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.

ABOUT RANA

PART OF THE THIS IS THE MOMENT SERIES

May 30th 2019

The results of my latest CT-Scan came in a few weeks ago, and they remain favourable.

Nicolas Martin, (b.1980), “Woman Sitting on her bed”

Once again, there are no new tumours and no growth of the existing tumours. Just like the two previous scans.

The CT-Scans give my life in treatment its rhythm. Every eight weeks marks a beat. Between the scans, if I’m feeling good, I do, on occasion, observe my mind escaping into flights of fancy, allowing me to experience surges of optimism; tiny glimmers of hope that work their way through the cracks in my defences, whispering indulgent thoughts like: Maybe this will last for years…Maybe the tumours will remain dormant…

 These thoughts float just a little while, and I hold on to them because it feels good to experience buoyancy and light-heartedness. Just a little while.

And then another part of me shuts that down…but not before anxiety slithers in. Why would this happen to you? Why, when so many others experience the despair of treatment that isn’t working?

Over and over, every eight weeks, I go up, then down, then fall into something between hope and resignation.

I’ve begun to realize, too, that I am, in fact, living inside a very specific countdown. It’s a two –year countdown, and I’m now down to 15 months remaining. That’s the duration of the research protocol (clinical trial) I’ve signed on for. It hit me a little while ago that every month that goes by, every CT-Scan cycle, inches me closer to the end of the trial and its expensive immunotherapy drugs.

And then what will happen to me? The doctors tell me that my results are uncharted territory for them. That they have not seen what they’re seeing with my body’s responses in previous stage 4 patients with my type of cancer, and feel confident that it’s the immune drugs at work. This strange stasis that my body is in…How long will it last? And how long can a person stay on medications that aren’t meant to be taken forever (and cannot, because my life is simply not worth that much health-care money)?

Jean-Michel Melat-Couhet, “Swept by the Wind”

I go up and down like this all the time. It reminds me that the word disease means DIS-EASE. I am uneasy inside my skin. I am not myself. I am besieged. And, as every person with a serious illness knows, this is simply the way it is, and I must keep finding ways to adapt and deal with it. And remember how fortunate I am.

* * *

I’m sorry for my tone. I received news yesterday that weighs heavily upon my heart.

I was scrolling through Facebook and suddenly, there was the radiant face of a woman I knew. It was Rana. The Facebook notice stated that she died two days ago.

Let me explain.

Rana was my French student four years ago. Born in Lebanon, she had lived many years in Kuwait before arriving in Canada and eventually Montreal. She was the mother of a beautiful girl who is now a teenager. She had a PhD in something related to nuclear pharmacology. She was an artist: a jeweler who also created works in which she combined painting, fabric and her jewelry pieces.  She was a deeply spiritual person.

She was extraordinary. The company where she worked and where I taught French several years was very demanding of its staff, and so it happened once or twice that she was the only person in her group who was able to make it to class—which turned the latter into a private tutorial or, in our case, an hour and a half of one-on-one French conversation.

This is how I grew to know her quickly. In French, we would have said that we had des atômes crochus, a pretty expression that means that we instantly hit it off, that we spoke the same language (no matter what language each of us was using).

And then the contract ended, and I didn’t return to her company. But we remained in contact, on Facebook, and managed a lunch together one summer day. It was on that day that I realized just how beautiful a human being she was. Her life was not free of stress and problems. There was a scarring divorce that festered over child custody issues, and she had just moved into a new condo with her daughter. But Rana seemed to rise above the muck and remain just, true and decent. And always loving. It was also at that lunch that we discussed all of the things that lit us up; our shared view of life—its expansiveness, endless promise, and limitless possibilities to grow and love. We parted that day promising to make these meetings happen more often. We stayed in touch on Facebook.

Jon Naar, “Shadows of Children on Swings”, Munich 1963

But I never saw her again.

Yesterday, right after learning the world had lost her, I went back to Facebook to try to collect our years-worth of exchanges on Messenger, but her site had already been cleaned up and emptied out, and a new page, with a beautiful photo of her, opened recently, in preparation for her death, I suppose.

I left a message of condolences on her new Facebook page which is being curated by her cousin, I think. And then I sat with Rana here, alone, for a long while.

Rana succumbed to a cancer that had already ravaged her lungs and bones when it was diagnosed. I wish I could remember how long ago, but it was at least two and a half years. She had gone to the hospital with unbearable neck pain, and found out that a vertebra had collapsed because of a tumour growing there, that her tumorous femur was in danger of being crushed under her weight as well, and that her lungs were full of cancer.

I found all of this out after simply messaging her one evening—just to catch up on things. We immediately switched to our phones. From her hospital bed in Montreal’s Jewish General, she told me everything she was going through. I remember that her voice was full of energy. Her scientific-medical literacy made it possible for her to approach her situation calmly and analytically. She trusted in modern medicine. She trusted that she would receive good care, and that her pain would be managed. She believed her situation would improve.

I was careful about what I asked her and how I phrased things. I tried to match her energy and tone. We made plans to get together when she was well enough to leave the hospital.

Clyde Aspevig (b.1961)
“The Evening Still…”

We never did get together.
I was diagnosed and I think, meanwhile, she was beginning to fail rapidly.

She’s gone now.

Yesterday, after leaving my message on her Facebook page (which was filling up with wishes and expressions of love and sympathy), I didn’t cry. Not right away. It wasn’t, it isn’t what Rana was about. Rana is at peace. I know this. And she is everywhere. She was so loved.

Later though, the weight of Rana’s death grew heavier and heavier and I knew that as soon as I said out loud: “My friend Rana died”, that I would not be able to hold back my tears. Simon was the first to arrive, and I told him, and then, once he’d held me and spoken kind words to me, I spent a while in the kitchen, preparing supper and sniffling. And I was with Rana in spirit.

At bedtime, a second wave of tears hit, and this time they flooded me. My mind was stuck, wondering what her last weeks and days had been like.

Rana. I know she bared it all with dignity. I know that she smiled too, when she could, because I feel sure she believed that she would be united with her mother and others she had lost in her lifetime.

I don’t think she made it to the age of fifty. A beautiful branch has broken away from the tree of life.

When things get hard, in months or years to come, I will seek inspiration from Rana who was light and life and love.

Photo by Ashley
Photo by Ashley Perreault

 

FOR THE SAKE OF SURVIVAL

Part of the THIS IS THE MOMENT series

May 1st, 2019

I suppose that today, of all days, it’s appropriate for me to scream May Day! May Day!

It wouldn’t help my situation, or make any difference though, would it?

I started chemo in late August 2018, which means that I’ve just entered month number 9 of chemotherapy (these days, “treatment” feels too much like a euphemism).

Yesterday, I went to have my 4th CT-Scan done at the CHUM (including the original diagnostic scan). Since I began chemo, I’ve had a CT-Scan every eight weeks—a requirement of this clinical trial. By that count, I’ve passed 32 weeks of being poisoned for the sake of survival.

Yesterday started off just after lunchtime in such a weird and inauspicious way. With my scan scheduled for 3 pm, I planned to go first to the hospital’s open eating area on the first floor, where I’ve spent hours this year, waiting for whatever was next. It’s a vast, windowed, very bright space with dozens of tables where people sit—including many hospital staff—to eat and unwind.

This time, however, before I had even reached the escalator landing, I could see that there was something crowding everyone (they all seemed bunched up) and creating shadow. When I reached the top at last, I was met by an 8-foot high, 25-foot-long puffy pink tube, with lumps and bumps here and there on its surface. This was the monstrosity that was responsible for making seating far scarcer than it should be. When I walked further into the hall and found a spot to sit (I shared a table with a nurse who was on her lunch break), I realized that the big pink tube was a shadowy tunnel that people were visiting. But what I felt when I read the signage in front of it…

It was a giant section of intestine, made to be strolled through. It was there to educate hospital staff and visitors about colorectal cancer.

Fuck. Really? (That IS what I thought) I mean…really? It was hard to see it as humorous. It felt more…ominous. As mental preparations for a colorectal cancer CT-Scan go, this was truly awful. And definitely unwelcome. And I didn’t visit it! There seemed no need to go see tumours and polyps up close and Godzilla-size.

Thrown off somewhat, I ate quickly and then went up to the 14th floor for a blood test that’s now required by Bristol- Myers Squibb before each scan: a simple embryonic enzyme test, which, I think, measures tumoural activity (my results have so far been good, dropping steadily, which is what the oncologists want to see).

My univein !

The only good, fat surface vein I have for blood tests is on my left arm. Just the one. There simply isn’t anything visible to work with near the surface of my right arm. This, as time goes by, will become a problem. My poor univein is beginning to harden, though up to now, the CHUM’s phlebotomists (drawing blood is an art!) say that it still has bounce (they say: Elle est encore rebondissante!”). But, because I knew that a catheter would be inserted into my champion vein for the Ct-Scan, I asked the nurse if he could perhaps use a vein on the surface of my right arm, one that Chantal, my research nurse and guardian angel, told me was big enough. He opted instead for a vein on my right hand. With his magic hands and a tiny needle, he managed to get what he needed. It was only when I entered the Tomodensitométrie area (in English, that translates as “computed tomography” or CT), that I felt pain and throbbing in my right hand. When the nurse installing the catheter in my left arm (in my plucky univein) saw my sore hand, she said: “Il vous a rupturé ça pas à peu près!” which translates to something like: “Whoa! He blew that one up good!”

There I was, back in an area I’ve written about previously, wearing a hospital gown, and not much else except my shoes and socks, in the company of close to a dozen others adults who looked about as attractive and gloomy as me.

But this, of course, is where it all gets so serious. And it’s when the culture clash between the worlds of medical professionals and the people they call patients is so clear to me. It must be hard to lead with your heart when the patients who stream through your department all look alike: gowned and pale, their education, work life and personal histories unrevealed. They, the medical staff, are so comfortable in their working environment and we, the patients, are anxious, and diminished, and longing to get out and go home. And the technicians who operate the super-high-tech diagnostic equipment are generally kind and polite and concerned that we fare well while inside the giant, noisy scanners and imaging machines, and tolerate the claustrophobia and the chemicals injected into us, while we lie there terrified of what these machines will tell the radiologist who will decode their data…

Yesterday, I sat waiting, in my gown, between a fifty-something man and an older, heavier woman, who gave off signals of wanting to be left alone inside her bubble. The man seemed content to sit in silence too. It makes so much sense: aside from each person’s disease or reason for being there, what is there to talk about? Apprehension was the elephant in the room and it was visible to each of us.

And then, the first woman was taken to her test, and another woman, younger (perhaps in her late forties), sat down beside me. We didn’t get to speak for long, because I was soon called, but in the brief time we had, I mentioned to her that I could see that this wasn’t her first scan, because she was sporting the same regrowth of grey-white hair that I was— though hers was shorter than mine. I just wanted her to know that I saw her as a sister-patient, that she had all my empathy.

Then she said: “And I’m going to lose it all again. My treatment isn’t working. It isn’t working And I have to start chemo again.”

It was such a heavy, meaningful, ominous thing to say, and as she spoke, there was still the trace of the smile that her face was meant to wear and that might otherwise come so easily to her…

My name had been called. What could I say? All I could manage was (in French): “We’ll see each other again here, with our beautiful pink complexions…” and then I was led off to the CT-Scan area.

What will her scan show? What will mine?

I should have taken her in my arms and just held her.

Carson, Rosemary; Patients Waiting to See the Doctor, with Figures Representing Their Fears; Wellcome Library; http://www.artuk.org/artworks/patients-waiting-to-see-the-doctor-with-figures-representing-their-fears-125800

 

 

 

 

 

FILTER-LESS

Part of the THIS IS THE MOMENT series.

Thursday, April 18th 2019

On Tuesday, April 15th, Notre-Dame de Paris, one of France’s greatest buildings and symbols, burned.

As is always the case in the 21st century, it was a catastrophic event that virtually everyone, everywhere, could watch. A disaster witnessed by human eyes on a planetary scale.

Human responses to its destruction by flame varied, people fitting the images being transmitted by every means possible to them into the critical context that made sense in their reality, whether it was religious, spiritual, political, cultural, economic, aesthetic…

I found it very hard to watch as the flames tore at the building, devouring it; billowing out, fed by the combustibles within and the oxygen provided by the ambient air. I wasn’t able to watch those scenes for very long. Something truly awful was happening in Paris, again, and for an instant, my thoughts veered to the possibility that this was one more nightmarish terrorist action, but they didn’t last. The day may come when extraordinary gathering places like the Dome of the Rock, or Hagia Sophia, or Notre-Dame de Paris fall to the same impulses that are tearing humans apart in the early 21st century, but surely, we’re not there yet.

It appears that, at least in the case of Notre-Dame de Paris, we were not.

I guess that by now, you’re taken aback by this post. What can this event possibly have to do with the very small, personal story of living with cancer that I’ve been telling, bit by bit and week by week, for the past 9 months, at this blog?

The impulse to write to you this time comes from a memory that was evoked as I watched the beautiful old cathedral suffering so much damage.

I’m not a traveler. I haven’t seen very much of the world with my own eyes. But I have seen all of Canada’s provinces except for Newfoundland (I’d love to correct that) and the territories to the north; and I’ve seen large swaths of the United States. I’ve also been to England (in the summer of 2015), and France (in the summer of 2012), each time, to visit one of my sons.

While in France, Simon, my friend Louise and I were based in Montpellier, where Simon was doing post-doctoral research. We branched out to Carcassonne, and also made sure to set aside three or four days to see some of Paris. I think we may have been a bit unlucky because we hit a heat wave, with temperatures between 31-34 Celsius that made almost everything exhausting and unpleasant (we spent most of our visit to the Louvre in the basement, trying not to pass out).

Then came the day we set off, on foot, to l’Île de la Cité, in the centre of Paris, on which Notre-Dame de Paris was built. It was the tourist season. There were crowds everywhere. The lineup to visit the cathedral had been forming for hours, the  long, serpentine gatherings of people stood right out in the baking sun, waiting, so we decided to begin our day by visiting the adjacent attraction, which was a guided exploration of the catacombs that run under the Cathedral grounds. We were so happy to find ourselves out of the sun and hidden away underground, where it was cool and quieter.

We emerged refreshed and ready to join the lineup for the cathedral itself. It seemed to move much faster than we had imagined and soon, we stepped out of the heat and into the fresher, darker atmosphere of Notre-Dame.

I had no expectations going in. None. It was packed. There were people everywhere, bunched together, moving around with no sense of place or of decorum. They were probably just happy to finally have something to do and see. It was all so strangely anti-climactic.

And then, moving further in, I looked up.

To the vaulted ceiling which my eyes followed up and up to the roof; to the rows and rows of breathtaking arches, so beautiful, so impossible…

And I started to cry. Not just a few wet sniffles. I was overtaken by emotion so intense and so full that all I could do was cry and cry and cry. The tears spilled out of me. As I continued through the building, pushed along by people, I felt utterly filter-less. Defenseless. What did I feel? What was this emotional spillover all about?

I remember looking at the vaults and thinking of the people who had built them, painstakingly, at tremendous personal cost. Hundreds and hundreds of lives over centuries. Generation upon generation, dedicated to a single purpose, day after day. The vaulted ceiling was so beautiful. There was such presence there.

While I no longer adhere to any specific religion, I am a spiritual person and I think that I was also responding to the presence of the numinous in that space.

I don’t know what the human soul is, or whether it exists, but I know that on that day at Notre-Dame de Paris, I was immersed in emotion that I can only call soulful.

What caught me most off guard on Tuesday, when the images of the fire began flooding the internet, was the remembrance of that outpouring of tears on that day in 2012, and the recognition that moments like this have been part of my life over and over since my cancer diagnosis.

Adams, Alicia Melamed; Tears; Ben Uri Gallery & Museum; http://www.artuk.org/artworks/tears-191484

You see, one of the side effects of my new life with cancer is the sudden and surprising outpouring of tears and the constriction of my face and chest that accompany them. This has been happening to me from almost the very beginning. But they’re rarely tears of sadness, though I have those too. No, these tears are just like my Notre-Dame tears. They’re released unpredictably and they’re difficult to stop. I’m almost always with someone, in a conversation that, for whatever reason, veers to something small, or perhaps more substantive, that is just honest; true; real; and which becomes connected—even if only in me— to the ephemerality of my situation, to the essential nature of human life, to the deepest roots of love. It happens while I’m speaking. I just seem to melt into tears.

Most of my entourage knows that I’m fine. I say that I’m not sad, but that I simply have no more filters. I tell them that I realise that there’s no point trying to bury my tears. I can’t. They just flow, and seem to do so only when conversation has reached a soulful place. Even if the exchange is about someone else, my filters can fail. The membrane that separates me from a river of emotions is foundering.

These moments are like my experience inside Notre-Dame de Paris. They’re moments when all of the fear, compassion, pain, worry, joy, wonder, gratitude and love are flowing one into the other, and I am overwhelmed.

Why hold them back? My life has come to this. To times when what I’m feeling is the essence of my existence. I think my tears appear when words are insufficient.

They feel GOOD.

Conroy, Stephen; The Garden; The Fleming Collection; http://www.artuk.org/artworks/the-garden-218248

 

 

 

 

 

 

 

 

 

AWAY FROM AND TOWARDS

Part of the THIS IS THE MOMENT series.

Monday, April 15th 2019

Spring has sprung a leak here, in Hudson, but no one’s complaining because winter has been chased away. The ground around the house is covered in a thin, tired old layer of dirty, disintegrating snow covered in old leaves and small twigs and branches from the trees (I suppose this is what pine detritus looks like—maples just wallop everything around them with large, heavy old branches that break free as they succumb to age and the damage done).

After a beautiful sunny and warm Sunday, Monday has brought rain. But I have Christian here for the day—for the next three days, in fact—and that brightens everything. And I need some of that light and lightness of heart.

I cried myself to sleep last night, or tried to, but wore out my eyes with all the tears and made the astonishing discovery that the rivulets of tears were so full of healthy materials that when I stopped and picked up a book, I could see everything clearly. EVERYTHING. Eight and a half months of chemo’s ophthalmic side effects washed away (they have, of course, returned this morning, and my vision is as goopy and inadequate as usual).

I had the blues. A somewhat mild but pervasive case of them. Their sadness has been niggling me for days. It’s been more than nine months since we moved in here, and the same amount of time since I’ve been living with the knowledge of my cancer. I’m now seasoned in the dynamics of such a life.

We’ve all heard of “two steps forward and one step back”, and while this semi-optimistic description of hard-won, slow progress resonates, it doesn’t capture life with cancer, or, to be more precise, the mind’s meandering assimilation of the reality of it.

I’ve come to see my efforts to live with cancer as a self-erasing pattern of advance and retreat, and it’s getting to me. I want to try to describe it to you. It’s of such importance, this thing I’m trying to figure out.

Thomas, Philippa Mary; Mrs Alington; Great Bardfield Historical Society; http://www.artuk.org/artworks/mrs-alington-2686

In the first place, in my mind, cancer is OF ME, but it’s also NOT ME. It’s separate from the person I am, the one who lives inside this skull and body. I AM NOT MY CANCER; and if this is so, then my task is to learn to co-exist with it. To be with it, as serenely as possible, to know it’s there, but also, to move away from it, in a constant, repeated ebb and flow, a forward and backing away movement, that allows my conscious mind to distance myself from it, so that I can live outside the uncertainty that it has splashed all over my life: so that I can find respite from the sadness and pain of imminent loss that darkens everything if I let it; so that sometimes, I can think and feel beyond the aches, pains, and alterations of my body that complicate my days and mess with my morale, isolating me from the joy of life and of being with others.

Cancer pulls and repels me ad infinitum, and this tide-like dynamic isn’t about progress. In some ways, it feels more like breathing: in and out—being sucked in, and then coming up for air. Or like sliding back and forth between two lives: the first, the one that extended itself far into the illusion of a future full of the promise of aging; and the second, the reality of a life occupied by certain, daily struggle and my far more imminent death and separation from the future of my loved ones.

How does this play itself out in my daily life? In a list of random thoughts and ways. Here’s a sampling:

  • The seeds of love are sown among human networks every day. Yesterday, I was with Penelope and Graeme, my 7 and 5-year-old grandchildren. Penelope was telling me about her swimming lessons, and what she does in grade one, and how the ballet school she attends has asked her to double or triple the number of weekly classes she takes because they want to move her to the advanced level, and how she’s willing to start with a one-week ballet workshop this summer and then, well see…
Eardley, Joan Kathleen Harding; Children and Chalked Wall No.2; Lakeland Arts Trust; http://www.artuk.org/artworks/children-and-chalked-wall-no-2-145281

And her brother Graeme sat next to me as we read the Pokémon encyclopedia together, identifying the evolutions of most of the creatures, just an hour or so after we had returned from shopping, all of us together with his parents, for his birthday presents (because he turns 5 next week), during which he had been so reasonable and showed not a glimmer of greed or selfishness…

And at one point, with P&G on either side of me on the couch, I took each of their hands and pressed them together over my lap, to show them that Graeme’s were already the same size as his sister’s. And it seemed like a good time to talk about such disparities, and what they might mean, as neither was sure whether it was a good or bad thing that sweet little Graeme has large strong hands…

And during every moment of these hours spent in such perfect company, I carried inside me the feeling of having been prematurely aged by cancer, and of not being as sure of myself as I once was with them. Cancer was there, in the room with us. It heightened my sense of separation from them because it took up space that has its own weight, its own gravity.

  • Several months ago, while watching the movie World War Z with Simon and Christian, in which infected, ravenous zombies are terrorizing the whole world and attacking every person in their path, I learned that I would have been spared. Sick people like me, with cancer and other diseases, were left alone by the zombies. Christian and I, upon realising this, looked at each other and smiled, even stifling a giggle. Quickly though, the other message of this scene hit me, then my sons: whether by disease or design, inclusion or exclusion, being culled is still being culled.

First, there was escape into a movie, then cancer pulled me away again.

  • I still have time to read. And I’ve been reading all over the place, trying to catch up with blogs posts I write for the Pointe-Claire Library and simply enjoying escaping into imaginary worlds. But reading has also provided one of the clearest, smoothest paths to approach cancer and dying, and I have found myself eagerly following it. It’s where I’ve most felt the sliding back and forth between lives and needs: between cancer and cancer-free thoughts.
de Ville, Nicholas; Still Life with Stools and Books; The Fitzwilliam Museum; http://www.artuk.org/artworks/still-life-with-stools-and-books-5784

And so, despite everything I’ve written here, I do approach death and dying willingly, in ways that work for me. I must prepare. Denial is impossible for me. That’s why I’ve just picked up Maggie O’Farrell’s I AM, I AM, I AM, Seventeen Brushes with Death, which is getting rave reviews, and have just ordered Jayson Greene’s Once More We Saw Stars, in which he shares the story of the death of his tiny daughter, just a couple of years old, as the result of a freak accident.

I don’t find anything morbid in these books, nor do I find them depressing. What they allow me to do is to approach death over and over; examine its shape and its impact on those it touched; learn from the person who is dying or, finally, observe death’s survivors.

Every book I have read about death and dying so far has shown me families of survivors who are able to speak of their lost loved one with joy and still such an abundance of love. And this helps me to stay on the track that is leading me towards death knowing that it’s possible for me to leave life without causing irreversible suffering. The only prize worth keeping an eye on. Life goes on!

  • Every day, several times a day, I receive short quotes from an app named We Croak. Simon had originally heard its creator talk about it on CBC Radio, and I loved the idea of being reminded of my mortality at random daily intervals. This was many moons ago.

And then there was my cancer diagnosis. And when the first few quotes buzzed in on my phone, We Croak suddenly appeared to me in a different light. It was, briefly, macabre, and I wrestled with the impulse to deactivate it.

It still reminds me several times a day that I am mortal. Sometimes it does this philosophically, sometimes poetically, sometimes medically, sometimes religiously and sometimes brutally.

But I kept it as just one part of this path that I walk along now. It’s a path that backs me away from my cancer for essential, replenishing and escapist periods of time, and also leads me toward my cancer, from which I still have many lessons to learn.

This is the quote that buzzed on my We Croak phone app just minutes ago. It’s everything I’ve just written, delivered clear as day.

A dying person may book a vacation you know they will never take, plant a tree, buy a car, and shave their head. Make room for rage. Make room for clarity and insight, composure and acceptance, and throwing out a bedpan across a room.” Sallie Tisdale

May I continue this movement away from and towards what my cancer comes to deliver.

Paul, Celia; Study: My Mother and the Cross; Lakeland Arts Trust; http://www.artuk.org/artworks/study-my-mother-and-the-cross-145440

 

 

THE UNPRESERVABLE TRAIL…

Maussion, Charles; Portrait; Sainsbury Centre for Visual Arts, University of East Anglia; http://www.artuk.org/artworks/portrait-1893

April 3rd, 2019

At breakfast with Christian and my friend Gail, yesterday, the conversation turned to memory, and what exactly memories are, and what they do for us, and what they mean to each person’s identity and how we think of ourselves: their weight, their influence…

We spoke of a common desire in this world to dig into the past, to search our childhoods for the trauma, for the pain, and also for those formative experiences that may still not sit easily within us, with which we may still not have made our peace.

Maussion, Charles; Head and Shoulders; Sainsbury Centre for Visual Arts, University of East Anglia; http://www.artuk.org/artworks/head-and-shoulders-1890

And Christian likened past experience and memory to a great tree with so many ramifications that it’s impossible to know where each is ultimately leading to, or emanated from, or how they all come together from a trunk and its roots…

And Gail, who is a Zen practitioner, smiled at that image and said that she had been reminded many a time that to look too long to the past is to get lost inside your head because, in truth, there is only ever the present moment, and though we carry with us imprinted memories of our own past, we can only every really BE HERE, NOW. There’s no going back, and the future is as intangible as space. She likened memory to the vapour trail we see tailing high flying airplanes, which is very thick where it first emerges, but which thins till it disappears off into nothingness.

Unpreservable.

At 60, I’ve stored enough memories to see the truth of both of those images, and to realise that by and large, I remember just enough to remain my continuous self, someone who walks in the world with a personal identity, i.e. I adore my children and grandchildren, I’m Canadian, a Montrealer; the people I love are…The foods I enjoy are…During this past year, I’ve moved to a new town, into a new home…I’m very sick…

But I also know, now more than ever, as I grow older, that the memories we hold onto with an iron grip are really the pain. We envelop those in such a tough, protective shell that sometimes they become virtually inaccessible to us, lost in lock down. It’s the memory of pain that seems to have the longest shelf life.

* * *

 

I’m just reaching the end of Philippe Lançon’s 2018 book, Le Lambeau (a word which means, in the book’s context, a flap of flesh). Lançon is a writer/journalist who survived the Charlie Hebdo massacre in Paris, January 7th, 2015. He was in the conference room at the moment of the attack and had the lower part of his face shot off, as well as sustaining damage to his arms. He was left disfigured, and suffered two years of hospitalisation, of treatments, surgery, more treatments, more reconstructive surgery, and still more treatments and pain…

It’s a gorgeous and profound five-hundred-plus page book, that covers the actual shooting very briefly, but lingers for a very long time on the life that came next. The survival. In French, the meaning is deeper, because to live is vivre, and to survive is survivre, words which, for Lançon, also refer to his two lives: the one before the attack, and the one after. Ma vie, et ma survie.

unknown artist; Les massacres de la guerre; The University of York; http://www.artuk.org/artworks/les-massacres-de-la-guerre-8914

What Lançon examines with fascination, precision, and disarming honesty, is how the man he was for more than fifty years, and the life he had, have become almost an afterthought in his new present. He isn’t so much describing a disconnect between his former life and his present “survival” as he is eloquently making a case for the former’s irrelevance.As I’ve read through his book, Lançon has taken me from the somewhat unconscious, automatic life that was his before January 7th, 2015, to one that was stripped down to the bareness of hospital rooms, pain, drugs, drool, drains, nurses, doctors, surgeries, opioids, fear and dependency.

And what struck me, all the way through his account, are the parallels that can be drawn between his experience and that of anyone who has suffered the violent or sudden shock of a life-threatening event, including war: a physical attack (as in Lançon’s case); a medical diagnosis that promises suffering and eventual death, or any unpredictable occurrence that moves a person’s life out of the public world of home, work and freedom of movement, into medical care and the enveloping necessity of hospitals and treatment.

In fact, I’m shocked that I not only feel empathy toward him (who wouldn’t? his tragic story is one of martyrdom), but that I also understand so many of his reactions, such as his progressive  withdrawal from the world outside (this is a writer and journalist who has lived and travelled in Romania, the Middle East, South and Central America, all over the world, in fact) which took the form of not reading the papers or watching television news; seeking refuge in music, mostly Bach…almost always Bach…for hours and hours; feeling the burden of having become a patient—the weight of that dependency; veins that seek only to escape the piercing needle; the alteration of the physical self and the mirror that returns such alien images; the desire to remain cocooned…

Philippe Lançon
Philippe Lançon

I think of myself, moving between our house and the CHUM, and how it’s becoming easier to feel comfortable in this new, smaller life of mine. I realize that I, too, have become reluctant to take on the news of the world at the rate I did before learning I have cancer. My desire to listen to music has not evaporated, but it’s often music of a certain type—all of Max Richter, for example—largely instrumental music that is expansive and elegiac, that fills up the whole house when I’m alone and which envelops me in the emotions that I feel and want to keep feeling but cannot always share with others; looking at myself in the mirror, the way Lançon did and certainly still must, and accepting anew, each time, that the person being reflected back is the one who is here, now, and that any other incarnation is gone—lost to the past.

For many of us, the sense of awareness of a “before life” and “after life” will only develop as a result of aging. Memories will be explored, evoking both a sense of loss, appreciation, and the sense of continuity. But for the many others, the acceptance of la vie and la survie, of two distinct lives created in a moment, and divided irrevocably, will mean leaving behind the unpreservable trail.

For many, first there was life, and then, survival.

Gerrard, Kaff; In the Twilight, in the Evening; Canterbury City Council Museums and Galleries; http://www.artuk.org/artworks/in-the-twilight-in-the-evening-75760

 

 

 

 

 

 

 

MOVING BETWEEN SERENITY AND SADNESS

Bennett, David; Slipway 1; ArtCare, Salisbury District Hospital; http://www.artuk.org/artworks/slipway-1-64745

March 23rd 2019

 Yesterday, I spent a part of the afternoon beginning the process of resigning from my position as a French teacher in adult education for the CSMB (Marguerite-Bourgeoys school board). The woman on the phone told me I should receive the papers in a week or so. The next step will be filling out the documents required to receive my small teacher’s pension. It’s very small because my professional life only got seriously started in my forties—though everything I did before that was leading me to that profession. I don’t qualify for my federal pension for five years…

It isn’t nearly enough. It’s a pittance that will help pay for food, and maybe the odd bill, but will mean being dependent on others, or else—and more realistically— running through what money I have left from my separation and the sale of our house—in effect leaving nothing behind for anyone.

It’s so startling (and ironic!) to think that there could come a day when I’ve outlived my ability to support myself, even in this group living arrangement that I have with my son and soon, our friend Cindy.  And even with cancer. I could find myself rooting for death rather than indigence, or, more honestly, being utterly dependent on my children, which is not an acceptable option.

Millet, Jean-Francois; Gust of Wind; Amgueddfa Cymru – National Museum Wales; http://www.artuk.org/artworks/gust-of-wind-116875

There are notes of melodrama there, because the people who love me would never see it that way and will probably feel like bonking me on the head when they read this, but…there’s truth here too. I can’t work for at least two years, and if I’m still alive at the end of the clinical trial, then Dr. Aubin, who leads this trial, told me point blank that she’s prepared right now to sign any document which states that I should never work again, because, well…I think she knows that magic rainbows aren’t awaiting me at the end of the two year trial, but she simply said –remembering that I’ll be 62 by then (using the future tense feels lovely) : “No, I don’t like the idea of you being submitted to the stresses of teaching,”  (which include driving all over the place) “I think you qualify for a disability pension, and I’ll sign a paper right now that states that you shouldn’t work anymore.”

My age is a factor in her decision-making process. She’s hopeful of extending my life and knows what could, and won’t, help me to reach that goal. And I probably shouldn’t write this, but I believe that when I walk into the small examination room she uses when she comes to the 14th floor of the CHUM, and we sit and talk and plan out the next treatment, she’s happy to see me, and has grown fond of me, in a professional way. I think she’s rooting for me.

I felt immediate relief, which was in part because she understood the demands of what I do. Did.

And also, because there’s so much struggle in my life right now that adding to it, even only on a list of possibilities, is too much to take in. But I still haven’t begun getting together the paperwork for a disability pension. The next step.

Schwarz, Hans; Lisa Dunwood, Teacher; Girton College, University of Cambridge; http://www.artuk.org/artworks/lisa-dunwood-teacher-195231

As I made the phone call yesterday, a workbook was sitting on this table where I write. A terrific book for learning French, published in Quebec (part of the Par Ici series), that I began using a few years ago when it first turned up. I can’t remember how it got there, but seeing it and leafing through it helped me fully appreciate the finality of never teaching again. I loved that book, despite its shortcomings (there are ALWAYS shortcomings: that’s what the teacher’s for). I love all the memories associated with it, the classes where my students were caught up in role play: one, the building superintendent and the other, the tenant with a broken kitchen faucet; or one, shopping for posh clothes being served by an obsequious sales person; or my beginners, struggling to ask questions about an Airbnb lodging they were looking to rent…

Just some of the things that have ended in my life.

It’s a long and precious list of roles I no longer play, responsibilities I no longer have, people I no longer see of whom I had grown very fond, teaching them once, twice, three times a week for 2, 3, 4 years… Ben, Armina, Peter, Christine, Arthur, Amira, Veli, all of my Filipino gentlemen…So many over the years that I cannot begin to name everyone…Day classes, evening classes…Many still Facebook friends.

And strangers I will never meet. Humans who might have been, but won’t be my students. I won’t have the chance to learn from them. A part of my future, which seemed so predetermined, now amputated.

I was so changed by my experience of teaching, which opened me up to myself and to others; which helped me feel so much better about the human race; which awakened me to the richness of otherness.

There are times, here in Hudson, when I feel myself shrinking. Losing confidence, losing my sense of purpose. The Incredible Shrinking Woman. No more Elastigirl. Leaving teaching was as far from my thoughts as would be leaving writing. I just assumed I would do both until…I couldn’t. Ah. There it is.

But I can still write (even though my eyes are bothering so much as a result of chemo that I’m forced to use reading glasses that are almost double my prescription (from +2.00 to + 3.75! and still, I don’t see clearly).

***

Over the past seven months, I’ve adapted to the routine of going to the new CHUM so often, and to the older Hotel-Dieu buildings too. I complain about the repetitiveness of it, and worse, the boxiness of it, but there are elements of these experiences that are almost ritual, and they’re soothing.

Getting Monday’s pre-chemo tests and examinations done quickly, and leaving the hospital early enough to make the 12:30 pm train home is the ultimate goal. It’s never more than half full, and it gets me on track (literally) to be home by roughly 2:15 pm.

The train is my principle mode of transport. Though I’m guaranteed free parking at the CHUM. I’ve never used my car to get there. Instead, I leave it where Simon teaches, in Sainte-Anne-de-Bellevue, at the train station.

The train at Montreal West Station, March 25th 2019

The train never failed me this winter. Not once. Not even during the worst snowstorm of the year. On the way in to the city, because my station is one of the first on the line, I’m lucky enough to get a good seat and settle in. But this is morning bustle time. People are off to work and to school. Most seem to carry with them a sense of mission. A purpose. Some are munching on their ersatz breakfast, while others, those with earbuds, have disappeared into their phones or tablets.

Returning home always feels different, but especially if it isn’t rush hour. The train is peaceful, and I love to ride the second floor—the quietest space. It creeks, and seems to rock more, left to right, at these times, in a gentle motion that soothes and settles everyone down. From my perch, I watch the strip of world that was carved out when the tracks were laid, some of them more than a century ago.

I watch Westmount and Montreal West roll past my window, showing ravines, a golf course, the ugly backsides of cheaply constructed and ramshackle garages and small grocery stores, and all of the big old gorgeous houses that passed for single-family dwellings back then, with attics and additions poking out unexpectedly.

On the train, during a snowstorm, February 2019

I love leaving Montreal’s edges behind, and reaching Lachine, Dorval, and the stations of my former home—three in all (the most!)— Pointe-Claire. They line the highway, and the houses have shrunk in size (the up-market homes are of course near the lake or in posher neighbourhoods).

But as we push westward, the cookie cutter suburbs begin to lose their geometry, and where no businesses and warehouses have yet been built, there’s still open fields, and finally, the farmlands of McGill’s MacDonald campus.

A few times, I’ve ridden the train right off the island, all the way to Vaudreuil, and once, Hudson itself (the train only stops in Hudson at 6:50 am and 6:40 pm), but they’re still working out the kinks in their system, so I’ve become partial to Sainte-Anne.

Riding the trains connects me with my past. It evokes the thrill of shopping trips downtown with my sisters or with friends when we were just thirteen or fourteen; and the years when I was a student at Concordia U, then McGill, and then finally l’Université du Québec à Montréal (UQAM), always preferring the train to anything else.

I hopped the train to go buy my wedding dress downtown. I hopped the train to attend Christian’s performances at FACE high school, and later, as a professional actor. I hopped the train to attend Simon and Jeremy’s graduations from Concordia (having become a biologist and an engineer), and later, Christian’s too…

On the train during a snowstorm, February 2019

These days, when I look out the window from the commuter train, I don’t have the sense that it might also take me to Toronto or New York, as it has in the past. I try not to see it as a means of going away or getting away, but try instead to appreciate how lovely it is to move back and forth between the places and people who are helping me to stay alive, through their love and care, making the serenity worth the sadness.

 

 

 

 

 

 

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