ONCE, THE HIDING

Part of the THIS IS THE MOMENT SERIES

November 22nd, 2018

 First, the very good news.

The results from the Cat-Scans came in last Thursday. My sister-in-law Lucie, who is a radiologist and who therefore has access to such information through a medical online network, quickly sent me a rather jolting email; in fact, only a title which read: Appelle-moi. Call me.

It scared me. It was so bare bones that I thought she didn’t know how to broach bad news. I could have spent a terrible stretch frozen in worry, wondering how bad it could be, but it seems that I’ve moved into a more direct, head-on way of living. I picked up my cell and dialed, come what may.

She answered immediately, a minor miracle, as she almost single-handedly holds down the fort in the remote hospital where she is chief radiologist. There was professionalism in her voice, but also a special energy that drove her to speak as fast as she could.

Her first words were that my body is having a FAVOURABLE REACTION to the chemo protocol. She’s so intense: you could tell that she just loved saying it. This is a real medical expression that is determinant in oncology. It means that for whatever reason: extraordinary health care, being very lucky, being offered continuous, exponential love and support, THE TREATMENT IS WORKING! My body is collaborating, and in just 2 and a half months, the larger tumour in my lungs—there are many tiny ones sprinkled throughout them, but this one had the oncologists wondering if it might be actual lung cancer and not metastatic colorectal tissue, because it measured over 6 cm—has shrunk 30%, with the rest of the cancerous tissue doing the same thing. No one has yet seen the abdominal scans (except the liver, which now shows the same results and where there’s only a tiny speck of a tumour), but everyone expects to see exactly the same thing in my bowels because the cells being hit are all of the same type.

Lassen, Jeanette; The Road to Health; NHS Lothian (Edinburgh & Lothian Health Foundation); http://www.artuk.org/artworks/the-road-to-health-184508

So, on Tuesday, I got to travel to the CHUM and meet with the head of the research study, Dr. Francine Aubin, and smile. She smiled a lot too. She’s very happy. And she made me understand that this was a terrific result and that she believes that the Nivolumab—the new immune therapy drug—is at work here; has kicked in.

How does one deal with such a mixture of…relief, joy, disbelief; a gut feeling that this was expected (simply based on the disappearance of my most obvious cancer symptoms); a guilty feeling that this is undeserved, and creeping superstition about saying anything at all about it? I wrestled with this. Should I share the news? What if it changes…what if they discover something that casts a pall over this wonderful morale boost?

But that lasted about 2 minutes and then the thought of being able to tell my sons, my mum (who deserves to hear something happy and reassuring), my sisters, my husband, my friends…it overrode everything else. It felt wonderful to have some lightness and joy to share. Even if it’s just the beginning and even if I have no idea how long my body will continue to cooperate and ally itself with the drugs being pumped into me.

There’s magical thinking, and then there’s disturbing conditioning, and I’ve been giving a lot of thought to the latter; about the many ways it’s coloured my life. It’s been with me since my diagnosis, which evoked memories of my parents.

Dyson, Julian; Self Portrait, after Being Diagnosed with Throat Cancer; Falmouth Art Gallery; http://www.artuk.org/artworks/self-portrait-after-being-diagnosed-with-throat-cancer-14642

When my dad was diagnosed with lung cancer in late 1987 or very early 1988, I wasn’t quite 30. It was awful news that was especially difficult because of our (my two sisters and I) strained and wounded relationship with him. The making of those scars won’t be told in this narrative, but with the distance of three decades, I realize that my father suffered from cardio-vascular disease, anxiety-depression and a good measure of obsessive-compulsive disorder that, combined with childhood trauma and something in his brain that could trigger explosive anger, were beyond his and my mother’s capacity to manage, at a time when the medical community had a fraction of the understanding of such things compared to today, and too few tools to deal with most of them. Which meant that my father was left largely untreated, and we, his three daughters, exposed to all of it.

My mother coped by covering most things up. Hiding what was happening in our house from the neighbours and her own parents and siblings. As much as she could, at least. For as long as she could. And so, when the cancer was diagnosed, she did what she knew best: she forbade us from telling anyone that our dad had lung cancer. She swore us to secrecy, until she felt the time had come to share the truth.

I remember feeling immediately that this was the wrong thing to do. My sisters did too. It was like being asked to swallow a bomb and carry it around in your belly for as long as you were made to. It was a dark and sad burden to internalize. It was maintaining the theatre of a life that had just been shattered. It was hiding anguish and pain. It was disorienting. It was anathema to us.

Haughton, Benjamin; In Hiding; Merthyr Tydfil Leisure Trust; http://www.artuk.org/artworks/in-hiding-153488

I don’t remember when the interdiction was lifted, or how people came to know…which is strange. I suppose once my dad started chemo, there was no more hiding it. He tried to keep going to work once his chemo started, but soon found that it was impossible (I understand this so clearly now: his stoicism was extraordinary). Because this was 1988 and the cancer was already in my dad’s pleura (the pair of membranes lining the thorax and enveloping the lungs), it seemed clear that his chances of living even 5 more years were bleak. And so, slowly, the world was allowed to know of his suffering and also of his need for love and kindness and support and companionship.

This opened the door to months of a different way of living and dying for my dad, who quickly hatched a plan with his baby brother Leo (my dad was the 7th of 9 children and Leo was the tail-ender) to have an extension—a sunroom—built on the side of the small house my sisters and I had grown up in, and then together add a wooden deck onto the back of that.

These projects, which my dad had to supervise at first, and then get right into, brought a wave of joy back into his life. Watching him with his leather tool belt hanging from his hip, side by side with Leo, through the spring, summer and early fall months, it was almost possible to forget how sick he was, and lovely to observe how poignant this dedication to the act of building was.

Rogers, Michelle; Maquette of ‘Out of the Shadows’; Queen’s University, Belfast; http://www.artuk.org/artworks/maquette-of-out-of-the-shadows-168887

On May 24th, 1989, two years after his diagnosis and six days after my twins’ sixth birthday, which we celebrated together at St-Hubert BBQ and which he attended, my father died. It was very early morning, and he died at home, my mother by his side. It was the gentlest of exits for such a lion of a man, who was as slight and fragile as a bird on his last day.

My mother had lost her life partner and first love. There was all of that grief and sadness and abrupt emptiness; and the unearthing of memories and reliving of them to do, in their house, which was, for a long while after, still so suffused with his presence. And of course, there were all those hard months at the end, the months of beginning to let go, when they must have talked.

For reasons that we’ve never understood, my father chose to leave his daughters nothing. Not one of his beloved books, in which he might have written a dedication, not a written note, not a private conversation to stow away in our memories…nothing. He simply left.

I look back thirty years, and know that my father will remain a mystery to me.

I have always resisted the hiding and the opaqueness that smothered our childhoods. But recently, I came across poet David Whyte’s newest work, Consolations—The Solace, Nourishment and Underlying meaning of Everyday Words, in which he describes hiding as a way of staying alive, of holding ourselves together until we’re ready to come into the light.

Though Whyte’s insights help soften the feelings and attitude I have about those years lived under my parents’ roof, my appreciation of the value of sharing and opening up to others, and trusting in them, is the path I’ve chosen. The hiding is over.

unknown artist; Quiet Light; Wonford House Hospital; http://www.artuk.org/artworks/quiet-light-96532

 

 

 

 

 

 

 

WHAT AM I AFRAID OF?

Stout, Jennifer; Untitled; University of Dundee, Duncan of Jordanstone College Collection; http://www.artuk.org/artworks/untitled-108170

October 31st, 2018

Part of the THIS IS THE MOMENT series.

In my lifetime, a lot of what I’ve thought about is fabricated within the trap my mind has set for me by keeping me preoccupied with the future. I wonder if I haven’t spent at least a quarter of my life planning for the future, thinking of what would be, what might be… Worrying about what my children’s lives will be like (they are grown men of 27 and 35, for heaven’s sake) what will happen to them, and their children (with climate change and everything going on in the world, it’s hard to zig and zag away from those worries).

Until 2017-2018, there was also what would happen to me in teaching, as the school board went through endless personnel restructuring; how I would manage to hold onto my job and  do everything I wanted to do: teach, write, be a loving mother, daughter, wife, friend and grand-maman;, take care of my body and health; how I would fit it all in as I age, in spite of the cumulative fatigue and significant stress…How well I would live that “second life” (a life after life) promised to so many women who are mothers…

Peart, Tony; Fear of the Unknown; Darlington Borough Art Collection; http://www.artuk.org/artworks/fear-of-the-unknown-44103

Would I be able to keep living with my husband? Would I ever find a way to redress the mistakes of my past that brought me to the place where I was: a mixture of daily passion, joy, love, buried sadness and marital stress…

When would my health begin to fail? (well, it was already failing, wasn’t it?). Would I be afflicted with breast cancer like my mum? Heart disease or lung cancer like my dad? Alzheimer’s? (I honestly never thought about a violent death)

How would I reconcile the different parts of me that pulled in different directions: the teacher, the emerging writer, the mother, the friend, the daughter, the disillusioned spouse, the person as yet undiscovered (because I feel that too—none of us ever stops changing and becoming)?

Aarrestad, Katharine; ‘This is the end of you’; Aberdeen Art Gallery & Museums; http://www.artuk.org/artworks/this-is-the-end-of-you-106556

Would there ever come a time when I got my life exactly right, that is, when I became the best person I could be—the very best version of Michelle, who got all her shit together and arrived at the end of her life having worked through most of the distractions and mistakes and simply become a genuine, good person?

(The worry generator in your own mind undoubtedly produces similar thoughts, like small, irksome movies that eat away at your serenity.)

And then there was my cancer diagnosis, that peeled away everything extraneous, and focused an intense beam. It brought all of my fears right in front of me, reducing my field of vision. What have been my worries since July? Not the big, broad strokes on the canvas. It’s the details of my life that are preoccupying. I have become myopic.

Brown, Neil Dallas; Shroud; Glasgow Museums; http://www.artuk.org/artworks/shroud-83397

What’s chemo doing to my body? What is this change in the pigmentation of my skin? Is it dangerous? Permanent? Can a person develop melanoma while undergoing immune therapy and chemo? Are these changes to my body—its premature aging—reversible? Will my body recover its strength and musculature? How long will it take for my hair to grow in and for my body to return to its “normal”, familiar appearance?

And what about after chemo? Will there be radiation? Will every lesion in my body be hunted down relentlessly? Will there be surgeries? How many? What if the metastases make a spectacular resurgence? How much time will I have after this first wave of treatment ends before cancer returns? How many years like this year can I endure? How strong am I? What if cancer goes to my brain? How long will I accept to live with that before I choose release? What if it migrates surreptitiously to my bones? To my pancreas? (these are among the worse-case scenarios because they’re the most painful)

Deacy, Brendon; Stolen Woman; Wolverhampton Arts and Heritage; http://www.artuk.org/artworks/stolen-woman-19504

What if I can never teach again? Do I want to teach again? What if I run out of money? What if, what if, what if…There seems to be no limit to the apprehension my brain can manufacture.

So many waves of angst that could just keep rolling over me, drowning out everything else. Which they did for a while.

But something has happened. It rose out of my life and almost completely snuffed out the fear that I was stoking and that swirled around me. It emerged out of a thousand threads: from the thoughts, messages, prayers, benevolent intentions and wishes, warmth and LOVE of the dozens, perhaps hundreds of people who have hugged me, messaged me, called me, visited me and rooted for me since my diagnosis; from the impeccable, humane, professional and all-encompassing care I’ve received at the CHUM; from the radical transformation of my life which brought me to this peaceful house in this quiet town that is encircled by nature; from the tranquility I find here, which allows me to simply exist in moment after stressless moment; to the resolution of the sadness and pain of my marriage through separation; to the gift of TIME, which was foist upon me by the exigencies of chemo, and created large spaces of forced idleness that I filled by writing, napping, reading, thinking, listening to music alone, and watching television all curled up in a blanket…I know I’m repeating myself here, but it stills feels unreal to me.

Uhlman, Fred; My House in Wales; University of Warwick; http://www.artuk.org/artworks/my-house-in-wales-55850

The truth is, I’ve never been so stress-free. Imagine that. It makes no sense, but the fact remains that since I’ve learned that I have metastatic cancer, I’ve moved closer and closer to a place of calm and peace. Maybe that’s because these past three months have not only pulled me out, by the roots, of my previous life and patterns, but have also stripped away all of the weeds and strangling things in my life, placing me squarely before the starkest possible truth: that I am mortal, that I WILL die, that I have NOW, and that my future is unwritten. NO ONE KNOWS what lies before me, except that I will die, as will we all.  I don’t want to live for all eternity, so why should I be afraid? Or put another way, why should a fear of pain in the future cause me pain in the present?

On November 13th, I’ll undergo the first CT-Scan since I began chemo. The results could be crushing. They could also indicate that the treatments are working beautifully. They’ll be given to me roughly a week after that. There are indications from my body that there have been positive changes: certain symptoms of my cancer have simply vanished. What should I do with these thoughts in the meantime?

Mostyn, Thomas Edwin; Peace; Manchester Art Gallery; http://www.artuk.org/artworks/peace-205642

In a lovely, thought-provoking novel by Matt Haig that I’ve just finished, titled How to Stop Time, I found this series of questions. To the question: What am I afraid of? ,  I would add: Why am I afraid?

 And then, I would turn to this list of questions, which is nestled at the end of Haig’s How to Stop Time, and I would delight in the answering:

 “And, just as it only takes a moment to die, it only takes a moment to live. You just close your eyes and let every futile fear slip away. And then, in this new state, free from fear, you ask yourself: who am I?

If I could live with doubt, what would I do?

If I could be kind without the fear of being fucked over?

If I could love without fear of being hurt?

If I could taste the sweetness of today without thinking of how I will miss tomorrow?

If I could not fear the passing of time and the people it will steal?

Yes.

What would I do?

Who would I care for?

What battle would I fight?

Which paths would I step down?

What joys would I allow myself?

What internal mysteries would I allow myself?

How, in short, will I live?”

 [This is an excerpt from Matt Haig’s How to Stop Time, Harper Collins, 2018, p.314]

Mostyn, Thomas Edwin; Peace; York Museums Trust; http://www.artuk.org/artworks/peace-8073

 

 

 

 

THINGS TO CONSIDER WHEN YOU’VE BEEN LIVING WITH CHEMO FOR A WHILE…

Part of thTHIS IS THE MOMENT series

October 29th, 2018

  1. Looking at your face up close in a mirror, like when you’re putting on makeup, you see the small ravages of chemo: the darker skin over your lips that looks a little like a moustache from a distance; the much deeper circles etched under your eyes that cause you to use a concealer stick for the first time in decades; the strange complexion you have that’s like an unhealthy tan but is really hyper-pigmentation caused by the chemo (which has made appearances all over your body too) ; your missing lashes and eyebrows, thinned to match your bald head that is now growing a fluffy, bristly down that’s as white as your mother’s was. The eyes that look back are knowing, and that brings you closer to yourself, and perhaps, to the knowledge that you’re stronger than you thought.
Kim, Jung Hyun; Face; Birmingham City University; http://www.artuk.org/artworks/face-32855

2. With everything that has been stripped away, you have never been more YOU. Accept yourself.

3. When you wear your beautiful, real-hair, expensive and stylish wig, no one can tell you have cancer. But oddly enough, you very often choose to leave the wig behind—which still feels like a disguise—and head out with one of the cool caps or beanies you thought to buy before chemo even started; before you lost a single hair on your head. The other day, at a local tea shop, the assistant greeted you saying: “Oh! I love your new haircut! It’s lovely!” and before you even took a nanosecond to think, you replied: “Oh, thank you! It’s a wig! I’m in chemo!”. You were surprised and a little dismayed to see her turn beet red from discomfort. That wasn’t your intention: it just came out that way !

You find that many things that once frightened you no longer do.

4. Your life is on a brand-new track. Your days have emptied out to make room for chemotherapy treatments and medical appointments, and tests, and rest, and recovery. In exchange for the loss of your ability to work and of such a big portion of your energy, you’ve been given lots of static time—the kind that allows for calmness, quiet, peacefulness, meditation, writing, reading, watching, thinking, listening, and just being. You’re more often alone during the day because you’re home, and you find that this solitude is mostly replenishing. You have never felt so little stress, so at peace. You can’t quite understand how this is so. You know it won’t (and shouldn’t) last. It isn’t life, but it’s your life right now.

Reuss, Albert; Woman in Chair; Newlyn Art Gallery; http://www.artuk.org/artworks/woman-in-chair-14926

5. Being open about your cancer and treatments, especially the way you have, with a series of blog posts, has not made you a pariah. Instead, it has opened channels with people you’ve never met and some you barely knew. It has deepened many friendships. It has given you AND others a different means of understanding cancer and its treatment, and of banishing judgement, isolation and misunderstanding. At least, that seems to be what you want and what others want too. You huddle with them, and it warms all of you.

6. During those low post-chemo days when you sleep, shiver, and drag yourself about, and know that your body is drained and struggling, it’s okay to submit to its needs. Your body is brave and tough and wants to get you to the end of this trial. It’s doing everything it can. Love it back.

7. The future is unwritten.

Munnings, Alfred James; Sky Study; The Munnings Art Museum; http://www.artuk.org/artworks/sky-study-4150