Though it feels like I have to just hang in there through chemo, the fact is that I can’t and shouldn’t exist in some kind of holding pattern. I have to go and live as fully as I can.
This may be a peak. How I feel right now could be the best I’ll ever feel again…
I can’t say—I don’t know.
What I know is that there’s the possibility of so much more pain; of pain so pervasive that life narrows, and you enter a tunnel and for a while, it’s as though that tunnel has no end.
Someone I know, care about and identify with effortlessly, is suffering in this way right now. Or she was all day and night yesterday, when I could think of nothing else. I won’t name her. Her torment is as real as it is private.
The cause of her suffering is the cancer that has invaded her bones. Yesterday, she reached the point where her morphine no longer made a difference. I wasn’t with her, but I know that she is tough, and willful, and that her agony had to have been…unspeakable.
Knowing that someone is suffering the way she was, and has been for days, turned me inside out. Lying in my bed last night, I felt connected to her through invisible fibres that functioned like nerve endings.
Those who love her are all tethered to her pain, and every thought/prayer sent toward her also pulls on that part of the tether that is connected to us.
It reminds me: do not take a second of wellbeing for granted.
There is suffering everywhere—cancer, disease, are not its only claim—but this pain has a face, an identity known to me and everyone close to her; and that’s why it’s so easily sensed by all of us.
What can I do? What should any of us do?
Be mindful of that suffering. Don’t dare push it away when that connection is painful. Share it in spirit. Be present to it. Ache for the one suffering. Bear witness to it. Send love, send grace…
And then yell and howl publicly in proxy pain, till the palliative medical team gets it right. Till the loved one’s nerve endings quiet.
There IS a cessation to suffering. At the end of that tunnel is light and deliverance.
My son Christian’s life as an emerging actor has already taken him to places I would never dare to explore. One of these is theMcGill Simulation Centre, which is an integral part of the medical education of many health practitioners in Montreal. He works there part-time.
Sometimes, Christian’s only job is to offer up almost every inch of his body so that med students can learn ultrasound techniques. At others, the full range of his acting skills is tested, as he works with other actors to bring to life scenarios for young student MDs and even seasoned practitioners, simulating situations that are designed to test the maturity, knowledge, technique, resourcefulness, empathy, interpersonal skills and even just plain resolve of the caregivers.
Listening to his stories has made me realize how difficult medical training is and how much is expected of the students who are often only in their early twenties. It’s helped me to understand how much thought is put into the training of physicians, nurses, occupational therapists and everyone else who passes through there, and helped me to see that acting at its purest is the art of compassion.
Last week, Christian was given his biggest challenge yet. He was asked to play the role of a young adult with cerebral palsy whose symptoms include spastic diplegia and spastic dysarthria. In this especially long and multi-scene scenario, his character, Pat, is fighting to maintain an independent life in the face of increasing pressure to place him in institutional care.
A few days into his preparation, I asked Christian if he could show me how he was coming along with his character. In seconds, Christian transformed himself right before my eyes. His body shifted until it had assumed a strange, distorted angle on the couch. His head twisted backward in a way that exposed his neck and made his chin protrude oddly, as though pulled leftward by a painful force and constraining him to look at his interlocutor from an obtuse angle.
And then he began speaking. And there was no more Christian. Everything that makes Christian himself had been stripped away and what was left was a thin, monotone and laboured voice, struggling to express itself. Every word seemed to come at a cost to him. Only his eyes were steady. And distressing.
He didn’t make me uncomfortable or embarrassed: he shocked me. Being with him and paying attention to what he was saying, I realized that despite the clarity and intelligence of the thoughts he was expressing, my own mind wanted to reduce him to so much less than he was.
And it became painful to watch my son this way. And it made me cringe, because I know, now, in a way that I didn’t before, what the suffering of this person Christian had briefly become must be. And the struggle. And the injustice of being locked inside a body that cannot come close to expressing the expanse and the dignity of the person inside.
And the vulnerability.
When he came home after his performances that day, Christian told me that he knew that if Pat had any chance of avoiding institutionalisation, that he would have to make every health professional in the scenario like him—fall for him—and begin to root for him.
This is beautiful work.
Every time Christian becomes Pat, even for just a flash, my eyes well up. He does it because he knows he’ll be playing him again soon and he wants to keep him vital and true. And because he cares about him.
This all coincided with a period of sickness that rolled like a wave through my family. One of my sons had fever for three days, recovered for a week and has just relapsed this weekend. His twin was also intermittently feverish and eventually wound up with bronchitis, while Penelope and Graeme, his children, were treated for tonsillitis, otitis and bronchitis. Then it was my turn. Two weeks in, I’m still coughing, but at least my strength has returned.
Until this recent family epidemic, I hadn’t been ill for several years. Sick with fever last weekend and feeling weak and wobbly, I felt vulnerable and diminished and a bit scared. I couldn’t be sure that I’d be able to work the following week. I couldn’t be sure I wasn’t incubating pneumonia. I couldn’t know for sure when I’d be able to go get groceries, or clean the house or do any of the mundane things that make up daily life.
All this brought about by a simple virus. Everything happening out in the world took a back seat to the necessity of recovery. To bringing my body’s affliction to an end.
These past few weeks, I’ve been schooled by life.
Actually, I believe that this should be a daily occurrence, as constant as sunrises and sunsets. Every day should be about gathering in more learning and seeing more clearly. But there’s something about human consciousness that’s flighty and inconstant and it causes us, me, to check out or else be diverted.
At the same time, reliant as I am on the stream of information pouring into my life through the mushrooming screens that have become my most used windows on the world, I’m not growing wiser. My representations of life are hardening around ideas and actions that test the strength of my connections with the world, that wipe away understanding and compassion, and fuel fearful, anxious feelings.
Recently, I’ve felt more like a greyhound on a track than a sentient, mature woman.
And then there was Christian and Pat.
I marinate every day in news about wars, walls and the billions in currency it takes to make each happen; about mass migrations and refugees and camps on almost every continent that have become lawless dead ends where violence and starvation have set up permanent residence; about immigrants, both legal and illegal and about how, for some, living off the radar without status is the brightest option; about national greatness and sovereign borders which seem to depend more and more on turning inward and away. About Others. Aliens. About Them and Us. More recently, about white-nationalism and just this week, an anti-egalitarian, anti-democracy movement skittering behind the scenes and referred to as Neoreaction or NRx.
It’s a swirling vortex of what’s worse about us. Its clamour is drowning out the calls of our better natures. It’s smothering our compassion with darkness. It’s making us blind.
I think that our civilisation needs retraining. I think serious intervention is required to help us see what’s behind our outer shells, to understand every individual’s struggle, and to embrace the expanse and the dignity of the person inside each one of us.
I arrived home yesterday depleted. That’s really the only word for it despite the fact that it was a good day. Wednesday is my hardest and longest teaching day. Paying such close attention to people who are nestled so closely around me for hours on end may, in fact, draw out of me more than it does some of my colleagues. Perhaps more than I’m really able to give.
At the end of such a day, it makes sense that I just wanted to head home to lay low, to have several cups of steaming tea and soothe my vocal chords.
I dropped all of my bags, set the kettle on the stovetop and opened this laptop. I do this to reconnect with the world that I’m drawn away from by my work and my absences. I move from my email inboxes to Facebook, seeing what I’ve missed (or briefly caught on the screen of my IPhone before it flitted away).
It’s a highly interactive but quiet world that is both a highway of engagement with others and one of my favourite places of retreat.
I discover brilliant sites online that I subscribe to happily and which now fill my Inbox every day with notices. I skim through the online papers though there are too many. I visit the surface of the lives of the people I care about, wanting to see the evidence, through pictures, posts and messages, that they’re well, that they’re still there. I’m apprehensive about letting any of them fall through the cracks of my awareness.
When I got home yesterday, Christian and my husband were sitting together watching something on Netflix. Everything about the scene and the feeling in the house was benign and calm, except me.
I couldn’t bring myself to go sit with them; it was too soon. So I opened up this laptop. And scrolled. And scrolled. And scrolled. And was inundated by posts about the Trump presidency. Facebook’s algorithms saw to it that all of them—from the most considered and balanced to the most polemical and shrill—were unrelentingly distressing, worrying, disturbing, depressing and alienating. This stream was magnified by the posts of friends and their friends from both sides of the border who are, as I am, in agony.
This election year in the country of my neighbours to the South has filled me with a sense of dread. There’s a darkness in the world that has revealed itself and that clings to me.
I know how this sounds. But I also know that I’m a healthy and emotionally balanced, level- headed, very intuitive woman and I trust what I’m feeling.
I’ve been alerted.
I feel the breath of something that wills ill. Something that’s tearing the social fabric in an unendurable manner. Something that it may take decades to heal from. Something that seeks to separate us from each other and divert us from what we must do and become.
More immediately, it’s a dark energy that will envelop and endanger the people I love: my students from all around the world, my children and grandchildren who will be more wounded than I because they’re still headed into the biggest portion of their lives.
There are so many voices crying out these days. Some of them (many?) screaming painful, ugly, vile things that infect everyone. But many, too, yelling out like sonar beacons in search of kindred minds and spirits and the reassurance of these connections. People of kindness and conscience.
I don’t feel that there is an US and a THEM.
This dark thing that hovers over us all is about inequality, despair, fear, tribalism, malice, innocence, ignorance, corruption, rapaciousness, cynicism, greed, misfortune, selfishness, the degradation of modern life, insecurity, exploitation, and a sociopathy that normalizes and institutionalizes everything that breaks down the connections between us and the planet which is our shared home.
Facebook has hugely amplified my bewilderment and sadness in the wake of the rise of Donald Trump and his entourage. It’s true. Sometimes, what I read there makes me queasy.
I think maybe that’s part of what was happening to me yesterday when I sat down after work. I just felt sad. It was a heavy and cold feeling. It was that longing for a good cry. It’s what creeps in when my energy is low.
In recent weeks, I’ve come to understand that maybe suffering is part of what I’m meant to experience. When there’s little else a person can do to effect immediate change in the face of a terrible wrong, owning the suffering that emanates from that darkness is something. It’s a valuable first step.
This seems to be a shared sentiment because, beyond the unrelenting stream of post-election news online, there are the cries of many voices expressing pain and distress. And also a desire for something good and just and universal.
From the pain comes resistance. I’ve felt this too and I watch its myriad expressions and modulations appear online every day, especially among artists and writers.
I’ve recently been invited to join other writers searching for a means to combine their voices in an expression of resistance to the darkness, certainly, but also, hopefully, to build pathways of understanding and unity between us.
I want to be part of this movement, but I know that I’m not a political writer. I hope I’ll be able to find a way to contribute something that’s meaningful and useful even though it’s personal.
On the table yesterday, I found a package from Amazon addressed to me (most of them are and most of them contain books). Inside, I found three volumes of Mary Oliver’s poetry. Lean, lovely books that weigh nothing in the hand but somehow have such import.
I opened the smallest one first, A Thousand Mornings, and read one poem after another. At first, I thought that I would break down and cry—her work is so beautiful—but I couldn’t stop reading. There was such grace and truth in the short poems I pored over that I felt them lifting my spirits almost immediately. I can only describe this as a moment of quiet bliss.
The ones I found most beautiful are the ones that spoke to the pain inside me yesterday. Who knows which will resonate in a week or a month from now.
I met up with my cousin yesterday. She’s also my godchild. Sixteen years separate us. She’s a twin. On most week days, during the summer she was born, I used to cycle a dozen or so kilometers to the duplex her parents rented, to take care of her not-quite-three-year-old brother, and help out any way I could while her young mum (my aunt) cared for her newborn daughters and tried to finish writing her master’s thesis.
That’s to say that I love my cousin immensely and that our connection has deep roots. The fact that she’s a twin, and that I eventually also had twins, has only strengthened our bond. But our lives are full and we see each other too rarely.
Yesterday, we sat with our coffees and tried to catch up with each other’s lives. When there’s so much to say and so little time to say it, conversation does a strange thing: it cuts to the chase.
And so we found ourselves discussing insights that come only with time and distance.
If you were to represent our lives on a timeline, you might expect to see two parallel lines on which the usual signposts of life—youth—studies—romance and coupling—establishing a career—children—mirror each other’s, with hers lagging behind mine at a consistent interval.
But it isn’t really so.
In part, that’s because I got off to a very early start in some things, and she in others. We made different choices and we live with them.
What an easy and fruitless explanation.
I’ve been thinking a lot about our conversation. I’ve had these thoughts about the road less traveledand the road not taken—complementary expressions (and titles)—one inspired by the other, that are intended, in part, as meditations on the meaning and responsibility of choice.
This morning, I looked up Robert Frost’s poem to refresh my memory (I’ve included it at the end of this post). I followed him from the fork in the road that brought him to a place where one path wouldn’t allow him to see too far ahead: to “where it bent in the undergrowth”.
I followed him as he looked from that path to the other, the one “having perhaps the better claim, because it was grassy and wanted wear” and chose that one, the one less traveled by, which “has made all the difference.”
It’s made me realize that you can read it over and over and understand it differently each time, according to where you’re standing on that day.
What strikes me most readily is the traveler’s avoidance of the road that doesn’t allow him to see too far ahead. I’m struck by his delusion that the other is really any different. Because even a straight line to the horizon offers only a partial glimpse of the road ahead.
We place enormous stock in the choices we make in life, and we should.
My cousin and I talked a long while about those. Such conversations inevitably lead to “what might have been”, the weight of which increases as we grow older.
Looking at her beautiful face that is just beginning to show the slightest evidence of her age, and her smile which is as luminous as it was when she was still a preschooler, you would never know what she carries with her. The pain. Held inside her from childhood and still poking gashes into her like a shard of glass. How it changed the way she walks in the world. How it has diverted her from who she might have been.
For some of us, those injuries come early on in our lives and for others, only much later. Sometimes they’re so savage and unrelenting that they break something inside us. Sometimes, they drip, drip, drip, drip until they’ve created a hole that we’ll never be able to fill or close.
But all of us are wounded at some point in our lives. All of us sustain blows that we rise from. All of us struggle to integrate suffering.
How different would my cousin’s choices have been had she carried a lighter burden?
That’s a question I ask about my own life as well.
It’s enormously important and also futile.
It matters: not because it’s answerable—it isn’t—but because it leads to self-knowledge and to a self-awareness that generates the truest compassion.
It has also led me to a deeper understanding of all that flows from WHATWE CANNOT CHOOSE.
* * * *
On Monday August 22nd, I went for an afternoon walk with my youngest son, Christian. It was his 25th birthday, but we’d done most of the celebrating that weekend.
It was a cool and breezy day and that’s probably what convinced us to head towards the Library and then see where we wound up next.
Across the street from the Library is a cemetery that belongs to Saint-Joachim parish, which is three centuries old and situated a few kilometers away, on the lakeshore, the dead having long ago exceeded the space made for them near the parish church.
My father’s buried there, as are loved ones from generations preceding my parents, but I hadn’t visited it for years.
I’m not sure why that is, because I love cemeteries. When I went to London to visit Christian last year at almost the same date, one of the first places he took me was Brompton Cemetery for a long and lovely walk.
Most European cemeteries are old enough to have been partially reclaimed by nature: the trees have grown tall and many headstones—monuments really—have long since begun leaning back toward the earth.
That’s not the case at the Pointe-Claire cemetery. When my dad was buried there in 1989, only ground plaques were allowed. It bothered me and it bothered my mum that people could so easily walk over the stone upon which my dad’s name was engraved.
About 10 years ago, they changed the rule, and so my mum decided to have a new monument made for my dad’s grave, and asked me if I’d go with her to choose it. While we were there, she told me that she also wanted to have the name of my stillborn son—Gabriel—inscribed on the stone. The circumstances of his death were such that no memorial of any kind marked his passage through our lives. I accepted of course. It was such a kind and sensitive offer.
That must be what drew me to the cemetery with Christian on the day of his birthday. There we were, together, searching for my dad’s new headstone. It took a while because the cemetery has expanded in the years since I last visited and I was confused by the extra rows.
Then I found it. Christian came to stand by my side because it had immobilized me. And there we saw, below my father’s name near the base of the headstone, the inscription: “À LA MÉMOIRE DE BÉBÉ GABRIEL DAOUST”.
It was beautiful to see. It marked a traumatic event that occurred more than a quarter century ago. We stood there for a while, whispering how lovely it was and what a good idea my mum had had.
My mouth had gone dry and I felt a bit unsteady. We began walking toward the edge of the cemetery which overlooks a hill, and then, as though someone had thrown a switch, my heart pounding, the tears came. I said to Christian: It’s 26 years away and it’s two seconds away. Then he took me into a gentle hug and there we stood, embracing in the cemetery on a sunny summer day; his birthday. And it felt like the most appropriate thing in the world.
It was life coming full circle. Because you see, had I been given the choice, I would never have chosen to go through the dark and painful experience of losing Gabriel. I would have opted for “the better claim”, the greener path.
I understand that it’s good that life gave me no choice. I wouldn’t be the person I became. By choosing to not go towards the pain, I would have sidestepped one of the deepest and most resilience-building passages of my life.
Had I done so, I would never have had Christian.
On his Facebook page for August 22nd, Christian posted pictures of the headstone and a selfie he took of us both standing on the edge of the cemetery, in that moment of utter vulnerability and tenderness. They were accompanied by the following message:
“Today of all days, I should give thanks to my mum and honour one of my namesakes. A quarter century on this planet and I’m feeling really lucky. Thanks everyone for making my life grand.”
Christian was born nineteen months after Gabriel.
Had I been able to choose, Christian is WHAT WOULDN’T HAVE BEEN, in my life.
I came across this quote one morning. Scanned it in a flash. It felt so familiar. Almost toss away. A well-worn reference to being young at heart, or to the importance of cherishing my inner child. Trite.
And then I read it a second time, and noticed that where my eyes had registered child, they should have read childhood.
It was early and I sat staring at the screen, bothered by the way that word altered Sutzkever’s message.
What did he intend? What does it mean to “become older” ?
I looked him up, and learned that he was a great Yiddish poet and survivor of the Holocaust. Born in Belarus in 1913, he later lived in Lithuania and was sent to the Vilna Ghetto during World War II.
And I thought: well of course, he was 26 when the war began. Memories of his childhood would have sustained him; he would have drawn deeply from that well of familial love, protection and relative innocence—and then the words “you never become older” : those foundational memories acting as a talisman of sorts, warding off the damaging effects of disillusionment, cruelty, suffering and despair in a world made by adults.
I’m not sure of any of this. I don’t even know whether he wrote this or spoke it. And so, what I have is what his words mean to me and might mean to anyone else.
I’m puzzled by the phrase.
“If you carry your childhood with you, you never become older.”
There’s no if. We all carry our childhood with us. What matters, then, is only whether its weight supports and grounds us or instead burdens us—and if so, how heavy the burden is.
If I polled a bunch of people asking them to list the distinctive elements of childhood, what would they come up with? Maybe something like:
It’s precious because it’s over so quickly;
It’s the most carefree period of a human being’s life;
It’s usually the healthiest period, too;
It’s when humans change the most rapidly;
It’s when we’re most curious and able to learn;
When our minds are most plastic;
It’s the only age of innocence;
It’s when everything seems possible.
A positive list. But few of those elements can be carried forward into the future because time runs out on them.
I’m bothered by statements like Sutzkever’s that are predicated on the notion that childhood is the space-time of optimistic possibility from which we slowly but surely lose our way.
I’m bothered by the unintended pessimism of it.
Childhood is frequently the place of our deepest wounds and traumas, and when this is so—especially when this is so— it becomes either the crushing burden that stunts us for life, or else a powerful agent of resilience; of growth through experience.
I resist the implications of Sutzkever’s message and others like it because I don’t believe that a happy childhood is a sine qua non for a happy life.
I think it’s probably true that:
“Anybody who has survived his childhood has enough information about life to last him the rest of his days.”
― Flannery O’Connor, Mystery and Manners: Occasional Prose
The wryness of this makes me smile.
I see childhood as a crucial period of growth on a lifelong transformative continuum.
We speak of childhood as an idyll, but I think that our vulnerability in childhood is one of its most poignant dimensions.
Watching my grandchildren Penelope (four), and Graeme (two), grow up is a daily reminder of this. While I feel all kinds of strong impulses to protect and shelter them, I believe that this same vulnerability is childhood’s precious bridge to adulthood. From our places of shelter and support, we learn to go out into the world and live fully.
Why wish to never become older?
Just a few months ago, as her father—my son Jeremy—was putting her to bed, Penelope had a moment. Lying above the blankets, her lovely eyes welled up and she turned to her father and said:
“I miss myself when I was a baby.
Oh papa, I’m so tired.”
Maybe she felt old that day.
Maybe she has already begun to understand that she’s leaving her childhood behind a little bit every day.
The next morning, she woke up rested, happy and looking forward to what the day might bring. Four years old and fresh as a daisy.
She and her brother do this every time they go out into the world and gather experience, as they, like their parents, constantly reinvent themselves and grow older together.
“Because never in my entire childhood did I feel like a child. I felt like a person all along―the same person that I am today.”
“This year, the “Burning Man” festival in Nevada featured its first artistic piece from Ukraine. Alexander Milov’s “Love” was the first Ukrainian piece to receive a festival grant in 30 years. The sculpture consists of two hollow, metal frame human silhouettes, one man, one female, sitting back to back. Sculptures of children touch inside of them (and light up at night).
“It demonstrates a conflict between a man and a woman as well as the outer and inner expression of human nature,” Milnov explains. “Their inner selves are executed in the form of transparent children, who are holding out their hands through the grating. As it’s getting dark (night falls) the children start to shine. This shining is a symbol of purity and sincerity that brings people together and gives a chance of making up when the dark time arrives.” “