We Are All Perfectly Fine

by Dr. Jillian Horton

  “I’m an asshole in my head too.”

  “Seriously, Jill, what let you do that for him? To me it’s about meeting a universal human need.”

  “For track pants?”

  He waves his pen at me. “The track pants are a signifier.”

  “Of what?”

  Greg is getting exasperated. “This is your story. What do you think the track pants signified?”

  “I think they signified that I chose a story that made me look like a hero, when actually I deserved a zero.” I draw a big 0 over everything I’ve written.

  Greg looks over at the instructions again. “I’m . . . curious as to why you think you deserve a zero.”

  “Because I should have seen his humanity at the start. That’s what I’m always beating up other people for.”

  “Didn’t you say this happened years ago? Aren’t you allowed to grow?”

  “Yes, I’m allowed to grow.” I doodle more 0s around the margins of my story.

  Greg points his pen at me in an Uncle-Sam-wants-you gesture. “Then let’s try to get real.”

  “I am real.”

  “I’m saying it as much for myself as I am for you.”

  “Okay.” I tear the page out of my notebook and crumple up what I’ve written.

  “Why’d you do that?”

  “It was lame. I need to get real.”

  “Okay, well, what would ‘getting real’ look like to you?”

  “No more blue hair.”

  “Hey, enough.” Greg’s eyes are stern behind his wire glasses. “What would that look like, Jillian?”

  “Well, Gregory,” I say, and my words hang in the space between us. There’s something so endearing about him. He’s taking this all so seriously. “For starters, I would not be funny.”

  “Do you feel like you have to be funny?”

  “Sure I do.”

  “Can you say more about why that is?”

  This suddenly feels exhausting, like being in a bad psychiatrist’s office.

  “I have to make people laugh.”

  “Why?”

  “So they can bear it.”

  “Bear what?”

  “What’s coming next.”

  “And what’s coming next?”

  “What do you think is coming next, Greg?”

  His North Face shirt is red. He has a little spider angioma on his neck, red. He makes a slicing motion with his hand across his neck.

  “Maybe the guillotine?”

  “Bingo!”

  Greg pauses. He touches his mouth with the back of his sleeve, as if he has just discovered his lip is bleeding. “I was really young when I started out. I thought anyone could find happiness if they looked hard enough. I had all this idealism, liked my record collection. I thought I was above racism, and bias. I loved John Lennon. He made it seem simple.”

  “Jai guru deva. I totally get that.”

  “Om. Don’t you wish something could change our world?”

  “Have you ever gone to an AA meeting?”

  Greg looks surprised. He hesitates, then tries to sound casual. “No. Have . . . you?”

  “No, but a lot of my patients go. You know the first step, right?”

  “I don’t, actually.”

  “They start with accepting that life has become unmanageable.”

  “Well, that’s relatable.”

  “And you have to accept that you’re powerless over the thing that’s wrecking you.”

  “I have more trouble with that.”

  “I don’t totally agree with it either, from the perspective of agency. But what if there’s something fundamental about how medicine is affecting us that we could fix with a twelve-step program?”

  “You mean medicine is an addiction?”

  “No, I’m not explaining it right. More like the things that help people recover from addiction are the same ones that can help us feel like normal people again.”

  “Like which things?”

  “Well . . . hope. Courage, humility. Love.”

  Greg is thinking. He milks his little goatee, runs his index finger along his top lip. “But there’s this whole separate problem that has nothing to do with us. Medicine is a business now. That’s the American model, right?”

  “It isn’t quite so bad in Canada.”

  “Well, you’re lucky. I work for an HMO because they look after all that stuff for me. It isn’t necessarily my first choice, but I couldn’t deal with insurers on my own. I couldn’t run a convenience store. Like, I just want to look after people. Is that so much to ask? Not to disrespect the idea of getting more into courage, love, humility . . . whatever you said back there.”

  “Greg, sometimes this gets so fucking hard, it feels like I’m really looking for a way out of medicine.”

  He nods. “Me too. I feel like Ron and Mick are better people than me.”

  “Or maybe they’re just on better meds.”

  Greg starts laughing his head off. I get the giggles. Jodie looks over at us from the corner, shakes her head as if we’re both lost causes.

  “She’s jealous!”

  We stick our tongues out at her.

  “What the hell were we just talking about?”

  He shakes his head. “Can’t remember. It’s too much to keep track of.”

  “See? Our lives are unmanageable.”

  “Maybe this is a twelve-step program.”

  “Mick said as much in the Zendo. Remember the first step?”

  We share a knowing look. We say it in unison, just as Ron rings that damn bell.

  “The step you don’t want to take.”

  13

  The Courtesy Not to Ask

  Medicine as a business. Let me share some thoughts on that.

  In our small prairie town, growing up, we had a family doctor. He’s retired now, long since moved. He was a man with admirable qualities, clearly intelligent. He’d gone to school in another country, might have had sherry with tutors. My parents thought he knew a lot, and it was also true that when it came to doctors, they’d seen it all.

  He had a busy practice. The clinic in our town served a huge catchment area. As a result, it ran on a care model that would have flummoxed the great medical educator Francis Peabody, who said the secret of caring for the patient is caring for the patient. The clinic flummoxed me too, long before I knew anything about Peabody. Ten minutes per visit, maybe five. And a sign, prominent: Dr. X is not taking new patients. Please have the courtesy not to ask.

  The courtesy not to ask.

  The courtesy not to ask.

  So you start your visit to Dr. X feeling like the clinic has made it abundantly clear to you, in writing, that you’re already lucky to be there and they’re not interested in people like you taking advantage of their doctor’s angelic nature in order to help your family or circle of friends. Then, at least thirty minutes behind schedule, Dr. X. charges into the room as if it’s a drug bust and the gig is up. He says something to you, but you have to ask him to repeat it, since you’re already nervous, because there seems to have been a mix-up, and this guy might think you are an asshole who lacks courtesy when actually you have a ton of courtesy and are the kind of patient who likes to bake cookies for your doctor and hear about their kids.

  So Dr. X. sits in his chair, pulls up to his state-of-the-art computer, the new tool he was assured would simplify his life, and squints at the screen while he types and fires off questions.

  Any burning while you pee?

  Are we up to date on our immunizations?

  Any pain in the abdomen?

  I didn’t like any of it. The sign, the speed, the computers that had begun inserting themselves squarely between patient and doctor. But let me tell you, when you love someone with a severe disability and complex medical problems, a person who falls through every crack in the sidewalk of society, a person not written in its margins but erased from the footnotes altogether, you know you can’t afford to lose this doctor.

  Not
only that, but getting Wendy there to see him was like taking your piano in for a tuning. She weighed a mere hundred pounds, but somehow she had the strength of a high school wrestling team. And sometimes, in the midst of the production of getting her and her hundred-pound wheelchair into our own non-wheelchair-friendly van, she got mad. Her shows were on, damnit! Winter was bloody cold. And asking a person with no short-term memory and no impulse control to sit and wait nicely for the doctor is a great way to unleash the hounds.

  She had a right to get mad. Life handed her good cards, then took them away. It was a raw deal. Sometimes people would spout garbage to us, like, her disability was “a blessing in disguise,” or “God’s plan.” Please. Please. Her life was hard. It was relentlessly hard. And the person who had to shoulder the hardest part of it was her. In fact, what I would have labelled the bad times actually turned out to be good times in the narrative arc of her life, because, really, after the age of twenty-one, it kept getting worse.

  Two really horrible things had happened as a result of her childhood brain surgery. The first was the post-operative meningitis that took everything away from her. Sight. Normal speech. Bladder control. Also proprioception—the ability to know where the body is in space and time. Short-term memory. Balance. Fine motor skills. Gross motor skills. The ability to reason. The chance to have children, something she dreamed and spoke of until very late in her life. All of it gone, gone, gone.

  The second horrible thing was due to an inexplicable rewiring of the taste centres in her brain, and it was totally unexpected: she fell in love with country music.

  This was really horrible for the rest of us because in addition to being partly blind, Wendy was also partly deaf. The radio in our house was cranked up as loud as it would go and tuned to CKLQ, the local country music channel, for up to eighteen hours a day. And while CKLQ was blaring, the television would be on PBS, set to Grand Ole Opry or Austin City Limits. All at the same time. And Wendy would be sitting in her pink bedroom—Wendy loved pink bedspreads and pink clothes and pink-clad china dolls and pink cakes and pink birthday candles—listening to this assault on the senses and bouncing away in a dance that mostly involved bending her knees over and over while she tried to avoid falling on her head. She would lean against her hospital TV table on wheels, the one where she sometimes insisted on eating all her meals, her face in Opry and an ear angled towards CKLQ, singing along to such classics as “There’s a Tear in My Beer” in a voice that wavered like the pulsing of a washing machine. She had scanning speech, with a lilting rhythmic disturbance to it, because one of the parts of her brain that was damaged by surgery and meningitis was the cerebellum, the so-called “little brain.” Sounds cute, adorable. But the cerebellum is really a sophisticated integration centre. All sensory info from the brain and spinal cord goes to the cerebellum, and it’s in charge of figuring out where to move you in space—specifically, voluntary movements. The cerebellum is the Martha Graham of the central nervous system. It choreographs movements, normally making them elegant, seamless. Posture. Balance. Coordination. Intelligible speech. Sorry, Wendy, can’t have those anymore! Can’t get toothpaste onto a brush! Can’t get that toothbrush into your mouth! Might be able to poke your eye out with it, though, or slather toothpaste on your cornea. And that speech, that scanning, tremulous, slow-pitch voice: you’re stuck with it for the rest of your life. The content will be normal. It will be perfect, actually—pristine, grammatically flawless, and your observations will be fascinating and idiosyncratic. But nobody will know that about you, because the minute you open your mouth, quaking in that wheelchair because the cerebellum also supervises the torso, your trunk and hands flying, liquid spilling everywhere if you even try to manage so much as a glass of water—people will look at you and think . . . well, you know what they’ll think. I know what they thought, because of the damaging things people were willing to say outright. Please have the courtesy not to bring your retarded child to our school for regular people. Please have the courtesy not to use this rehabilitation swimming pool, because it’s only for people who can be rehabilitated. Please have the courtesy to teach your handicapped daughter some manners. She’s rude. She swears. She learned a few choice words post-tumour, let me tell you, but she had every right to those. I have a difficult time getting through a day in the hospital without a supply of assorted cusswords (please have the courtesy not to swear when you learn there is not one empty bed anywhere in the entire hospital and the emergency department is full).

  My sister suffered near total exclusion from society. I watched her face that exile.

  Country music. Kenny Rogers, for instance. Back then, whether he was the guest on Grand Ole Opry or just taking a turn torturing me via CKLQ, I never listened closely to the likes of him. So it was by fluke one day that I saw one of his albums, The Gambler, in the window of an old record store. This was right around the time my associate dean’s role had started to go sour. I didn’t know why I was doing it anymore. I was miserable and wallowing, already thinking about quitting. Seeing that record cover brought tears to my eyes. Suddenly, as if my brain were tuned in to the station, I could almost hear his gravelly voice: sometimes you just have to walk away.

  I stood on the sidewalk practically crying. It was silly to be choking up at the memory of a country song, but it felt like a sign I’d been looking for. Later that night, noodling around on my phone, I looked up the rest of the lyrics. I’d listened to it a thousand times in my childhood, belted out by my sister in a key discernable only to her, but somehow I’d never really heard the words. What I had to know. What I had to do. And even the best thing Wendy could hope for. There it was, laid out for me in the plainest terms. You just hope you die in your sleep.

  Was the Gambler a pessimist? Was he a prophet? Or was he just burnt out?

  * * *

  I KNOW NOW that the doctor with the “courtesy” notice in his office was probably suffering from burnout. Burnout in physicians is a public health crisis. The term was first defined by a man named Herbert Freudenberger, but the defining scholarly work on burnout is the legacy of another psychologist, Dr. Christina Maslach. Burnout is an ugly trifecta: depersonalization, the feeling that one’s work doesn’t matter, and a low sense of personal accomplishment. An “erosion of the soul.” Maslach gave us this language, and her scale—the Maslach Burnout Inventory—has been used in the biggest studies on burnout in health care.

  But Christina Maslach did something much more amazing than define a syndrome. In 1971, a psychologist named Philip Zimbardo decided to use volunteers to replicate the conditions of prison, hoping to illustrate the latent capacity of individuals to fall into stereotypical roles. In what later became known as the famous Stanford Prison Experiment, Zimbardo and his colleagues recruited young, healthy men to play the parts of both prisoners and guards. They created a simulated prison facility, incarcerating half the participants and putting the other half in charge of the prison. What followed over the next several days was mayhem. “Guards” became depersonalized and callous, especially once they were hidden behind opaque reflective sunglasses, the kind that made it impossible for anyone to see their eyes. The inmates, referred to only by their numbers, became both defiant and passive, seeming to detach from their personal identities. Everything escalated; soon no behaviour was deemed unacceptable and the whole thing descended into chaos. Insulated from the rest of the world within an extreme hierarchy, the volunteers created their own playbook.

  How does Christina Maslach fit into this? She went to the “prison” as a consultant on day five or six. She was the fiftieth person who attended the scene, and unlike the forty-nine before her, she was astounded. She reportedly shouted, “It’s terrible what you are doing to these boys!” She shamed her colleague, Zimbardo, into stopping the experiment; although—a footnote—she later married him. But the fact is, Zimbardo stopped the experiment because of her, because she sounded the alarm. She saw—and named—the gorilla in the room.*

  So what
does it mean that she also helped interpret the phenomenon of the doctor of my childhood, staring at his computer screen, sitting under a rude sign that stressed out patients like me? He had his quirks, but he was hardly a monster. Whenever Wendy fell and sliced something open, he’d always come and stitch her up himself, a job his colleagues in the ER were only too happy to relinquish, my parents glad for his familiar face and skilled hands. Sometimes, on days when he seemed less stressed, Wendy would call him an old goat or peer at him through her Coke-bottle glasses and mumble under her breath that he was gorgeous, and he’d share a chuckle with my parents, then deride the government for failing to provide her with services.

  That doctor had entered another experiment as a normal person with good intentions. The experiment was called medical school, and something had happened to him in the process. Sometimes, even if he behaved like a guard, I suspect he also felt like a prisoner.

  I have not forgiven the sign, but I understand that doctor better now. He was a casualty of the experiment. His distress was directed outward. Mine was directed inward. That is the biggest difference between us.

  14

  Who Will Go with Me?

  It’s the afternoon session now, in the great hall. We start by sitting for fifteen minutes, cushions spread out, chairs in a semicircle. This is very church group-y for my tastes. I find a cushion, assume the pretzel. I notice a shift in my mood, a black mist that seems to move in and out of me when I breathe. Noticing what arises. Impatience. How many more days of this? It’s a bit nice, but tiring, like spending way too long in a hot tub. Images of oatmeal and the egg pyramid and a cold room right out of the convent. I wonder if I can get an extra blanket without a ration stamp. I notice my mind is wandering. I don’t usually notice. Is this progress?

  Ron rings his stupid bell.

  He says he is checking in. How is everybody doing?

  Lots of people say they’re fabulous. The woman who talks way too much says Mick and Ron are hitting the nail on the head, meeting every one of her needs.