“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.
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?