THOUGHTS ON THE SECOND DAY OF THE SECOND MONTH OF THE YEAR 2020

Part of the THIS IS THE MOMENT series

February 2nd, 2020

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.

Michael Bennallack Hart (b. 1946)
Stonehenge

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.

Neilson, M. E.; Sky, Hills (Autumn Evening); NHS Lothian (Edinburgh & Lothian Health Foundation); http://www.artuk.org/artworks/sky-hills-autumn-evening-184589

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.

Mi-Young Choi, Enlightenment

BRANCHES

Part of the THIS IS THE MOMENT series

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.

This year’s tree

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

The tiny angel that tops our tree

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.

Christmas at our house, December 26th

 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.

unknown artist; Street Scene; The Mercer Art Gallery, Harrogate; http://www.artuk.org/artworks/street-scene-9117

 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.

My ten year-old peace lily that produced 10 blooms just in time for Christmas (some are hidden and just beginning to push their way through).

15 ROUNDS WITH AN IMPLACABLE ENEMY

The norovirus

Part of the THIS IS THE MOMENT series.

It must have been the bragging.

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.

Sadler, Walter Dendy; Afternoon Tea; Cardiff Council; http://www.artuk.org/artworks/afternoon-tea-158989

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.

Ribot, Augustin Theodule; Mother and Daughter; Glasgow Museums; http://www.artuk.org/artworks/mother-and-daughter-85855

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.

Plague doctor masque

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?.”

Stainton, Alice; Trug with Carrots and Vegetables; Bushey Museum and Art Gallery; http://www.artuk.org/artworks/trug-with-carrots-and-vegetables-16026

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.

Cursiter, Stanley; Abstract; Orkney Islands Council; http://www.artuk.org/artworks/abstract-167473

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

Rand, Michael Anthony; Sunshine through Mist; Lyth Arts Society; http://www.artuk.org/artworks/sunshine-through-mist-166839

 

 

HYPERGRAPHIA

Part of the THIS IS THE MOMENT series.

November 11th, 2019

unknown artist; Chinese Script*; Division of Archaeology, University of Cambridge; http://www.artuk.org/artworks/chinese-script-194505

 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.

Lessore, John; Woman Writing at a Desk; The University of York; http://www.artuk.org/artworks/woman-writing-at-a-desk-9812

 

 

 

 

 

HOW SHOULD I COUNT TIME NOW?

Part of the THIS IS THE MOMENT series

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.

Henry, George; Autumn; Paisley Art Institute Collection, held by Paisley Museum and Art Galleries; http://www.artuk.org/artworks/autumn-190155

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.

Meynell, Caroline; Beech Trees; Buckinghamshire County Museum; http://www.artuk.org/artworks/beech-trees-230934

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.

MacWhirter, John; An Autumn Evening; Wigan Arts and Heritage Service; http://www.artuk.org/artworks/an-autumn-evening-162630

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?

Knowles, Mike; Rain Clouds Gathering, Autumn; Llyfrgell Genedlaethol Cymru / The National Library of Wales; http://www.artuk.org/artworks/rain-clouds-gathering-autumn-120090

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?

Jaroslav Panuska Death Looking into the Window of One Dying (1900)

 

This IS the moment

Part of the THIS IS THE MOMENT series.

 September 30th 2019

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”.

Crowd on Mount Royal, September 27th, 2019

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 REPRESENT;
  • 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.

Allen, Tim; In the Future; Arts Council Collection; http://www.artuk.org/artworks/in-the-future-63049

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.

https://montreal.ctvnews.ca/video?clipId=1791612

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.

Taylor, Sarah; Still, Self, Life 3; Southampton Solent University; http://www.artuk.org/artworks/still-self-life-3-17311

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.

This IS the moment.

Gunn, Chloe; Contemplating the Future; Imperial Health Charity Art Collection; http://www.artuk.org/artworks/contemplating-the-future-251238

 

THAT SMALL STIFLING PLACE

Fire Tree,

Part of the THIS IS THE MOMENT series.

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.

illustration by Jon Han, New York Times, June 25th 2016

 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.

Lakey, Andrew; Angel of Hope; RNIB College Loughborough; http://www.artuk.org/artworks/angel-of-hope-80857

 

WE BUILT A CATHEDRAL

Part of the THIS IS THE MOMENT series.

We Built a Cathedral –A poem by Michelle Payette-Daoust

 

Thoughts about the marriage I have let go of

and words to the husband who, like me, continues to move on…

 I look at my hands,

thinner and made darker and damaged by chemo:

These are not the hands you knew.

I look at my body, frailer,

and hiding just beneath the skin of my upper right chest, a port for chemo:

This is not the body you knew.

I  look at my life, now lived in this country town,

in this new house in which I feel no ghosts, no memories, no shadows and no sadness:

This is not the home we knew.

 

On a clear and cool September day in 1980, I said—

filled with tender love and hopes for the life that awaited us—

I will love you always, till death parts us.

 

These vows,

taken and uttered with such purity of heart,

have not weathered time and storms and exhaustion.

 

We built a cathedral that we cannot live in together

—our family—our magnificent sons and grandchildren;

yet it stands, solid, sacred and majestic. It inspires many.

 

I am sick. My time may be short.

Here is my life. It did, and didn’t, go to plan.

In most ways though, it chimes. It rings. It peals. It tolls as loudly as it ever did.

It resonates in me and through me, transcending the birds.

 

Allen, Kathleen; The Last Bus; Leamington Spa Art Gallery & Museum; http://www.artuk.org/artworks/the-last-bus-54609

MY CAREFULLY CONSTRUCTED SELF

PART OF THE THIS IS THE MOMENT SERIES.

August 19th, 2019

I’m alone this morning. Christian now lives with Vickie, at her place in Verdun, and Simon is easing his way back to work at John Abbott College. That leaves me here, in a quiet house for a few days at least.

The sky is backlit that strange yellowy tint that is a harbinger of thunder showers. The smoke tree across the street looks like it’s glowing.

The smoke tree

I awoke at 3:30 this morning. It happens sometimes, usually when I’ve gone to bed early. It isn’t a problem unless it’s on one of the nights before I have to go to the CHUM. Then it can make me a bit anxious and worried that for some inexplicable reason I’ll sleep in and miss my train. Like tomorrow, when I have a CT-Scan scheduled, or something added to my usual alternating weeks of “peace and normalcy” vs “chemo” (which requires me to be at the CHUM two days, and then head to the clinic in Rigaud—a 15 minute drive from here—on the Friday, to be unplugged from my Fluorouracil (5 FU) infuser).

It’s become quite a grind.

When I woke up this morning, in the predawn hours, my thoughts went—as they’ve been doing for a few weeks now—to the reality that this Thursday, August 22nd, which is Christian’s 28th birthday, will also mark the 1st anniversary of my bi-weekly chemotherapy treatments. It’s a jarring juxtaposition to say the least, but it’s certainly easy to remember and, come to think of it, the fact that it will always evoke my lovely Christian is gentling.

Our human minds are set for patterns and cycles and chronologies, which are useful for making sense of the life teeming around us. We understand the need to become accustomed to beginnings and ends. And change. And the evolution and devolution of things (well, most of us do). And that’s why, inside my head, there’s an invisible wall with chalk marks like those the Count of Monte Cristo scratched out in the Château d’If.

Those marks, that counting of days, is of course one of the devices that helps me cope with my stage 4 cancer and its treatment. I was put on this uncompromising, hopeful, difficult, medicalized path last year. As you know, there was real serendipity involved in my being chosen for this research protocol/clinical trial.

I’m not sure what the tone of this missive to you will end up being. I’m not feeling sad. But I’m feeling one year wiser. There are so many things I know now that I didn’t then, despite watching both my parents and so many others go through cancer treatment.

That’s because there’s the visible journey, and there’s the inner journey.

How strange! As I sat writing these last sentences, a Mary Gaitskill quote from my We Croak feed just pinged on my phone. It states:

To be human is finally to be a loser, for we are fated to lose our carefully constructed sense of self, our physical strength, our health, our precious dignity, and finally our lives. A refusal to tolerate this reality is a refusal to tolerate life, and art based on the empowering message and positive image is just such a refusal.”

Farquharson, Joseph; When the West with Evening Glows; Manchester Art Gallery; http://www.artuk.org/artworks/when-the-west-with-evening-glows-204968

It’s a strange coincidence that places before my eyes a (partial) reformulation of what I’m trying to get at, just as I’m struggling to do it, and at the same time, brands me with weakness as a writer if I tip toward a positive message…

Well, Mary Gaitskill and I are looking through a similar lens this morning, though our predispositions and perspectives differ.

If I understand her correctly, Mary Gaitskill is saying that death is ever present; that to be alive is to live with the daily encroachment of the finality of death, in the form of constant, incremental loss.

Of course that’s true, but also, not the whole story.

During this past year, I’ve clung to the gift of a clinical drug trial because it WAS a gift. It lifted me out of utter hopelessness and the terrible, threatening inevitability of the painful progression of my disease. It helped me to see and feel something other than fear and grief. It offered reprieve. It lifted my eyes to a new horizon: much shorter,  and somehow hazy and impossible to visualize—or maybe that’s only because in all likelihood, it’s just another, less frightening path to an earlier death than I had imagined for my life. It sprinkled all of it with the tiniest amount of irrational hope—of the kind that allows a thin voice inside my head to whisper every now and then: Maybe you’ll win the cancer lottery and your tumours will just disappear or halt in their tracks.

I usually walk myself back from those thoughts, because though they’re necessary, they can also steer me too far from the here and now.

And that’s what this anniversary is really about. Negotiating the here and now. Every second of every day. Because I am aware of each passing second, or at least, more aware than most people, though I DO escape the tick-tock now and then and it is salutary (Mary Gaitskill be damned).

I  wake up in the morning with my eyes glued shut by a gel that does what my tear ducts can no longer do. I remove the gloves that cover my hands upon which I slather a balm every night, to slow down the deterioration of my skin and nails. I observe the latter, which look like they may be headed towards disappearing altogether, as my cuticles encroach on the nails, which are frail and sickly and cracked and beginning to separate from the nail bed, producing a u-shaped white area on the top part of each finger nail. I often wake up stiff and sore and stumble to the washroom like an octogenarian with bad hips and feet. I take two pills in the morning and then wait 30 minutes before I can have a cup of tea (otherwise I can get heartburn). Everything I do in the kitchen, from starting the coffee maker to buttering toast hurts my hands. My nose is coated with a thick layer of hardened snot because my mucus membranes are working overtime to protect my sinuses from the fate my hands and feet are succumbing to. When the snot fails, I have nosebleeds (which can be triggered simply by standing up). My feet, ankles and lower shins are weirdly painful, stiff and numb at the same time.  The inside of my mouth is red and hypersensitive (most of these issues are caused by the damage done by chemo to my epithelial cells).  Although my eyelashes have grown back (though they’re thinner), I no longer wear mascara because I have to put drops in my eyes every two hours or else they burn and I can’t open them in sunlight and my vision  gets wonky (again, epithelial issues—my corneas, in this case). No need to add mascara stains to that sexy mess. Last week, I was sick a whole day simply because my gut can’t handle food that has been in the fridge more than a few days (though everyone else enjoyed the chocolate sauce on their ice cream with no repercussions. Sigh). If I drink even an ounce of wine or beer, my hands burn (I still do, a wee bit, every now and then). My new shock of white hair is so soft it feels like petting a bunny rabbit. Last week, while with my grandchildren, I was on my knees assembling two one-hundred-piece puzzles and playing a round of Mouse Trap. Three days later, I noticed a very dark thick scab on the edge of my right knee. Confounded, I showed it to Simon who said: “You did that while kneeling down when you were playing with Penelope and Graeme!”. I’m not sure if I’m more upset that I didn’t even register the sore, or that it happened that way in the first place.

There’s more stuff like this. There’s the time spent going back and forth to the CHUM and to the pharmacy. There’s never knowing which days I’ll have lots of energy and which days I’ll feel frightened by my fragility.

It’s no longer possible to say mind-over-matter and push my body to work and go, go, go! Dinner out may or may not be pleasant; easily digesting it can be hit and miss. Just plain keeping up with the world is a gargantuan task for me. This is the cost of treating my cancer.

I cannot see the far horizon, or if I do, I am no longer in the frame. My children and their children are, though, and that gives meaning—profound meaning—to my here and now.

Gill, Madge; Patterns*; London Borough of Newham; http://www.artuk.org/artworks/patterns-249289

I had a difficult phone conversation today with someone very close to me. It required me, at the very end, to speak emotional truth that I knew the other person was not prepared to receive. It was very upsetting, stirring up old wounds, old traumas. But what has struck me since is that the pain of that conversation also traced a path directly to truth and to the cost of love.

This is the framework of my inner journey. What it feels like in here. Some days it’s tunnel-like, sometimes dark and cavernous. Other days, it’s like being lit up by fireflies at night. I feel electric and consciously alive in a way I had never previously experienced. That light is what life and love feel like. They illuminate our way. To the end.

Shackleton, Keith; Albatross Escort; Nature in Art; http://www.artuk.org/artworks/albatross-escort-62610

 

 

 

 

 

 

 

 

THE NEW NORMAL

Part of the THIS IS THE MOMENT series

August 6th, 2019

I was told last week about someone (to whom I have no direct tie) who has recently received a diagnosis of lung cancer. Those last two words usually make my heart drop, but she was told that her cancer appears to be localized—that it doesn’t seem to have spread. What good luck wrapped up in her misfortune! She was put on a protocol of chemotherapy that requires only that she take a pill a day, at home, for the rest of her life.

To me, this is the stuff that science-fiction is made of. My understanding is that she was told that her treatment should be sufficient to allow her to live for a long time. This seems like magic. May her medical team be correct!

Shackleton, William; Wings of Silence; Leamington Spa Art Gallery & Museum; http://www.artuk.org/artworks/wings-of-silence-54462

But then the person telling me this story said that she was having a terrible time. That the daily pill was making her sick, causing nausea and diarrhea. That she was depressed. Scared. Not managing. That she had said to one of her two children: This is the new normal, and I don’t know if I can bear it (or something very close to that).

The trusted person sharing this news with me wanted to know if I had any ideas about how to help her, because, though she lives here, in Montreal, her two grown daughters live out of province—one, thousands of miles away—and this mother of two is also divorced. She is alone a lot of the time, when she’s not at work.

The new normal. Three words that say so much. Three words that every human being who has received any kind of devastating news about their health (or, I would argue, about the health of a precious loved one) learns are both literally true and dismally euphemistic.

What this woman is trying to describe IS different than great upheavals such as being forced to move away from a place one considers home; or traumatic events such as a car accident, or the loss of a job…All of which can require tremendous adjustments and adaptation and cause immeasurable stress. But all of which leave their victims with a sense of still undefined horizons.

But this woman, this cancer patient, is referring to the feeling of having her existence hijacked overnight and waking up to a life in which she must face death every day. She’s lost sight of the horizon. Her goal is stark: to survive. The means to achieve it: to swallow every 24 hours a modern poison so strong, even death shuns it…at least for a while.

Osborne, Jeannine; Cage; University of Dundee Fine Art Collections; http://www.artuk.org/artworks/cage-91199

1 pill/day = life. This is the equation. These are the terms of survival.

If this is the new normal, then I don’t know if I can bear it.

Ross, William A.; Segregation Cell; Galleries of Justice; http://www.artuk.org/artworks/segregation-cell-46307

Of course, at first, upon hearing about her, as far as I was concerned, she’d won the cancer lottery: one pill a day, minimal hospital visits. But the truth is, every time she takes that pill, she thinks of cancer and of death. And, it seems, every time she takes a pill, it makes her feel sick. I imagine, too, that it makes her feel vulnerable, and frightened, and alienated from her own body. And that her sense of the future has begun melting away, leaving in front of her a sparse, barren-looking landscape.

In this way, she reminds me of another cancer patient, a beautiful New Zealander who has lived most of her adult life in Sweden, and who began writing to me when she stumbled upon THIS IS THE MOMENT online. She reached out to me—she chose to make contact. And all I think she really wanted from this, at first, was to hold a virtual hand. To feel less alone but also, to feel kinship. She was so brave to do this. She wrote (and her words have stayed with me—they’re part of me now): “I still don’t know how not to be afraid”. I believe that I loved her from that moment.

I want to tell the woman struggling with the abnormality of her new normal that one branch of medicine that oncology has made huge progress in is the management of side effects, and that there’s no reason for her to be feeling so sick all the time—and that she needs to insist upon finding a specialist who can help her manage these debilitating symptoms of poisoning (and not to discount the therapeutic effects of medical marijuana).

I was told that she is someone who has always taken care of everyone around her. I want to tell her that her new normal will have to include arrows of caring and helping that come from the outside and work their way towards her. That she has to love herself better.

And then, I want her to find a way to plant a garden. It can be filled with plants, flowers and trees. It can be filled with friends, neighbours and family members. It can be filled with acquaintances newly made through activities in her community. It can be vital energy that grows in her workplace and helps her to feel useful and…”normal”. But she needs to grow her life till the daily pill is an afterthought.

It isn’t time to dig a hole and shrink within it.

Ward, Martin Theodore; Two Fox Terriers in a Landscape; York Museums Trust; http://www.artuk.org/artworks/two-fox-terriers-in-a-landscape-8174

I’m fortunate. I have people to drag me out of that hole—one that even writing can open up around me. They bring me to my grandchildren, friends, family and they bring the latter to me—and I try to remind myself, afterwards, of the tingling feeling of human connection and love that I surfed on for hours and days afterwards—and remember, too, not to give in to reflex behaviours.

McLean, John; Catalan Blue; University of St Andrews; http://www.artuk.org/artworks/catalan-blue-125588

 

 

 

HUMAN BINDWEED

Part of the THIS IS THE MOMENT series.

July 21st, 2019

The office

This is the first post that I produce from the office in our house.

It took a full year of living here before I was able to muster the energy (mostly psychological I think) to clear the space—which had become the dumping ground for all of those I’m-still-not-sure-where-to-put-that-yet-so-let’s-stick-it-in-the-office objects—and make it a working, appealing place to write and spend hours of time (I’m so sorry Christian).

Well, it’s done.

Just in time. Ha! Tomorrow is my birthday. July 22nd. I’ll be 61 years old.

A decade ago, you would have mentioned that tomorrow I’d be 51, and I would have been as non-plussed as if you had told me that I would still have a nose or toes the next morning.

But this year, I’m finding the experience of my birthday peculiar. There’s the very obvious fact of my still being alive. Which is everything.

And maybe that’s it. Jeremy and Anne and the kids had us (a big chunk of the family) over for a birthday party for me last Saturday, the 13th, because this weekend, they knew they would be celebrating Anne’s parents’ 50th wedding anniversary. FIFTIETH!

Later today, we’re headed to my mum’s for a second birthday supper (she was at last week’s too), minus Jeremy’s gang. Finally, tomorrow after driving to see my grandchildren at their swimming lessons (yippee!), Simon and I will have some lunch and then go see a movie (Spiderman), because, well, it will be the actual day of my birthday, so more has to be done!

I was so happy last week at Jeremy’s, but also trying to find my bearings. And that same discomfort is making itself felt in anticipation of this afternoon’s program. I love all of the people who have sent me their wishes, who have invited me to their home, who have told me through cards and constant thoughts and actions that I am loved. Tomorrow, I anticipate lots of Facebook messages…

And yet, what I wish is that it all be wrapped up in one dense and compressed two-minute bundle of time. And be over with.

Turning 61 isn’t a shock to me—no matter the progress of my disease (there is NO progress at this time, as a matter of fact, and I can only be grateful every day and hope that this continues to be true for a very long while)—I did figure that I would be here this year. Everything ahead…that’s a different story. It’s all fiction, till it isn’t. That’s my narrative now, and maybe it should always have been so.

Bindweed

But this year, fêting July 22nd  feels excessive. Enough about me! It feels like for the past twelve months, from the moment of my diagnosis, too much of every day has been about me. I’m human bindweed; I have invaded the lives of everyone I love, messing up their schedules, clogging their plans and adding a heaviness to their lives…

I have been made invasive by this incursive disease called cancer. It isn’t my intention to leach into other people’s lives, but it is my effect. And the people I love, they’ve been so…not just tolerant, but gracious! Kind. Reliable beyond the call of duty. Joyful. Helpful. Indefatigable. Good natured. Sensitive. Compassionate. Perceptive. Irreplaceable. Constant.

Maple sapling

The best thing I could have done this July was give them all a break! But,  observing our garden, Simon and I are learning all about the persistence of weeds, and how they cling to other plants and to the soil—in order to live.

I would prefer to be one of the maple saplings sprouting up in the part of our property that we’ve decided to leave fallow, and that Simon and I are rooting for, imagining a future, maybe a decade or two away, when the tiny saplings will have become lush and beautiful trees that blush every fall.

The most I can do, now, is hope to watch the saplings grow, unencumbered by weeds.

Fallow land

BEYOND THE UNFILTERED NOISE OF THE WORLD

Part of the THIS IS THE MOMENT series.

Started June 17th 2019

 I was standing in the shower, a full ten months after beginning chemo, washing my hair and running my unreliable hands over the surface of my scalp, and what I felt was slippery curves and clumps of soft, slightly fuzzy hair that my shampoo-slick hands just glided over in a way that was completely foreign to anything I had every felt on my own head in the past, and I was reminded of the feeling of lambs’ wool, which was still often used to make the collars and cuffs of winter coats when I was a child—soft knots of newly grown warmth.

It was the manner in which the novelty and the foreignness of the experience coincided that instantly brought me to the fact of my cancer-grown white hair (though I’ve been colouring my whitening hair for years, it wasn’t THIS hair, which is what my body has produced under the influence of poisons shot through my system) : this baby soft, fragile, gradually thickening white hair and its inextricable connection to my cancer.

McNairn, Caroline; In a Foreign Country; Glasgow Museums; http://www.artuk.org/artworks/in-a-foreign-country-85286

Every time I step out of the shower and stare at the reflection in the mirror, I’m reminded of all of the losses of the past year; all the ways that I’ve become alien to myself. Of late, what I see and feel is premature aging, which may be a sensation common to many or all who deal with a chronic and debilitating illness. I just hadn’t ever considered it before.

I live like a person with cataracts even though what I have is irritated corneas and burning secretions from my eyes caused by chemo. I live like someone with arthritis, even though what I’m experiencing (this is a more recent symptom) is inflammation in my joints (thumbs, knees, right elbow, right hip, lower back) and muscle stiffness, probably caused by the immune therapy I’m so lucky to be receiving (this is written WITHOUT sarcasm). I live like someone in the very early stages of dementia, even though I’m actually struggling with what’s commonly known as “chemo brain”, which plays havoc with my ability to keep time straight and retain some sort of coherent relationship with the calendar, as well as remember things, people,  words and facts, that I once recalled effortlessly.

Reynolds, Alan; Sunset; Nottingham City Museums and Galleries; http://www.artuk.org/artworks/sunset-46873

Turning into someone who has become, in effect, an old woman overnight, is part of the small but daily humiliations that accompany the treatment of my cancer.

I’m being schooled by this ubiquitous disease called cancer, and by its treatment. In the early days after diagnosis, the sudden medicalization of my life gave my predicament a shape and an energy that propelled me forward. I lived by a calendar of interventions and chemo and appointments with various specialists  and scans—everything driven by an objective of…What was my objective? What was the medical team’s? I think that at first, I was just grasping at life. It was like being launched, with no warning, out of an airplane with a parachute for the first time, and hurtling towards earth, and hoping that the ground below would be flat and soft and safe—and that I wouldn’t end up broken and destroyed by the sharpness of trees or rocks or other unyielding things.

Wenzel Hablik, “Mont Blanc Sunset” (1906), oil on canvas, 96 x 96 cm (© Wenzel-Hablik-Stiftung, Itzehoe)

But somewhere in the past few months, it’s become clear to me that I now live in the company of death—with the awareness of death—almost every waking minute. This isn’t because of a morbid fascination that I have developed; it isn’t a symptom of depression or of giving up one iota of my desire to remain here, and LIVE.

It’s a side effect of my side effects, by which I mean: all of the injuries to my body caused by my treatment are the reminders that prevent me from any real escape and keep me tethered to cancer and mindful of it.

And, inexplicably, life seems to be conspiring to keep things this way. There was Rana’s recent death from cancer, which you know about. But there was also the death of Johane, a woman who was my neighbour for 38 years, who died of a debilitating disease last week. She was 62. And there is the illness (metastatic cancer), of a very close family member who is only 54, whose ongoing suffering is indescribably difficult for her and for everyone who loves her.

These have left me with depleted emotional energy and with diminished defences; these many  losses penetrating me so easily, and then staying, as though my cancer had activated an emotional magnet or dish, pulling in these harsh realities…

What is a life well lived?

How long is it? 62 years? 54? 50?

What is this force that keeps me in the room with mortality? Do these deaths lessen Death’s grip on the private me: the Michelle who lives here, in this consciousness…who is 5 and 12 and 25 and 45 and 60 and lives in all of the memories gathered, the experiences lived (and sometimes just survived) ; the Michelle who now works hard every day to construct a sense of reality in which I’m able to live and with which I’m able to make my peace?

I’m now much more affected by the pain and suffering of those around me.

My sensors are heightened.

Is this useful?

In what way can I put these insights to good use?

Should I indulge in the sadness that comes with feeling the pain of others?

I’m having difficulty distancing myself from it. How could it be otherwise? But I realize that sometimes, it is better to be compassionate and useful, than empathetic and edging close to despair.

Is it unhealthy?

Selfish?

What can come of it: a breaking down of the barrier between me and death?

The ability to live in the shadow of death or with death at arms’ reach and not feel fear?

There’s something happening to me. I’m more permeable. More absorbent. Everything in this life feels more real and more grounded. I’m not afraid of the emotions of others. I’m at ease with emotional intimacy. I want to be trusted and entrusted with the feelings and thoughts of others.

In this room, there’s no space for pretence or forced gaiety or hostility or careless behaviour.

I want to love and feel and reach out beyond the unfiltered noise of the world.

Zora J Murff, Untitled from Fade Like a Sigh

 

 

 

THE SHAPE OF TIME

Part of the THIS IS THE MOMENT series

  • My extraordinary friend Louise, who will turn seventy this summer, said to me (in French): “The thought of turning seventy, I’ve gotten used to, [it will happen in July] but then I think that the next milestone is eighty!” (she looks much younger and acts agelessly). I look at her and say: “Seventy sounds awfully good to me.” Ah. She realizes what she has just said. That’s how most of us live, isn’t it? Counting our decades before they’re hatched.
Field, Michele Elizabeth; Trees through the Seasons; Oxford University Hospitals NHS Trust; http://www.artuk.org/artworks/trees-through-the-seasons-43105
  • The list of my chemo side effects continues to develop insidiously. Lately, it’s eyes that tear and leak and burn almost all the time, causing dramatically reduced vision; joint pain all over the place. The other day, my right thumb felt like it had been sprained, and is still very sore; this happened as I walked in a parking lot, touching nothing (Ouch!). Instant injury. There’s my left knee, my right hip, my right elbow (preventing me from doing the cobra position in a sun salutation!); my lips are cracking and peeling; if I sit—the way I am now, to write—for any length of time, I can barely rise from the chair. Everything has become stiff and painful. I am the Tin Woman, like my partner in the land of Oz.

 

  • BUT (here is the loveliest of kickers): I have neuropathy in my hands and feet, which is why I’ve been taken off Oxaliplatin, as I’ve mentioned before. Probably temporarily. But what I love is what the doctors say. They say: Well, we’ll give you a good long break because otherwise the damage can become permanent.

I smile inside and out. A little, invisible balloon of hope rises from my fearful mind.  It could become permanent. You don’t say things like that to someone you know will likely be dead in 2-3 years…At least I don’t think you would. And that’s enough for me right now. They’ve given a new meaning to permanence.

Giovannetti, Luigi Pericle; March of Time I; York Museums Trust; http://www.artuk.org/artworks/march-of-time-i-8789
  • Last week, during one of the loveliest lunches I’ve ever had with my mum (who is 84), she says that of course, SHE DOES NOT WANT TO OUTLIVE ME (this is every parent’s nightmare—age has no bearing here). On the other hand, of course, as she is FULL of vitality and loves life, she wants lots more of it. I say to her that she looks just fantastic sitting across from me, and seems likely to be on track to reach well into her nineties. So we agree that we will try to leave this world as close together as possible, neither one having to live very long without the other. She seems satisfied with that. It’s a goal she can live with.
Day, Jean; Leaves, Four Seasons ; University College London Hospitals; http://www.artuk.org/artworks/leaves-four-seasons-124063
  • My son Christian and I are writing a Harlequin romance together. It was his idea, several years ago. It took us a while to get it on the rails. But oh, what fun we had thinking about it and planning it. It was an idea born well before we knew of my cancer. It was always meant to be serious fun: that is, something we would do for the joy of it, but with the wholehearted intention of having it published and earning income from it. We read some romance novels to prepare. Christian went to the Harlequin website to gather up all of their “How to” parameters. We’re more than half way in. It’s set in a place just like Hudson. It’s for real now. Not just pie-in-the-sky. We work so well together. I want to see this through to publication. I want it very much. And while he and I are busy making it happen, there is joy and lots of looking-forward-to. What I want most from this project is the doing, which keeps us close, and something more. Before I die, I want to know that Christian’s writing life is launched. I already know that he can turn out publishable books for the rest of his life—his writing voice is so distinctive, his mind a whirring generator of narrative (I don’t know how he keeps it all inside his head but that, apparently, is no problem at all)—but I want that to have begun. I want to see it and KNOW that he’s got his foot in the door..
The Cloud Man blew on our backyard trees last week (or perhaps he just kissed their tops? (Photo taken by me)
  • And then there’s Simon, and this multi-generational living project he conceived of, that took one hell of an unpredictable turn last summer when I was diagnosed just as we moved into our new home. His twin, Jeremy, lives happily in Beaconsfield with Anne, and Penelope and Graeme (we’re all goofy, over-the-top in love with them). Jeremy’s life is also enhanced by the ineffable bond he has with Simon, and by his love for Christian (and let us not forget that his mother and father also adore him). But Simon’s vision of the future included this house in Hudson, which is nothing to him if it isn’t a home.

I don’t want to die before our friend Cindy has come and converted part of the house into her studio apartment. This was always the plan. I know that time will allow Simon to create “family” in one of many possible reconfigurations that are meaningful and love-generating. But I don’t want to die before others are here with us. I don’t believe Simon is meant to live alone for any length of time whatsoever. I don’t imagine many identical twins are, but someone as gregarious as Simon? There are things I want to know,  that I want settled, and this one is important.

* * * *

Next month will mark our first anniversary here, in Hudson. This has been the year to topple all previous ones. I’m so glad that none of us is saddled with the gift of prescience.