All that I know is he’s breathing
by Heather Summerhayes Cariou
…All that I know is I’m breathing. All that I know is we’re breathing…now.
– Ingrid Michaelson
Into this breathing world he came, my brother, when I was not quite ten. He made me the oldest of four; two girls, two boys. A scrawny milk-white chicken of a baby, a wedge of softly marbled Maytag Blue, with a distended Buddha belly and an umbilical hernia. Lying in his crib, he looked like a fallen angel painted by a Dutch Master, with a curly halo of blonde hair and a pair of deep riverwater eyes. I do not exaggerate but will admit to a gaze imbued with a sense of the tragic, both romantic and real. I came by it honestly.
I fought my sister for him, but eventually she claimed him for her own. He was so like her after all. She, too, was scrawny and milk-white, softly marbled and violet lipped. She too had fingers gently clubbed, and salt-lick skin. She was not quite eight when he was born. Her first four years of life were wracked by multiple pneumonias. As if fed by muddy springs, her lungs filled up with sludge as fast as she could empty them with racking coughs. She starved for breath. My parents kept a kettle boiling near her bed and draped a sheet from rail to rail to apprehend the steam, in hopes that it would help her breathe. For weeks on end our house was redolent with the smell of oven roasted mustard-onion plasters my mother wrapped in ragged flannel squares and laid upon my sister’s chest with excruciating care.
Month after month, year after year she was tested for what ailed her; sweated out in suffocating blankets, pricked with needles that left inflaming marks all down her arms and full across her torso, x-rayed, then x-rayed again, and again and again, and yet again, blood drawn so many times from one elfin arm they were forced to use the other. She sat obediently in chilly cubicles beneath a harsh florescent glare, her fairy body, almost weightless, stripped naked and examined by all manner of physicians; men with grave faces, cold hands and frigid stethoscopes who instructed her to take deep breaths, that’s fine, that’s good, let’s have another one. Soberly they auscultated, listening to each lobe with care and great concern, moving their scopes here and there and all about her chest and back, growing ever gentle with their touch. She breathed as they commanded, offering up a symphony of rales and crackles, wheeze and stridor. The concert always ended with an earthquake in her chest. She coughed as if her lungs were being fracked by air she had forced deep enough to try and please them. They stepped back then, stuffed their hands in white coat pockets, inhaled their own deep breaths and woefully exhaled with damning sighs and groans. Finally it was concluded and concurred that my sister had been born into this breathing world with a rare and lethal inability to breathe.
“She has Cystic Fibrosis,” two doctors told my parents, facing them across a table in another cubicle, this one hot and airless. They studiously refused to meet my mother’s gaze.
“How long does she have?” my father asked.
“Six weeks, six months, six years, depending how she’s cared for. The fact is we don’t really know. All we can say is take her home and make her comfortable.”
With that the doctors rose and left to see another patient, breathing with relief as I imagine, and more than pity, that hard task over and done.
My parents told us both the truth, gently but forthright, explaining it as far as we could understand. So as I said, my sense of the tragic was real, and terrible, and came quite honestly. The only way a girl like me could carry such awareness at the age of not quite six was to find the romance in it and embrace the inherent drama, which I did with all my heart.
My family learned to breathe anew, and multidimensionally. We didn’t just breathe air. We breathed beyond limits, our own and those imposed by medicine. We breathed raw courage, willpower, and resolve. We breathed hope, but not that thing with feathers perched in the soul. When we breathed hope, we wrestled with the angels; it was muscular and wrenching. Forced to inhale the faithless, deadly vision offered by mid-20th Century medicine, we exhaled scorched-earth sorrow and sometimes rage, a virtue at which I grew to be particularly adept.
Against the stern advice of Chief of Staff and other gruff-voiced doctors who sat glowering around a conference table, my parents sought to contact other parents who had children like my sister. It was on my 7th birthday that 100 parents met at Sick Kid’s in Toronto, some having driven overnight and many hundred miles. Some carried milk-white, blue-marbled fairy-children in their arms. My father, who was not quite 27, promised he would try everything he knew to save them. What did he know? He only knew he had to keep my sister breathing.
I found escape from illness and anticipatory grief in books. By the time my youngest brother came I’d grown precocious in my reading and vocabulary. That year was watershed not only for his birth, but because it was the year that I was introduced to poetry, in a red hardback textbook titled Wide Open Windows. I inhaled it deeply, found it more fortifying than the air, though I did not need Dickinson to tell me Death would kindly stop for us someday. Instead, I wrote my own poems and stayed awake at night as long as possible, listening to my sister try to breathe.
The Canadian Cystic Fibrosis Foundation had received its charter and my parents ran it from our kitchen table. The cupboards in the family room were stuffed with pamphlets headlined Give a Child the Breath of Life. My father flew from one end of the country to the other raising funds for research and cultivating volunteers. We’d found a pediatrician named Lee Matthews in Cleveland, 300 miles southwest of our small Ontario town. Respective of the time and place, Dr. Matthews knew all there was to know about C.F., and so we travelled regularly cross-border to put my sister and my brother in his care. We had our instincts and our quiet fears about the baby, but it took two more years and three separate diagnoses to officially confirm them. Just like my sister, our baby boy had come into this breathing world with a rare and lethal inability to breathe.
Theologian Frederick Buechner once wrote, “Here is the world. Beautiful and terrible things will happen. Don’t be afraid.” It will have to be enough to say my sister outlived her prognosis by sixteen years, and that what Buechner wrote encompasses the essence of her life and how she lived it. I’ve written of her mighty sojourn at other times and in other places, but for now it must be enough to tell you that she died peacefully at home in her own bed, surrounded by our family, when she was not quite twenty-six. Before she breathed her last, she looked up at us and said with clarity and calm, I’m not giving up.
I did not believe that I could breathe without her, but the body has a way of taking over when you’re in distress. Breathing is an involuntary life-sustaining function regulated by Medulla, Goddess of Breath, who insisted I keep breathing and living even though it went against my will for many months thereafter.
When my sister died, in many aspects and for all intents and purposes my family went our separate ways, meeting up again at Christmas, on landmark birthdays, and for medical emergencies. My mother, who had only just graduated from Nursing School, went swiftly back to work saving other lives. My father chased new business ventures. Our middle brother, newly married, became a Constable with the Ontario Provincial Police. I took my keen sense of the tragic, wrapped it my rage and sorrow, and spun it into the career I was building as a theatre actor.
I think it’s fair to say our youngest brother, not quite eighteen and believing he was cursed to die in relatively short order given circumstances and statistics, went out to wander in the wilderness, where he more or less remained for over thirty years, a fallen angel. He yearned to breathe free and test himself against the elements. He found adventure and exhilaration in his search for freedom, but also loneliness and trouble. While he astonished everyone with his longevity, he learned in all the hardest ways he still could not escape the airless prison of his body. He could ride the air on his red S1100 motorcycle, but his lungs could not command it.
***
I barely breathe all night. In the bowels of Vancouver General, in a chilly white-walled waiting room I sit alone, my exhalations shallow; no more than pitiful little bellows fanning the smoke of prayer to a God in Heaven who, I have to hope, presides up there somewhere beyond the unforgiving phosphorescent lights whose glare can neither be shut off nor dimmed. More than once I have to tell myself to take another breath. “Waiting Room,” I swear beneath it. “A euphemism in the first degree.” There is nothing in a room like this inviting you to wait.
My brother’s lungs, so I imagine, are being scooped out with a melon baller down the hall and far away in a secret, bloody cave from which, it seems, no fated messenger is allowed to stray and give me word. My brother’s surgeon performs bilateral lung transplant with his own impeccably curated team. They work with him and with each other, no one else. They work their magic overnight, when operating rooms are not backed up and they have room to breathe. Like in a fairy tale, as I imagine it, they will reach inside the cradle of my brother’s chest and switch the cursed child for the blessed.
They remove the worst lung first. In the time it takes to clean the cavity and stitch the donor lung in place, he will have just the other mushy, rotting lung with which to breathe. When that task is complete, they fill the new lung like a birthday party pink balloon, and move on. The thought inspires me to take my own deep breath and feel my lungs, trying to imagine.
My phone rings at 5 am. I answer with a sharp inhale and hold my breath while the surgeon runs it down for me. He’s very pleased. Not only did my brother make it through, he required neither bypass nor transfusion. They’ve given him a beautiful new set of lungs. Or as my brother joked sardonically with the air ambulance team that flew us here 12 hours ago, “slightly used.”
“Nice lungs,” the surgeon says. “Strong.”
I am on my knees grateful. I sense my sister’s spirit in the room. I swear I can feel her breathing softly next to me.
***
Into this breathing world he came, my brother, when I was not quite sixty-six. A scrawny chicken of a man, beat-up, bruised and scarred. It must be enough, for now, to tell you that for many months post-surgery his life was threatened with bacterial infections and several AKI’s. It must be enough to say that I have no words sufficient to describe his suffering, except that I breathed with it, and through it, and his new lungs did the same.
But allow me to break out of story for a moment here to take a breath, and let you breathe as well. Let me pause and speak instead of Northwest winters, atmospheric rivers in the sky, and as my brother puts it, how the air smells green when Spring arrives there. I’ll paint Vancouver Island gold with April pollen falling from the wakening pines, and pink with bursting cherry blossoms. Step outside with me and let’s inhale the air made sweet by forests breathing in and out, their fruity emerald leaves and waving branches proof of life reborn.
We hold our breath in fear, waiting for bad news. We hold it too, in hope, waiting for the good. As much as the act of breathing is involuntary, in and of itself breath is eternally contingent. In almost every language, breath translates as Spirit. The Hebrew word for breath, ruah, means “air in motion: sometimes the wind…,” says Michael Boadt, Paulist priest. My brother likes that definition. Two years and counting after transplant, he calls to tell me all about his ordinary-by-appearance, but in every way we understand, extraordinary days.
He wakes, and his first thought every morning is the same he had when he woke after surgery. Fuck it worked! He climbs aboard his red S1100 and, as he tells me, laughing, takes an hour to get to breakfast. He is air in motion, riding on the wind. His spirit stretches out before him to inhale its freedom, breathing in Vancouver Island, the soaring hills, the fields and forests, rivers, lakes and bays. He reads the clouds for signs of rain and blesses the emerging sun.
He has skirted death throughout his life. Choosing to play the odds of transplant, he’s made one more valiant stand against it so he could come into the breathing world – not for the second time, but in reality the first – with lungs that have a vivified ability to breathe. Ironically, he stepped upon the threshold just as Pandemic once more closed it off him to it, at least in part. At least for now.
And yet…he wakes, says Fuck, it worked!, gets out of bed, hits the road, and heads out for the vibrant hills. He laughs. With great gusto he shares astute and pithy diatribes on politics, climate change, and motorcycle madness. Now and then a cold Red Rickard’s, maybe two. He beams gratitude, sanguinity, equanimity. He digs his bicycle out of storage and begins to rehabilitate his body. He pumps it up a hill and calls to tell me, full of awe and wonder, that though his legs gave out he never lost his breath. He shouts out how astonishing it is to have lungs that work as they’re supposed to.
Lung transplant wasn’t reparation, in the accepted sense of instituting a repair. The etymology comes from the Late Latin repare, reparatio, meaning to make ready again. To make ready we inhale. We fill our lungs to full capacity.
My brother says though still in quarantine, he’s not just waiting. He’s making ready to come into the breathing world again as soon as it’s available. Until then, he says, just living is what it means to be alive. For now, to live is just to breathe.
I’m like a child looking off on the horizon
I’m like an ambulance that’s turning on the sirens.
Oh, I’m still alive
I’m like a soldier coming home for the first time
I dodged a bullet, and I walked across a landmine
Oh, I’m still alive.
Am I bleeding?
Am I bleeding from the storm?
Just shine a light into the wreckage, so far away, away
‘Cause I’m still breathing
‘Cause I’m still breathing on my own.
– Still Breathing, by Armstrong Billie Joe/Parkhouse Richard James
Heather Summerhayes Cariou holds a BFA in Performance Art/Theatre, and an MS in Narrative Medicine from Columbia University. An actor and writer, she is the author of Sixtyfive Roses: A Sister’s Memoir, and a life-long caregiver and patient advocate. She revels in the life of the mind and the open road of the heart. Currently she is writing a book about her brother’s double-lung transplant, and collaborating with author Ann Burack-Weiss to bring her memoir The Lioness in Winter to the stage.