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(Rob Dobbi for The Globe and Mail)
(Rob Dobbi for The Globe and Mail)

How a stroke changed how writer Eve Joseph views herself Add to ...

Every summer, the Banff Centre – the arts, culture and education incubator – offers a handful of established non-fiction writers the opportunity to spend a month-long residency developing a feature story under the guidance of faculty mentors. The program encourages writers to explore new ideas in journalism and to experiment with creating a piece that might otherwise be difficult to complete. This is the first in an occasional series.

It was an unseasonably chilly August night in 2013 around 10 p.m. and I was making a grilled cheese for my son. “That’s the way this story always starts,” he says now. As if he is the cause of the tale that follows. The light shining in the kitchen made the night feel closer, deeper. I was happy – the kind of dumb happiness I feel whenever Saul, who is now 29, comes to visit.

The dizziness, when it hit, was brief and breathtaking, like cresting a hill on a roller coaster and surrendering to the near vertical fall. I put my head down on the counter and, before I could straighten up, the right side of my body started tingling. I felt a thousand pinpricks – as if slivers of light from a hand-held sparkler were falling on my skin. “For a second, the song Needles and Pins, sung by the Searchers in 1964, flashed through my brain, with the emphasis on pinsa just the way they sang it.

As the weekend crisis counsellor at the largest trauma hospital on Vancouver Island, I know how denial functions. Still, when I called the nurse’s helpline and was told to “hang up and call 9-1-1,” I refused.

“What’s the big deal?” I thought to myself, before suggesting to my husband, Patrick, that perhaps we should go to the hospital to see if I had somehow pinched a nerve.

When we arrived at the ER, after a 20-minute drive along a country road, the triage nurse, whom I had worked with earlier that day, shook her head when she saw me. “What are you doing back here?” she asked, before waving me to one of the orange plastic seats in the waiting room. We went dutifully as directed.

Patrick later told me he was torn between jumping up and yelling, “This is an emergency!” and sitting quietly beside me wondering if he was just overreacting. Half of my body felt as if it had fallen asleep and was trying its damnedest to wake up. I tapped my foot and thought to myself, C’mon, c’mon for God’s sake, hurry up.

Ten minutes later, I was called to the window and began describing my symptoms. “You had dizziness and tingling?” the nurse asked sharply. Before I could answer, she pushed an intercom button and called two emergency-room physicians to see me stat. Within minutes, I was on my back on a stretcher en route to medical imaging. I knew the hallways of the hospital intimately. The wheels of the gurney shook the way grocery-cart wheels shake going too fast down the aisles. The technician, whom I’d seen numbers of times when I accompanied patients to CT, did not recognize me. But he noticed that I was shaking, and offered me a blanket.

The numbness, although not as pronounced as in my leg, was now ghosting up my torso and the right side of my face. I was on call that night and carried a pager with me, clipped to my jeans, on the narrow metal stretcher. I thought about handing it over, but didn’t. If I was still the one helping others, how bad could things be?

Nothing showed up on the first CAT scan that night or later on a second, dye-infused one. At around 1 a.m., the admitting doctor parted the white curtains around my cubicle, sat down on the edge of the bed, placed his hand on my numb right leg, and said, “I don’t know what’s happening.” And then he added, “That makes me nervous.” It was around this time that I, too, began to feel a deepening anxiety. The kind one might experience at losing a child in a crowded mall where, even with people all around to help, you are utterly alone.

It wasn’t until the MRI, two days later, that a small, solid white lesion revealed an acute infarct in the thalamus region of my brain. “And what,” I asked the neurologist, “does that mean?”

“It means,” he said, pointing to the image of my cranium on the screen and what looked like a small golf ball embedded within it, “that you have had a stroke.” At which point, I excused myself, turned to my husband and said, “Holy fuck!

Nothing felt safe

My first granddaughter was born three days before my stroke. On the night I was admitted to the neurology unit on the sixth floor of the same hospital, my daughter Leigh slept with her new baby nestled beside her three floors below me. The following day I watched from my room and cried as she and her husband made their way across the parking lot with Ava strapped in a car seat. It was a sunny Sunday morning, the parking lot was half-full and a few hospital staff were taking a smoke break at the far side of the lot. Out in the “entrails” as they call it. I’d texted her around 8 a.m. saying I’d had a busy on-call night and wouldn’t be there to see her off. My kids aren’t used to me lying. Weeks would pass before I’d tell her what had happened. The last thing she needed, I thought, as I watched them drive off into their new life, was to be worried about me.

The days after the stroke are largely a blur. I slept much of the time, and when I attempted my first outdoor walks, I was so slow that toddlers passed me. A few times, I had to call Patrick to come and pick me up even though I was only a few blocks from home. I’d gone from riding 40 kilometres a day on my bike to having to pause three or four times on the stairs leading up to our bedroom. Patrick later told me he watched me fall asleep, afraid that I wouldn’t wake up.

Shortly after the stroke, I returned to Ultrasound for a test to determine whether I had a hole in my heart. There was the possibility that the clot – rather than forming in my heart, as it did – could have passed through such a hole and travelled to my brain from somewhere else in my body.

The procedure, which involved shooting air into a vein in my left arm, made me very nervous. “Is it safe to inject air into a vein?” I asked the anesthesiologist as he held up a hypodermic syringe and drew the plunger all the way back – nothing, at that time, felt safe to me. Without answering, he turned away and avoided eye contact.

My first venture out, about a month after the stroke, was to a play with my younger daughter, Salia, and her new boyfriend. We had settled into our seats and the lights had gone down when I had a sudden dizzy spell. I started to shake uncontrollably and waited for the tingling to come as it had the first time in the kitchen. If I’d stood, my legs wouldn’t have supported me. I closed my eyes the way you close them when you’re seasick. For 20 minutes I was convinced I was going to die beside my daughter. Afraid of causing a scene, I didn’t say anything. Unbelievable as this is to me now, I didn’t want to embarrass anyone.

Before the stroke, I had paid no attention to CVAs or cerebrovascular accidents, as they are otherwise known. Afterward, it suddenly seemed as if everyone – actors, writers, athletes, mountain climbers, distant acquaintances – had either died of one or had lived to tell a story about it. After heart disease, stroke is the second biggest killer in the world. Oscar Peterson, Miles Davis, Elizabeth Taylor, Sharon Stone, Richard Nixon, e.e. cummings – all had a history of stroke. In Canada, someone has a stroke every 10 minutes. In the past decade, the rate of strokes among people in their 50s has increased by 25 per cent.

Shortly after my stroke, the Irish poet Seamus Heaney died. In his obituary, I read that he had suffered a stroke in 2006 – seven years before his death. I searched the piece and scoured the Web looking for details. Did a second stroke kill him? Did he recover fully from the first? Was he frightened and did he feel altered in ways that surprised him? Did he, I wondered, feel as if he had moved into a strange lodging – a place that looked familiar on the outside but had faulty wiring on the inside, capable of shorting out at any moment?

A poet myself, I have always loved his work – although, unlike Heaney, who continued to write, I have not written a single poem in the 17 months since my stroke. Rarely had a day gone by, in the 20 years before, that I wasn’t engaged with writing, reading or thinking about poetry.

Heaney wrote about his stroke in Human Chain – a book of poems described by Colm Tóibín as one of “shades and memories, of things whispered, of journeys to the underworld.” On the inside jacket, the poems are described as a collection of “continuities” and “solidarities.” Upon rereading the collection after my stroke, I mistake “solidarities” for “solitudes” and am immediately struck by the accuracy of my misreading. As if, standing on a busy street, I see the ones I love passing by, only they can’t see me.

“It came and went so unexpectedly,” wrote Heaney, “and almost it seemed dangerously, returning like an animal to the house.” In the past, I have sometimes walked into my house and tried to see it through someone else’s eyes – what would my life look like to a stranger? These days I am that stranger.

Like a bird with one wing

Perched on top of the brain stem, the thalamus is about the size and shape of a walnut and is responsible for processing and transmitting movement and sensory information. Four of our five senses are processed through this region of the brain (smell is not) and in people where both sides of the thalamus are damaged, irreversible coma is often the outcome. The thalamus serves as a switchboard in the brain – a kind of air-traffic controller – and plays a major role in regulating sleep, wakefulness and arousal. In the early days following the stroke, I woke with spontaneous orgasms two or three times a night. Similar to those I felt as a 13-year-old girl waking in the mornings in my mother’s house to the first stirrings of a sexual life.

Looking at me, you would not know that anything has happened. You would not be able to tell that the right side of my body, from my upper ribcage to my toes, is numb the way a lip is frozen and numb after a root canal. My speech is fine and I walk normally. There is no drooping or slurring, no hand twisted into a claw. You would not have a clue that half of my body feels wooden, as if carved out of a tree the way masks were once cut out of living cedars. The neurologist says my leg will most likely not regain sensation. The stroke I experienced is, for the most part, invisible. What I’ve come to think of as an act of stealth.

By virtue of having had a stroke I am now part of an inside circle – and, a bit like Coleridge’s wedding guest, I am both fascinated and spellbound by the stories people now approach me with. A First Nations friend tells me how, when he lay in the street following his stroke, people passed him by, thinking he was drunk. A friend talks to me about her sister, and how, after her stroke, she can only make right-hand turns when driving. Someone else stops me in the grocery store and tells me of her neighbour who collapsed in his bathroom after a stroke and wasn’t found for five days. There is something tragicomic about stroke. About a woman, who like a bird with one wing, can only fly in a circle.

Terror, love, anxiety, gratitude

The diagnostic word “stroke” didn’t appear in medical literature until 1928. Prior to that, for thousands of years, the condition we know now as “stroke” was called “apoplexy” and was used to describe a disease in which a patient falls to the ground as if struck by lightning. The “cures” for stroke, right up until the late 1800s, included bloodletting, vomits, purges and enemas.

When I was a child, growing up on Sixth Street in North Vancouver, “stroke” was a whispered word – often accompanied by a shake of the head. At the nursing home on our block – a mansion with terraced gardens that was rumoured to have once been a brothel – stroke victims sat drooling in the sun in their wheelchairs.

Not much was known about the mechanics of the brain until the 17th century, when Thomas Willis published Cerebri Anatome – a text on the ring of arteries that sits at the base of the brain like a bus loop in a large metropolis. The Circle of Willis as it is called. Ancient Egyptians believed the heart was the seat of intelligence and removed the brain with an iron hook prior to mummification. By the 5th century BC, the Greeks had connected mind and brain. A century later, Hippocrates recognized the brain as the centre of intelligence: “Men ought to know that from the brain, and from the brain alone, arise our pleasures, joys, laughter and jests, as well as our sorrows, pains, griefs and tears.” I might have argued with Hippocrates about the heart’s place in all of this. “Hold on,” I might have said, “can’t we at least talk about metaphor?” My heart bursting with happiness at being given a second chance.

One of the beauties of his stroke, wrote Heaney, was the renewal of love he felt for his wife, Marie, as they rode in the ambulance along the long, bumpy road to the Letterkenney hospital in the County Donegal. “That’s one of the strongest, sweetest memories I have,” wrote Heaney before elaborating to a friend that his feelings swung between terror and profound love.

In my first months post-stroke, I ricocheted between anxiety and gratitude; between feeling vulnerable and mortal and experiencing an intense awareness of what it was to be alive. Gratitude has a languid quality not dissimilar to grief. I felt like a traveller arriving in a new city – even the ordinary looked extraordinary. It wasn’t that things were suddenly infused with a new radiance but that my gaze – wherever it happened to fall – lingered longer.

“Now I am ready to tell how bodies are changed into different bodies,” wrote Ovid in The Metamorphoses. I have been altered – no longer exactly sure who I was but not yet sure who I will become.

Damage to the thalamus can cause people to laugh or cry spontaneously. Since the stroke, I cry easily – when overwhelmed or tired – for no reason at all. Not long ago, in a paint store, I tapped a young, scrawny clerk on the shoulder. “Can you tell me where the grout is?” I asked. He motioned to a shelf stocked with products to remove mildew. I stood in the aisle unable to fathom the instructions on a tube of “do-it-yourself-with-ease” grout and burst into tears – causing the clerk to back up and busy himself with the pneumatic paint shaker.

When Heaney, who was upbeat and quite funny about the stroke in his unflappable way, was asked about the downside, he responded by saying, “I cried and wanted my Daddy.” It had never occurred to me that one of the things I might share with Seamus Heaney was a babyish inability to control my tears.

One big experiment

In diagnostic terms, stroke refers to a sudden loss of brain function caused by an interruption of blood flow to the brain. Of the two main kinds of strokes – ischemic strokes, caused by blood clots; and hemorrhagic strokes, caused by an uncontrolled bleed in the brain itself – about 80 per cent of them, like the one I suffered, are ischemic. Nearly every weekend in the hospital where I work, somebody is delivered to the ICU with a stroke-related brain injury: a baby with a cardiac disorder, a hockey player with an undiagnosed hole in his heart, a man who fell off his ladder while picking apples. It is even possible, I am told by the doctors I work with, for a baby in utero to experience a stroke. There are an estimated 50,000 strokes in this country annually. Of every 100 people who have a stroke, 15 die immediately, 10 recover completely and 75 are left with moderate to severe disability.

For every minute delay in treating stroke, the average person loses 1.9 million brain cells. It’s hard, if not impossible, to take in a number like this. Poetry, though, can often catch what statistics are not capable of expressing. I can’t shake the image of the stroke returning like an animal to the house. The stealth of that. The sudden appearance of a face at the night window. Like the fox in Ted Hughes’s poem entering with a sharp hot stink into the dark hole of the head.

Of the risk factors for stroke, including smoking, excessive drinking, lack of exercise, obesity, high cholesterol and – the No. 1 risk – high blood pressure, I have one – sort of. Six years ago, I developed atrial fibrillation, a condition in which the heart’s two upper chambers beat chaotically and irregularly, out of co-ordination with the two lower chambers. A bit like the way I waltz. When blood is not being pushed through the heart efficiently, it pools and can form clots. About 15 per cent of all people who have strokes have a-fib, too.

Five years ago, I underwent a number of cardiac ablations – wherein a catheter was threaded into my heart, and heat was used to destroy the areas causing the abnormal rhythm. According to the cardiologist, my atrial fibrillation is completely cured. He doesn’t know what caused my heart to release a clot into the aorta which then travelled through the carotid artery to the Circle of Willis and from there branched out into one of the brain’s many tributaries and got stuck in an artery deep in the left half of my thalamus.

My son-in-law, who is a doctor, tells me to think of it this way: “The heart is a giant lake out of which a river flows, and when one of those large trees, felled by a winter storm, snags in a bend, it blocks the flow of water.” This imagery is helpful. It amuses me. And I think of it in late October, when I’m pushing Ava in her buggy along the banks of the Squamish River lined with riparian stands of cottonwood. There are no downed trees. No snags. The water, a glacial blue, flows unimpeded from the Pemberton Icefield to its mouth at the head of Howe Sound.

I imagine blood running through my veins like a fast-flowing river, until I learn that anticoagulants, like those that occur naturally in leeches and blood-sucking insects, don’t actually “thin” the blood; rather, they decrease the blood’s ability to clot.

Without blood thinners, my risk for a second stroke more than quadruples. The drug I have been told I will need for the rest of my life, Pradaxa, was approved for use in Canada only in 2008. Unlike its more established counterpart, Warfarin, which has been used in this country for almost 60 years, Pradaxa is a relatively new drug. I am in the midst of one big experiment. As of Sept. 30, there had been almost 2,000 adverse-reaction reports and 328 deaths linked to its active ingredient in this country. The side effects of the drug include gastrointestinal, rectal and brain bleeding.

I could switch to Warfarin, but studies show that the best drug for atrial fibrillation is Pradaxa. One of the drawbacks of it, I’m told, is that, if I start to bleed, it may be damned near impossible to stop the flow. Not long ago, when walking home along the Galloping Goose – a regional trail for pedestrians and bikes – I was struck by a cyclist going full speed. I flew through the air and landed on the wooden deck of the trestle, where we collided. This time, I asked Patrick to call an ambulance. I had no idea, as I lay there, whether or not I was bleeding to death.

I feel vulnerable in ways I never have before. We live with calculated risks. I balance the odds of having another stroke against the risk of hemorrhage, and I choose the latter.

Something we can run out of

In many ways, mine is a non-story. I did not experience a catastrophic stroke and a miraculous recovery. I belong to a select group called “the lucky ones.” The ones whose stories have to do with near misses and what ifs.

Recently, I had a fender bender. Smacked right into the big black bumper of a Ford 150 pickup stopped for a red light. Would I have done this before the stroke? I don’t know. I used to be able to juggle many things; but lately, there are more balls on the ground than in the air.

Mine, instead, is a story of minor adjustments and alterations – more chiropractic-sounding than neurological. “Thanks be to goodness,” said Heaney for the recovery he made from his stroke. Thanks be to goodness, indeed. It feels like a blade passed very close but only nicked me. Whenever I’m told “you were lucky” I can’t help but think how fickle luck is. It’s something we can run out of. I don’t feel particularly lucky or unlucky; rather, I can’t shake the feeling of having been marked. A red stroke by my name in the book of accounts.

‘There is no pill’

Descartes imagined the brain as a complex machine made of specialized parts hard-wired for specific functions. Today, we know he was wrong. Neuroplasticity, the term for the brain’s ability to regenerate and reorganize itself by forming new neural connections, is now a hot topic. The tissue in my brain that was deprived of oxygen is dead. Nothing will bring it back. What wasn’t known, until recently, is that other nerve cells in the brain are capable of forming new neural pathways when the old ones are compromised. The late neuroscientist Paul Bach-y-Rita, of the University of Wisconsin-Madison, described the brain’s plasticity this way: “If you are driving from here to Milwaukee and the main bridge goes out, first you are paralyzed. Then you take old secondary roads through the farmland. Then you use these roads more; you find shorter paths to use to get where you want to go, and you start to get there faster.”

Strange recovery stories abound. In the 1970s, it was observed that some stroke patients, who were no longer able to talk, could sing. Taught to sing their words, the patients continued to speak in a more “sing-songy” voice when language returned to them. For some reason, melody and rhythm can sometimes bypass damaged language circuits. U.S. congresswoman Gabrielle Giffords, after being shot in the head in an assassination attempt, learned to speak again by singing Cyndi Lauper’s Girls Just Want to Have Fun.

Music, it seems, may be one of those old secondary roads Bach-y-Rita wrote about. Recently, I read about an experiment at the Harvard Medical School in which one group of volunteers was instructed to practise five-finger piano exercises for two hours a day; a second group was told to merely think about piano exercises – to hold their hands still but imagine how they would move their fingers. When both groups were tested, a week later, it was found that brain cells devoted to finger movements in both groups had spread “like dandelions on a suburban lawn.” It appears that people who rehearse something imaginatively can develop the same neural pathways as those who perform the action.

“What can I do,” I ask my neurologist, “to help my brain regenerate?” “Food” he says, “is the one thing that feeds the brain in the way it needs to be fed.” “There is no pill,” he adds, “that comes close.” Although it’s hard to sort through all the fads about food in the media, a number of large studies show that omega-3 fatty acids in the diet help to prevent plaque buildup and blood clots in the arteries. My diet now mainly consists of salmon, blueberries, kiwis, nuts, avocados, tofu, seeds and whole grains. Along with, I might add, sea-salt chocolate and Scotch.

Has poetry deserted me?

Since the stroke, I’ve read whatever books I can get my hands on about the brain’s ability to regenerate. In My Stroke of Insight – the book everyone said I should pick up – brain scientist Jill Bolte Taylor, writes “We have the power to choose, moment by moment, who and how we want to be in the world.” My aversion to this kind of thinking is visceral. What of the people whose brains don’t rewire? The ones who sit all day in their wheelchairs in the sun? Or the ones like me, who are altered in subtler ways? There is no room for the shadow in these recovery stories. No room for the shudder, the tap on the shoulder that comes when we’re just living our lives. Chatting in the kitchen, making a sandwich for our kid. It’s hard not to be haunted by what might have been. What still could be.

According to my neurologist, the clot just missed the language centre of my brain. I think of Seamus Heaney crying uncontrollably, and of the Swedish poet Tomas Tranströmer, who suffered a stroke in 1990 and, in the absence of speech, and unable to use his right hand, has carried on playing left-handed piano pieces. And who, in a kind of pre-stroke prophecy in 1979, wrote these lines:

I come upon tracks of deer in the snow.

Language but no words.

I think of what it might be like to have language but no words. To live in a room nobody else can enter.

And I think of myself and how the stroke may have affected my own creativity. I am writing this essay during a month-long writer’s retreat in a cabin in the woods – actually a converted fishing boat – at the Banff Centre, thinking about brain injury and creativity and what it might mean that I have not written a poem since the stroke. I feel an odd sense of detachment. I see the dappled light on the long grasses outside my window, I smell the dry needles of the lodgepole pines, and I sit on the deck of my boat and feel the sun on my shoulders. But the spark, that small fire that leaps from the present moment into reverie and imagery, is missing. It’s as if I’ve returned home to find my house robbed and my most precious possession gone.

Poetry is how I see the world and how I know I’m fully alive. It feels as essential as breath. It calls me to be present and shows me things as if for the first time. And it comes to me, like a thunderbolt, in the still heat of the summer afternoon, that the thalamus controls the senses, and that poetry, which has felt so inaccessible to me, lives and breathes through the senses.

Is it possible, I wonder, like the Harvard piano players, to imagine my way back to poetry? To keep a log, a journal, something to record what I see and hear, touch and feel as if I’m learning for the first time?

I don’t know, but sound seems like the best place to start. Each morning, on my way to the boat, I walk by the music huts at the Centre, where the flautists are practising. The notes are as silver and slight as the instruments they hold in their hands. Earlier, on my 15-minute walk to town, I heard the magpies chattering in the graveyard as if the dead were channelling them. Then, like clockwork, the ravens began to argue like Hasidic scholars at 5 p.m. sharp. I have lines. That’s a start. But I can’t seem to put them together into a poem. They sit apart from each other like colours on a Rubik’s cube that I keep twisting in order to find the pattern. I don’t know if poetry has deserted me. It’s quiet tonight in my landlocked boat. I listen for what might come.

The happiness of reprieve

I feel more exposed these days, closer to danger. Aware of what it is like to live in an undefended body. Thinking of the small stories we live with. The grief and surprises, the imperfections and the way we just carry on – not in spite of our fears but with them raw and palpable within us. The numerous and complex vulnerabilities that do not need to be named or even figured out.

A few months ago, I asked Saul to tell me what he remembered about the night of the stroke. He didn’t want to talk about it. In some strange, unspoken way it has brought us closer. He doesn’t say anything, but there is a deeper tenderness between us. I see it in the way he looks at me when we meet for a coffee, or go for a walk down on the beach – as if he’s memorizing my face. Pausing, just for a second, before the look is gone and he’s back to bantering and teasing me the way he always has.

I don’t cry as much as I first did but my emotions are closer to the surface. I have a more immediate response to things. Sadness, which has never been too far away, is closer but more fleeting. Happiness ambushes me – the kind of happiness that comes out of a sense of reprieve. A near miss. Shortly before his death, Heaney texted his wife. Noli timere he wrote. Yes, I think to myself. Noli timere – Be not afraid.

Eve Joseph’s The Startled Heart and The Secret Signature of Things were both short-listed for the Dorothy Livesay Poetry Prize. Her non-fiction work, In the Slender Margin: The Intimate Strangeness of Death and Dying, was chosen by The Globe and Mail as one of the 100 Best Books of 2014.

Editor's Note: In an earlier version of this story, it was incorrectly stated that The Globe and Mail is a partner with the Banff Centre.

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