books can do that for me—for everyone—but for me, NOW, they can make me think and feel; they can make me puzzle out human quandaries and they can make me see other people’s pain and that helps to create perspective beyond my own life. They fill me. They are nourishing.
* * *
It’s strange, you know, I’m dictating this from the bath tub, and it occurs to me every time I take a bath how vulnerable I am. I’m alone in this house. I’m not very strong (laugh), and I don’t see myself as very strong: the mirror throws that back at me…And I think maybe that plays with a person’s mind—makes me less aggressive anyway—and I think if someone came into the house (the front door is locked, I check before I take my bath, but there was a time when I had forgotten to), if someone found me right now, here, with no clothes on lying in the water, cornered in this tiny room …
It was funny when I had that thought about a half an hour ago, and what went through my mind is that I’d let them kill me easily, I would let go easily. That’s the thought that I had. I wouldn’t fight too hard…and I’m puzzling over that. Maybe faced with the horror of being beaten or hurt or killed by some terrible, violent person, maybe, no, of course I would react; the will to survive would override everything, but…Tssh! Suddenly, I had a doubt and I thought—here I am thinking this right now—that the appeal that I might be able to make to anyone trying to harm me is: “The harm is done. Look at me!” You know, with my white hair and thinner body (which I’m not unhappy about) and the catheter port under the skin of my chest and…my vulnerability and the fact that tick-tock-tick-tock—you know, time is not my best ally—so…um…go ahead!
And that’s a very strange thought, but I may not be the first person to have a stage 4 diagnosis who has these thoughts when they’re alone (laugh) during the day.
* * *
There’s this endless cycle of questioning the value of my being alive and What is my purpose? What is my purpose?, that somehow, human beings, when you lose that sense of being plugged into the world that’s moving and changing, you lose your grasp of your worth. I have to figure out a way to express that more clearly, but … I suppose that’s also the case for people who live in residences/care facilities, shut away from society; and people who are hospitalized for prolonged periods of time; or people who have become isolated through mental illness or through the circumstances of their lives. Some of them have been abandoned by society—God knows that’s not what I’m trying to say about my own life—Oh my God! Not at all!—but when you ARE more apart from the active world it does something to your mind.
I woke up at 5:30 this morning, but I only really got out of bed at 7:30 and let myself fall back into weird dreams, which doesn’t happen very often—and as soon as I’m up, then I’m thinking okay, I have to justify my day. And so I emptied the dishwasher and put everything away and cleaned things up and…then I sat in front of my laptop, which is invariably in the dining room near the morning light (which I really like), and I started scrolling through some of the news, and then I listened to an older interview that Shelagh Rogers did with Terese Marie Mailhot, because I’m preparing a blog about the book. And then, Christian’s ad came up—the ad that he shot just a few weeks ago for Bell—it popped up on TV. And both he and I found out it was on air because a friend of mine who lives on Vancouver Island messaged me to say that she had seen Christian on television, and so Whoop! all of a sudden, there’s this bright sunshine and this beautiful clear PING! in my day, and I could focus on something that makes me feel very, very happy which is anything good happening to any of my sons. It’s a short internet and TV ad, I guess 30 seconds, but it’s funny as hell, and that was a good start.
* * *
I cycled through that, and put it on Facebook and started tagging people who might enjoy it and got a good half hour of life just blooming in that fleeting little bit of joy. But then the guilt came back and I thought “Okay, what am I doing to justify just sitting here?”, and so I went back to taking quotes from the book, Therese Marie’s book, and then I emptied the dryer of a load and I…but I…there was this listlessness. I sat and I tried to focus and I felt guilty for not doing something more useful with my time.
I can’t go out too far because the car is at the garage right now, and maybe that’s part of it, but why is it that I feel this need to account for what I’m doing when I’m here at home, which I actually enjoy, and look forward to the quiet time? Not too much of it; there’s just enough of it, and maybe every now and then I could use a bit more when I get on a tear and I’ve got some momentum going trying to write a blog or trying to write some kind of an essay either for the library or for THIS IS THE MOMENT. I have to think more about that.
* * *
Cindy was here this weekend. Cindy is both friend and family, and she’ll be moving in here within the year, A lot of our get-together this time had to do with the planning, and taking measurements, and getting a designer involved in transforming the double-garage into a living space, and all these different things that have to happen fairly soon. What her plans would be for the house, and Simon and Cindy’s visions coming together—which they did quite easily and I think will continue to do quite easily.
We waxed poetic. Cindy is a builder, and she’s a nature lover and so the gardens will be expanded—there will be a stream and there will be fish, and there will be all these wonderful alterations: all the things that we can do in the future, and the fact that we can share expenses three ways. It was a fun conversation. It always makes me feel better to know that someone is coming into this house to extend the family—to make the family bigger—while I wait for Vickie and Christian to come live in Hudson (which is their plan) and while I wait for maybe Jeremy and his family to one day join everyone here because it’s so beautiful (there is pull that people feel as soon as they arrive in the town). This wanting an expanded family is very much tied to what I fear lies ahead—with climate change and the stormy, disrupted, incoherent life that awaits everyone. I would like to leave this endangered world knowing that those I love and care deeply about will be bound by the strength and safety of love, friendship and family.
There was also this fleeting moment, while Cindy was talking about things we’ll do, like travelling! Going to different parts of England, maybe going back to certain parts of Scotland or Ireland—I’ve never been to Scotland or Ireland but I’ve been to England, and I would gladly go back. And there was talk of the lake district and Cornwall…
…This fleeting moment when Cindy looked at me and I’m pretty sure she was thinking what I was thinking which is: Will you still be here? We were making plans and we were smiling and we were being optimistic, but the deeper current was: will time allow this for me?
Who knows? And it’s NOT DEPRESSING. It is what it is. It’s called reality and I HAVE TO think on both plains: I have to think: what can the future bring? What small joys, what big joys, what character-testing moments can tomorrow bring? But also what part of tomorrow may I not be there to witness…may I miss out on? Not twenty years from now because that’s obvious, but in a closer future, when will I cease to be there? What part of the “ near future” will I begin to be erased out of? And it was just the most fleeting moment but I’m almost sure she had the same thought at the same time. Maybe Simon did too, but I wasn’t looking at him, he was probably beside me, and he would be more used to those moments anyway.
* * *
People in my position who are not able to be out in the world and productive and interactive on a daily basis in ways that most of us take for granted, do have to consider where the value comes from, in our continuing to be alive. Not just for others, but for OURSELVES, there has to be meaning to getting up and going through all the motions of having a life. And I think that people in my position who KNOW almost with certainty that their horizon is very short, that they won’t have 20 or 25 more years to blunder around and figure it all out, I think we have to be KINDER, I think we have to make EVERY SINGLE CONTACT genuine, and whenever possible KIND. I think we have to spread kindness, because time is running out for us, and what else IS there…in this life, that you can give besides your love and kindness. It has many forms, but in the end, that really is all that we can do and yes, it can be spread over a whole, long lifetime, and the whole planet, but when you get to the ending part of those years, I think there should be a higher dosage, a higher concentration.
* * *
And that’s not easy. I do find that my conscience has grown a greater capacity to demand better behaviour, and I’m well aware of every time I’ve been a lesser Michelle. Those times are frequent, and I think about them after. They’re not monstrous behaviours, just petty, small, judgemental, self-centred, envious…not being the best person I could be. Those failures matter.
It’s that simple. I’m not letting myself get away with anything or setting myself up as some kind of guide—that’s not it at all!— I’m just being very honest with you, whoever you are.
WHAT ELSE IS THERE?
I feel the imminence of death and am moved by such strong forces. One says leave something eloquent behind–something of substance: a book, a collection of written work; a piece of you that will live a little beyond your own body.
But another knows that this is misguided. It knows that I should strive to become lighter and “of light”. That I was always just passing through and that I am not Rumi, nor Tolstoy nor Emily Dickinson. That I should leave just the gentlest, ephemeral footprint. Traces of Love.
Photo by Michelle Payette-Daoust, Snow heart on the car window
I slid under the covers and my comforter last night, waiting to slip into sleep. I had just finished a perfect book—a posthumous compilation of essays by American writer Brian Doyle, titled One Long River of Song. After first reading about it in the New York Times, I went looking for it online, where it was unavailable.
It seems now that booksellers had underestimated demand for this title, or that the timing of things was off, and demand had shown up a little before supply. Because the author was unknown to me, and because he was described, here and there, as a “Catholic writer” (I still don’t understand why anyone bothered to make that distinction), I let things go for several weeks, thinking that maybe it wasn’t for me. But it niggled at the back of my mind and so, shortly thereafter, I tried again to order it, and was happy to learn that it was now stocked all over the place.
I want you to know that for me, One Long River of Song is a perfect book; and by that I mean that it found its way into my hands at precisely the moment in my life when I needed it the most, when I was most ready to absorb its lessons and its copious amounts of joy and elevation, poignancy, honesty and wisdom.
Brian Doyle died four years ago, at the age of 60, of brain cancer and so, as I read the many dozens of short essays in the book that Doyle’s colleagues and family worked very hard at collating and bringing together under one cover, I knew that the flowing, passionate, exuberant, funny, earnest, hopeful, occasionally wrathful and chastising, soulful and startlingly honest voice speaking inside my head as I read each essay was, in fact, no longer here on this earth. But of course, it is, by virtue of the writing this glorious human being left behind. As often happens when a book discovered randomly turns out to be a treasure, I read through it very quickly, in less than a week, and even managed, during those few days, to re-read many of the essays that reached deepest into me. And I had the shocking thought: I have lived longer than he did.
I know, now, that I will keep it on my night table—close by. Always. And I know that it will help me through the harsh episodes that surely lie ahead (as they do for all of us except that with stage 4 cancer, they loom; they are adamant).
Once I finished the last pages of the book last night, which included four pages of acknowledgements ( ! ), I lay in bed holding it close, passing my hand over its smooth cover, finding it difficult to separate from it. As I write this last phrase, I know it sounds strange, but what can I say? It is filled with thoughts, feelings and a spirituality based on joy and humility—not humbleness, Doyle was effusive and forceful—that are helpful to me and resonant. They feel very close to sacred. There is an energy emanating from Doyle’s words that speaks on a frequency that I need to remain connected to.
I think that he may have known, in a whispering premonitory way, that he would die quite young (though his parents lived long enough to celebrate their 75th wedding anniversary!), as one of his older brothers did, at the age of 64. It is woven through everything he wrote—this sense that life is glorious and bristling and swift. His life and his writing were one long prayer of gratitude.
* * *
Among the many dimensions of my life that preoccupy me more since my diagnosis (or maybe it’s just that I have more quiet time to stop, consider, meditate), is spirituality, and I wonder if anyone reaches the end of their life with beliefs and a sense of the transcendent that have remained unchanged through the decades. It seems unlikely, even near impossible, but of course I look at current events and see so many communities that have become more rigid, dogmatic and even calcified in their systems of belief, that I don’t know where I fit in and am not sure that I want to belong anywhere.
Like Brian Doyle, I was raised a Catholic. As time passed, it became clear to me that the faith of my parents was no longer mine. For a very long time now, it has seemed crucial to me that my spirituality should be fluid enough to be able to embrace and integrate the discoveries of modern cosmology and science; that it should also be attuned to the voices of the mystics of the past and those among us, all of whom are able to distill life’s truths, retaining and sharing only that which is essential; that it should draw from Nature; and that it should be universal and unifying. After so many years teaching students from all over the world, with such a wide variety of cultures, languages and systems of belief, I’ve come to understand that there is always a core spirituality that binds us, that is expressed through love and joy and light… How we give, how we laugh together, how we see.
But where does that leave me, in times of weakness, fear and suffering? I can no longer speak to a personal Deity, the way I did when I was young, speaking to God the Creator, or the Spirit, or the personal Jesus…My understanding of the universe, thanks, in part, to the writings of people like Alan Lightman and the philosopher physicists, astrophysicists and quantum physicists of the 20th and 21st centuries, has opened me up to the notion of noetic experiences, but even more simply, to the necessity of a different language to talk about matters of the spirit, of the soul. And yet, the need to pray and to reach out to a force beyond me is still there, though personal entreaty never did feel right: there was always that feeling inside me, even as a young child, that so many people other than me deserved the ear of a listening God.
Since my cancer diagnosis, especially when the sun has set and the day is winding down, and I am more aware of my solitude, I do find myself speaking silently to the vastness, sending messages out that begin with “Dear Universe…”. Sometimes, the repetition of prayers learned in childhood such as the “Hail Mary” and the “Our Father” serve the same function as any mantra (it was lovely to discover recently that sometimes, Simon does the same thing, over in his bedroom). I wonder if I might feel comfortable sitting in a circle among Quakers, in shared silence.
Since my cancer diagnosis, I have felt a great need to reach out beyond myself to tap into the energy, the source of Love—that love that is all around me and lifts my spirits and brings me a deep sense of connection to others. It has made itself felt most pressingly when I’ve experienced feelings of bone deep, heart swelling gratitude.
With so little time to write these past few weeks, I resorted to leaving memos on my phone, a function I’d never used before.
TRANSCRIPTION OF VOICE MEMOS
December 27th, 2019
“This is the first time that I use Voice Memo on my phone, and I’m actually lying in the bath tub while I dictate this, and it feels kind of funny because my writing voice is a silent voice, it’s the one that only I hear in my head, or only you hear in your head, transformed, as you read my words, but still, I’ll give it a go.
Umm…this is the second Christmas since my diagnosis and I was thinking of the difference between last year and this year and how great a voyage I’ve been on. Last Christmas I was only a few months in—it was the beginning of my 4th month—and I went to the different family events wearing a wig—that wig that I hated so much—and…feeling not myself, feeling disguised, feeling that this was not my life. I hadn’t grown into it yet, I hadn’t experienced enough of it yet, and so I felt very shy or very insecure, even though it was all of the faces of the people I love and who love me. Some were being very careful, especially in Sylvain’s family because we were only four months into the end of our marriage, our separation, but they were kind.
This Christmas was different because the lead up to it was my first real bout
with the effects of being immune-suppressed, so I was really sick in December and a sick that isn’t cancer—which is no bother at all until you’re in chemo or until it starts to get very aggressive and nasty and so far I’m not there—um…but I was sick from being immune-suppressed and caught the norovirus which made me so ill—vomiting and diarrhea, one round, a second round—and leaving me very weak and…thinner, which wasn’t all bad because all my clothes looked really nice [laughter] and it’s not a scary thinner, just…reality—the reality of not being able to keep down enough food or to not have enough appetite to eat more food, um…which is being challenged right now, which is being reversed, I think…
But this year, the first Christmas celebration, which was the Daoust Christmas, where we were well over 30 people in a small house and where we were all one on top of the other, was actually one of the nicer Daoust Christmas’s I remember—they were all pretty great, but this one, I was myself, and that’s because I was a changed Michelle, 16 months in [that sounds contradictory, but it’s a fact]. And, there I was with no wig and something that was more true, I think. Sylvain has travelled 16 months without me, and I without him and there’s a truth to us that was not there before when we were busy running away from each other or being unkind to each other, and it felt good to be coherent, to be…in sync inside and out, and everyone was wonderful.
And I think that when you’re in a place that feels grounded in something real, and when you feel unafraid to show yourself as you are, then good things happen. Embraces feel…the energy transferred in hugs and embraces is much more positive because nothing is getting in its way, and I’ve never hugged so many people and I’ve never felt more…all my impulses were to be open and to love and…I don’t always feel like that. I can be as petty as everybody else…
And then there have been all my cooking marathons with Simon. Yesterday, which was the 26th, we did the Christmas on my side of the family tree which has all kinds of grafted branches on it now. My mum’s partner Claude has been with us 20 years and gradually we just grafted more and more family members from his side, and now Christian with Vickie…we’ve grafted Vickie onto this beautiful tree that’ll yield different fruit depending on which branch grows and…bears the most and…yesterday there was a new member, Guy Bolduc, who is Claude’s daughter’s new love, and this is the love of two people in their fifties and yet it feels as sweet as if they were in their twenties.
And of course with Simon as the cook and me the assistant, well, there was more food than you can imagine and not enough ovens to warm it all in but all it did was make everybody feel wonderful and they just ate and ate and ate and ate until there was nothing left, and we exchanged gifts, and it was chaotic and it was wonderful and…my Mum couldn’t find her boots when she was leaving but of course her boots were right in front of her and Claude’s son Michel couldn’t find his coat but it was just underneath another coat on one hanger [soft laugh]…And all these crazy things, and yet everybody walked out the front door smiling and laughing as they left after a very long and terrific evening.
I think you could say that the stars of the evening were of course my grandchildren, of course Penelope and Graeme, but I think Vickie, and I think Pastou, her beautiful little toy poodle that the kids go crazy over…And my sister Danielle was there and was like a magnet to Penelope and Graeme with this wonderful strong energy she has and I think for the first time I felt how easily I could disappear back into the ether—not tomorrow, I don’t want to and there’s no reason to—but I felt the strength of all the bonds in this family on either side, and how much joy there is, how much genuine love of each other and desire to be together, and…none of that has anything to do with me. It has to do with the chemistry of all of us. So it has to do with me in the tiniest proportion…and that’s okay, because when I leave this earth, there won’t be as much pain; there’ll be a sad transition maybe, and then life will go on and all these people will keep being good to each other and helping each other out—mothering each other I guess is the way I could put it.
The way I’d been stating, with wonder and pride, that in the 15 months I’d been receiving chemotherapy, I hadn’t been sick; hadn’t caught the plague that felled Christian in the late fall of 2018; hadn’t even had a cold.
Tsk, tsk, tsk. All it took was the good ol’ norovirus.
On Thursday, November 14th, thinking that I had allowed for a period of “minimum safe distance”, I drove the 35km down the TransCanada to visit my mum, who had been sick with the stomach flu since the previous weekend. Her partner, a retired physician, was taking good care of her, but he had returned to his home in the city on Tuesday to look after things there.
My mum, who is the Energizer Bunny of octogenarians, was still weak from her ordeal and in need of supplies. So I scooped homemade chicken soup from our freezer, enriched it a bit with some gently simmered vegetables, bought some Yorkshire Gold decaf and also regular tea (for guests) and a whole assortment of dry biscuits from the British tea shop here in Hudson, picked up some bananas, some applesauce and delivered them the same day.
Looking fragile, as she does more and more, my mum was nevertheless visibly jazzed to have some company, and so, with my white cotton gloves on (because you can’t be too careful with stomach flu, even after 5 days), I warmed a bowl of soup for her, made the tea, and got the cookies arranged on a plate.
The conversation was lovely! My mum brightened, and soon we were talking about books and Christmas and a whole bunch of things I can no longer remember. I purposely—in spite of the multiple cups of tea—did not use her bathroom before leaving. As I left, my mum said: “We have to do this more often, it’s such fun; our conversations are so interesting.” That was mostly just a good sales pitch. Mothers want to see their children, and cancer (and the added distance between us since my move to Hudson) has made a serious dent in my ability to visit her in any kind of regular fashion.
There is so little I can do for her…so little I can do for anyone, that I drove home imbued with a feeling of having done SOMETHING to alter my general ineffectiveness.
The next day, Friday the 15th, Simon was invited to dinner by one of the coolest couples on the planet, Heather and Adrien: she, a geology teacher at the same college as Simon, and he, an anthropologist at Université de Montréal—who speaks at least 5 languages fluently. They live in the most cutting edge house in Hudson. It looks like something out of an upscale Wallander episode. It’s a giant wood bungalow with all of the wooden structural features (ceilings, beams, walls, the works!) exposed. It’s geothermically heated, and situated on several acres of woodland. They’re vegan and grow most of their own food (of course!). Heather and Adrien are at the forefront of preparedness for climate change. They’re also warm and kind and that’s probably why Heather thought to say to Simon: “Hey! Bring your mum!”
The evening was so lovely. Mostly, I just sat there dazed by everyone’s brilliance and the breathtaking scope of their knowledge. I’d time-travelled and somehow wound up in a room with a bunch of Renaissance polymaths.
And then dinner was served. And as the large bowl of tasty, multicoloured (there were beets!) roasted root vegetables served over basmati rice was placed in front of me—suddenly, as though someone sinister wearing a plague doctor mask had quickly entered and exited my field of vision—I felt the first gentle wave of noro-nausea move inside my stomach. The conversation was as animated as ever, but I was retreating from it, feeling hot and sticky and clammy as the waves of nausea started to build. I forced myself to finish my meal, sitting there like a stump, while the realization of what was happening to me became clearer and clearer, and then, in the gentlest, most urgent-without-sowing-panic voice, I asked my hosts: “Is there a bathroom nearby?.”
That poor powder room. Poor toilet bowl. It was hit with a thundering cascade of totally undigested, colourful root vegetables. Once. Twice. Oh God.
Twenty-four hours after visiting my mum, I was noro-infected up to my eyeballs. Is there a more mortifying way to experience a first encounter with brilliant and generous hosts? The odds are against it, I think.
Of course, this was just the beginning. I didn’t sleep a wink that night, and was up at least 10 more times, my stomach turning itself inside out. By the next day, it was like I had been scraped off the battlefield—like someone about whom the triage people would have said: We’re not sure about her.”
I spent Saturday in my bed, flattened under the covers, drinking only water and a bit of salt-spiked apple juice (I eventually switched to salted orange juice cut with boiled water—the hydrating mix recommended by the CHUM).
Sunday, I graduated to banana and some apple sauce and as much water as I could drink. And an extra-protein Boost I think.
I had my sights on Monday, which was my sister Danielle’s birthday. I wanted to keep my promise to her to take her out for BBQ chicken and GREAT fries (= Côte-St-Luc BBQ), and then bring her back to Hudson for the afternoon. I succeeded!
Tuesday and Wednesday, it was back to the CHUM for blood tests, my pre-chemo check-up and chemo itself. Back to the routine. Back to….just cancer and treatment. I had lost a kilo (2.2 pounds), but otherwise, I was good to go.
Except that…I wasn’t quite right. I still had occasional waves of nausea. Slight pain in my stomach. I was still skittish around food, and Simon was watching my intake like a hawk.
Then came the evening of Monday, November 25th. There we were, Simon and I, watching a movie while we ate the chicken parmigiana I had prepared. The movie was fun, the company, as wonderful as always and…oh no…my guts were out to sea. It was happening AGAIN.
This is the thing about the treatment of cancer (most especially after 15 months’ worth): it leaves you immune-suppressed. I had thought myself above this. I had developed a false sense of security. And boy, did my body let me have it. I spent another complete night heaving over the toilet bowl only this time, both ends of my digestive tract were expressing their outrage in tandem.
The next morning, with Simon off to teach but checking in with me every hour, I would have scared a ghost. I kind of looked like a ghost balloon that has lost all its air. I also had dark circles under my eyes (well, I think they appear when there’s no more moisture in your body tissue) and a chalk-white face. Every time I got out of bed (to get water, my hydrating juice and more water), I did it in stages, just to make sure I wouldn’t just slump onto the floor. I wasn’t sure I had measurable blood pressure.
And I slept and slept and slept. And when I awoke, I’d sip a bit more liquid, and then, at times, my mind would wander about, picking questions out of the air like: How many times in a row can you relapse with gastro-enteritis? Can cancer spread while you’re being desiccated by a virus? How much weight am I losing, I wonder? Will food ever appeal to me again? Could I just live on bananas instead?
* * *
Tuesday ended, then Wednesday, Thursday and so on. And here I am, living what should have been chemo week, but turned into a period of convalescence.
It’s Friday, December 6th. I’ve lost weeks of my life, and 3 kilos (about 6.5 pounds). Chemo was cancelled this week when blood tests indicated that my calcium and potassium levels disqualified me. Well, gee, d’uh. Call it dehydration or desiccation or The Great 15-rounder with the Norovirus, but expect a person’s electrolytes to be damned scanty when the final bell clangs.
I’ve been taking calcium (mint green coloured) and potassium supplements (white and looking alarmingly like suppositories) since Tuesday morning. I feel much, much better, but every visit to the bathroom is still a full systems check. I’m getting there. God bless electrolytes. And the love of sons who care for you and check in on you.
* * *
I hope you’ve smiled through this. Though every word of it is true, it was meant to make you chuckle and okay, cringe a wee bit too.
But during all of those days when I was just lying quietly under bedding, too tired and sleepy to read or watch Netflix or Britbox or anything else, I was still living. Lying there under the soft, warm weightlessness of my duvet, my head propped up by three pillows, able only to watch, through the window, the light changing outside, and hear the cars and occasional trucks zip up and down the street, I was mostly inside my head.
I feel as though I’ve just lived through a dress rehearsal for my last days—for my palliative weeks. I think I got a glimmer of what it might mean to become so debilitated that I can no longer, or barely, get out of bed; that I no longer have any sort of appetite. It’s easy for me to see why I might choose not to fight. No more 15-rounders. No more rounds at all.
The norovirus telescoped from out of my immune-suppressed chemo body which telescopes from my cancerous body…the tendrils getting thinner at each remove from the point of origin, until I could barely touch life at all…if only temporarily. This time.
I was recovering, quietly, in a home that is mine and also Simon’s and soon Cindy’s too, and it’s a place where I feel loved and safe. This fills me with gratitude. A place where I’m surrounded by books and all of the human experiences, stories and meditations these contain. This brings me joy. A place where the spaces left on the walls are decorated with the faces of family members—my children and grandchildren—and the artwork of friends. This gives me hope for the future. Their future.
My fifteen-rounder has brought death closer to me, and helped me to feel less afraid.
“To truly laugh, you must be able to take your pain, and play with it!”- Charlie Chaplin
Just a few days ago, I read an interview with a writer who described reading about and then experiencing what she described as hypergraphia—a clinical term which refers to the intense desire to write (or draw). The need to write one’s own story. She described the compulsion to write in the form of memoir as a very selfish act.
Of course I felt targeted by her opinion. I’ve been coming to THIS IS THE MOMENT for sixteen months, typing out essay after essay, entry after entry, and I’ve certainly been struck by the endless iteration of I, I, I, I…me, me, me, me…
And so, I do accept that I am in the grips of some sort of hypergraphia that may be needy, but isn’t pathological. I can’t accept that I might be doubly-diseased. Instead, I think that the first day after my diagnosis, when I sat down and wrote about what was happening to me, I was acting on a strong impulse to survive.
Still, as I sit down to write this, I have already filled THIS IS THE MOMENT with over 52 000 words. I’ve also been writing a regular book club blog for my favourite library, in addition to which Christian and I have been chipping away at a Harlequin romance (you read that right!) we decided to write together, and with the final chapter soon to be penned, we’ve passed the 57 000 word mark—which means we’ll have lots of editing to do.
I was doing the math the other night, lying in bed and thinking about hypergraphia, and with something like a hundred thousand words of prose drafted since the summer of 2018 (excluding Christian’s lovely words), I guess there is something compulsive about my writing.
I want to write in defense of hypergraphia. I’ve come to realise that for me (and many humans), writing is as essential as touching or speaking. It’s written thinking. It’s reaching out. It’s opening up—potentially to a crowd—by communicating to one person at a time. It can mean laying one’s self bare, privately and intimately on paper. It can also be like whispering into someone’s ear and them feeling as though you had only them in mind with your words. Writing can be the best means of sorting through what feels like chaos, pain, fear.
When the inner narrator—that voice inside your head that chatters incessantly—is paid some heed and an effort is made to capture, sort through, structure and transcribe its utterings, the result can often be salutary.
I began writing THIS IS THE MOMENT because I felt like otherwise, I would burst, or maybe implode, with the weight of what I’d learned. I did so too, because I wanted to stop shame in its tracks. I didn’t want to carry the mark of cancer alone beyond the protective wall that is my family. Writing about what was happening felt at the time, and still does, like opening up curtains to bright sunlight—letting in all of my loved ones, but strangers too.
* * *
I think that if you’re someone who writes a lot, then you’re most likely someone who reads a lot. The reverse is not nearly as probable, and that makes me feel lucky. A couple of days ago, someone close to me—to whom I’ve been sending books for years, hoping that they’ll provide him with hours of pleasure—wrote about one of these (Markus Zusak’s Bridge of Clay) on his Facebook page, even linking it with an online interview with the author. He loved reading it so much that he wanted to share his joy, plain and simple. He wanted others to have a shot at that same expansive emotion. Reading his post, my insides lit up like fireworks.
And so, hopefully, his words started a chain reaction, leading others to Zusak’s unique—and in this case beautiful—chain of words.
A person who writes will always have words to offer in lieu of their physical presence. Sometimes they’ll be arranged in a perfunctory manner, but more than likely they’ll be penned with an intention that’s a lot like the physical act of touching.
I think, I hope, that it’s the latter that fuels my hypergraphia.
Begun on October 15th 2019—while waiting for blood tests and my appointment with my oncologist (which both took place) and a CT-Scan, which was postponed to next week because the machine broke down.
I’m close to the age when I could have retired from teaching—but I wouldn’t have.
I would have kept at it for many more years, though I would likely have become a little pickier about the contracts I accepted, not wanting to drive around the planet anymore in winter.
That was the story of my life “before-cancer-moving-from-Pointe-Claire-and-separating-from-my-husband”.
I now associate the train with life since “my-cancer-diagnosis-moving-from-Pointe-Claire-and-separating-from-my-husband” and with the hospital and treatment. I sat in the train this morning considering how routine my existence has become and yet…
As I lined up to confirm my registration for blood tests on the 14th floor this morning, I had this thought: What if you had skipped the last 15 months and just suddenly –ZIP!—found yourself standing in line here at the CHUM, feeling exactly as you feel right now?
I would of course be terrified.
The altered condition of my eyesight, my skin (I’ve had two nosebleeds while sitting here in the first floor eating area, scribbling these notes down and running out of kleenex), my hands, feet, nails…The overall condition of my body would likely cause me to jump, startled, and perhaps shriek. My body–joints, spine, the works—is stiff and sore and rickety and alien. Without the fourteen-month-long, gradual erosion of my wellbeing, surely I would cry out in shock. Howl. And then just probably cry, frightened and uncomprehending.
Adaptation is a marvel and an obfuscator.
What human beings can get used to… Maybe that’s limitless. Or maybe it’s like the frog that sits in the gradually warming water until it boils to death.
These past fourteen months of cancer treatment have been a kind of immersive simulation of aging, with its sprouting of aches and pains, its limiting of movement, its incremental losses.
I like to think that aging is a gentler process; that it sneaks up on you slowly, though inevitably, and that for this reason, is less cruel than advanced disease in middle-age.
I’ve been observing the oldest among us. I would say “the elderly”, but that expression often comes with a hint of being patronizing. And yet, it’s a lovely word. I have been paying closer attention to our elders of late (nos aînés). Strangers as well as people close to my heart. I’ve felt that we are on the same path, mine shortened by the surprise of a new cancer in my family’s gene pool.
For as long as I can remember, I’ve thought of 80 as the age at which I would consider a person old. No scientific reason. Perhaps the simple fact that when you enter your eighties, you can pretty much figure you have less than 10 years ahead. Several of the people I love the most on this earth are in their eighties now. They’re among the fortunate, because they still have health of mind and body. It’s biomechanics that’s messing with their lives. They ache in places that have just worn out.
I often wonder about their relationship with time. Do they see every day as expansive and open—though their remaining years are numbered—and simply push death into a muted space in their minds?
I can’t do it. This has everything to do with the tight time box in which I live. I can’t break out of the two-week cycle of treatment and the disruption and disturbances that drag along behind it. And I don’t dare think about what will happen when the cycles of this clinical trial come to an end. So…
How should I count time now?
– By the number of chemo sessions—24 equalling roughly a year?
– By the number of grey hairs that have appeared on my sons’ heads since this all began?
– By the expansion of my love for my grandchildren—those born and those I hope to see born?
– By the mountains of books I’ve been able to read through all this?
– By the friendships cemented through this ordeal which is NOT a wasteland?
– By the number of seasons that have passed: mindful of the sounds of each, the smells of each, the beauty of each?
– By the people I’ve met online as a result of reaching out blindly?
– By the length of the list of chemotherapy side effects I now live with?
– By the quality of the regrowth of white baby hair that now covers my head?
– By the number of evenings spent in the den with my sons and friends, wrapped in soft blankets and binge-watching shows on streaming channels, and DVDs?
– By the number of Dungeons&Dragons sessions I’ve participated in since my diagnosis?
– By the number of times I’ve stepped out the front door of this house in Hudson, inhaled deeply, and felt the goodness of the air?
– By the losses of loved ones that have come to pass these last 14 months, each a warning, a wake-up, a reality check?
– By the number of days’ endings, during which I snuggle into my bed propped up by a sultanic mountain of pillows and read till my eyes can no longer stay open?
– By the recurring meltdowns I’ve experienced—all fight drained out of my mind and body and sadness moving in?
– By my increasing, constant resistance to being trapped inside a small life of two-week cycles?
– By all of the lessons I’ve learned since having the wool peeled away from my eyes?
– By the degree of my transformation into a wizened and hopefully wiser woman?
– By the growing sense of an ending that I am moving toward ?
– By the increasing understanding that pain and love are a two-sided coin: the more I have experienced sadness and anguish, the more I have turned to love and the state of grace it makes possible?
On Friday, September 27th, Greta Thunberg came to Montreal to speak a little, but mostly, to act as a beacon—a shimmering example of what it means to have the courage of one’s convictions.
She, with her diminishing body (at least that’s what appears to be happening to her as her self-sacrifice to the cause of climate change siphons her energy), but growing presence on the world stage, is doing more than it seems possible to ask of any human of the twenty-first century.
She spoke very briefly and shyly before the march began. Her presence was enough: Montrealers were galvanized. Somewhere between 300 000 and 500 000 men, women and children showed up to the “Strike for Climate Change”.
My city was so beautiful that Friday. The turnout: unimaginable.
I had been invited by my good friend Ann to join her and her party at Mount Royal (or Mont Royal). Alas! Though every cell in my body—even the malignant ones !—wanted to be there….
To add one more person to the crowd;
To YELL how critical the imperative to radically transform our way of living on Earth is.
I just couldn’t:
Stand for 4 to 6 hours;
Risk exposure to pathogens in such an immense crowd;
Walk around for hours and hours with no reasonable hope of finding a bathroom (chemo leaves poisons in me that multiply my visits to the toilet as my body’s filters fight like mad to clear it all out).
So, sadly, and instead, I sat for hours in front of my laptop (we don’t have cable) watching the CBC live feed–as unscripted and as raw as such things get.
It wasn’t what it could have been (for me that is), but I did feel part of that happening. I felt joy. My heart beat faster as I scanned as many faces in the crowd as I could, trying to gauge the energy levels there on the ground, and the benevolence, the generosity of spirit, the commitment of the marchers.
They were THERE, commingling, and I was tucked 60 km away in Hudson, but I received so much from them. I was hope-filled. Maybe Montréalais (and Québécois?) are truly ready for the massive change that MUST begin—the complete paradigm shift we will hopefully survive—still connected and caring about each other and about our home planet.
It’s a maybe I want to put stock in. A few weeks ago, as a bunch of us—all of them friends who were originally Simon’s and Christian’s from work and other parts of their lives, men and women across several generations—played D&D together, one of the men, a dad in his mid-forties, said, regarding the Strike for Climate Change that still lay ahead: “Forget my generation [he’s Gen X], and every other older one. My generation went for the money, just like the rest did. it’s humans under the age of forty who have to take the reins and change the world.”
I think that intuitively, we all felt the truth of his words—the “You can’t teach and old dog new tricks” fatalism. But why accept that view?
The week following Montreal’s Greta-inspired strike, a La Presse columnist wrote a piece about the energizing effect of the event and the high so many were coasting on in its aftermath. And then he doused his readers with cold water. With the next federal election just a few weeks away, despite the regular sounding of the climate change alarm and the hundreds of thousands who marched with Greta in Montreal, according to the most recent poll, climate change is the number one issue for only 21% of Quebecers, whose top concern is taxes and the economy: the deciding factor for 36% of Quebec voters. Of no comfort at all is the fact that in the rest of Canada, 43% consider taxes and the economy most important.
Despite the negative effects of chemo on my eyesight, this rapprochement with death that I’m learning to accept as I live with advanced cancer has given me a different sort of clarity. When you live outside of the daily presence of death and dying, it’s so easy to cozy up to the illusion of a slippery, sliding timeline; to think of the future as something always there…undefined but lying waiting for you…And what gets lost is the urgency to live fully, which requires that you care about every moment.
How Greta Thunberg came to live with that sense of urgency is a mystery to me, though I suspect that there are far more humans like her than we might think—people who want to live long and full lives but who take not one day of it for granted. Such mindfulness can be a burden. It makes of some of us canaries in a coal mine.
On September 27th, I felt love for Montrealers and gratitude towards Greta Thunberg.
If you accept, as I very much do, that our beliefs, thoughts and intentions affect the physical world, then you may have experienced Friday’s march as a noetic event. A moment of elevation.
The people I know who were there on the streets, united in this single cause, felt it. All of them. Ann and her group. Cate and her gang. Anne-Marie and her companions…
Montrealers came together and lifted their faces to the sun, the blue and the clouds, and were passionate and impatient and sincere in their worry, and jubilant, offering their prayers for a future for all. It was a marvel to witness.
Montréal, je t’aime.
I’m always at risk of having hope, lightness of being and belief in the future trampled by my cancer and its effects.
Greta and my beloved Montrealers have helped redirect my energy. OURS is a fight worth engaging in. A future for everyone. The collective joy of being alive and filled with shared purpose.
A month ago, at a time which roughly coincided with the beginning of my second year in this clinical trial and the repetitive sameness of the life it has reshaped for me, something unexpected happened.
It was Monday morning, the chemo week Monday when I head into the CHUM to have my pre-chemo blood tests done, and to see my research nurse and one of the oncologists from the team who treat my cancer. Every part of this day is so familiar that it has become routine—from the moment I hop on the train at Ste-Anne-de-Bellevue to the moment I get out of the metro and follow the short tunnel that leads directly underground to the first floor of the CHUM.
I often stop at the small café there and grab a decaf coffee before heading toward the elevator that takes me to the 14th floor. Once there, I immediately register my presence by swiping my medicare card under a scanner which then issues me a small white paper on which is written a number—something like PL025 (PL for prélèvement, or blood test). My nurse and doctors are also immediately notified of my arrival. It’s a routine I’ve performed dozens of times since I first began treatment. But four Mondays ago, nothing went to plan. The moment I stepped off the metro and started my walk, something wavered inside me. My autopilot shut down and with no warning at all, my eyes filled with tears and there was such pressure in my throat that I could barely swallow.
I was coming undone. Having some sort of quiet but perfectly visible meltdown. I continued walking down the hallway, past the angelic guard who greets every single passerby with a smile and words of wisdom, taking deep breaths and waiting for this destabilizing malaise to subside, but a wobbly inner voice repeated only Oh-oh, you won’t be able to get it together—you won’t be able to stop crying…, drowning out the part of my brain where my wits were being overridden and which shouted: “What the hell’s going on? You’ve never felt this way before. You LIKE the CHUM. It’s Monday, the EASY day. Get a grip!
But then came that vacillating, gushy need to cry again…
God. Well, this was a new low. I entered the elevator with shiny red eyes and the sniffles. Once on the 14th floor, I scanned my card while snot clogged my nose and throat. You know this feeling if you’ve ever had a good sob. Your pulse is elevated, you feel unsteady. Your breathing is shallow and rapid. You tremble. It’s completely embodied.
When my nurse, Chantal, arrived to greet me and asked how I was, I blubbered, like a baby, a rambling apologetic explanation that contained a lot of sorrys (or in this case, Désolée, Excusez-moi), rattling on about not being sure exactly why this was happening, although I did have similar experiences at home; that it didn’t even mean that I was sad, that it was just my wonky filters…
Chantal, who is the most serene human being on the planet, smiled gently, then hugged me and reassured me that I wasn’t the first patient to have emotions like this, and that she would be back once I’d had blood drawn, and we’d do my weigh-in + vital signs before seeing the doctor. Business as usual, was her message.
And so I sat and waited with sorrowful pink eyes and Kleenex in my hands, feeling mortified. I was on the cancer floor—Cancérologie—and I was such a depressing sight! What must the rows and rows of fellow waiting patients be thinking as I sat or walked here and there. Her treatment must be going poorly, or She must have recently received a brutal diagnosis or bad news…
And STILL, my chin was quivering, my mouth was dry, my breathing was shallow and my eyes, determined to remain fountains. When I was finally called in to see the oncologist, it wasn’t my primary physician, Dr. Aubin; it was Dr. Loungnarath, a lanky, curly-haired, imperturbable, youngish gastro-intestinal surgeon in oncology, who greeted me. And of course, the minute he asked: “Comment allez-vous?”, I started blubbering again, as Chantal watched, still smiling at me with compassion.
Dr. Loungnarath looked at me, and said (in French): “Well then, we’re going to give you an extra week off.” To which I responded a shaky “Thank you, I think maybe I’m a little weary (sniff-sniff).”
(Surely there are more dignified ways to get an extra week off from chemo.)
* * * *
I was back in chemo last Wednesday, smiling, and my composure regained. My veteran patient’s game face back on. But this time I carried with me a slight fear, or perhaps more of a doubt that I can count on myself.
What happened three weeks ago?
What short-circuited all of my defenses and let the floodwaters loose? (and what were those waters all about?)
I sat down and made a list of possible suspects, of possible triggers. It includes:
How small my life feels at times.
How circumscribed my days are.
How similar the weeks are: one on/ one off.
How small is the loop I live in.
How altered the future appears.
How I feel from day to day—the limitations of my body going through chemo
The limitations of my body in illness.
I suppose that what this amounts to is fatigue and a deep, bone weariness, that I’m mostly conscious of when it reaches a tipping point.
And this is how and when I slip into self-pity.
In her memoir Gather Together in my Name, Maya Angelou wrote that : “Self-pity in its early stages is as snug as a feather mattress. Only when it hardens does it become uncomfortable.”
Have I allowed myself to snuggle up with such a nasty emotion? It just may be. And if so, then I can say that self-pity is a small, stifling place that I don’t want to go back to.
Since then, so many things have washed over me. One of them was a simple conversation with Simon one evening in the den, where we were watching Netflix together. It was perhaps one of the more melancholy and intense shows, and we started to talk about sadness, and how people deal with the pieces that are missing from their lives. Simon always has a broad perspective, and as we chatted, he mentioned that human beings are programmed to fixate on the negative aspects of their lives—on the missing or broken pieces; and he said that if you tell someone 25 positive things about them, and 1 negative thing, that they will almost surely fixate on that one negative thing…That we are made that way, And so he said: I try to not allow my mind to go there—to those places of dissatisfaction and unhappiness. I try not to let my thoughts wander there. And I say to myself: you are one of the luckiest people in the world. You are one of the luckiest people in the world.
And I smiled. Because I remembered an exercise I used to have my students do in French classes, It was a questionnaire designed around select statistics and the world population. Things like: How many people in the world earn less than $5 a day? How many people earn less than $10? $2? What percentage of the world population has a university education?…
And of course, the survey revealed two things: the first was that, by and large, most people have shelter, access to potable water and access to the internet via cell phones; the second was that everyone in the classroom, because they are living in Montreal, is likely to find themselves among the top 10-15% of the world population in anything that’s related to affluence and abundance, and a social safety net, and standard of living.
I remember how the first time I put a group through this (I had them guess at the numbers in teams—they chatted away like mad), all I felt was indecently fortunate.
And so, Simon’s exhortation to focus on our common great, good fortune; and on the plenitude that is ours; and on the love, friendship and family; and to make gratitude a habit…
Well…it sure beats self-pity.
As a matter of fact, at a time when we are actually speaking in urgent and terrifying terms of apocalyptic climate change and mass species extinction, my self-pity is indecent, and I am a sorry-assed human.
If my tone slides back toward that small, stifling place, tell me to shape up.