It’s about the way events in our lives can become connected; even the smallest, which taken individually seem insignificant, strung together in a sequence that not only heightens the meaning of each, but which can make you feel as though life is sending a message directly to you. As though nothing about this string is random. If you think about it, you’ll surely be able to recall this kind of moment. Here’s what I experienced just days ago.
In a book I was reading, I came across the story of a couple who, already the parents of a preschooler, found out that they were expecting twins. Things had been going smoothly until, well before 28 weeks into her second trimester, the mother went into labour and both baby girls were born. One died very soon after in the neonatal ICU unit. Her sister hung on and was saved, though she suffered so much damage in the weeks following her birth that she has never been able to walk or move or speak or do much beyond breathe and take in nutrients and love.
The book mentioned that at the funeral for the lost twin baby, Raymond Carver’s short poem, “Late Fragment”, was read.
I must tell you now that I was already shivering, because while my twin sons will be 37 in May and are beautiful, healthy men, the fact is that one, Jeremy, the “second” twin, could have so easily died in childbirth when his umbilical cord prolapsed as he was beginning his exit from my body. Jeremy, who had to be cut out of me by emergency caesarian. Jeremy, who after 5 minutes, was still not breathing, simply hanging limp, unconscious and blue and…I shudder, because he came so close to death. Jeremy, who spent a week in ICU and yet miraculously came home with his brother Simon 6 days later. Still, for weeks and months and years, he was followed at the pediatric pulmonary clinic for what was thought to be congenital lobar emphysema. Whatever it was, it eventually corrected itself. He is brilliant and perfect. How this is so, I can’t fathom. His fate could so easily have been the same as either of those little premature twins— with an APGAR score of only 1, five long minutes after his delivery.
And because the story of those tiny twin girls unlocked such tender and intense feelings in me, I looked up Raymond Carver’s poem, which goes like this:
And those verses…Those verses…They are everything. They speak directly to me and to the lesson I’m learning every day since my diagnosis. And then I saw that “Late Fragment” is the final poem in Carver’s last published work, A New Path to the Waterfall, a collection that was written while he was dying of cancer. It was enough to cause me to gasp.
During all of this, while overcome by the mixture of unutterable sadness and traumatic memory and astonishingly, joy—a joy that grew out of the absolute resonance of that poem’s message in my life–I’d been messaging back and forth with Christian. I was telling him that our beloved friend/family member Mario, for whom I’ve recently posted an online review of the biography he’s just finished—but which cannot be promoted the way it deserves because we are living in the time of COVID-19—had just then written the most kind, radiant short message of thanks to me.
So there was the tiny lost twin, and also the second, from whom life withheld so much of its richness; and there was my Jeremy, rescued from the grasp of life-altering injury; and there was a brief, staggering poem and its luminous message; and there was and is cancer, ever present; and the consolation of love, lavished upon me at that moment by Mario…all of these tapping one into the other like dominoes…
And I wrote to Christian, right then, amidst this unfurling wave of emotional truth: There are moments that simply are not coincidence.
I woke up at 5 o’clock this morning, feeling the effects of the 5 FU (Fluorouracil) that I won’t be getting tomorrow during chemotherapy because it has surprised me and my medical team, with side effects that harken back to the early days, when I was at full concentration, which, over time, has been lowered incrementally by 6 % (at least I think that number is correct).
All this really means is that my body has been struggling. A severe recurrence of swelling and burning in my hands that are now difficult to close into a fist or do much else with painlessly, and their almost mummified skin which, when it splits open, turns the newly exposed patches into areas especially sensitive to the alcohol-based hand soaps I had to use 20 times yesterday at the CHUM. And, something akin to being desiccated from the inside: burning corneas and sinuses that ache and fill with mucus that seems to petrify on contact with air; the interior of my mouth swollen and heat sensitive and unable to produce much useful saliva.
When I awoke, all of this hit me, all of the discomfort at the same time so, rather than get up and quite likely wake Simon up if I moved around, I stayed put and entered a cycle of trying to fall asleep, almost succeeding, being awoken by snorts that I was responsible for with my saharan nasal passages (so undignified), and starting over again…
(My complaints are now officially finished)
At 9 am, just minutes ago, my phone pinged (with an interesting COVID-19 related article link sent by Simon), and I looked at the time, and here I am. I dislike feeling that a few extra hours of life, bright and early life, escaped me. I am so happy to greet each morning.
But I didn’t awaken to a quiet house because Simon is at home, teaching his college-level biology students online, holding office hours online, orchestrating “labs” online. Minutes ago, he was online with a student, and though I couldn’t hear everything—the door was closed and their voices slightly muffled—I could hear the younger man’s voice, and his questions, and I could make out bits of Simon’s data-supported answers. Simon was clarifying some of the confusion surrounding our coronavirus infection rates in Quebec, and why our numbers are what they are. They bantered back and forth and I could hear understanding in the student’s voice, the deliverance of knowing more, of making sense of the mess out there…
He seemed a lovely young man. His teacher, my son, is only 36. They are in it together, aren’t they? Their individual fates will play themselves out in much the same time-space.
Sitting here, it also occurs to me how different the two obvious threats to my own life are. Covid-19, a virus, is an INVADER. It’s out there, in other bodies, in the droplets that the latter produce when they sneeze and laugh and spit. It covers surfaces for a brief while before it dies. It attacks other people’s bodies and, if given a chance, will do the same thing to mine, because it is ALIVE and seeks to remain that way, and needs “living vessels” to do that. It can also mutate.
And this, from a human standpoint, makes it merciless. It’s alien and aggressive and our bodies single it out quickly and attack it ferociously, and we humans feel terrible in this predicament of having become a furious battleground. But it also offers, in most cases, the very strong likelihood of our survival. Death rates from COVID-19 are between one and ten percent, I think. It depends more on where it emerges and how prepared humans are to treat it. So we hate it for the fear it causes us, and the terrible loss of life that any percentage ALWAYS represents, as we wait for our bodies, all of them, everywhere, to win this fight to the death, leaving behind a life-altering perspective on the precarity of human civilization; bringing about, I HOPE, a sea-change in human attitudes toward each other and the life that surrounds us. What matters; what was only ever superficial and ephemeral; what can be taken away by a microscopic pathogen doing what it is programmed to do, nothing personal.
And then there is cancer, my cancer, which, in contrast with COVID-19, is NOT an invader, is not alien. Whose purpose is NOT to harm me. All of our bodies contain cells that can potentially change just enough to make us sick as they continue to reproduce and make more dysfunctional cells, as though they are the one and only cells. Mine were able to reproduce and cling to each other and sustain each other for a long while before I felt ANY ill effects whatsoever. YEARS, in fact. My body supplied them with everything they needed, not sensing that they would, in time, kill me. My cancer cells have no “reason” to kill me: they just could, and likely will. Sooner than I would wish.
And yet, when humans see a person whose complexion is sallow, often yellowish, whose hair is thin or almost gone, whose weight has dropped visibly and whose clothing just hangs on their shrunken body or who seems to be in constant pain, we feel as great a fear (perhaps even greater) of them and their sickness as we would of a person with flushed cheeks and a cough (though probably not these days). And we feel revulsion. We would prefer to occupy a minimum safe distance. But we don’t become hysterical, run out to hoard toilet paper and medical masks, and buy up so much more than what we need and what is our fair share.
We are each other’s keepers. Have we begun to internalize this deeply yet?
My long commute to the CHUM and my time spent there allows me to observe the emptiness of our city under lockdown. What it means to be living without life around us. Large cities spell this out in the most awful way. Montreal has become an architectural ghost town. The buildings still reach up to the sky, still posture and preen for our attention. But they mean nothing, until you remember that at least some of them, apartment and condo complexes, are actually human hives—swarming with social beings trapped there for a while yet.
When I reach home in Hudson, its birdsong and plant life—it is spring after all and nature is bursting with reproductive energy— remind me instantly that life is everything. Not objects, not buildings, not a pantry or garage overstocked to the point of bursting with hygiene products, flour and sanitizers.
Life. People. We miss each other! We miss being touched by each other. We miss the astonishing, reassuring proximity to each other. And we’re learning to live in a decelerated, hushed world.
The appearance of a person at the end of the road with cancer very much resembles the appearance of things that humans have done to each other. That is, the way we found humans in prisoner of war camps and concentration camps, or exhausted and hollowed-out refugees, eyes wide in the dark, piled into boats like so much trash: emaciated, starved bodies that can’t take any more suffering. And maybe that’s part of what terrifies us about cancer: it’s also a reminder of what we’re capable of doing to each other…
But when we enter stores and empty out the shelves, piling our carts full of “stuff”, to the detriment of everyone else around us, not caring; shoving, pushing, losing our shit in parking lots and aisles, then I think we’ve become cancer cells too, and it’s a horrible thing to witness: each person-cell seeking only its own survival, oblivious of the needs of the community—the social body. How ugly is this breakdown of human solidarity and this intensely focused desire to self-protect!
At the end of their lives, people with very advanced cancers, they just fall…they fall from life, the way the leaves on the trees do in late autumn and early winter.
The way I’d been stating, with wonder and pride, that in the 15 months I’d been receiving chemotherapy, I hadn’t been sick; hadn’t caught the plague that felled Christian in the late fall of 2018; hadn’t even had a cold.
Tsk, tsk, tsk. All it took was the good ol’ norovirus.
On Thursday, November 14th, thinking that I had allowed for a period of “minimum safe distance”, I drove the 35km down the TransCanada to visit my mum, who had been sick with the stomach flu since the previous weekend. Her partner, a retired physician, was taking good care of her, but he had returned to his home in the city on Tuesday to look after things there.
My mum, who is the Energizer Bunny of octogenarians, was still weak from her ordeal and in need of supplies. So I scooped homemade chicken soup from our freezer, enriched it a bit with some gently simmered vegetables, bought some Yorkshire Gold decaf and also regular tea (for guests) and a whole assortment of dry biscuits from the British tea shop here in Hudson, picked up some bananas, some applesauce and delivered them the same day.
Looking fragile, as she does more and more, my mum was nevertheless visibly jazzed to have some company, and so, with my white cotton gloves on (because you can’t be too careful with stomach flu, even after 5 days), I warmed a bowl of soup for her, made the tea, and got the cookies arranged on a plate.
The conversation was lovely! My mum brightened, and soon we were talking about books and Christmas and a whole bunch of things I can no longer remember. I purposely—in spite of the multiple cups of tea—did not use her bathroom before leaving. As I left, my mum said: “We have to do this more often, it’s such fun; our conversations are so interesting.” That was mostly just a good sales pitch. Mothers want to see their children, and cancer (and the added distance between us since my move to Hudson) has made a serious dent in my ability to visit her in any kind of regular fashion.
There is so little I can do for her…so little I can do for anyone, that I drove home imbued with a feeling of having done SOMETHING to alter my general ineffectiveness.
The next day, Friday the 15th, Simon was invited to dinner by one of the coolest couples on the planet, Heather and Adrien: she, a geology teacher at the same college as Simon, and he, an anthropologist at Université de Montréal—who speaks at least 5 languages fluently. They live in the most cutting edge house in Hudson. It looks like something out of an upscale Wallander episode. It’s a giant wood bungalow with all of the wooden structural features (ceilings, beams, walls, the works!) exposed. It’s geothermically heated, and situated on several acres of woodland. They’re vegan and grow most of their own food (of course!). Heather and Adrien are at the forefront of preparedness for climate change. They’re also warm and kind and that’s probably why Heather thought to say to Simon: “Hey! Bring your mum!”
The evening was so lovely. Mostly, I just sat there dazed by everyone’s brilliance and the breathtaking scope of their knowledge. I’d time-travelled and somehow wound up in a room with a bunch of Renaissance polymaths.
And then dinner was served. And as the large bowl of tasty, multicoloured (there were beets!) roasted root vegetables served over basmati rice was placed in front of me—suddenly, as though someone sinister wearing a plague doctor mask had quickly entered and exited my field of vision—I felt the first gentle wave of noro-nausea move inside my stomach. The conversation was as animated as ever, but I was retreating from it, feeling hot and sticky and clammy as the waves of nausea started to build. I forced myself to finish my meal, sitting there like a stump, while the realization of what was happening to me became clearer and clearer, and then, in the gentlest, most urgent-without-sowing-panic voice, I asked my hosts: “Is there a bathroom nearby?.”
That poor powder room. Poor toilet bowl. It was hit with a thundering cascade of totally undigested, colourful root vegetables. Once. Twice. Oh God.
Twenty-four hours after visiting my mum, I was noro-infected up to my eyeballs. Is there a more mortifying way to experience a first encounter with brilliant and generous hosts? The odds are against it, I think.
Of course, this was just the beginning. I didn’t sleep a wink that night, and was up at least 10 more times, my stomach turning itself inside out. By the next day, it was like I had been scraped off the battlefield—like someone about whom the triage people would have said: We’re not sure about her.”
I spent Saturday in my bed, flattened under the covers, drinking only water and a bit of salt-spiked apple juice (I eventually switched to salted orange juice cut with boiled water—the hydrating mix recommended by the CHUM).
Sunday, I graduated to banana and some apple sauce and as much water as I could drink. And an extra-protein Boost I think.
I had my sights on Monday, which was my sister Danielle’s birthday. I wanted to keep my promise to her to take her out for BBQ chicken and GREAT fries (= Côte-St-Luc BBQ), and then bring her back to Hudson for the afternoon. I succeeded!
Tuesday and Wednesday, it was back to the CHUM for blood tests, my pre-chemo check-up and chemo itself. Back to the routine. Back to….just cancer and treatment. I had lost a kilo (2.2 pounds), but otherwise, I was good to go.
Except that…I wasn’t quite right. I still had occasional waves of nausea. Slight pain in my stomach. I was still skittish around food, and Simon was watching my intake like a hawk.
Then came the evening of Monday, November 25th. There we were, Simon and I, watching a movie while we ate the chicken parmigiana I had prepared. The movie was fun, the company, as wonderful as always and…oh no…my guts were out to sea. It was happening AGAIN.
This is the thing about the treatment of cancer (most especially after 15 months’ worth): it leaves you immune-suppressed. I had thought myself above this. I had developed a false sense of security. And boy, did my body let me have it. I spent another complete night heaving over the toilet bowl only this time, both ends of my digestive tract were expressing their outrage in tandem.
The next morning, with Simon off to teach but checking in with me every hour, I would have scared a ghost. I kind of looked like a ghost balloon that has lost all its air. I also had dark circles under my eyes (well, I think they appear when there’s no more moisture in your body tissue) and a chalk-white face. Every time I got out of bed (to get water, my hydrating juice and more water), I did it in stages, just to make sure I wouldn’t just slump onto the floor. I wasn’t sure I had measurable blood pressure.
And I slept and slept and slept. And when I awoke, I’d sip a bit more liquid, and then, at times, my mind would wander about, picking questions out of the air like: How many times in a row can you relapse with gastro-enteritis? Can cancer spread while you’re being desiccated by a virus? How much weight am I losing, I wonder? Will food ever appeal to me again? Could I just live on bananas instead?
* * *
Tuesday ended, then Wednesday, Thursday and so on. And here I am, living what should have been chemo week, but turned into a period of convalescence.
It’s Friday, December 6th. I’ve lost weeks of my life, and 3 kilos (about 6.5 pounds). Chemo was cancelled this week when blood tests indicated that my calcium and potassium levels disqualified me. Well, gee, d’uh. Call it dehydration or desiccation or The Great 15-rounder with the Norovirus, but expect a person’s electrolytes to be damned scanty when the final bell clangs.
I’ve been taking calcium (mint green coloured) and potassium supplements (white and looking alarmingly like suppositories) since Tuesday morning. I feel much, much better, but every visit to the bathroom is still a full systems check. I’m getting there. God bless electrolytes. And the love of sons who care for you and check in on you.
* * *
I hope you’ve smiled through this. Though every word of it is true, it was meant to make you chuckle and okay, cringe a wee bit too.
But during all of those days when I was just lying quietly under bedding, too tired and sleepy to read or watch Netflix or Britbox or anything else, I was still living. Lying there under the soft, warm weightlessness of my duvet, my head propped up by three pillows, able only to watch, through the window, the light changing outside, and hear the cars and occasional trucks zip up and down the street, I was mostly inside my head.
I feel as though I’ve just lived through a dress rehearsal for my last days—for my palliative weeks. I think I got a glimmer of what it might mean to become so debilitated that I can no longer, or barely, get out of bed; that I no longer have any sort of appetite. It’s easy for me to see why I might choose not to fight. No more 15-rounders. No more rounds at all.
The norovirus telescoped from out of my immune-suppressed chemo body which telescopes from my cancerous body…the tendrils getting thinner at each remove from the point of origin, until I could barely touch life at all…if only temporarily. This time.
I was recovering, quietly, in a home that is mine and also Simon’s and soon Cindy’s too, and it’s a place where I feel loved and safe. This fills me with gratitude. A place where I’m surrounded by books and all of the human experiences, stories and meditations these contain. This brings me joy. A place where the spaces left on the walls are decorated with the faces of family members—my children and grandchildren—and the artwork of friends. This gives me hope for the future. Their future.
My fifteen-rounder has brought death closer to me, and helped me to feel less afraid.
“To truly laugh, you must be able to take your pain, and play with it!”- Charlie Chaplin
Not long ago, I was with a bunch of people I love. We were celebrating a birthday and it was smiles all-round.
One of the guests, who has been struggling with serious and rather frightening health issues, had just arrived, and mentioned the eternity it seemed to be taking to get the proper medical tests and procedures done here, in Quebec. I couldn’t help but say: “Well I’ve been so lucky at the CHUM and received such good care.”
And my interlocutor answered right back: “Yes, but you’re terminal.”
* * * *
I feel like I should leave a space on the page. It represents a pause. How time seemed to freeze just long enough for me to gasp silently.
Right up until that moment, I was feeling confident and upbeat. In social situations, it isn’t ever possible to make my cancer disappear. Time is required. People have to get used to me and my short white hair (but with blue eyes!), and ask their questions about how things are going in chemo (which I appreciate), and then, the cancer thing is allowed to go sit in a corner and take a break so conversation can move on—until someone calls it out again (sometimes that person is me).
TERMINAL. It was the first time that word has been used around me. And though it was spoken with not a micron of malice, still, it made me wobble, to have it thrown at me like that. It was like being splashed unexpectedly with black paint at super speed. I felt tainted. It reduced me to one of the doomed soldiers of the gaunt chemo army.
This all happened in a split second. I remember thinking, in a shaky inner voice: “But we’re ALL terminal.” (that’s the deal in this one life we have).
I haven’t heard the adjective used at the CHUM, or on my blog page where so many cancer sufferers and sympathizers come to leave comments.
* * * *
I’m a word person. I think it’s the second time in my life that I’ve actually said this in a formal way. The first time was in a yoga weekend workshop, years ago, when we were asked to repeat a mantra over and over and I said to our instructor: “I’m a person of words, and I’d like to know what it is that I’m saying.”; and he answered with a “Pfff! A person of words” and a backhanded swipe at the air, meaning the sounds, the vibrations of Sanskrit are what matters, and understanding wasn’t necessary. That may be the day he lost me. Right at the beginning.
Language is my passion, my fascination, my friend. So, it isn’t a surprise that writing this blog has been such a hopeful, buoyant experience.
Language has its own alchemy. It transforms words into love, understanding, fear, wisdom, confusion, suffering, compassion, anger, motivation…and hope. During my journey with cancer, it has been a universal elixir, allowing me to connect with people all over the world.
The oncologists and other members of the medical team (radiologists, chemo nurses, pivot nurses, pharmacists, psychologists…) with whom I’ve established such crucial relationships since last summer, have perfected the language of their trade, and the very best never falter.
Even the staging of my cancer was done with care and circumspection. Once “Stage 4” was determined, it was almost never used again in my presence. When I sit in front of one of the research team’s oncologists, every second Monday morning, the calendar is discussed—my chemo dates and upcoming blood tests and scans—but I don’t know that we’ve ever talked about finalities.
There’s a softness with language there. Those who work in oncology have learned to speak that way. They don’t say exactly when my chemo will end (there’s a certain, immutable number of cycles I must go through in this clinical trial, but some have been interrupted because of side effects and so I’ve lost track), but they carefully walk me through each one. They won’t say what treatment(s) will follow chemotherapy because they know to wait and see what will be required then…
When you focus on NOW, you don’t need words like terminal and stage 4…but you do find yourself using the word chronic.
My hope is that when my chemo is done (which I think will bring me to next fall), I will have reached a terminal of a different kind, where I will hop the next treatment train that will, I hope, allow me to travel a good distance more. I don’t know how long my trip will be, and don’t expect my medical team to even attempt a guess.
This is, in fact, how most of us live every single day, travelling as best we can, though cancer patients may be the most grateful of all the passengers.
Many years ago, when my boys were in grade school, I used to trek down the street every weekday morning with them to the corner where they caught the school bus. This was the late 80’s and also the 90’s (because Christian is 8 years younger than his twin brothers), and most of the parents congregating on the street corner—many with younger children in tow—were mothers.
For a brief period during that time, the bus stop was a 10-minute walk away, and that’s what put me in contact with Mary, who lived just a couple of houses from the spot where we gathered.
I never got to know Mary well. The broad street her family lived on was busy: there was a high school within sight of her house, which meant lots of school buses and city bus stops and cars. Just behind and east of the high school was—and still is— an elementary school and Catholic church.
Mary was fair-haired, as were her three young children, and pretty, but the lingering image of her, that mental snapshot that remains years later, is of how bedraggled she and her children always were. She couldn’t have been much more than thirty, but she also always looked as though she hadn’t had a minute to run a brush through her thick hair in months, nor her children’s mop tops either. Her eldest, a girl, wearing thick bangs cut straight across her forehead with what could have been gardening shears, by the look of them, was there to take the bus to school, but her younger brothers, little more than a year apart, stayed close to their mum while they poked and teased each other and hung onto Mary’s clothes.
Her husband, who was involved in the local soccer association, was a good twenty years older, short, pot-bellied and a chain smoker. He was as blond and dishevelled as his children. The whole family spoke in British accented English.
I wish I could remember what part of England they were from or what brought them to Montreal. I wish I had made an effort to talk more to Mary, even for only a few minutes each morning. She must have been isolated in that house with her young children, far from home.
But there was one day, on that same street corner, when we spoke just long enough for, of all things, the subject of sky charts to come up. Mary was interested in astrology. Would I like for her to do my sky chart? It was such an unexpected question that I said Sure! Why not? even though I’ve always seen the Zodiac and all things astrological as mysterious and fun and…a fiction. And so, I gave her the date, place and hour of my birth and that was that.
Years went by and I forgot all about it. I didn’t run into Mary and her brood any more. Maybe the bus stops had been changed again; I no longer remember. And then one day, as I was walking to the post office, I saw Mary. None of the details are clear, but I think she looked more settled, more solid. She was alone, and that makes me suppose that her boys were now in school as well. She greeted me, but you could tell that she had somewhere to go. She seemed to have found herself.
And then, just as we were parting ways, she said to me: “I never did give you your sky chart, did I?”. And I just answered something like: “Oh, gee, I’d forgotten about that, it doesn’t matter.”
She stopped then, stretched her arm towards me and said: “What HAPPENED to you in childhood?”, with such intensity that she stunned me. We were still just strangers.
What did she “know”? What had she “seen”? I just remember answering something like: “Well…there were difficult times for my sisters and me…”.
It was such an unexpected turn. Who was this woman and what was this insight she possessed? But she simply looked at me with kindness and said: “Well, I’m sorry about that, but I wanted to let you know that you’ll live to a very happy old age.”
I don’t remember ever speaking to Mary again, and within a few years, I think she and her family had moved on.
This was her gift to me, on that day. She had seen something, seen deep pain, and had given me those soothing words: […] I wanted to let you know that you’ll live to a very happy old age.”
I haven’t written this because I felt like telling a story. I’m sharing this because, astonishingly, I held onto those words for all of these years. I believed Mary. Her words burrowed their way into the networks and channels of my body and mind with the power of an oath, a promise, a guarantee. Mary’s words were such a comfort to me, with their magic that restored an unexpected balance in my life. That made me feel blessed. Protected by some benevolent force…
Mary’s words are at the heart of a kind of magical thinking that has comforted me in dark moments for decades and given me a soft place to escape into when the pain of living has brought me close to my limits. It has nurtured an already natural tendency in me to put stock in the overwhelming grandeur of life.
And it made it harder, these past 5 years, to recognize that cancer was growing inside me. At some level, the mundane facts of my cancer were incompatible with my deepest sense of who I am. I couldn’t relinquish the magic.
Yesterday was an uneven day, and not the first one I’ve experience of late. As my emotional energy waxes and wanes unpredictably, so does my morale. We’re not talking about dramatic mood swings, but of something more interior. One minute, I’m all there, fully in the moment, and the next, I’m inside the bubble of darkness that is my cancer.
That’s how things are right now, and though it seems obvious that it should be so, it has also ambushed me.
Perhaps the darkness is always there for all of us —even the most Zen; even the most spiritually enlightened; even the most insouciant. No amount of meditation and yoga can eliminate the fear, the sadness, the pain that also make us who we are.
Recently though, the bubbles of despondency have caught me unprepared because up to now (I’m so fortunate) into almost every day, so many seeds of love, presence and joy have been sown, expertly, by my sons and many others who care about me and whom I love, that I was blinded. My two best friends in the world came to visit last Wednesday, arriving at 2 pm and staying till 10 pm (I’d forgotten just how easy it is for us to lose ourselves in companionship); Thursday, my husband came to spend the middle part of the day exploring my new neighbourhood with me; and Friday, Christian organized a fourth D&D quest with Simon and their (and now my) friends—a day that began just after lunch and ended well past 10:30 pm.
And yet still, pressed into each of those days were moments of concentrated anguish that brought me to tears and to the edge of something vast and inconsolable. So far, I’ve rescued myself from that fall.
There’s a kind of weeping that demands all of the body’s energy: it hits without warning and quickly swells, and there you are, your heart pounding, your throat choked and your chest under such a terrible pressure that it’s all you can do not to surrender to its anchor-like pull and just gasp and heave and sob and let the snot run and clog your breathing.
A few times, I’ve let some tears slide down my cheeks, let them flow just a little, in private and as quietly as possible. They often come at day’s end, at bedtime, and to me, they’re a little like the flares that sinking ships send up into the sky. They’re an acknowledgement of a vast and terrible peril, and of the sense of isolation that is so often its concomitant. They’re the expression of fact—a reluctant S.O.S.
The last time we were at the surgeon’s office, my son Simon asked her if she could perhaps prescribe a sedative for me; something to ward off the stress hormones that make everything worse; something that would help me to sleep. His presence of mind has given me the reassurance of a good night’s sleep, no matter the shadow of what lies ahead.
I haven’t let myself cry for very long yet because of its ill effects on me: my wobbly heart, my flagging hope, the lowering of my clenched fists. Right now, crying makes me feel fragile. Shaken. Despondent. It amplifies the wrong things. It makes nothing better. It releases little.
It’s too soon for crying. There’s so much to do, so much ahead. There’s living as long as possible. There’s trying to survive as long as possible. Learning and accepting the difference between the two is what’s been sending me into the darkness of the cancer bubble.
On the day that I had my first and only colonoscopy, just as the procedure was to begin, the gastroenterologist said to me that in a few seconds, I would feel the effects of a sedative the nurse was preparing to inject into my I.V. catheter and sure enough, almost instantly, it felt like a warm, liquid blanket was slowly covering me, and I was completely at peace, despite what my eyes could see on the monitor as the endoscope entered my body.
It was the most extraordinary sensation. Not in the least euphoric but more like being drawn into your mother’s arms as a small child and held there in the warmth, with the feeling that no harm can ever come to you. A golden, fluid, perfect place to be. I remember noting somewhere in the paperwork I was given after the procedure, along with the results, that I had just experienced my first dose of fentanyl (its dangers are now very clear to me).
It’s been a tough week. Facing my new reality is proving to be harsher than I thought. But in the midst of this confusion, on a shaky day, I experienced a moment of grace that began with the appearance of a letter in the mailbox, in the form of a striking, square envelope, with edges striped red and white—the telltale markings of air mail (such a rare occurrence). It sits propped up next to me as I write: it doesn’t feel like those thin blue air mail envelopes we used when I was a young. Instead, its paper is thick.
When I first handled it, I could also feel the thickness of the card inside. With no return address anywhere on its surface, and my address written in bold, block letters on the front, I hesitated, but eventually decided that this must be from Leslie Stuart Tate, a man I’ve never met in person, but who is most certainly one of the kindest human beings I know, and my very dear friend.
As soon as I’d opened it, I knew that I was right. Greeting me was the wonderful, whimsical image of an ailing pug on the front of the card (his wee face still speaks to me), but really, the magic was inside. There was the marvellous personality and expressivity of the handwriting of a man with whom I’ve only ever corresponded on line, explaining to me that he had waited to write to me till he was sure I was at my new house (there is so much of him in his handwriting, I’ve found myself running my fingers gently over the straggly and bold cursive letters).
And there was the matter-of-fact way in which, right from the first sentence, he fell into an account of Mr. Trump’s recent visit to England, some much happier news concerning his wife Sue’s family, and a recent film he much enjoyed.
Also inside the envelope was a very small book made of thick, unbleached paper, and featuring a most arresting cover image by artist Stanley Donwood. At only 34 pages, in a generous font, it’s actually a beautifully packaged essay by Robert Macfarlane—it is a melding of form and substance—titledThe Gifts of Reading.
This lovely piece of writing, by an author that I did not know, cast a spell over me. Leslie’s choice was so deliberate and so perfect that holding it in my hands and reading its first few lines transformed the moment and, I think, the afternoon. The Gifts of Writing is a meditation on the meaning of life and the ways we choose to give. It’s about the wonder and mystery of books, and what it can mean when they are shared, over and over. It’s about how books are repositories not only of wisdom and creativity, but also of a way of life, a way of being in the world, a way of loving and a way of leaving the world.
Leslie’s gift helped me to feel that he understood what my days of battling the darkness might be like, and he reminded me of the vastness of riches that surround me: a happy home, beloved sons, a beautiful extended family, friends from everywhere I’ve walked in life, the writing I do and share, the reading…the giving and receiving.
The warmest of feelings spread through me, amplified by the fact that both he and his wife Sue had signed the card, right after the words: We love you.
I see now that a different sort of bubble had formed around me: a golden, perfect place to be, pushing out the darkness.
I realized as I sat quietly, holding the book in my hands as one would a talisman, that I felt this same glow the day I received my scan results from the colorectal surgeon at the CHUM: “On a eu des surprises, et ce ne sont pas de bonnes surprises.” (translated : « There were surprises, and they’re not good surprises”).
I don’t expect to ever receive worse news in my life (please, may it be so for the sake of all those I love so much), and yet that day, with Simon and Jeremy and Christian and his love, Vickie, beside me at the hospital, at the coffee shop where we met afterwards, on the train in which we travelled home together (Jeremy getting off just a few stops later), and for the rest of that evening, the force of their love, the glow of it, the warmth of it, the effect of pure saturation that it had on me…it’s what pulled me back from the awfulness of that day. From the shadow.
One truth eclipsing another:
You will die far too soon…
You are among the luckiest people in the world for having so many gifts showered upon you.
1. Looking at your face close up in a mirror, like when you’re putting on makeup, you expect to see something in your eyes, or maybe a change in your skin, but really all you see is the unadulterated, adulterated you. The eyes that look back are knowing. And that makes you feel estranged from yourself, and maybe also sad.
2. You are as fetching and as fully You as you were on any preceding day.
3. Remember that no one else can tell. Cancer has no smell (to humans), no sound. Cancer is part of the person you’ve always been.
4. Your life HAS changed its track. Your relationship with time, your lifespan, is no longer conceptual—not just something “out there” that eventually runs out on everyone. Your horizon is different than everyone else’s (or at least, that’s how you feel, because you know nothing of most other people’s lives but you’ve just learned a lot more about your own). You think of them as looking far ahead, believing, as they should, that they will not die of the cancer that multiplies inside you, but of something else. They believe they’ll be spared, and why not? You did. You hoped. But cancer has torn a whole bunch of pages off your life’s calendar, and you don’t know how many years, or months or even days…
5. You shouldn’t hide your illness from the world. Cancer, like most profoundly life-altering experiences—losing your job, separating or divorcing, the death of a child, parent, spouse, or friend—is an extraordinary filter. You fear the effects of sharing, and you’re wrong. Your suffering is meaningful not just to yourself, but to others. Cancer gives those who love you, who care about you, who just simply like you—even strangers whose empathy response cannot be helped—an opportunity to show love, to give reassurance, to nurture, to feel close to you, to feel the most truthful emotions of life: fear, sadness, insecurity, vulnerability, need, gratitude, intimacy, loneliness and most of all connection.
6. Don’t walk around feeling sick because you’ve learned that you’re sick. You’ve likely been this way for a while (in my case, probably for years). Shake off this self-conditioning. Remember the insane, hectic, busy, active life you led just weeks ago? Well, you’re the same person who did all that. You have lots of vital energy and if you’re not in any kind of significant pain or distress, then the only thing that has changed is your awareness.
7. Don’t deny a single feeling you might have. I’m pretty sure that will only hurt more, and I’m convinced that each is appropriate. You’ll find yourself ambushed by sadness especially—a tight throat full of tears and pain that catches you in a manner that seems random, but which is often linked to flashes of true insight. Like when you hear people speak of travel plans and sense that this may now be forever beyond your reach; or when a discussion’s taking place about which quality of paint to use in the bedrooms of your new house and you realize that you will perhaps be gone long before the paint loses its glow, so who cares, and what does it matter? ; or when at day’s end, or maybe in the quiet of the house in the morning before anyone has awoken, you live intensely alone with the painful knowledge of your cancer, and resist it just a split second, wanting to disappear into the magical thinking that could make the fearful, difficult future go away and turn everything back to what it was.
8. Train your mind to smile, precisely at such moments. Train your mouth to turn its corners up. Think warm thoughts. Think about gratitude. Think about everything, everyone you have NOW.
This blog is one of my favourite places to come to, but you wouldn’t know it in recent months, would you? I’m sorry about that.
I find myself in a corner—not of my making and certainly not of yours. Your presence out there creates a vast space. It’s a place where so many things seem possible.
But I’m so blocked, it’s awful. In BREAKING OPEN THE SKY, I told you parts of the story, but I know now that I have to tell some of the rest of it, or forsake coming to REEF, because I find myself unable to write anything else to you until I do. Because I’m all of a piece.
There’s an elephant in this room I share with you that sits alongside everything you know about me so far and about how I see the world. Elephant really is the right metaphor, because once in your life, it overwhelms everything else—at least at first.
What you need to know—in as few details as possible—which is coincident with my moving away to a new place and separating from my husband, is the fact that I have cancer, officially diagnosed only a few weeks ago, though of course, I’ve felt that something was wrong with my body far longer than that. Two weeks isn’t much time, and yet still, I feel that I’ve travelled a great distance since then.
The diagnosis is very serious. There can be no pretence that my very life isn’t at stake. And at the same time, there’s an abundance of hope. The nuts and bolts of my situation are that in a few days, I’ll be scanned and MRI’d and checked out in every way possible; that once my cancer has been “staged” (once we know how advanced it is), I’ll start weeks of radiation treatment; then I’ll be operated on and then, perhaps, receive chemo, although that’s still only a possibility (one that I won’t even think about until I have to).
Written out on paper, this looks bleak as hell. But it isn’t. Know this, because it matters. Know that I’m being treated in one of the best medical centres in the world for my illness. Know that the surgeon (a brilliant woman and extraordinary human being) I met just 10 days ago looked at me with the truest, most direct gaze and said that we would be heading toward curing my cancer. Know that she said this with genuine confidence and optimism. Know that the blood work that came back two days ago was very encouraging. Know that aside from the symptoms of my illness, I show no other signs of ill health, and look pretty great.
There. That’s the surface of this experience. It’s the generic. But beneath it is the very personal narrative of living with illness—with this particular illness. I don’t propose to turn REEF into a cancer diary, but I can’t ignore it either as it has, in important ways, hijacked my life.
During the first moments and days after the diagnosis was delivered by the gastroenterologist, each hour was about bouncing along waves: some of emotion, some of shock. Her face (yes, I’ve been treated by two female doctors so far) was so serious—deadly serious, really. I was with my son Simon and with my husband in her office, and she frightened us with her intensity—with the urgency of her directives.
My thoughts and feelings that overrode everything else at that time were of tremendous regret—at having neglected myself, foolishly, stupidly, for so long—and painful guilt, of the kind that comes from the implacable truth that what is hurting me is also already leaching into the lives of the people who love me most, and causing them suffering. These combined to create a deep sadness that threatened to erase every other consideration…for a while.
What was absent, what IS absent, is shame and embarrassment. Though I now carry the awareness of my cancer with me every second, I don’t feel tainted by it. This comes as a great surprise to me. I wrote to a dear friend earlier this week that it seems that whatever self-pity or squeamishness or revulsion I might have felt about being sick with cancer when I was a young woman, is gone. I don’t even think of the tumour, the illness, as something alien. These cells were produced by my body, and they are part of me for now. Just as my gall-bladder malfunctioned for years, so are these cells malfunctioning and wounding me now.
I’ve often seen people respond to their diagnosis of cancer with an immediate, overwhelming desire to get it out of their body as soon as possible, as though the very thought of it makes their skin crawl. But I’m surprised to realize that I don’t feel quite this way. I will be happy when the mechanics of my digestion are able to resume more normal functioning, but I don’t feel that I’m living with an invader (though I fully understand the meaning of metastasis). I’m not sure whether this is a good thing or a bad thing, but I feel less anxious, which helps.
The diagnosis of this cancer swept all of the scribbles off my agenda. I will not be able to work for a year. This is a certainty. Having to cancel classes, knowing that I will not have the richness of adult education and the joy of daily contact with my students in my life for at least a year, is a loss that I will feel deeply. I do already. There will only be targeted, fixed dates in my agenda during the next few months: the dates of treatments and tests, and of course the date of our move, July 5th. After that, all of the radiation treatment dates will be blocked. And then the date of surgery. These are the new signposts of my life. These are the brass tacks.
But already, so much has filled these agenda hours, each symbolic rectangle of time has been coloured in hues of green, blue, red, white and everything in between. These are the shades of love that have illuminated the past weeks. I have been at the receiving end of an outpouring of love and support—from my sons, husband, family, friends, students and neighbours— such as I never thought possible. Understand that, as always, this is everything. Know that love and support provide the alchemy that changes pain and fear and pessimism into acceptance and hope. Know that it matters. And know that right here, right now, it’s why I feel happy. Apprehensive, concerned, shaken, fragile, but genuinely happy to be alive, and fortunate, despite recent events.
About this video: Shot this morning, such a singularly gorgeous morning: even the sun feels upstaged.
The leaves speak and the birds answer.
(yes, that’s the sun pushing up off the horizon, flickering)
I’ve reminded myself and others that the “diagnosed” me is the same person who packed 250 boxes (with help!) and got this house ready for sale at super-speed just a few months ago while teaching full-time, and did all of those other things that have made up my life for years…while sick with cancer. As my surgeon said to me: cancer and I have likely been roommates for 5-10 years. It’s good to remember this. We walk with shadow every day: we’re simply made to look towards the light.
My cancer has reminded me of a book I read a few years ago, written by Gabor Maté, a palliative care specialist, psychotherapist, and caregiver for people who are living on the street, titled When the Body Says No. It came to mind almost the second I heard that I was seriously sick. It explores “the intimate connection between mind, body, and spirit through life stories and intimate interviews with dozens of people who have lived, died, and sometimes overcome chronic illnesses”. It speaks of “the cancer personality”.
There’s a deep lesson for me hinted at in the pages of Maté’s book. It’s a lesson I had already begun learning these last few years (a bit late) about self-love; about boundaries; about accepting one’s value as a human being; about the limits of what can be absorbed into a body; and finally, about the fact that receiving is the crucial concomitant of giving.
On June 6th, when we got home from the gastroenterologist’s, my son Christian sat with me right here at the dining room table, and, with the loveliest smile on his face, and looking right into my eyes said:
“Well, Mum, this is the moment.”
And when I said: “What moment?”
He replied: “The moment when every bit of love you’ve ever given; every kindness; every soothing kiss or hug; every act of patience and presence…this is when it all comes back to you tenfold.”