THAT SMALL STIFLING PLACE

Fire Tree,

Part of the THIS IS THE MOMENT series.

A month ago, at a time which roughly coincided with the beginning of my second year in this clinical trial and the repetitive sameness of the life it has reshaped for me, something unexpected happened.

It was Monday morning, the chemo week Monday when I head into the CHUM to have my pre-chemo blood tests done, and to see my research nurse and one of the oncologists from the team who treat my cancer. Every part of this day is so familiar that it has become routine—from the moment I hop on the train at Ste-Anne-de-Bellevue to the moment I get out of the metro and follow the short tunnel that leads directly underground to the first floor of the CHUM.

I often stop at the small café there and grab a decaf coffee before heading toward the elevator that takes me to the 14th floor. Once there, I immediately register my presence by swiping my medicare card under a scanner which then issues me a small white paper on which is written a number—something like PL025 (PL for prélèvement, or blood test). My nurse and doctors are also immediately notified of my arrival. It’s a routine I’ve performed dozens of times since I first began treatment. But four Mondays ago, nothing went to plan. The moment I stepped off the metro and started my walk, something wavered inside me. My autopilot shut down and with no warning at all, my eyes filled with tears and there was such pressure in my throat that I could barely swallow.

I was coming undone. Having some sort of quiet but perfectly visible meltdown. I continued walking down the hallway, past the angelic guard who greets every single passerby with a smile and words of wisdom, taking deep breaths and waiting for this destabilizing malaise to subside, but a wobbly inner voice repeated only Oh-oh, you won’t be able to get it together—you won’t be able to stop crying…, drowning out the part of my brain where my wits were being overridden and which shouted: “What the hell’s going on? You’ve never felt this way before. You LIKE the CHUM. It’s Monday, the EASY day. Get a grip!

 But then came that vacillating, gushy need to cry again…

God. Well, this was a new low. I entered the elevator with shiny red eyes and the sniffles. Once on the 14th floor, I scanned my card while snot clogged my nose and throat. You know this feeling if you’ve ever had a good sob. Your pulse is elevated, you feel unsteady. Your breathing is shallow and rapid. You tremble. It’s completely embodied.

When my nurse, Chantal, arrived to greet me and asked how I was, I blubbered, like a baby, a rambling apologetic explanation that contained a lot of sorrys (or in this case, Désolée, Excusez-moi), rattling on about not being sure exactly why this was happening, although I did have similar experiences at home; that it didn’t even mean that I was sad, that it was just my wonky filters…

Chantal, who is the most serene human being on the planet, smiled gently, then hugged me and reassured me that I wasn’t the first patient to have emotions like this, and that she would be back once I’d had blood drawn, and we’d do my weigh-in + vital signs before seeing the doctor. Business as usual, was her message.

illustration by Jon Han, New York Times, June 25th 2016

 And so I sat and waited with sorrowful pink eyes and Kleenex in my hands, feeling mortified. I was on the cancer floor—Cancérologie—and I was such a depressing sight! What must the rows and rows of fellow waiting patients be thinking as I sat or walked here and there. Her treatment must be going poorly, or She must have recently received a brutal diagnosis or bad news…

And STILL, my chin was quivering, my mouth was dry, my breathing was shallow and my eyes, determined to remain fountains. When I was finally called in to see the oncologist, it wasn’t my primary physician, Dr. Aubin; it was Dr. Loungnarath, a lanky, curly-haired, imperturbable, youngish gastro-intestinal surgeon in oncology, who greeted me.  And of course, the minute he asked: “Comment allez-vous?”, I started blubbering again, as Chantal watched, still smiling at me with compassion.

Dr. Loungnarath looked at me, and said (in French): “Well then, we’re going to give you an extra week off.” To which I responded a shaky “Thank you, I think maybe I’m a little weary (sniff-sniff).”

(Surely there are more dignified ways to get an extra week off from chemo.)

* * * *

I was back in chemo last Wednesday, smiling, and my composure regained. My veteran patient’s game face back on. But this time I carried with me a slight fear, or perhaps more of a doubt that I can count on myself.

What happened three weeks ago?

What short-circuited all of my defenses and let the floodwaters loose? (and what were those waters all about?)

I sat down and made a list of possible suspects, of possible triggers. It includes:

How small my life feels at times.

How circumscribed my days are.

How similar the weeks are: one on/ one off.

How small is the loop I live in.

How altered the future appears.

How I feel from day to day—the limitations of my body going through chemo

The limitations of my body in illness.

I suppose that what this amounts to is fatigue and a deep, bone weariness, that I’m mostly conscious of when it reaches a tipping point.

And this is how and when I slip into self-pity.

In her memoir Gather Together in my Name, Maya Angelou wrote that : “Self-pity in its early stages is as snug as a feather mattress. Only when it hardens does it become uncomfortable.”

Have I allowed myself to snuggle up with such a nasty emotion? It just may be. And if so, then I can say that self-pity is a small, stifling place that I don’t want to go back to.

Since then, so many things have washed over me. One of them was a simple conversation with Simon one evening in the den, where we were watching Netflix together. It was perhaps one of the more melancholy and intense shows, and we started to talk about sadness, and how people deal with the pieces that are missing from their lives. Simon always has a broad perspective, and as we chatted, he mentioned that human beings are programmed to fixate on the negative aspects of their lives—on the missing or broken pieces; and he said that if you tell someone 25 positive things about them, and 1 negative thing, that they will almost surely fixate on that one negative thing…That we are made that way, And so he said: I try to not allow my mind to go there—to those places of dissatisfaction and unhappiness. I try not to let my thoughts wander there. And I say to myself: you are one of the luckiest people in the world. You are one of the luckiest people in the world.

 And I smiled. Because I remembered an exercise I used to have my students do in French classes, It was a questionnaire designed around select statistics and the world population. Things like: How many people in the world earn less than $5 a day? How many people earn less than $10? $2? What percentage of the world population has a university education?…

And of course, the survey revealed two things: the first was that, by and large, most people have shelter, access to potable water and access to the internet via cell phones; the second was that everyone in the classroom, because they are living in Montreal, is likely to find themselves among the top 10-15% of the world population in anything that’s related to affluence and abundance, and a social safety net, and standard of living.

I remember how the first time I put a group through this (I had them guess at the numbers in teams—they chatted away like mad), all I felt was indecently fortunate.

And so, Simon’s exhortation to focus on our common great, good fortune; and on the plenitude that is ours; and on the love, friendship and family; and to make gratitude a habit…

Well…it sure beats self-pity.

As a matter of fact, at a time when we are actually speaking in urgent and terrifying terms of apocalyptic climate change and mass species extinction, my self-pity is indecent, and I am a sorry-assed human.

If my tone slides back toward that small, stifling place, tell me to shape up.

Lakey, Andrew; Angel of Hope; RNIB College Loughborough; http://www.artuk.org/artworks/angel-of-hope-80857

 

16 thoughts on “THAT SMALL STIFLING PLACE

  1. Been there! It is not a nice place. You don’t have to be brave all the time as you know. You are allowed to feel sorry for yourself, to wail for a while, and then get up and get on with it. Hugs!

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    1. You cannot control these sudden and unexpected emotions as that is what they are and usually due to long period of extreme stress where one is thinking they are coping. We have sad times in our lives and we keep up a front often to seem brave and “ not be a bother “. Sometimes it is third day postpartum when all the intense feelings and sensations knock one over but if lucky, it passes of its own accord. Even days after successful surgery or surviving an accident will unglue our facade. Don’t beat yourself up but appreciate the understanding of loved ones. Life is just plain unfair at times. All the best.

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      1. Dear Gwen, Thank you for your thoughtful comment. Some of the examples you gave were experiences that I’ve had…and that were traumatic. I do think that such experiences (the stillbirth of a child, being victimized by violence, the shock of a difficult birth, losing someone in a cruel, unexpected way) leave us cracked…as Leonard Cohen said (and before him Rumi), which lets the light in.
        I believe that.
        I often draw real clarity from these meltdown episodes. I think I was reacting to 13+ months of brutal medicine, which I experienced humanely, compassionately, and with support. And I just reached a moment of wanting, no, needing it to stop for a while.
        I saw Dr, Loungnarath again on Monday, and he said to me: You know, you should take more breaks…give you, give your bone marrow, a chance to renew itself.

        He read my mind. It will be my mission to make sure that my team argues in favour of a few more built-in breaks from this clinical trial. Bristol-Myers Squibb MUST be convinced.

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  2. I agree with Gwenyth, you don’t have to be brave all the time, you are only human. Maybe when you arrived at the CHUM maybe you just did not feel like having any treatments and wishing your life was otherwise. I think you have been very brave and positive in the last year with everything you have gone through. Hugs xx

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  3. Dear Michelle,
    I’d call it weariness. I’d call it grief. But I would never call it self pity. Don’t deny yourself that grieving process. Give yourself permission to cry, sob or wail. You’re dealing with so many changes and so much loss. Yes it might happen again, but don’t see it as weakness. It takes strength to feel that emotion and carry it through. I’m horribly lacking when it comes to expressing my feelings in writing. I wish I could express myself as eloquently as you. I wish I knew what to say to make it better. But most of all I wish this would have never happened to you.

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    1. Dear, Dear Patty,
      Your words are both beautiful and HELPFUL to me. Thank you. I do forget, at times, that there is a strange, polymorph grief in all this. I watch a movie with young lovers and suddenly feel old and realize that is gone from my life (and has been for such a while, and that makes me sad too); and think of beautiful people like you, that I met through my work, and know that that is also over…and it makes me feel old. And the treatments I go through give me joint pains and sore hands and bad sight and fatigue and again…I feel old. It is as though I have been robbed of time, energy, and health all at the same time, and of some of the loveliest things in life.

      So I think you and Simon are both right. It’s wise to accept the feelings of grief (and hope that they don’t overwhelm me in public places too often), but also remember that gorgeous, love-filled life I have that offers many different kinds of freedoms that I lacked before, and such peace, in its own way.
      Watching Greta Thunberg yesterday online made me also see and feel the grief that lies ahead for everyone. There is loss everywhere.

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      1. Yes I agree with you. There is a lot of grief and sadness that lies ahead. Not sure the human race will be able to turn this around. It would take a massive global effort. I’m too much of a realist to think that will happen.

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  4. If I had everything on my plate that you do, I would be rampaging around like the Incredible Hulk, grunting and yowling and smashing things all over the place. You are full of grace, humour, intelligence, and bravery. You are a marvel.

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  5. Such a beautiful post and eloquently written. I believe that your moment of sorrow was what it was and it has allowed you to reflect back and gather strength from it. Wishing you much strength for what you’re going through.

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