The Moment – My Final Blog (Part 2)

August 22nd, 1991. St-Mary’s Hospital. Mother and son (me).

When my mother asked me to write the second part of her final blog, I knew that it would be my eulogy to her.

In her last blog, she describes her many losses. The gradual decline of her health, quality of life, and autonomy. I know from our conversations that this chipping away at her ability to live was the most emotionally taxing part of this whole experience. 

For me, they represented a sequence of little deaths, each accompanied by a period of grief. 

I mourned my mother’s ability to ever feel well and healthy again, and gained a deeper gratitude for the privilege I still possess. 

I mourned my mother’s mental clarity, what she called “Chemo Brain”. A very real and disheartening phenomenon. 

I mourned the deterioration of her physical strength, and her appreciation of her own luminous beauty. First with the effects of treatments on her hair, then the inescapable indignity of a wonky colostomy bag. 

It was hard to see my mother’s ability to read and write without hinderance slowly vanish. 

Harder still, I mourned my mother’s ability to live a pain-free life. That is, until she was placed in palliative care. 

But I was also witnessing something awesome. 

After four years of suffering, anxiety, and cancer eroding my mother’s mind, body, and soul, I discovered what remained; who my mother really was at her core. 

Despite it all, the woman I visited in room 105 was kind, patient, easy-going, and generous. She was lovely. She was love distilled. Not only did these parts of herself survive the process, but the darkness in which they were set made them shine brighter. The bitterness, and the resentment at the cruelty of life that was robbing her of her future, weren’t there. She had her moments of sadness, of shuddering under the weight of all those losses, but these feelings inevitably passed through her. 

My mother in palliative care. Photo taken by me, Christian Daoust.

Among my mother’s many passions was teaching. I would say it was her calling, one she found later in life. She was the kind of teacher who got to know her student’s life stories. The names of their partners, the names of their children, and grandchildren. The trials and tribulations which led them to leave their home countries and come to Quebec. Here’s a little story about my mum. 

Years ago, now, she was beginning her career teaching French as a Second Language at an adult education school. It was mid-December, almost the end of term, and she heard that a student of hers–a young single-mother who was struggling to make ends meet–couldn’t afford to buy her child Christmas presents. The very same day, my mother went out and bought some. She wrapped the presents, and brought them to the school’s director, requesting that they be given anonymously to her student. She told no one about this. The only reason I know it happened is because I was home when she walked in with the packages.

In the grand scheme of things, this small act of kindness is just a drop in the bucket. It certainly didn’t rescue this woman—my mum’s student—from her difficult circumstances, but it did ensure that a child would feel special on Christmas, and I can only imagine how important that is to a parent. 

Photo taken by me, Christian Daoust.

            With my mother’s passing I have lost more than a parent. I have lost a great friend (my very best friend, in fact), a confidante, a font of wisdom and love, my writing partner, my ideal reader, and a vital part of my support network. 

The two of us on Portobello Road, London, UK. 2015. Photo taken by me, Christian Daoust.

            I think that for all who knew her, she was more than one thing. Always more than just a friend, a teacher, a sister, a daughter, a neighbour. If nothing else, that’s something remarkable to aspire to. 

            I love you, mum. The best in me, came from you. Au revoir. 

Christian Daoust

My favourite picture.

The Moment – My Final Blog (Part 1)

The following was dictated by my mother, Michelle Payette Daoust, between April 7th and May 19th, 2022 in room 105 of the Vaudreuil-Soulanges Palliative Care Residence. She passed away on May 22nd at 17:40. She was surrounded by people she loved, and who loved her. 

Taken by Francis Séguin.

So much time has gone by since the last “Moonshadow” approached and I thought I would be unable to finish this blog.

The reason is that I’ve become a palliative patient.

Here I am in a place I would never have imagined. And I know, now, that I can share with you and tell you what I’m living. That it will make you feel good. 

It’s interesting how, as I come to the end of my life and of my story—of “this is moment”—what I’m short of, what I am having a hard time finding are the words to describe this experience of moving towards death. Yes. But moving towards something else too. A something I never expected to find.

So here I am, edging closer to the end of my life, which I can’t quite feel yet because of all the meds, and all the wonderful power of care. It has created the illusion that I can remain in stasis, in a kind of never changing, always peaceful, state of being. But that isn’t the way we die. We die incrementally. I will slowly begin to lose the things that keep me in this world. Eventually the tumors and everything else will create pain so strong that palliative drugs (which I hope will work) will knock me out and I will start to just disappear. 

I have begun living with this backward count of saying; how long can I feel this way? Well, how long can things continue along this path? It’s a matter of time before losses make themselves more known and unavoidable. Well, what do I do about that? I think mostly I just have to keep steady where I am and do the work with Christian over the next two, three, four, five, however many days I can squeeze out before illness and pain push me beyond the boundaries of being able to do what I want to do. 

These thoughts are starting to intrude a bit because it starts to feel unreal to be here and to feel so well. In fact, of course, I don’t feel well underneath the medication. My body is very sick and I’m being spared a lot of suffering by some very good medical practice. The truth is that I’m in deep shit. I’m in trouble here in this chair where I record these words. 

If someone were to simply walk away with the little pump that keeps me in such good equilibrium, everything would be gone. Everything would have been taken from me. I have to remember that, right? That this medicine is keeping me in this beautiful place, helping to keep me here as myself. These thoughts are intruders, intruders that can disrupt the peace I feel. I’ve come to realize that this peace is the only gift I want to give to the people around me. Perhaps that’s how I should frame things from now on; not being so focused on what might be taken away, simply living every heartbeat of my present condition. And feeling gratitude. 

I am trying to put into words this jump from living with pain and loss, to living one of the most wondrous things I’ve ever experienced in my whole life. With this very last blog I hope to share with you whatever insight I’ve gleaned from this experience in palliative care.

In this building you know you are accompanied. There are other people making this journey parallel to yours. But it’s private. Our doors can stay open or our doors can close. We can ask for either, and it will be respected. But even though we know that we’re not alone, we’re basically all moving through time in this house, in this home, in a way that we’ve never done before. I’d love to try to explain to you how changed I am by my living here and how unfathomable it is to me that this should have happened almost instantly and so easily. One moment I was in our house and everything was painful, not from a care point of view, but just from the situation. And the next moment that was over. I say it over and over because I don’t remember how, I don’t know how that happened. I do in a basic sort of way, yes, getting meds straightened out and putting people into palliative medicine. I understand that. But so much more has happened to me. And I’d like to share it with you. I think it’s important.

Taken by Francis Séguin.

Falling

How exactly did I end up in palliative care? Well, about a month ago now, I was going up the stairs to my bedroom, and my left leg just gave out under me. I fell backwards down the stairs and hit the floor like a bag of bricks. After a trip in the back of an ambulance, and a night in the Valleyfield Hospital Emergency Room, I was told I had fractured my collarbone.

Though painful, and unlikely to ever heal, the broken collarbone was an almost incidental development. What wasn’t incidental was being presented with the fact that I couldn’t live at home anymore, that I was palliative. It was too much, and too difficult to transform the house into something where I would feel safe. I also realized that it wasn’t fair for me to put Simon (and Cindy) through the stresses of what could happen to me every time I tried to get up from my bed, or from a chair, or from the toilet. 

My whole existence has been pain management for the last couple of months, going from the sofa in the living room, to my bed, and back to the sofa. And that was enough. Without any of the details, most of which were unpleasant and took place in an overwhelmed hospital, I wound up here back in Hudson, back home, except not my home with Simon and Cindy, but my new home in palliative care, at the center. 

I don’t remember how I arrived at the Palliative Care Center. I don’t remember if it was in a car or in an ambulance. I don’t remember the day. I don’t remember the weather. I don’t remember what I was wearing.

I have no memory of not being at my house or leaving our house to come here, which is just a few minutes down the road. My sons would tell me easily how it happened and how I was. But it’s all a blur to me. What matters was arriving here in palliative care, in this beautiful little town of Hudson. In a building hidden behind trees and making itself quite discreet despite its size. And everything begins here. A new roof. I seem to have fallen out of time. 

Losses

If you’ve been following this blog for any time, you’ve, of course, realized that what I’m talking about is a series of losses. Some of them I’m experiencing because of cancer, but not just because of cancer, because of cancer treatment, because of an experimental treatment forcing me into a stricter scientific environment. This meant rarely deviating from the path that Bristol Myers Squibb—the sponsor—wanted me to follow. The latter became increasingly difficult as the years went by, just as the losses have also been incremental and devastating in their own right. Ever since then I’ve been followed by a moon shadow. The first loss has been the inability to live outside of pain. The tumor in my rectum has been causing, very serious, very debilitating pain. There was a question of me returning for radiation treatment on the fourth basement of the CHUM. And I did go.

All of this happened at the same time as the accident, the fall that eventually led me here. If you look at losses, well, some of the most painful ones have not been loss of mobility or those kinds of things, although they’ve been terrible. Not being able to help, and not being able to be a full person in this house with the people I love who could have for years and years and years counted on me to be there when they needed my help. 

The first loss was my vision. As I speak to you, I’m blind in the right eye, and my left has developed some serious issues. The result of all this is that I can no longer sit in front of my computer and write, or read. That I can’t read should’ve been torture for me, but because it happened gradually, I was able to adjust to it as it happened with the help of audiobooks. But not being able to read, specifically reading over my own writing has meant that I can’t write, or make notes. My good eye fatigues and I can never see my laptop screen properly. The kind of “writing” that I can do is by recording my voice on my phone, and relying on Christian to transcribe it for me. This is what I’m reduced to. That and also reduced to a very porous memory and a lot of difficulty keeping things very clear in my head. It’s a little more like Swiss cheese. The dreaded “chemo brain”, has evolved into “end of life pain management brain”. And so here I am trying to finish the blog, the final blog of this journey and having been robbed of most of the tools to do so.

This same cocktail of drugs that goes into me also has the effect of making me feel sleepier. Its delivery mechanism is ingenious, though. It’s just this little box that we put in a pouch, and this little box has a syringe in it that sends little shots of medicine into me every 10-12 minutes or so. I want you to know, to understand how many obstacles we’re trying to get over and around to get to the end of the story. Loss of eyesight, loss of the ability to write, loss of the ability to read and then mobility. Right now, I can still walk but I can’t get out of a chair by myself. I have to call and ask for help so that I don’t hurt myself. All of these things are more serious to me than any other loss. 

Taken by Francis Séguin.

Nests

When people come into my room for the first time, whether it’s staff, whether it’s a mistake, whether it’s family or some kind of outside support, everyone reacts the same, which is that they let out, “Oh, my God! What a beautiful room!” At first, I thought, it had everything to do with the dozens of beautiful bouquets, and the collection of potted plants that I’ve received from friends, family, and even people I’ve never met before in person. And it’s true that people were struck by the flowers, by the color and the fact that it didn’t smell like that sort of cloying flower water that needs to be changed, but that isn’t the whole story. It was very subtle and lovely. 

As time has gone by, the room has been decorated more and more by my sister Danielle, by Penelope and Graham, by everyone and anyone. Now, no matter which wall you look on, there’s something beautiful to see. My grandson, Graeme, must have spent a whole afternoon on a Sunday or Saturday creating a poster with all kinds of pictures of the times that we spent together, the three of us, and of course, all the other people they love. But the three of us, which means a lot to me. It’s important to mention that this feeling of walking into this room and everyone feels it’s warmth and everyone feels what a good place it is, thanks to the thoughtfulness of my sons, my grandchildren, my beautiful and talented daughters-in-law Anne and Vickie.

It’s a beautiful spot. It’s a beautiful nest. And I’m very lucky that at this time of year the birds sing right next to me through the beautiful bow window in my room. They are busy making families of their own. My own family is already made, and has been made for quite a long time, and is rich, and is deep, and, for a while longer I’m very happy to say, is mine. I can’t have more than four visitors in my nest at the same time, but I think that arithmetic applies to a lot of the birds outside too.

Tears

Tears have a different meaning for me now. They‘re often filled with a sudden and strong emotion—which rarely carries with it sadness. 

It’s almost always beautiful or a little overwhelming: something more that my mind has brought up to the surface. All of a sudden, I get this lump or perhaps a cheeriness and something bigger than both. And I just hope that the people around me understand what it isn’t, and why I reach out to it all with such awe; with such eagerness.

There was one night, it was about two in the morning, I think, and I had woken. There’s a nurse here named Francis. If I say Francis, it sounds like a woman’s name, but Francis is very much a masculine French name. And he’s very young.

He’s twenty-three, which means that he was sent straight out from a CEGEP (from his college training). He got right smack into COVID in the worst possible circumstances because it would have been three years ago. Eventually, he worked his way back here to palliative care, where he’s extremely happy. He’s shy—as I was that evening—reserved and unassuming and speaks in a way that’s very soft, humble and quiet. 

That night, he happened to come in when I had just started to cry. So, there I was, alone in the dark in my bed with sniffles and tears coming down my face. When he walked in, I thought oh, gosh, he’s going to see something that, first of all, I wasn’t particularly wanting witnessed, but secondly because, and I can’t explain it really, it just felt good to cry. These were strong emotions, a shedding feeling that came up and woke me out of my sleep. He had come in and he stood there and said:

I’ll say it first in French, “Vous savez Madame, des fois c’est juste une pensée qui nous fait pleurer… “ which translates to “You know, Madame, sometimes it’s just a thought that turns into tears like this.”

It was exactly right. He was exactly in the moment. Without saying anything more, he left the room. 

This is an example of what it’s like to be here—the freedom to be. 

Sunsets

            This is the end of my story. The final chapter of my life. I am sixty-three years old. Two months away from my sixty-fourth birthday, and another year away from officially being a senior citizen. And you know what, that’s not too bad, isn’t it? 

            Here’s what I know: If you don’t get knocked off were the real is, where the true is, and where the love is, then you’re going to have a good life. Even if you suffer, even if you’re sick, even if you have pain, you’re going to have a good life. 

I want you to know, every day that I’m alive, I’m super happy to be alive. 

This happiness is not making me say “Fuck, fuck, fuck, I don’t want to let go.” That’s something. That’s a short time. Yes, I started in 2018—that helped—but four years ago I wasn’t anywhere near being where I am today. 

So you can know, rest at ease, that I will have lived and died happy and at peace.

I love you. 

Taken by Francis Séguin.

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

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

 

 

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

 

SECOND SKIN

“…the human being to lack that second skin we call egoism has not yet been born, it lasts much longer than the other one, that bleeds so readily.”
― José Saramago, Blindness

Robertson, Carol; Second Skin; Bodelwyddan Castle Trust; http://www.artuk.org/artworks/second-skin-178299

 

I’ve arrived at a place of discomfort.

Every day I’ve lived since last July has in some way been about me getting through the day, getting to tomorrow, and then the next day; and by extension, everyone around me has been caught up in helping me get through to a future beyond now, beyond this week, or this month, or year…

Making good meals for me when I’m useless (an all too frequent occurrence); shuffling schedules so that I’m not alone at chemo; remaining open and patient with me when my filters break down and I’m whimpery, and discouraged; adjusting their lives around my needs…These are just some of the things that my sons (especially), wonderful friends and family do for me every day.

How self-centred I have become.
Forced into it to some extent, perhaps, but indulging myself too.

And all of these words I’ve poured out to you—more than 35 000 so far—have they not principally been about me highlighting me?

Higgins, Tony; Skin Deep; University of Stirling; http://www.artuk.org/artworks/skin-deep-127895

While my own skin is showing the battle scars of cancer treatment, a second, invisible one is slowly enveloping me. It’s the skin of self-centredness. At least, this is an apprehension of mine that’s been there from the very beginning of this unchosen journey.

In part, I think, this withdrawal into myself is a survival mechanism. I’m not sure how much I can do. I’m not sure what will happen to me. I’m not sure what it means when I suddenly have no energy and my legs start to shake beneath me, or tears pour from my eyes as easily as I breathe. Self-absorption, my second skin, is in part controlling the flow of what life demands of me. But still… It has made it all too easy to hide away in the two-week (one in chemo, one off) life cycle that I live inside.

***

Last week was spring break for my grandchildren: Penelope, now 7, from grade school, and Graeme, who turns 5 in April, from pre-school. It was study week at John Abbott College, so Simon had more free time to enjoy (though he still had tests and lab reports to mark and things to write), and I was not in a chemo week. Jeremy  was away on business in Hong Kong and Japan, leaving behind an unfillable gap in his young family, in spite of the fact that Anne is an extraordinary life partner and mother. For Christian, unfortunately, it was business as usual: work –work—work—work.

This created an opening. They were home! Anne was happy to have company and support. And so, she and Simon busied themselves making plans to fill the days with activities the kids could look forward to.

Early in the week, we would go play with them all day at their house. Then, on a different day, we would take them to the movies. Next, they would come to our house in Hudson and play all day (from 8 am to 7 pm!). Finally, upon their papa’s return from Japan, we would go celebrate Penelope’s birthday over pizza at a local restaurant.

Our love for Penelope, Graeme and their parents is such that just being near them makes us feel happier. And yet, I see how I have pulled away from them since my diagnosis. Or maybe it’s truer to say that circumstances have made it hard to be with them the way I used to—circumstances which include my cancer and treatment, but also the simple fact that they are both at school and have busy, happy lives and a full calendar, which doesn’t always match up well with my physical highs and lows.

It’s been as though an invisible chord snapped when I learned how sick I was. They say that dogs can smell cancer in a person; I wondered if perhaps young children have a similar sensitivity to things that are going wrong. I didn’t want Penelope and Graeme to sense this…decay when they were around me, and I was feeling so changed and so damaged.

unknown artist; Old Lady with Two Children; Bradford Museums and Galleries; http://www.artuk.org/artworks/old-lady-with-two-children-22343

Last week, I played with my grandchildren with pure joy—something I  hadn’t done for weeks and weeks, because these experiences opened up a melancholy spot inside me: the whisperings of uselessness; of being superfluous and unable to follow the stream of their lives (while everyone else entered and exited their daily existence so effortlessly). I’m speaking of the loss of the kind of intimacy one can create with children that is tender and trusting and of such honesty that it replenishes the soul and reminds us of a different world—a minute by minute world—in which all good things are possible.

On the day they came to play at our house, for some weird and frustrating reason, I was exhausted and having trouble keeping my eyes open, almost from the time I woke up. It was as though magnets were pulling my eyelids shut. This has never happened to me before and all I could think of was going to take a short nap—maybe that would snap me out of it!? But Graeme was by my side, wanting to play and do all of the fun things that are possible here, and I would have been mortified to disappoint him, and so I reverted to closing my eyes for a few seconds at a time–taking the sneakiest, shortest micro-naps every chance I got. And at the end of one of them, there was Graeme, staring at me intently with the most accepting smile (given the circumstances), saying: “It’s okay, Grand-maman, it’s just your sickness.”

 ***

The love and well wishes that have rained down on me since last July, and especially because of this blog, have been a daily source of strength and inspiration for me. I cannot overstate this. Maybe it’s the magnitude of it that has alerted me to my unworthiness. It is love overwhelming. It is kindness and support beyond reason.

Thank you.

Thank you.

 My life depends on the willingness of my loved ones to do all of the thankless, repetitive and life-invading tasks that cancer throws in their path.

What can I do besides accept their love and attempt to return it to them in gratitude whenever I can, and understand that we are all called to love in every way possible?

Making amends…Making it up to them…

These turns of phrase that come to mind imply indebtedness. If their love has left me in debt, then I may not live long enough to repay each and every one of them.

Still, a way to lighten the weight of my second skin must surely be found in being kinder and more forgiving of every perceived wrong, no matter who it involves; being generous of heart and letting go of past slights and hurts; practicing more empathy every day, so as not to forget those dark moments that I am responsible for; and being more open to accepting love that I may never be able to return in equal measure.

It’s a wonderful feeling to owe one’s life to so many.

The Evening of all Days, the Day of all Evenings by Anselm Kiefer, 2014

MY INCREDIBLE EXPANDING LIFE

No one tells you this, but a human life, just like the universe that cradles it, is always expanding.

One of the ways we experience this extension first hand is through the social connections we make. My teaching life has accelerated this, and in the past ten years or so, I’ve come to know so many people that I could and want to call friends; people I don’t want to lose…not wanting the flow of time to sweep them away, beyond my reach.

Last week, my student Mira reached out and pulled me into her life.

In late 2016, Mira left Toronto to come live close to her daughter and grandchildren. In our quiet conversations after class, she had mentioned having just found her new place, which she described in such ecstatic, giddy language that it seemed unreal. She said it was beautiful, surrounded by woods and birds; that her new neighbours were wonderful; that they planted flowers and perennials at the foot of the trees for everyone to enjoy; that she had found a haven. That she was immensely grateful and happy.

And then she invited me to dinner. Her home was exactly as she had described. Sitting on her patio that’s enclosed by a screened gazebo, we listened to the sounds of the birds and the breeze and of a piano tuner next door, who arrived not long after me. As he worked, he played. Beautifully. Every note bouncing off the sparkling light of approaching dusk.

Everything about our evening together was enveloping. Despite a long day at work, Mira had put together a bounteous meal that left me speechless (because I was at a loss for words and because my mouth was always full).

 

I felt like a funambulist in our first hour together, trying to find my way from the interactive dynamics of being Mira’s teacher to being her friend. It’s a subtle thing, because of course in adult education, we’re equals who are simply playing different roles. And yet all my teacherly reflexes were there: asking questions, steering the conversation and adjusting my language (we were speaking English, Mira’s third language after Ukrainian and Russian—French is her newest challenge).

I’ve spoken elsewhere of the pain of letting go of my students at the end of my teaching contracts. The obverse of this requires a different kind of energy and thoughtfulness.

We all know this. We learn it as we move through time, shedding friends and making new ones in grade school and high school; opening our lives to new colleagues as we enter adulthood; merging the social circles of people we love with our own.

This pulsating movement continues for decades. Our neighbours become friends and through our children and all of their involvements, new people enter our lives constantly. There’s always the possibility of friendship and attachment, but there also comes the moment when we realise that it isn’t possible to maintain each connection—that there just isn’t enough emotional energy to go around.

Every time I choose to stay in touch with a former student, I think of this and have to take it into account. I’ve sent and received many enthusiastic Facebook messages to and from former students expressing the wish that we see each other again: “We should have coffee!” “We have to meet!” “Are you free in March?”.

The desire is sincere. There’s only good will. But of course, it can’t always work out, and so I/we settle for whatever time we manage to carve out of our overstuffed lives.

It’s enough, because it has to be. It has meant breakfast with Patty and supper with Karen. It has meant an evening at the pub with Kathryn and my best friend Louise who joined us so that Kathryn could get some serious French conversation practice (there could and should have been so many more such evenings—sigh).

It has meant the unexpected joy of finding emails from Will, then Yan in my Inbox; both engineers, one a British bachelor and the second, a devoted father of three, catching me up about their lives.

One time, it was coffee at Tim Horton’s late in the afternoon with Neshat and Maryam, while their children emitted happy sparks of mischief at the next table. There was phlegmatic Thomas, fresh out of university and a long way from home; elegant and thoughtful Saran, a kindred spirit who has officially joined our Best of the Worst soirées, and there was exuberant, endearing Hatem, whom I met at his five-year-old daughter’s school, where he had joined the French for Parents class I was teaching. Though he was with me for just a few weeks before finding work, he still sends me email updates that are a study in gratitude–he gives thanks for every part of his new life–and an inspiration.

And there’s Facebook, Facebook, Facebook, and its limitless tentacles, for which I’m so grateful.

Mira at home

But Mira isn’t on Facebook. She simply cut through all of the potential barriers to friendship with her extraordinary emotional energy.

Mira’s brilliant: she’s an engineer who specialises in systems, processes, efficiency and ergonomics. One way of understanding her profession is that she has a talent for observing people and their systems and seeing all of the ways these aren’t working properly. She connects people by removing obstacles that hinder functionality and their ability to work well together. Things flow better when she’s around.

Our shared meal in her new condo provided the setting for a long heart-to-heart. In French class, I had witnessed Mira’s brilliance, competence and will, and caught a glimpse of her creativity—she’s a talented painter—but in her new home, where she claims to have found, at last, a space to simply be herself—woman, mother, Baba (grandmother), artist and engineer—she radiates gentleness and incandescent plenitude.

Speaking of her grandfather (Mira was an only child), with her soft voice and Slavic accent, she told me: “When I was small child and sat in his arms, he would stop breathing, he loved me so much. Everyone give me so much love”.

Except that she pronounces it “law-ve”, which sounds even more beautiful.

“The universe is full of doors.”—Frank Herbert, Dune

Painting by Mira