AFTER THE LULL

Part of the THIS IS THE MOMENT series

The CHUM, yesterday

January 14th, 2019

I’m back at the CHUM today, after an almost month long hiatus from chemo. It was an unplanned winter break. It felt a little like playing hooky, like an unexpected escape, like getting away with something.

But clinical trials don’t let you off the hook for very long, and today, it’s back to a full dose of reality: pre-chemo blood tests, a visit with Dr. Aubin, the chief oncologist involved in this trial (a young, petite, brilliant woman who has been wonderful with me), and SURPRISE !, my second CT Scan (the study requires a scan every 8 weeks).

I didn’t know this was on today’s calendar. This serious return to reality is unwelcome.

I should feel optimistic; everything so far has indicated that my body’s response to my treatments is positive, but I would have liked to coast on that feeling a while longer. There’s a whisper inside my head cautioning me to prepare for the possibility of disappointment.

What would disappoint me? I have to think about that.

(I have lots of time to do so: 4 hours in fact, because it’s 10 am, I’m done with Dr. Aubin and my scan is scheduled at 2 pm)

—If my tumours have recovered and even grown, I will…I will…

I can’t complete that thought.

It belongs in the Do-not-go-there-until-you-have-to category. The place of the unwritten future. May it remain banished there.

The CHUM, yesterday

—If my tumours had shrunk a lot less than on the first scan?

Yes, this would definitely disappoint me, but it seems quite plausible, doesn’t it? My body has been adapting to the poisonous drugs invading it; surely the tumours are pursuing their own survival strategies?

When you have cancer, things get real very quickly.

The holiday is over.

But you know what? Almost 5 months into chemo, I’m not frightened the way I was before it started. I live more comfortably within my life’s new landscape. Forward momentum means very little to me now.

What’s just bubbled up from my memory are images—like footage—of all of those summers of my childhood, when we would pile into the car with a trunk full of suitcases, and a cooler full of food, and off we’d go, on vacation, usually eastward, spending hours and days in the car, my sisters and I seated in the back seat, sometimes with our grandmother; my parents in the front with one of their daughters wedged between them if grand-maman was aboard, watching cars whiz past us, in both directions of the Trans-Canada highway, and the scenery along with them. Whoosh! Whoosh!

That’s how my life has felt, for the last decade at least: me speeding through the days, and rarely in the driver’s seat, constantly monitoring the passage of time and feeling it running out…

Cancer brings the stillness of a dropped anchor.

January 15th

What struck me yesterday in Radiology was how sick people were. So many were rolled into the CT-Scan and MRI area in their hospital beds, that I lost count. One older man could barely stand, but still tried to avoid using the wheelchair provided for him to move about. He sat very still while having a catheter installed in his arm. He couldn’t speak, just the faintest whisper was possible for him, because there was some wound or incision in his neck. But every single one of his breaths was audible as he shuffled to the room he was called to.

I remember my first scans well. On that day last July, I was to have the first of my two diagnostic scans: the MRI and the CT-Scan—those that ultimately revealed the advanced stage of my cancer. I was still new to the stages of malignancy, to the CHUM, and to the hijacking of my life by a disease. On that summer day, waiting seated along that same wall where I found myself again just yesterday, with a good half-dozen other patients, I felt and looked like the newbie. I felt younger, and vibrant. I could still smile and act relaxed. But right next to me was a woman at the other end of the line. She made eye contact with me immediately and I could see how much she wanted to talk. She may have been only 5 or 6 years older than me but she was ancient by the standards of health. Her pale blue hospital robe—just like the ones the rest of us were wearing—accentuated her pallor and that unmistakable yellow-beige “chemo” complexion that’s so common to patients who’ve been battling cancer for a long time. Her hair was short and patchy and her eye lashes and brows were virtually gone. But she turned to me and smiled an exhausted smile, and though I’ve forgotten her exact words, I remember that she was three years into her battle to survive breast cancer that had travelled to her bones and was now in her brain. I remember that she touched the port-a-cath, that visible square bump under the skin of her upper-right chest—which is just like the one I now have implanted in me—and said: “This is what you want, it’s fantastic.” She was right. It is.

I’ve thought of her often. I wonder whether she’s still fighting to survive, five months later, or whether her body has reached the point of exhaustion. I think about her will to live, about her gentle smile, and about the distance between us and how much of it is delusion.  How many patients like her are there? Where does their strength and determination come from? Their willingness to be stripped of almost everything but their pulse?

Hawke, Marjorie; Probe; Royal Free Hospital; http://www.artuk.org/artworks/probe-123837

You enter the area, you walk into a small room and lock the door, because you have to get undressed. In an impressive, succinct combination of images, words, and alphabetical order, you follow the guidelines written out for you on a poster hanging on the wall.  Instructions A, E  and F pertained to my situation. When you leave that change room, you’ve left behind your distinctiveness, your spark, your colour, and most of your joy, because you’ve become indistinguishable from everyone else. The hierarchy of illnesses is almost invisible. Everyone is just a patient.

No one could stand this for very long. We all need the recognition and validation of others. We need to experience agency in our lives. We require the dignity that comes with being able to speak for ourselves, to be treated as individual, precious humans who also express themselves by means of their clothing, their demeanor and their social interaction. Sometimes, just the look in our eyes is enough. Some of us are positively heroic in our endurance of pain and our astonishing resolve. Some of us are sad, some angry, some terrified and some, all of the above.

Illness and injury reveal us to ourselves. And to our loved ones, I think.

Yesterday afternoon, I couldn’t wait for my CT Scan to be done. I lay there, on the mobile slab inside the big white ring that vibrates and hums and lights up, with my arms above my head and the catheter placed uncomfortably right where my left arm bends, and held and released my breath as prompted by a disembodied voice, and felt the hot, fluttery rush of iodine as it entered my bloodstream and quickly made it all the way to my bladder. And then it was over. My catheter was removed, I gathered my things, re-entered the change room and recreated the person I am by dressing and leaving Radiology, walking down the long, labyrinthine hallways of the CHUM, till I reached Champ-de-Mars metro station, blending in with everyone. Similar, but Me nonetheless—and free.

Croker, Michael; Milton Keynes Hospital at the Millennium; Milton Keynes Hospital NHS Foundation Trust (managed by MK Arts for Health); http://www.artuk.org/artworks/milton-keynes-hospital-at-the-millennium-27098

 

 

 

EXPANDING CIRCLES

Dodd, Francis; Willow in Winter; Manchester Art Gallery; http://www.artuk.org/artworks/willow-in-winter-204869

Part of the THIS IS THE MOMENT series

December 31st, 2018

2019 will be here tomorrow. Am I happy to turn the page on 2018?

It’s a question that’s come up many times these past few weeks and though the people asking it actually pause and wait to see how I’ll answer, for most of them, it’s really just a statement. There’s no question mark. Good riddance, is what they mean.

Despite the obvious life-changing events of 2018 that dismantled my own existence and transformed it into both nightmare and epiphany, I’m never sure that turning the page on a year is cause for celebration.

There’s something about taking even a second of life for granted that prevents me from wishing time away, but in practice, just like everyone else, my mindfulness is set adrift by the slightest wind or whim.

That’s what’s brought me to this keyboard today.

I should be at the CHUM right now. I was originally scheduled for my bi-weekly pre-chemo tests today, followed by 5-6 hours of chemo on Wednesday. But I’m not going. That’s my decision, made after persuasive prompting from Simon, and a deep, deep fatigue and weariness that has settled in me this December. When Simon and I realized that my next round would require me to travel to the CHUM on New Year’s Eve and then again on the day after New Year’s, we instantly agreed that this mustn’t happen, and that I should ask that my chemo be postponed to next week.

A one week reprieve—that’s all I wanted. But it feels like so much more. My hands aren’t healing enough between bi-weekly rounds of treatment, and so they always hurt; my energy levels barely make it to 7 out of 10 before I’m back in treatment; my morale is being affected by the 14-day box I live in.

The season is icy and dark.

Walsh, Claire Cooper; Realms of Possibility; Art in Healthcare; http://www.artuk.org/artworks/realms-of-possibility-184111

January 2nd, 2019

I had dinner out last night with my Mum, her partner Claude, two of his three grown children, and my sons, plus Anne, my daughter-in-law. We got together on the West Island, as is almost always the case, forcing Claude’s family—city folk—to come to the burbs, which they do, graciously, almost every time we invite them. We were at La Maison Verte, where the food was delicious and the company was, well, family.

I spent New Year’s evening sitting across from my mum and Claude. My mum was in good spirits, so the conversation flowed. They’re both 84 years old, and doing well, but these days, of course, it’s hard to talk about most things without the shadow of my cancer there, poised to dampen everything. Then, somewhat to my surprise, my mum began to talk about the grim reality of growing old, and about the fortitude and the grit required to deal with the hard parts of each and every day. I think she meant the incremental losses that are inescapable: aching joints that lessen mobility and make this winter’s ice even more of a nightmare; eyesight that is not as reliable as it once was and has required cataract surgeries; the lingering side effects of cancers, multiple treatments, illnesses and the surgeries that each of them has dealt with, and which have sapped their resilience.

Beatty, P.; Season of Love #2; Art in Healthcare; http://www.artuk.org/artworks/season-of-love-2-184297

It’s such an interesting perspective from where I sit. I couldn’t help thinking that if the miracle occurs, and my cancer retreats for a good long while, then I may then have the privilege of entering the daily survival zone my mum and Claude inhabit.

What came to mind next was something I’d been thinking about for a few days, something that turned time on its head in an entirely different way. Looking too far ahead, when you have stage 4 cancer, is fraught with painful traps.

I’ve been observing my beautiful grandchildren, Penelope and Graeme, who are like the ocean, or a primeval forest, or a clear night sky in summer, or grand, symphonic music, or perhaps all of these at once. They are sublime creations, impossibly wonderful, painfully lovable and constantly changing into something new, and more, and completely fascinating. And of course, I can’t help but wonder how long I will be able to know them and follow their metamorphosis into adulthood. And I thought of my own mother who has had the immense privilege of seeing her grandchildren—all five of them—reach the ages of thirty-five (three in all), thirty-two and twenty-seven. She knows who they are, who they love, what their professions are, and what sort of humans they have become. She carries this knowledge inside. They have added rings to her life—expansions of love and joy.

Grant, Keith; Sunrise over Spitzbergen; University of Birmingham; http://www.artuk.org/artworks/sunrise-over-spitzbergen-34711

I’m not even sure I’ll see Penelope turn ten or Graeme turn eight. Who knows? That’s the thing. I don’t have those years secured away and well-lived in their company. But my mum does—and she has even been able to know and love her grandchildren’s children (once again, all five of them—so far). Another ring added, expanding her life.

One mistake that these thoughts twist me into making is to hold back from Penelope and Graeme, calibrating the expression of my love for them, so that my disappearance from their lives won’t cause them as much pain. Cancer treatment has kept me at the hospital an awful lot, lowered my energy and caused me to be less present anyway. I can’t run around and be the grand-maman that I was. Sometimes, I wonder if they feel the decay emanating from me. Why not recede, ever-so-subtly, from their lives?

These are awful, stupid, self-protecting thoughts that have strong roots, and persist. I struggle with them. I forget that love is a growing, expanding emotion.

Haughton, Benjamin; Dead and Live Tree; Portsmouth Museums and Visitor Services; http://www.artuk.org/artworks/dead-and-live-tree-24321

On Christmas Eve, this theory of love was put to the test when I went to join the Daoust clan, my husband’s family, for our annual bash. This year witnessed the best attendance ever, and we were well over thirty people celebrating. But this was also the first Christmas after my separation from Sylvain–their blood. It says something about my Daoust family that this made no difference to them, and that they were very anxious to see me, as I had disappeared since late June.

I thought I would be skittish, but as the day and hour approached, I found myself so looking forward to seeing each and every one of them, and swore to myself that I would share this feeling every chance I got. And I did. It was so easy to smile and to linger in the long, warm, encircling embraces I was offered, so many of which qualified as bear hugs. My Daoust loved ones smiled and asked me concerned, pointed questions, and then moved on to just being there, all of us together.

McDade, Steven; Network; Southampton Solent University; http://www.artuk.org/artworks/network-17290

I’ve reminded myself many times that I’ve known them since I was barely 17 years old; that I’ve been through so many happy events and tragic moments with them—that we’ve grown up and grown older together, and that our children are reaching further into the future…Ring after glorious ring.

On Christmas Eve and at New Year’s supper, there were so many smiles. There was such sincerity in what was said and how we touched each other.

There’s a lesson here for me. I’m an introverted person and this need of mine to retreat is not always the way to go. Saying “Here I am”, with open arms this year, allowed me to recognize the steadfast circle that surrounds me, to see all that it embraces and to understand just how limitless is its ability to expand.

(I trust in love. I abandon myself to love.)

Farquharson, Joseph; Dawn; Walker Art Gallery; http://www.artuk.org/artworks/dawn-97077

 

 

 

 

 

 

 

CUBICLES OF HEALING AND PAIN: Notes from chemo base camp, part 7

December 10th, 2018

Last night, sleep didn’t come to me as easily as usual. At 11:25 pm, I was still awake, lying in bed in a room illuminated only by the glow of a white winter night sky. In my previous life, this would have triggered anxious thoughts about how I was going to get through the next day of work on so little sleep, but now, it’s just what it is. There are no real consequences to such things because my days are more about not getting sick, not getting tired, and laying low, than about anything outward-looking.

So I lay there in the incomplete darkness and turned my gaze toward the window through the white phantom curtains. I took in the December evening, the quiet of the house and the square space of my room—ceiling, shadow furniture and the folds of the blankets keeping me warm.  And I asked myself a question that must come to every chemo patient eventually: What is my purpose?

When, last July, I figured out that I wouldn’t be able to work, or do much else once treatment started, I felt an enormous relief. I felt lightened. It felt like I had been busy running toward the next class, the next meal, the next appointment or chore for so long, I didn’t want to run anymore. I may have been running away from a lot of things too.

So much of our lives is propelled by plans, fears, desires, ambitions, routines, hopes, commitments, dreams, obligations, pressures and momentum. But what happens when the road ahead requires passive compliance?

My life has the strangest shape. It has so few of the usual pieces that I’m stumped by it. I watch people come and go, and know that I’m outside their worlds. Every now and then, when conditions are just right, I can join them, and for a while, I feel part of the stream of life. But I’m still just a visitor these days.

Winter isn’t helping. It arrived mid-November with snow that stayed, and biting cold. It has pretty much immobilized me. Chemo and cold are incompatible. My body’s responses to the frigid temperature are odd and painful. Chemo has transformed winter into an alien thing which keeps me housebound much more than is good for me.  And it’s only just beginning.

Joni Mitchell, skating on Lake Mendota, near Madison Wisconsin, 1976, photo by Joel Bernstein

Lying in my bed last night, I found myself thinking about the other world, the one at the CHUM, where I experience short, intense bursts of purposeful, alternate life. There was nothing difficult about my treatment last Wednesday, but the day was long, as always, and my eyes wandered.

The cancer treatment centre of the CHUM is on the 15th floor: the top floor. Isn’t that wonderful? We step into the elevator and rise and rise above it all, and wait like (bald) eagles in our eyries. It’s a separate world made up of multiple large areas subdivided into “rooms”, or cubicles, where chemo is administered to hundreds of patients every week. Perhaps the most important difference between the CHUM and most of Montreal’s other hospitals is its brand-newness. Most cubicles, just like the waiting areas everywhere, have a floor to ceiling window-wall which offers not only a view of the eastern part of downtown Montreal, but also allows natural light to stream in, and patients and their families to look out and beyond the multiple wall plugs and pumps and infusion tubing.

Conroy, Stephen; The Garden; The Fleming Collection; http://www.artuk.org/artworks/the-garden-218248

Still, most of the large, comfy chairs in these areas have their backs to the window, which means that during the five to six hours that I’m there, there’s always the possibility of eye contact with other patients.

I’m surprised by everyone’s discretion. Some of us smile easily at each other, but conversations between patients are rare. Most of us are accompanied by family or friends for at least part of our stay. I’ve had seven treatments so far, and have never engaged in any kind of meaningful chat with a fellow chemo patient, once inside. Why is that? Well, in part, at least, it’s about the space available to us: we’re all settled in areas with walls and curtains that allow for a high degree of privacy, so interacting is a choice.

But those partitions also delimit the borders of our pain. No matter the brave or resigned face patients and their loved ones put on, from my chair, I observe so much more. Even though the discomfort of chemotherapy is easily bearable while in those chairs, you can sense pain everywhere.

For some, it’s the effect of repeated, long term assaults on their body and spirit. There’s an older man I’ve seen at blood tests and in treatment who suffers from thyroid cancer. I know this because I overheard him one Monday morning (pre-chemo tests day). His face is razor thin and his body is brittle. He has no more fat to sacrifice: cancer and treatment have devoured it all. He’s all angles and jutting bones, and his expression is mostly sour, impatient, and defiant. I wonder how much of him hurts with every movement of his body. His wife is always there with him, and I feel for her because hers is a thankless task. Then, last Wednesday, he and I found ourselves waiting to be called in for our treatment. And I looked at him, smiled, and said Bonjour! And he looked back and smiled Bonjour!

Well what do you know! This man, with his robotic voice, —which I imagine he owes to hours of radiation treatment— he’s just struggling to find a way around his pain.

Shackleton, William; Wings of Silence; Leamington Spa Art Gallery & Museum; http://www.artuk.org/artworks/wings-of-silence-54462

CUBICLE 17

I was in cubicle 17 last time. To my left, occupying the corner space and hidden by a curtain, was 16, and then, moving along the left wall, were 15 and so on. Of 16, my closest neighbour, I could see little other than the nurses coming and going, and hear voices, until an attractive man, perhaps in his early to mid-fifties walked out, heading, no doubt, to get some coffee. He wore a suit jacket, not some comfortable sweater, and was perfectly groomed despite the venue. I‘m sure he smelled good too. What I could sense from him was the temporariness of his stay here—he was here to accompany the person I could only imagine in the armchair next door. His eyes didn’t search the room. He seemed to be trying to maintain a kind of social neutrality as he moved about, free of the I.V. pole and bags that patients are tethered to. Free of cancer.

Sims, Charles; My Pain beneath Thy Sheltering Hand; Bethlem Museum of the Mind; http://www.artuk.org/artworks/my-pain-beneath-thy-sheltering-hand-192943

CUBICLE 16

The hours passed. The I.V. bags containing all of our poisons were changed at the required intervals by hyper-competent nurses. And then a new face emerged from behind the curtain of cubicle 16. This fellow was perhaps in his late thirties, early forties. Tall and casually well-dressed in fitted black, from shirt to shoes. He was so different from his companion. He looked around as he came and went. He had an easy smile that drew me to his kind face. He could have been walking in an office building, except…for his I.V. pole with all the tubing attached to him, his shaved head and the bright red scar that began at his right ear and ran all the way up the side and top of his skull, past the mid-point. And the falter in his walk.

Brain cancer. You think that immediately. Then your mind runs through all kinds of terrifying scenarios. To words like glioblastoma. You imagine the surgery that he’s been through. You imagine what the first inklings of his illness might have been. You imagine seizures. You imagine the terror he must have felt when he was diagnosed. The bomb that went off in his life. The seismic ripples. The fear. And how far he’s come in a short time. And now, chemo.

Behind the curtain of room 16 there’s his story, most of which you can only guess at. But you wish him well. You send him every positive thought and feeling you can muster in such a place. You try to hold hope for him in your heart. You marvel at his beatific face, which is hiding so much pain.

CUBICLE 15

In cubicle 15, right next to him, there was a couple. They arrived together dressed similarly in relaxed clothes: jeans, sweater, no fuss. He got comfortable and she sat very close by on the plain stackable chair provided. They seemed close in age: perhaps their early forties. They looked like the parents of a few kids—I guessed maybe between the ages of 9 and 13…something like that.

They spoke to each other in near whispers, their expressions tense and urgent. The nurse came and got things rolling. And I found myself staring at them. I couldn’t help myself. Their S.O.S. signals were impossible to ignore. Once his drip started, she moved closer to him, and rubbed his hand gently, and for a very long time. Back and forth, back and forth. Sometimes they spoke quietly, but mostly, she sat vigil in silence. Later, I noticed that he had raised one of his legs to rest on her knees. And again, without smiling, without really looking at him, she continued her soothing, stroking motion.

Hodgkin, Howard; Silence ; Victoria Art Gallery; http://www.artuk.org/artworks/silence-229837

There was love there, but they were at odds. Everything about them was tension-filled and anxious. More whisperings and agitation, followed by a period of coldness. Then her hand would reach out again and stroke his…The silent inhalations and exhalations of a terrible shared suffering.

At mid-day, a plump woman dressed in civilian clothes arrived at their cubicle, and the wife left. The visitor moved close to him, sat, and a conversation began. I know she must have been a staff psychologist by the way she spoke with him—discretely, calmly—but also because she stayed with him at least a full hour. During their exchanges (which I monitored discretely—it’s so hard to look away from another’s suffering), I saw him move from tense withdrawal, to resistance, to openness and then, to tears. I couldn’t help but witness those: it was the only moment in the whole day when his voice—now raw and vulnerable—was audible to me.

And then the session was over, and his wife returned, and within minutes, she was whispering urgently to him, her face filled with anguish and tears. Her side of the story, I thought. Her reality. He didn’t reach out to her. I imagine that he was still held in the state of being he’d reached with the psychologist, feeling, perhaps (I really hope so) calmer, more centred, less afraid—and so unable or not ready to open himself to her again.

They fell back into their pattern. He, quiet and withdrawn; she with her soothing hand extended, as she focused on the book she was reading. And the love and pain radiated from Cubicle 15.

Boisseau, Annie; The Moon is Hanging in a Purple Sky; University of Surrey; http://www.artuk.org/artworks/the-moon-is-hanging-in-a-purple-sky-231140

* * * * *

No anguish I have had to bear on your account has been too heavy a price to pay for the new life into which I have entered in loving you.”
― George Eliot, The Mill on the Floss

“Your pain is the breaking of the shell that encloses your understanding.”- Khalil Gibrand from The Prophet

One word
Frees us of all the weight and pain of life:
That word is love.”
Sophocles

 

HAZMAT HOME- Emotional side effects part2

November 29th, 2018

 I don’t know where to begin to describe the past 11 days. It’s been an epic encounter between chemo and the pathogens of the outside world.

It actually started when my sister Marie came to visit from Vancouver. Although this would be her 4th trip in a few months—to different continents and in very different time zones— the giant heart that beats inside her was committed to coming here, a week after her return from Chile (where she had worked very hard resettling her daughter, son-in-law and granddaughters into a new life there).

She wanted to accompany me to a chemo session, but found out only after her plane ticket was booked that I had had a week off because of a low blood count and scorched hands, and my treatment was now a week later than expected. “Fair enough”, she told me, “I’ll go with you to the appointments with the endocrinologist and to see your oncologist.” And that’s what we did, on the Tuesday.

Marie is a human generator, with energy that seems inexhaustible. It was so good to have her with me on that soggy, cold day when we headed into the city and went from appointments at one hospital, l’Hôtel-Dieu, to others at the CHUM, which is three metro stops away. We were gabbing so much that a couple of times, we found that we had set off in the wrong direction and had to backtrack.

At the pub, when all was still well.

It was the beginning of the week, and we knew that we had the luxury of many quieter days ahead to spend together. But as soon as our pace slowed, as soon as we settled in here, in the house, to talk and catch up, I noticed that Marie was speak-yawning, quite literally. There were all these things she wanted to say, but all her brain seemed to want her to do was yawn. And there were shivers too. She felt cold, she said (well, the house was cool, but Marie walks around in shorts in Vancouver on cold days and never seems bothered). It was as though her body no longer knew what time zone it was in.

The week passed, and then it was Saturday, two days to go before she headed home to the West Coast. We were having friends over because this was a scheduled IKEA-thon:  8 or more floor-to-ceiling bookcases had to be assembled so that we could finally get our cherished books out of cardboard boxes in the basement and up into the living room/library, where they would be close to us.

But, surprise, I never made it out of bed. I woke up sick as a dog, with what was either gastro-enteritis or food poisoning (my money’s on the latter: the thought of that smoked meat grilled cheese sandwich at the pub the night before still makes me feel green around the gills). I spent the day in bed, away from everyone: the fun, the voices, the laughter, the dinner, all of it. And thought non-food-related thoughts. And left my door open so I could listen in on the gregarious chatter.

But of course, a cancer patient is never really sure what’s going on inside their body, and I wondered if maybe something was going wrong with one of my medications. I was so relieved the next morning, a quiet Sunday, to wake up feeling shaky, but much better. Gastro or food poisoning it was!

And then I went to the den, to the giant sectional sofa Marie was camping out on, to see if she was up, and found her unable to speak, with full-on laryngitis, congested breathing, weak and sick as a dog, with a flight home to catch the next day.

Now it was her turn to be sequestered. Simon made that eminently, seriously clear. I was NOT to go near the den and Marie was NOT to leave the lower level she was on. This was to be my first true insight into my vulnerability as a chemo patient, and the havoc it can wreak. Simon wasn’t messing around. I HAD to stay away from whatever was making Marie sick, because as a chemo patient, I’m always immunosuppressed, and there’s no way to know how my body will manage to fight any virulent bug.

Marie slept all day, and recovered just enough, poor thing, to endure the slog to the airport the next day, the rental car return, and the 5-hour flight home (she seems to be doing fine these days). Meanwhile, Simon set to work sterilizing the den: each cushion, pillow, blanket and surface that Marie had touched, using a spray disinfectant and steam. I wasn’t even able to give Marie a hug before she left.

Simon, master disinfector

I suppose this should now be seen as the first test of our household’s HAZMAT response, because just four days after Marie’s departure, on Friday, Christian fell sick with an infection that mirrored Marie’s in many ways. He woke up so congested he struggled to speak and breath. His temperature hovered around 101 F. He was so weak he could barely get up. He was seriously ill.

Realizing what this could mean—his bedroom is next to mine and we share a bathroom—he contacted Lucie, my physician sister-in-law, who set off all of the alarm bells she could: this could be the flu; the flu could be lethal to me, his mother. I could wind up in intensive care. It could kill me. It would be best if Christian left the house. He was to have NO contact whatsoever with me. He was NOT to leave his room (except to use the bathroom across the hall which was now a contamination zone). He was to wear a mask any time food or water was brought to him. Anyone going near him (mostly just poor Simon the house biologist/parasitologist) was to wear a mask, gloves and maybe a lab coat too. Anything taken from Christian was to be washed and rewashed and the gloves were to be thrown out each time.

Simon on the attack

Friday, Christian’s temperature and symptoms were unchanged. Saturday, the same. Sunday, the same. He had soaked through his comforter, blankets, sheets, mattress cover. The minute he stopped taking Advil, his temperature shot up again. By Monday, the tension in the house was getting to me, and Simon’s hyper-vigilance was taking its toll: he was on edge and tired.

Aside from the microscopic parasites that were waging battle inside Christian’s body, I was the source of all of this anguish and anxiety and worry, and of the safety protocols worthy of the WHO (World Health Organization). It was me who was responsible for the tense, mobilized atmosphere in the house. Because of the chemo that has so compromised my ability to fight infection of any kind.

Christian was trapped in his room, isolated from civilization, because it was dangerous to me. And so, he has spent a week in there, watching TV, or online, or staring at the walls, alone, because of me. This is an intensely unwelcome side effect of chemo.

I’ve been feeling this way for days, now, and remembering a situation 6 years ago, when Simon, who lived in an apartment then, caught the super nasty H1N1 virus during Christmas vacation, and fell dramatically ill. I remember that the first thing he did was come home, to his parents’ house. I remember that we settled him in the living room, on the love seat, with blankets and a pillow and a TV table nearby on which we kept fresh tea and cold water, and monitored his temperature (there was one day when it stayed stuck at 104 F and scared us silly). And we were right there next to him, and we put on one DVD after another—many of which he slept through—and though he felt like death warmed over, he had us there.

Christian wound up going to the hospital with his father on Monday, where they waited and waited from 9 am to 10 pm. What is known, at this moment, is that flu (influenza) has been ruled out, and so has pneumonia. This is good news to both Christian and me. Blood was drawn for cultures to be done, and Christian should find out today if it’s a virus or some bacteria raising hell…

Dickson, Rodney; Sickness; Atkinson Art Gallery Collection; http://www.artuk.org/artworks/sickness-66470

I’ve found this past week excruciating. Having us separated from Christian, with all three of us stalking around masked and gloved…It scared me. Illness reared its unwelcome head three times in less than a fortnight, and turned us all into hyper-alert germ fanatics. And the terrible thing is that it was necessary, and that it was on me. I am the antithesis of Typhoid Mary.

I don’t know that I’ve ever felt so disempowered and helpless to do anything to help my own sons. While he was at the hospital on Monday, Christian’s phone battery started to die, so he had to reduce contact to the weakest trickle. The lack of contact was painful to me. Like a connection between us was being stretched beyond bearing. I felt impotent. Useless. And like a giant pain-in-the-ass sickly obstruction.

I have to accept that during periods of contagion at least, I cannot be a mother, nor a caregiver.

Right now, I’m dealing with a bad case of emotional side-effects.

Cairns, Joyce W.; The Wounded Heart; Glasgow Museums; http://www.artuk.org/artworks/the-wounded-heart-83450

 

 

 

 

 

 

 

 

 

 

 

 

 

EMOTIONAL SIDE EFFECTS

November 25th, 2018

 My understanding of what it means to sign on to a cancer research protocol is becoming clearer with every passing week. My nose is no longer glued to the window of treatments in the same way. I’m acculturating.

If I’ve understood correctly, the aim of the team of specialists who are shaping my life is to keep me in the full chemo protocol for a year, and then continue a second year just with Nivolumab, the immunotherapy drug.

Five weeks ago, I would have flinched at hearing this: only the first part would have registered. A YEAR of chemo? What human body can take that much abuse?

And then the first scan results came in, and I now know, for certain, that at least all of this isn’t in vain, and that modern science and my body have linked up and are giving me a fighting chance to stay alive a while longer. A GOOD while longer, is what I’m hoping and feeling.

Cast in this light, I think I can put up with whatever new side effects present themselves. Well…maybe that’s a bit too confident, but I do feel a renewed love of this carcass of mine, this sixty year-old body that has been asked to ascend the heights of Mordor. I’m so grateful for what it has accomplishing with the help of state-of-the-art medicine.

Rereading these paragraphs, I see how much Me-Me-My-I is in them, and it’s unsettling. Just a few days ago, I finished Nina Riggs’ The Bright Hour: A Memoir of Living and Dying. It’s a compelling, difficult book because Riggs wrote it while she was dying of metastatic breast cancer that spread to her bones and lungs over a period of two years. She barely reached the age of forty, and left behind two preadolescent sons.

I will not forget Nina Riggs, nor her challenging ordeal (her martyrdom, really): the early false hope, the rapid spread of her disease that became unstoppable, the painful treatments and myriad side effects she dealt with so courageously, so…adamantly. The last year of her life was a torment, and yet she held on.  I don’t know exactly what drove her to dig so deep, but I suspect that it was her inability to accept leaving her children, whose lives and cares she shares in the book.

Her story presented me with one of the many scenarios that might await me, or any of us really, except that I’m right at the portal—the entrance to the place where the end is. I think Nina Riggs hung on as long as there seemed to be a path to follow: a new drug, a different protocol, a new surgery, a better pain killer. Until these and her tortured body were exhausted.

Nina Riggs

Whatever awaits me, I’m in this new life for 2 years. That’s what I signed for. It isn’t a comfortable feeling, but there’s something reassuring about knowing that a whole medical team is committed to me and to treating my cancer for such a significant period.

And so it is that I’m tied to two-week cycles in a two-year experiment. Minus one eighth, because I’m now three months in. It’s all very rational, very professional.

But within this structure is a simple patient: me. And while the physicians go about their business at the CHUM, wearing white coats and monitoring my case on their computers, I only live in their world for very short spurts: one day for tests and seeing the doctors, and one day for chemo, with extra days for tests as new side effects manifest themselves.

Most of this research protocol, this medical study, I carry home with me. It’s lived with friends, family, acquaintances and strangers. And my life is largely devoted to finding ways to make it all fit together, and to overcome my sense of uselessness and incapacity.

The truth is, I can’t do what I was able to do just 4 short months ago. Before chemo began, I imagined a life regularly chopped up into a few bad days and a bunch of good days—normal days—when I would be able to do pretty much anything I wanted. But that isn’t the way it is. There’s no more normal. There’s just managing change.

I no longer have the energy to go from place to place teaching adults. That life feels so far away. I can’t depend on my legs to feel strong under me. They’ve lost their bounce and these days, I’m just happy that they can get me to where I want to go.

I’ve told you about my hands and feet, which are fragile things now, with skin that burns in some places, is numb and thick in others or peeling off in strips. Opening a bottle of Tylenol, opening a jar of jam, putting on socks, holding a cup, using a chopping knife…All of these hurt, and are not always possible. So I ask for help.

My eyes are experiencing changes and there are times when, well into a great book, they simply won’t focus and instead start leaking, and I have to stop. My reading glasses are always cloudy, which makes me wonder whether the eye goop is continually splashing somehow onto my lenses.  My gums burn when I chew gum and when I use toothpaste. My lips burn when I drink hot fluids. The inside of my mouth seems to always be coated with dead cells that make my mouth feel a bit like it’s lined with tapioca. My super dry nasal passages are permanently coated with bloody clumps of mucus that are sensitive and make my sinuses ache when I breathe, usually just when I’m trying to fall asleep. I pulled a square one-inch patch of thick white skin off the bottom of my foot yesterday, which came off like wax. No pain, and the skin beneath ready to take over. The undersides of my feet are a bruised red (where they aren’t snow white). The rims around my toenails are chocolate brown.

Pearce, Rodney; Mother Figure; Cheltenham Art Gallery & Museum; http://www.artuk.org/artworks/mother-figure-61968

When the thermometer plunges, being outside triggers not only neuropathic pins and needles in my feet and hands, it also causes small spasms under any skin that’s exposed to the cold and wind, such as the tissue around my eyes, or else my cheeks or my chin, and I feel as though I’m grimacing, even if no one seems to notice. It forces me to bundle up like a fragile old woman.

Side effects of chemo. All of them. They’re predictable and monitored by the oncologists and nurses and usually, they can be alleviated enough that my “quality of life” (this is their great preoccupation) isn’t too negatively affected.

But what of the other side effects? There are so many parts of their chemo experience that patients keep to themselves—the interpersonal, intimate side effects that are also borne by the people they love. Sometimes, physical and emotional side effects become entangled.

For example, as the weeks of chemo have added up, Christian has taken to coming to my room now and then at bedtime, once we’ve both washed up and have put on our pajamas. The first few times, he asked me if I minded (of course I didn’t), and after that, he just text messaged from his room: “Can I come over?”.  All he does is lie down on the bed beside me—I’m usually propped up and reading—and snuggles. Me and my 27-year-old baby.

Dewan, Indra; Mother and Child; Art & Heritage Collections, Robert Gordon University; http://www.artuk.org/artworks/mother-and-child-105357

There are times when we’ll just lie there quietly, our foreheads touching. Mostly though, we’ll talk about anything and everything but sometimes about small, meaningful things, like the fact that for most of his life, the thought of losing me was his worst nightmare (now that he has wonderful Vickie, those thoughts are waning). A simple phrase, but one that conjures the pain my illness is causing him. Or, on another evening, he told me how difficult it was when he first had the thought that I might not be the grandmother his children know.

There’s a special kind of awfulness to those kinds of thoughts spoken aloud when you’re in chemo. They hurt in an acute, specific way. They’re words that you can’t step out of the way of, they always hit, and that’s because their intention is sincere, and the bullseye is love. The thing is, I can’t always hide my reaction, and so, when I cry, my face scrunches up in a particularly ugly way because crying hurts my face since I’m in chemo. But what can I do? I cry. Then it passes.

McCall, Charles James; Pensive Woman; York Museums Trust; http://www.artuk.org/artworks/pensive-woman-8323

I worry too about Simon, and what will happen if I die too soon, before he’s ready to handle all of the expenses of our new home. I think about him alone in this big place. I mentioned this once, and he told me that he had friends—a couple I know—who would perhaps share in a new multi-family configuration. Reassuring words. But awful words too, because they told me that his mind has had to go there more than once since my diagnosis, to the future place where I no longer live.

All of the thoughts and worries and practicalities that my sons are dealing with, and the responsibility I bear for them…No one told me about side effects like these.

 

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