Before he got up to leave, that anesthetist must have really seen her. My sister, scared, alone, her body slumped over, her face a mask of fear.
He said, “Heather?”
She looked up at him.
“You’re a young woman, you’re healthy, they caught this early, and you’re going to be fine.”
His face so kind, his words so authentic. The clouds parted.
Yes, she thought. He’s right. Of course I am.
It was the work of Asclepius. A perfect blend of science and heart.
* * *
JUST BEFORE LIFE was imploded by COVID-19, I had my hardest case of all time. It had nothing to do with the virus. It involved a mother and her baby.
These are frightening times, when we are all struggling to keep the pieces of our lives from shattering into fragments, wondering what is left if they do shatter, and how we will ever return to the life we had before. We won’t return to that life. We are never, ever going back. That is my most important lesson from Chapin Mill: the moment we accept this is when our next life begins.
The Very Last Story
Or, Turning Towards, Not Away
BY JILL H.
I
It was October. I was on call. That weekend there was a storm. I slept over in a hotel attached to the hospital, because the roads were clogged with snow as thick as plaster. I got my first call about her just before midnight, a woman in her thirties, a woman with cancer that had been diagnosed just before the birth of her first child. It was late, the resident was talking quickly, and I couldn’t follow him at first. Sorry, how old’s the baby? Six weeks. What happened six weeks ago? She had a baby six weeks ago. I kept thinking I’d misunderstood. So why isn’t she going to Obstetrics? She has brain metastases. The resident repeating this patiently, at least three times. When did they find that out again? Thursday. She learned she had brain mets Thursday.
Today is Friday. She’s in with vomiting, headaches, intractable nausea.
I ask the resident his plan. Get it under control with medication, get her back home to be with baby. Are there treatment options? Nobody really knows.
Trying to grasp this, as I hung up the phone. Forgetting her name and the details of her cancer, but remembering over and over, her baby is six weeks old.
I’m not prepared for how beautiful she is. I’m used to people looking sick. Yellow from liver damage, wasted from cancer or emphysema, bloated with fluid oozing out of their skin from heart failure. She looks perfect, as if there has been a mix-up, as if she is one of the nurses and the night had been so difficult she’s just had to lie down. Lying still and silent because her head hurts so much. Headaches she’s had for two weeks, intractable, intolerable; vomit spraying and hitting the wall, bits of food projecting across the room. Trying in between to hold her newborn baby for short bursts. She’s had migraines before. Some people get them in pregnancy and postpartum, with all the hormone shifts. We call them migraneurs. But she isn’t a migraneur.
She is dying.
We get her up to a bed on the ward. I call medical oncology, talk to the staff doctor for half an hour about our options. I call Radiation Oncology. They’ve already heard about her case. The staff physician has looked at the images. Her entire brain is full of metastatic deposits. There’s almost no brain left, he says. But he doesn’t say it like an asshole, like that doctor who said it about my sister. There’s sorrow in his voice, the same bewilderment I feel. I look at the scans myself, sickened, photos of a crime scene. Black holes, tumours, like bubbles coming up from under water.
I’m still staring at the pictures on the computer at the nursing station when her mother comes and asks for me at the front desk. The mother has long, dark hair and a sweater covered in stars. She wants to talk to the staff doctor. I go up to the desk. Before I’ve even introduced myself, I am hugging her. We pull two chairs into a backroom by shelves full of hospital laundry. She puts her hand face-up on my lap, an invitation to hold it, the way my boys set their palms in front of me when they get a splinter, knowing Mom will fix it. I take her hand, and we sit on those chairs in the utility room, and I tell her I have talked to the oncologist. We’re still going to try to get the swelling down, to get her to a point where we can give chemotherapy. She cries. I cry too. Her husband. Her mother. That little baby.
Is it a boy or girl?
It’s a boy.
I ask his name, even though it hurts to know. I notice that it hurts. I don’t want that baby to be real. If I don’t know his name, he can stay an abstraction.
I learn his name.
We’re still talking in the backroom when the nurse comes to find me in a panic, says the patient doesn’t look right. I go straight to her room. Her eyelids are heavy now; she’s not moving. I order Narcan, an opiate antidote, in case it’s from the morphine. She wakes up a little, starts thrashing and hitting at the air, speaking nonsense. I know it’s not the morphine. Her pupils are big and equal. I’m sure she’s had a seizure. I call the ICU. Another scan. A central line in her neck, anti-seizure medications, pushing the only drug that could stop the swelling in her brain that’s advancing like a wall of fire.
A baby at home. Six weeks old. He might be smiling now, a social smile. You still have to support his head.
Her husband, in the periphery of my vision. He doesn’t know me. He has to trust me, is forced to trust me, a woman he’s only just met. I want her to go to the ICU if she needs to, I tell them. Are we all on the same page? We are all on the same page. I hate this fucking page. She walked in here, for God’s sake. She had a baby six weeks ago.
I am even more afraid of what’s going to happen when we turn this page.
It all goes downhill overnight, faster than any of us expect, even with everyone on standby and ICU coming every hour and her moved in the interim to a bed where she can be watched like a hawk. The pressure in her brain so high. By the morning, intubated, ventilated, she’s in a coma. Her family, around her bed, understanding on their faces, but not ready for the unfathomable, not yet; it’s still too early. I go see them in the unit, and the mother collapses, sobbing into my arms. Tears pouring down my face too. The daughter still wearing a watch. A Fitbit. The futility of it. The cruel joke of that device. Her hair, brushed and pulled to the top of her head in a perfect, messy bun. The last time you get to do these things for someone you love more than anything, can you imagine? A fleeting thought: my mother doing this for Wendy for years and years. Brushing her hair. Washing the bowl.
I notice I am thinking about Wendy and my parents. That monumental loss.
It will pass. Don’t run from it, let it be here. Tell it, I see you.
When I step out of the room, I’m blowing my nose. The young nurse doesn’t look at my nametag, asks sympathetically if I’m a friend. I tell her I’m the doctor from the medicine ward. She looks surprised.
II
Two months later. A Sunday. Maureen takes me in, welcoming me at the door. We hug for a long time. David comes down with the baby, the house full of light and brick and hardwood. I’m so happy to see him. I give him a long hug too.
A huge canvas print of Hilary, from the service. Dancing, with that wild head of hair. Maureen gets another photo, shows it to me—Hilary in cute pyjamas, holding the baby just after he was born. Face upturned towards the camera. So proud. A mother for only six weeks.
Although you never stop being a mother. Or a sister. Or a daughter.
What happened that weekend? It’s not the purpose of my visit, but we go over everything. Not with charts. We just need to talk about it, review it together, relive what happened at different moments that day. And the parts that happened before we met. The diagnosis. The timing of the delivery. The start date of the chemo postpartum, the staging, the other plans. What if? What if the baby had been induced earlier? What if they’d known earlier about those brain mets?
I tell them I know I did everything I could. We all did everything anyone could have done, and nothing could ha
ve changed the outcome. I know this unequivocally; I’ve been doing this for a long time now. I know they can see that I know it. Hilary is gone, but they’re like my patients too, the ones I can still help. This is a part of closure, even though the wound will never really close.
Did I have any idea she was going to die the weekend we met?
No, I really didn’t. I thought she had more time. I wanted her to have more time.
All the while, here and there, I’m noticing my breath. Noticing what’s present for me. Calm. Grief. I can be present with grief. Grief isn’t here to hurt me.
I turn towards it.
I watch the baby. Quinn. He’s over three months old now. He tries to suck whatever gets within range of his pink mouth, those little ridges of gums just visible every time he cries out. I watch David give him the bottle. He holds him forward-facing and rocks him rhythmically. The baby is watching everything, his eyes latching onto each movement, his head turning in the direction of sound. David puts him in a bouncy chair under a mobile, and he flexes and extends his limbs, his whole body arching with excitement. Coloured stars and planets pass over him, drifting back and forth in the warm air from the furnace vent.
Maureen makes salad, and bread and cheese. She brings me coffee in a clear glass cup. There are chickadees at the window. It’s hard to take my eyes off the baby.
Maureen asks if I remember the moment we met. Of course I remember. I tell her I could never forget her. I tell her I remember the stars.
The baby burps. He has no mother. David has no wife, Maureen has no daughter. The worst thing that could ever have happened has happened.
I have heard of doctors who quit medicine after a case like this. Grief brings the whole thing to a standstill. Seeing that little baby at night when you’re trying to sleep, a baby you’ve never even met. The terror of the moment. The decisions made in a split second, decisions you train for years to make, situations with infinite variables. Did I do the right thing? Tears ambushing you in stairwells. Replaying that moment in the room when you realize she’s dying, she’s really going to die today, and it’s my name on her hospital bracelet, and I don’t want my name on any more bracelets on any more dead wrists or my signature on one more death certificate beneath the name of one more person whose story is going to shatter what’s left of my heart.
None of that is present for me anymore. I’m breathing through it. I’m turning towards, not away. I did all the right things. I could not save her. I did not fail. This was never about me. Not in the way I thought it was.
Maureen says something to me at the door, something I don’t really absorb until later that night, lying in bed, seeing her face, not the baby’s.
As soon as I met you that day on the ward, I knew everything would be fine.
The paradox of those words. How did I make it fine? Nothing is fine. Nothing will ever be fine. She’s gone, and there is that gaping hole blown in your life, and it will never be any other way.
But we’re in a place where there is still bread, and coffee, and light coming in through a kitchen window—and a baby.
And there is still that other truth, the one Maureen has articulated. Stars in more than one dimension. Patterns we make in the darkness, things we do so we can find our way.
Author’s Note
Confidentiality is a sacred tenet of medicine and also fundamental to the experience at Chapin Mill. Many colleagues and patient families generously consented to the sharing of their identities and stories without altering any details; their real names are used with permission (see acknowledgements).
Clinical cases where families are not named in the acknowledgements section are not based on specific patients, but they are representative of the many types of patients I have cared for in my twenty-year career.
Jodie Katz, Greg Collins, Mick Krasner and Ron Epstein all appear as themselves. Roy is a composite. Two individuals granted permission for their stories to be told so long as their identities were concealed; for this reason, Joss and Ikiru are composites, and the clinical cases they share are not based on specific patients.
Jonathan Starke allowed me to borrow his concept of a shared, real-time poem.
Aside from Nikki, who appears with her permission, any students or student interactions described in the sections about my academic work are necessarily composites drawn from my experience with the many and widely varied students I have taught and supported over the years.
Certain other names and details have been changed. Conversations and dialogue have been created in service to the story, but remain true to the spirit, individuals and moments of profound insight achieved at Chapin Mill.
I made more than one trip to Chapin Mill, and some events that occurred during subsequent trips are depicted as part of this first pilgrimage. The timing of my resignation as associate dean has been afforded some plasticity in relation to my Chapin Mill visits, as has the encounter with students discussing “Midlife with Dr. Horton,” a scene that was inspired by two separate lectures. These minor adjustments allowed me to tell the story in a way that revealed the arc of insights and change, and enabled me to bring you, my reader, on this journey with me.
Acknowledgements
The list of people who made it possible for me to bring this book to fruition is almost as long as the book itself, but at the very top is my brilliant teacher, mentor, friend and coach, Stan Dragland. It is impossible to accurately depict the depth of his kindness, love and unshakable faith in me. He never stopped seeing me as a serious writer, and because of that, I could never find an excuse to stop writing. For the last twenty-five years he has offered me wisdom, insight, time, energy and six words that became a mantra: Get it right, whatever it takes. If I got it right, it’s because of him, and I am indebted to him forever.
I am grateful to my cherished friend and teacher Mick Krasner, for being a co-conspirator and kindred spirit, and for changing my life with the first invitation to Chapin Mill.
My friend and mentor Ron Epstein was an enthusiastic and wise reader of a first draft of this book, and his belief in me as a writer gave me the resolve—and the courage—to get the job done. He is the one who helped me see that the story I needed to tell was right in front of me.
I owe a debt of gratitude to two brilliant writer friends, Leah Eichler and Nathinee Chen. In the years before I went to Chapin Mill, when I was fumbling with other stories of my life and dressing them up as fiction, they both took turns reading draft after draft of my work, critiquing from the head and the heart. Both are writers with tremendous talent of their own, and yet they devoted huge amounts of time to helping me get my own work off the ground. It is a favour I hope to repay one day.
I am so grateful for my literary angel, Jackie Kaiser. She conjured me up one morning on her way to the subway. That same day, this book showed up in her inbox, and then there was no turning back. She is brilliant, calm, laughs at my jokes and understood me from the moment she read the first few pages. There are few things more powerful than feeling we are truly known by someone else. Thank you, Jackie, from the bottom of my heart, for making all of this happen. Kismet.
Iris Tupholme, senior VP and executive publisher, gave me the best imaginable home, at HarperCollins Canada. She is the brilliant coach and book therapist every memoir deserves, and through her thoughtful questions and incisive comments, I came to understand even more about what happened at Chapin Mill. I am so grateful to have had the privilege of working with her and the benefit of her phenomenal talents and skill, not to mention her incredible kindness and warmth.
Julia McDowell gave meticulous, inspired notes that kept me chiselling away even on the days when I felt more like using a jackhammer. Allyson Latta and Noelle Zitzer guided me deftly through final edits and finishing touches. Everyone else at HarperCollins Canada supported this book and its message from day one. I will always be grateful for everything they have done to bring it into the world.
My dear friend, the writer and poet Molly Peacoc
k, has been a lifelong inspiration. Her husband, Michael Groden, was one of my most important professors and cheerleaders, and he made me unafraid to take risks as a writer from early on. My other teachers at Western University helped me form the core belief that I was capable of being a writer, including Don Hair, Stephen Adams, John Lingard, Mary Neil and the late, great, infinitely compassionate Tom Tausky. My time at Western was also heavily influenced by the mentorship and support of two amazing trailblazers, the late Beryl and Richard M. Ivey, philanthropists who “levelled the playing field” between Oxford and McMaster, fundamentally altering the course of my life.
Many mentors in medicine have shaped my career in innumerable ways. It is important to emphasize that I benefitted from compassionate teachers, mentors, role models and program administrators at almost every turn in my medical education, at both McMaster University and the University of Toronto. The culture of medicine is universal, and the problems I have described with medical training almost certainly occur at every teaching hospital in North America. It is important to me to make the distinction between the people, who were often wonderful, and the system, which needs an overhaul.
Dr. Brian Goldman has given me friendship and encouragement at times when I needed it most and helped me figure out how to write in my own voice instead of someone else’s. Dr. Sharon Straus is one of the wisest and most compassionate people I have ever known, and is still a friend, a guiding light and an inspiration to me after all these years. Dr. Howie Abrams was another larger-than-life influence on my approach to medicine, a kind of Hawkeye Pierce on a bicycle, who helped me find the conviction to stick it out when I was tempted to walk away. Dr. Brandon Meaney was my first great mentor, and I will always be grateful to him for showing me a way to be that was an extension of who I really am. Drs. Mike Froeschl, Heather Reich and Lynfa Stroud are just three of the many people who made residency bearable, with jokes that are still funny all these years later. I couldn’t have survived it without you. I’m glad I didn’t have to.
We Are All Perfectly Fine Page 21