Dedication
For Wendy
Epigraph
My baby has not lived in vain. His life has been what it is to all of us, education and development.
—SAMUEL TAYLOR COLERIDGE, ON THE DEATH OF HIS SON BERKELEY, IN A LETTER TO THOMAS POOLE, APRIL 6, 1799
Contents
Cover
Title Page
Dedication
Epigraph
One
1. The Curse of Knowledge
2. The Glass Cliff
3. Everybody Here Looks Perfectly Normal
4. Committed
5. Attachment
6. Sherry with Tutors
Two
7. The Step You Don’t Want to Take
8. The Nausea
9. Answers Don’t Change
10. Little Green Shoot
11. Things in Boxes
12. Christmas Is Coming
13. The Courtesy Not to Ask
14. Who Will Go with Me?
15. A Life Sentence
16. The Perfect World of Jillian Horton
Three
17. Shattered But Still Whole
18. Failure to Cope
19. Washing the Bowl
20. Get Out of the House
21. Silence
22. When You Walk Away
23. Mirroring
Four
24. Enough
25. You Are Still Carrying Her
26. I Did Not Forget About You
Five
27. We Did Not Fail
28. Eighty-One
Epilogue: A Cure for Miracles
Author’s Note
Acknowledgements
About the Author
Praise
Copyright
About the Publisher
One
1
The Curse of Knowledge
I know how I’m going to die.
It’s in a tin can of a plane at an altitude so low that birds will see the whites of my eyes as I go down screaming. Whichever nondescript great lake abuts Toronto and Rochester—okay, Lake Ontario—that’s the lake I’m dying in, today, on this plane.
The whine of the motor is deafening. The low-pitch pulsing sounds like the apocalypse. Just after takeoff, I snapped a photo of an ominous dent on one of the wings, and I’m wondering whether it will upload to the Cloud if I’m in airplane mode when we crash. Then the Transportation Security Administration investigators will praise me: One passenger, in a final heroic act, had the presence of mind to leave behind the photographic evidence that unlocked this case for us.
But that was stupid. A better final act would have been to alert the pilot before takeoff, and then maybe it wouldn’t have been a final act. And my final final act should have been to text my husband to tell him and the kids how much I love them. Or at least go into efficient doctor mode to remind him the youngest is due for a dentist appointment, and please follow up with the roofing company to patch the outrageously massive hole a squirrel chewed in the side of our chimney. Lest we get more squirrels.
By the way, I love you.
I’m a general internist, the kind of doctor who looks after people with medical problems that sound made up. Typhlitis. Neurocysticercosis. Ankylosing spondylitis. I also treat people with less exotic problems but lots of them at once. Heart failure and liver disease and sick kidneys. Stroke and pneumonia and severe mental illness. I work in an inner-city hospital, a rambling facility in need of a paint job, built on unceded Treaty 1 land in a part of Canada that Truth and Reconciliation seems to have forgotten, a hundred miles from the town where I grew up. I look after people who are sick enough to be in the hospital. Some are dying. Many are homeless. Many are Indigenous and have been subjected to gross, almost unfathomable injustice, racial oppression and intergenerational trauma. They struggle to escape its legacy, which often comes in the form of drug and alcohol addiction.
I’m heading to a place in New York called Chapin Mill. Nobody’s sending me. I’m going of my own volition, unsure as to why, doubtful it will make any difference. In the only-in-my-mind major motion picture version of my life, either Hawkeye Pierce or the soulful doctor played by George Clooney on ER have staged an intervention, since it’s so painfully obvious to viewers that I’m floundering emotionally and need to go away somewhere for at least part of one season.
Interventions don’t happen in medicine, in my experience. When they do, they’re a late-stage measure, akin to chemotherapy for advanced-cancer patients who have no hope of cure. Most doctors look fine, perennially, until the day they don’t. That’s because doctors are excellent at compartmentalizing. We are also compliant and conscientious and rigidly perfectionistic, characteristics that put us at risk for choking to death on our own misery—or more specifically, overdosing on the perfect fatal combination of pills, throwing ourselves off just-tall-enough buildings, or slitting open the large arteries we studied so carefully when we were undergraduates, with the sleight of hand to bleed out quickly—if all goes well, in approximately five minutes.
I talk about death a lot; wouldn’t you? I’m surrounded by it. I’ve signed more death certificates than cheques, and I pay for everything by cheque. Doctors have a delusional relationship with death. We trick ourselves into the professional assumption that death is reasonable. Not benevolent, but not unpredictable—nothing psycho about it. Birth on a good day is a Hitchcock film; death is often quiet, understated, like dealing with your accountant. So when it shows up on our doorstep, whether for us or one of our family members, suddenly this “reasonable” death that seemed so calm and inevitable when it was happening to other people turns out to be a real handful, and we’re often woefully unprepared to deal with it.
But we also talk and think so much about death because medicine is so fucking hard.
I know many jobs are hard. Try being a soldier deployed in Afghanistan. Try being a police officer on the frontlines of the meth crisis. My friend Al is a pharmacist. Believe me, pharmacists have their problems too. All that working with doctors, some of them notorious jerks. All that worrying—are you missing interactions between the red pill and the yellow, or the blue and the white? All those drugs, spread out in front of you like Dylan’s Candy Bar minus the carbs. One pill might take the edge off. Just the edge. What if it found its way into your pocket? What if you slipped it under your tongue? Just one. What’s the harm? That’s why they call it the edge, of course. Nothing begins in medias res. Every addiction, every dysfunctional behaviour—all of it starts somewhere.
Al and his wife came with us to the beach this past summer. We watched the kids wade out a mile into the shallowest part of Lake Winnipeg, far enough that they were dots halfway to the horizon but the water was still only up to their knees. It was so hot that it made Al think of his first summer job. He worked at a grill, cooking meat. Behind the grill was hotter than any beach. Sometimes Al got assigned to onions. He would stand next to the sink, slicing them, working his way through an entire mesh bag. For the first ten minutes, tears would pour down his face, and his eyes would burn. Every minute was worse than the one before. Just when he thought he couldn’t stand it anymore, even though he hadn’t finished cutting, the burning stopped. His face was wet with tears, but he couldn’t feel anything. He didn’t even know he’d been crying.
Al cutting those onions is like me and medicine. In the first few years, everything burned. Then one day the pain just stopped. That was a warning sign, and I missed it. Pain serves a purpose in our lives, sending messages to keep us out of danger. When we ignore those messages, or when our nerves have been damaged by prolonged toxic exposure and we no longer feel any pain, we mistake our insensibility for infallibi
lity. And that’s when we can end up in serious trouble.
I didn’t know what I was in for when I decided to go to medical school. I knew there was risk; I didn’t know the degree. Nobody would climb Mount Everest if they knew unequivocally that once they were at the top, their skin would freeze, and they’d be left with a hideous chunk of black flesh where their face used to be.
And yet, I love being a doctor. There is something so intimate, so fateful between me and medicine. Itzhak Perelman picks up the violin and knows it belongs in his hand. When I sit down at a bedside with a person in pain, there’s a moment of deep resonance and grace: everything in my life has led me to that chair. But relationships have undertones, just like instruments. Perelman plays a concert, and it’s easy to forget he spent his life making what he does look effortless. And we have no idea what happened in rehearsals.
Why did I go to medical school? I went because of my sister, Wendy. She was the first of four siblings, twelve years older than the youngest (me), an age gap that would normally mean I might have been babysitting her kids before I was out of high school. But six years before I was born, Wendy was diagnosed with brain cancer. Surgeons cut her head open and took the tumour out. If it had been diagnosed earlier, or if that had been the end of it, she might have recovered and had a good life. Instead, just a few days after surgery, her skull still wrapped in Frankenstein bandages, she got post-operative meningitis, an infection of the thin, glistening tissues that encase the brain like a tough layer of Saran wrap. That infection caused swelling, and scarring, and left her with the most complex cluster of disabilities imaginable. It made her the world’s most cantankerous disabled person, but also one of its funniest. She was a martini of a human you could never mix again. But her disabilities were so profound that all the doctors advised my parents to stick her in an institution that by today’s standards wouldn’t even pass for an animal shelter. My mom remembers a doctor, famous in these parts when he was alive, drawing a pie graph on a chalkboard, with a single narrow line representing the one child out of a hundred who survived pediatric anaplastic astrocytoma, then thrusting Wendy’s scans up on a lightbox and screaming at my mom and dad, who had asked about her prognosis, “Can’t you people get it through your heads? The problem is there’s no brain left.”
But the problem had nothing to do with my parents, or their heads. Doctors were the ones who screwed up my sister’s case at the beginning, middle and end. First, there was an unfathomable two-year delay until her diagnosis. Trip after trip to the clinic, my mother’s panic rising, because she knew, as mothers often do, that something wasn’t right. Wendy’s head in those photos from before the surgery, big as a dandelion gone to seed. Vomiting in the morning, bile arcing across the room, bits of her breakfast stuck to the walls. We learn early in medical school that this is called projectile vomiting. It’s a classic sign of raised intracranial pressure, along with headaches, balance problems, and deep, intractable nausea, a syndrome you should be able to describe if not diagnose by the time you’re in your third year of medicine. Wendy had all these signs. Doctor after doctor missed them. Then, after the diagnosis and the surgery, other doctors had the audacity to yell at my parents that they were the ones with something wrong with their heads, despite the fact that my sister, who had gone into the OR looking like a dandelion but otherwise a perfectly regular six-year-old, came out of that operation with a head full of scrambled eggs. My mom always said she could have written a book—but who could bear to read it?
And yet, my parents came across some good people, a few doctors scattered among them. The kind pediatric neurologist in another city who made the correct diagnosis in a few minutes with a simple, thorough physical exam, hardly able to conceal his horror at what his colleagues had somehow missed. A surgeon at the children’s hospital, empathetic and skilled, who probably saved her life. And Wendy’s last family doctor, a woman who treated Wendy and my elderly parents with compassion and love, offering care in the tradition of the Greek God Asclepius, healing as art.
The narrow line on the pie graph that doctor had drawn for my parents—it wasn’t the average survival of one child out of a hundred. That line was a crack my mother and father found or made, then pried open, then somehow managed to just barely squeeze my sister through. My grandmother once said to me, in a voice that didn’t reveal whether she thought it was a good thing, “Wendy lived by your mother’s will alone.” Nobody thought she would live. And when she did live, nobody thought her life was worth anything, that it served any purpose; and it was as if the entire medical system was angry at my parents for exposing its shortcomings, angry at Wendy, first for evading diagnosis and then for having the nerve to live when they declared it impossible with, as that one doctor so eloquently put it, no brain left. Much of her was hidden from view, or clouded by fits of intense, uncontrollable rage. But then our Wendy would emerge, hilarious, original, mesmerizing, and you were reminded she had always been there, and you could forget she had been pulverizing you a few minutes earlier because she was pissed you put mayonnaise in her sandwich, because to her mayonnaise was the most disgusting substance on the planet—although I am pretty sure she never had bubble tea—and any anger you had felt would be replaced by love and forgiveness. And then by grief for everything she had lost through no fault of her own, and, maybe as an afterthought, for everything you had lost too.
Later on, once she was an adult, a lot of “experts” told my parents she should just be in a nursing home. They didn’t really consider that she had nothing in common with Second World War veterans, or grandmothers who like to knit afghans, or people with dementia who care for rubber dolls as if they’re real babies. And her brain injury, specifically the damage to her frontal lobe, the part of the brain that sanitizes thoughts before they come out of your mouth, meant Wendy was liable to say, in a slow but intelligible voice, “Why is that idiot [your sweet grandmother with dementia] carrying that stupid doll,” or, “Why is that moron [your adorable grandfather, the Second World War veteran] smoking that disgusting cigarette?”
Life with her was a trial, infinitely more difficult than medical school. It was difficult because it was uncertain, and because there was no end in sight. That tumour decimated many important parts of her and, worse still, left her with the memory of what it had been like to look and move and eat and talk like everybody else. Most people only saw what was gone. They didn’t understand anything about her, or about the reality of living with a person who was profoundly disabled in such unique ways.
I didn’t understand that reality either. When I was eight or nine, one day at recess, with the air of a child’s confession, I blurted out to a teacher, “My family isn’t normal.” The teacher paused, then looked up and blew her whistle at a pair of boys who were rolling on top of each other like kittens. Before she went to pull them apart, she looked back at me and sighed. She said: “Show me a normal family in this day and age!”
She probably thought she was helping, but that day I started thinking it must be normal to feel like a gaping hole had been blown in your heart. My sister’s propped-up shell in a wheelchair, her constant screaming at night, the blaring TV, the cranked-up radio, the complex toileting, the holes in the wall where Wendy’s head had gone through the plaster because she couldn’t remember that her balance was too poor to walk, the lack of respite, the lack of appropriate medical care, the lack of a single person of any stripe coming to let my parents lie down or to take me and my other sister and brother out to a movie or to the mall, the little extended family we did have too far away or too busy with their own lives to tend to the chronic emergency of ours.
I have a haunting memory, from when I was five, of my mom at the end of the hall, crying that she couldn’t take it anymore, my dad telling me in a firm voice to go away, that everything was fine.
So even when my brother developed a febrile illness and a sudden-onset psychosis at the age of fifteen and went permanently to the psychiatric hospital, even when my older sis
ter, Heather, listened to the same depressing record all night with her bedroom door locked, even if I felt like I lived in a Salvador Dali painting, there wasn’t cause for alarm. Show me a normal family in this day and age!
Years later I would spend an inordinate amount of time seeing a psychologist, and she would tell me exactly two useful things. She would say: “Your sister was your first patient.” And she would say that the worst part about what happened to my family is there was nobody to be angry at, because it was nobody’s fault.
But she was wrong. I found somebody to get angry at. I had enemies and decided to hold them close, closer than anyone, so close I became one of them, infiltrated their ranks in order to make them pay for what they had done to our family.
I became a doctor.
* * *
NOW, ALL THESE years later, I’m on a plane with a phone full of potential forensic evidence, bracing for the impact that has already happened in my mind. The last year has been hard and dark, thumbnails of the same day sketched over and over with a black crayon. Everything has been an effort. The bitter cold all winter. The interminable drive to the hospital and back. The long, windowless hallways. Colleagues I’ve worked with for ten years who don’t even say hello when we pass in the corridors. Going to the ward, finding the right charts, logging in to yet another new electronic health record platform, trying to remember which massive drop-down menu is hiding the discharge note I want to review. Choosing which patients to see from a list already too long to be safe. Finding forms to fill out, ordering tests, four calls coming in on my pager. Five nurses and two students asking me questions, giving me information I can’t process, because I’m still trying to find the drop-down menu that will yield the note summarizing the three-month community hospital admission of a woman with fifteen medical problems. Six emails when I dare to check my phone, three about improving the learning environment.
The learning environment! What about the teaching environment? There was a time when I loved teaching so much I couldn’t wait to get to work. A time when this line from the Hippocratic Oath was almost as precious to me as my marriage vows. I will gladly share such knowledge as is mine with those who are to follow. Now I am drowning in this water, and I don’t want anyone to follow me into it. Sometimes I just want the students and Hippocrates and everybody else to leave me the fuck alone.
We Are All Perfectly Fine Page 1