Heart burn (Part 15)

While dying of prostate cancer, New York Times book critic Anatole Broyard wrote about “the therapeutic value of style.”

In Intoxicated By My Illness, he observed: “It seems to me that every seriously ill person needs to develop a style for his illness. I think that only by insisting on your style can you keep from falling out of love with yourself as the illness attempts to diminish or disfigure you.”

I’ve long envied literary men who write boldly about their various afflictions, fatal and otherwise, knowing that their ability to do their job is never in doubt and they relish the protection that their reputations afford them.

This is not the case for shift workers, dishwashers, desk jockeys that fill boxes with numbers for a modest salary, or almost anyone else. And not for girl reporters trying to figure out how to work sick.

I am currently reading Working Bodies: Chronic Illness in the Canadian Workplace (McGill-Queens University Press, 2014). It is dedicated to “all Canadians living with chronic illness who want to have meaningful employment and engagement in the workplace.”

The book, by three academics, is a mix of personal narratives and academic research. I keep rereading the pages about the perils of telling managers you have an illness, particularly one that is relapsing and remitting and requires ongoing flexibility, not a new desk or a ramp.

“There is considerable evidence that disclosure of chronic illness can make one vulnerable to job loss,” write the authors, citing various consequences, including stigma, lack of workplace support, ignorance of human resources managers, and routine denial of doctor-requested workplace accommodations.

“Altogether,” they write, “people with chronic illness appear to have a good reason to be leery about disclosing their status.”

This studied observation unfortunately seems more true to me to than the “be sick with style” urgings of Broyard.

Silence was my early style, even when the pain infiltrated my heart.

Jackhammers

The pain I’d feared began like the construction starts each morning in my neighbourhood, overtaken by infill.

Around 6.45 a.m., cheating the bylaw-sanctioned 7 a.m., a few tentative hammers pound nails, as though the day labourer is also still waking up. He takes a few more swings before he starts throwing 2-by-4s around the job site. Then suddenly, there is a jackhammer. He has to break through the shale. And it’s relentless.

At first, the pain in my chest was slightly on the left, above my heart. I kept trying to poke my finger through my ribs and touch the fulcrum, as if I might be able to rub it away. For the first few days it was intermittent, then it became a prison guard that didn’t trust me to be alone.

The tight cramping would spread across my chest and diaphragm, becoming a sharp stabbing pain that spread up my neck and shoulder, down my arm.

Soon, I felt it with each heart beat.

People routinely describe pericarditis, inflammation of the fluid-filled sac around the heart, as a ‘10’ on the pain scale.

It got worse when I bent too far forward, coughed, breathed deeply, or lay on my back. I couldn’t figure out how to sleep, except leaning against the wall. I couldn’t risk a sob.

I kept showing up to work, taking my assignments, while trying not to laugh, cry, breath deeply or run. I simply had no idea what else to do. It didn’t even occur to me to call in sick because sitting and sleeping was so much more painful than moving.

If I told anyone at work I don’t remember. I doubt it.

While I was waiting for an appointment with my rheumatologist, the Hospital for Sick Children offered the Star access to an open-heart surgery of a little boy. There was a nursing shortage and cancellations of heart surgery were common. There had already been 26 in the first two months of that year. The PR team hoped my story would illustrate how cancellations harm children. The Star accepted the offer and assigned me to follow the boy through the process.

There was some sort of twisted synchronicity in me, with my inflamed heart, getting this assignment. I self-medicated, increasing my prednisone dose to 20 mg, then 30. I knew what was coming.

When I saw my rheumatologist, he already had the results of the Electrocardiogram and Echocardiogram he’d sent me for. There were telltale changes in my heart rhythm, and I had a pleural effusion, or fluid around my heart. He increased my prednisone even higher, to 60 mg.

I was more freaked out about being on another high dose of prednisone than I was about the pericarditis. I didn’t want my skin ripping, or colleagues touching my face, as my classmates had. I didn’t want the ‘crazy’ that comes with high doses of corticosteroids. I had time owing and booked a week of holidays for March, after the little boy’s heart surgery was scheduled, assuming it wasn’t cancelled. I was learning to be practical; a problem solver. Some people call it resilience. Or stubbornness or failure to take care of oneself.

Perspective

When I met six-year-old Craig Légere and his family, I still had considerable pain when I breathed deeply, lay down, laughed. But meeting this boy, with atrial septal defect—a large hole in his heart that caused about three times the normal amount of blood to pass through his heart and lungs—reminded me that there’s always someone who has it worse.

The boy said to me, “There’s too much blood going into my lungs,” he confides when his parents aren’t around. “My heart could explode.”

I know this because I documented it my story. Two days later, greeted him at the hospital and watched as his parents said good-bye.

The cold steel doors of the elevator slide shut. Gerry Légere wipes tiny tears from his eyes and silently walks back down the corridor to his wife Kim. They embrace. It will be nearly five hours before they see their son again.

Then, I was in the operating room as they sawed his chest open to patch up the hole in his heart.

It takes less than 20 seconds for an oscillating saw to cut through the bone of the sternum. The room smells like a dentist’s office after he’s used his drill.

Rereading my writing, it’s heavy with cliché – brave little boy, tiny tears, helpless parents—but it’s crisp and suspenseful, with a beginning, middle and end. It was the first narrative I’d written, and I was smitten.

Back in the newsroom, I remember trying to make as few movements as possible, while I wrote my piece, wondering when the full freight of prednisone would finally hit me, lessen the inflammation.

After I completed my first draft, Jim Wilkes, a kindly reporter-photographer, sat beside me late into the evening and coached me to empty my notebook of telling details and drama. He seemed to know I was suffering.

When I submitted the story, the city editor asked: “Did you write this?” It was meant as a complement.

Homecare, self-love

When I arrived in Coquitlam, I felt bad for my parents, having a sick daughter again sleeping upright and whimpering on the couch. I felt bad for them, too, because I knew they felt helpless.

But I had a plan. I’d brought my copy of Dr. Bernie Siegel’s Love, Medicine & Miracles home with me. In the late 1980s, the belief in the power of positive thinking and guided meditation was so prevalent I felt very strongly that I could beat the inflammation back with creative visualization.

Twice a day, I sat quietly in my room and imagined little warriors marching inside my blood vessels defeating my overactive immune system. I also threw in a little of Louise Hay’s self-love imagery, figuring it could help.

By week’s end, my pain was almost gone and I was able to sleep in my own bed. Soon I was walking the streets, admiring the spring blossoms with my mom.

Back in Toronto, my rheumatologist reviewed my latest blood tests to find my complements had normalized, while my white count was in the normal range. He verified with a repeat of the Echocardiogram. He told me he’d never seen a case of pericarditis evaporate so quickly. He let me cut the prednisone in half and once again begin the tapering experiment.

I still remember his words when I cautiously told him about my visualizations. “You need more in your toolbox than just prednisone,” he said.”Whatever works.”

A few months later, I’d win my first award for the story on Craig Légere. It meant a lot to me, even if it was from the Health Care Public Relations Association of Canada and I’d served the hospital’s purpose by writing about the nursing shortage and cancelled surgeries.

But it had served me, too. I had the first inkling that I wanted to write narratives.

And that’s the dream I focused on. I’d just recovered from pericarditis and was wacky on too much prednisone, but I figured I could get through whatever was thrown at me. I embraced the naiveté of positive thinking. It had a certain style to it.

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4 thoughts on “Heart burn (Part 15)

  1. Cecilia Fjeldsted

    When I read your work I realize how talented you are and like others, don’t have any idea what you went through . I look forward to every new episode .

    Liked by 1 person

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    1. Shelley Page Post author

      Thanks Aunt Cecilia…I think most people have limited knowledge of what it’s like to have an autoimmune disease, and of course there are varying degrees of it. I fortunately have a healthy respect for the ‘anecdotal value of things’ so now I can write about it! Thanks so much for reading.

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  2. redosue

    I’m not sure reputations are all that they’re cracked up to be, Shelly. Look at what happened to Jan Wong. I would have thought her journalistic and writing credentials would have given her some protection. Nonetheless, I think the “Working Bodies” author is right. Telling your employer about a chronic illness – physical or mental – is risky business.

    Liked by 1 person

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