WHEN THE BODY SAYS NO

A few minutes from home, on a gorgeous June day

Part of the “This is the Moment” series

June 20th, 2018

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.

Today. A perfect day (taken June 21st, on my doorstep)

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.

Version 2

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)

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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.”

What a beautiful thing to say.

Simon, Christian, Jeremy, Sylvain, Anne, Mum,  Loulou, Lise, Cindy, Gail, Vickie, Marie, Danielle, Ann, Patricia F, Sari, Rana, Patty B, Karen, Madeleine, Céline A., Marie-Claude, Mario, Michel, Leslie, Cate, Mira, Mark, Armina, Ben, Fanny, Catherine, Louis-Marie, Luc, Denyse, Marie-Hélène, Sophie, Anne-Marie, Charles, Mary, Charlotte, Debbie, Judy, Michelle K, Julie, Donna…

THANK YOU.

MERCI.

Nothing but blue skies… June 21st, near my house

 

 

 

 

 

 

 

 

BETWEEN THE REGIONS OF KINDNESS

I write at the urging of the voice inside my head, the Great Narrator of my small life, the one that seems to never shut up but which I trust doesn’t indicate mental illness.

I don’t know that it ever stops to rest, but I don’t mind because I know myself well enough to recognize that without it, I’ve lost a powerful way of functioning in the world, of processing my experiences and understanding my life. Of understanding LIFE. I’m no longer sure that I could find my way without it.

Shields, Frederick James; Man Repels the Appeal of Conscience; http://www.artuk.org/artworks/man-repels-the-appeal-of-conscience-57014

It’s crowded here, in my head, because there’s a second voice. It’s a smaller, primal, timorous voice that I imagine living in the dark, and that I know for sure dates back to the beginnings of me, because it’s embedded with some of my first memories. Its utterings are uncomfortable and seem to always come at a cost— to be the result of an inner struggle.

It’s the voice of my conscience.

When I was a child, it felt like my conscience spoke from a pulpit.

I eventually figured out that it was being egged on by the voices of my parents, my teachers, most adults in fact, and my peers. It felt like its principle aim was shaming. Which is why it penetrated me so deeply.

Pacquette, Elise J. M.; Protecting the Heart; Bethlem Museum of the Mind; http://www.artuk.org/artworks/protecting-the-heart-192960

I carry inside me a list of memories of my worst childhood moments. It’s the doing of my conscience, which still spits back up, more often than I’d like, mini-documentary remembrances of me being mean, petty, ugly.

Some of these go back to when I was barely five or six years old, but most evoke minor events that marked my passage through grade school and high school. Moments when I betrayed a friend; a moment when I tormented a classmate who was already marginalized and insecure; moments when I spoke against another for no other reason but malice and competitiveness; multiple episodes of schadenfreude.

(It’s hard not to write shameful here)

As I grew up, I often replayed these mini docs in my mind and then imagined myself atoning for them. In my daydreams, I still sometimes conjure up the person I harmed and try to express my regret.  What’s interesting is that over time, the reactions of the victims in my dreams have shifted and now, they don’t seem to remember any of it very clearly: like it’s just water under the bridge. Does this mean that I’m beginning to forgive myself? If so, I still have a long way to go. If I met any of these people in the street today, I feel sure that I would still want to dredge up the memory and apologize.

Sims, Charles; Crowds of Small Souls in Flame; Bethlem Museum of the Mind

My conscience has kept a precise ledger of my UNKINDNESS. When I was a young child, my failures of kindness were more often lashing-out impulses than anything premeditated. As those moments unfolded, it felt like nothing could override them.

I was powerless before my unkindness. And then less so, and then less so still, as I grew up.

Kindness is a beautiful word that’s strangely hard to pin down. In French, it’s said to mean a mixture of goodness—bonté—plus a blend of gentleness-kindliness-warmth-sweetness- generosity referred to as gentillesse.

Perhaps it’s simply goodness and benevolence in action.

Kindness of strangers, abstract by Blenda

I aspire to be a kind person. A kinder person. But I’m not at all sure that I am. What I feel certain of is that the wellspring of both unkindness and kindness is pain.

That explains its grip over me in childhood. Kids absorb pain without any of the filters life experience provides. They can only take so much of it, raw, into their small bodies, before it starts to splash back out in ways we and they don’t always recognize and can’t always control.

In adulthood, more is expected of us.

“I’ve always depended on the kindness of strangers” is a wonderfully mnemonic line that resonates, whether or not we know its origin. It’s a beautiful, terrible statement about our worst fears—abandonment, loneliness and dependency—and the starker truth that it’s those we love who hurt us most.

Raising my children, working in schools and now in companies, it almost seems as though the last two decades of my life have been an immersion in the lives of strangers who first are “others”, then become acquaintances, and then, often, friends.

Mostly, what this process has done is helped me to realize how quickly a stranger can become someone to discover, to know and to care about. More often than not, someone to love.

With each new class, with each new room full of strangers, I’m reminded that my openness to others is as simple as a smile (well, many, many smiles, whenever possible), grounded in my empirically supported faith that there are few human beings on this planet with whom I cannot find points of connection and kinship.

In this context, kindness comes easily.

Banksy, Kindness

Where I find myself failing is where most of the pain is: among the people I love most, if not always best. I’ve discovered that I have limits that are real and firm, and that I’m capable of a coldness that I didn’t think possible.

My coldness is a pain response that I’ve watched gain strength over time. It’s taken me years to figure it out, but I think it kicks in when I feel unsafe in the company of someone close to me. That can happen when being with a person feels like being invaded; when everything about an interaction with this person shuts me down and makes me feel like I want to hide inside myself.  It can also happen during periods when being with a person infects me with negativity, anxiety, or a sense of being controlled or pushed around. Sometimes, it’s simply that someone else’s pain is overwhelming my ability to cope.

 

In those instances, I can be so remote. I’ve cut people off for weeks and months at a time. It’s unkind, and it comes from pain and causes pain. But it feels like self-preservation, and I think that’s probably why I don’t feel as remorseful. The wellspring of my unkindness is my own pain.

And then, unexpectedly, the very real, stripped down pain of someone I love, or someone I don’t yet know, can pull me close once again. That’s the gravity of kindness.

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These are unkind times, when under the guise of self-preservation, many of us now ignore the pain of others and reject kindness, condemning millions to a place Naomi Shihab Nye calls the desolate landscape between the regions of kindness.

It’s a place where none of us are meant to live.

Ernest-Pignon-Ernest-Untitled
Ernest Pignon-Ernest, Untitled