Authors: Leslie Jamison
I would tell myself: maybe your prior surgeries don’t matter here, but maybe they do. Your broken jaw and your broken nose don’t have anything to do with your pregnancy except they were both times you got broken into. Getting each one fixed meant getting broken into again. Getting your heart fixed will be another burglary, nothing taken except everything that gets burned away. Maybe every time you get into a paper gown you summon the ghosts of all the other times you got into a paper gown; maybe every time you slip down into that anesthetized dark it’s the same dark you slipped into before. Maybe it’s been waiting for you the whole time.
SP Training Materials (Cont.)
“I’m having these seizures and no one knows why.”
PHYSICAL PRESENTATION AND TONE:
You are wearing jeans and a sweatshirt, preferably stained or rumpled. You aren’t someone who puts much effort into your personal appearance. At some point during the encounter, you might mention that you don’t bother dressing nicely anymore because you rarely leave the house. It is essential that you avoid eye contact and keep your voice free of emotion during the encounter.
One of the hardest parts of playing Stephanie Phillips is nailing her affect—
la belle indifférence
, a manner defined as the “air of unconcern displayed by some patients toward their physical symptoms.” It is a common sign of conversion disorder, a front of indifference hiding “physical symptoms [that] may relieve anxiety and result in secondary gains in the form of sympathy and attention given by others.”
La belle indifférence
—outsourcing emotional content to physical expression—is a way of inviting empathy without asking for it. In this way, encounters with Stephanie present a sort of empathy limit case: the clinician must excavate a sadness the patient hasn’t identified, must imagine a pain Stephanie can’t fully experience herself.
For other cases, we are supposed to wear our anguish more openly—like a terrible, seething garment. My first time playing Appendicitis Angela, I’m told I manage “just the right amount of pain.” I’m moaning in a fetal position and apparently doing it right. The doctors know how to respond. “I am sorry to hear that you are experiencing an excruciating pain in your abdomen,” one says. “It must be uncomfortable.”
Part of me has always craved a pain so visible—so irrefutable and physically inescapable—that everyone would have to notice. But my sadness about the abortion was never a convulsion. There was never a scene. No frothing at the mouth. I was almost relieved, three days after the procedure, when I started to hurt. It was worst at night, the cramping. But at least I knew what I felt. I wouldn’t have to figure out how to explain. Like Stephanie, who didn’t talk about her grief because her seizures were already pronouncing it—slantwise, in a private language, but still—granting it substance and choreography.
SP Training Materials (Cont.)
You don’t reveal personal details until prompted. You wouldn’t call yourself happy. You wouldn’t call yourself unhappy. You get sad some nights about your brother. You don’t say so. You don’t say you have a turtle who might outlive you, and a pair of green sneakers from your gig at the minigolf course. You don’t say you have a lot of memories of stacking putters. You say you have another brother, if asked, but you don’t say he’s not Will, because that’s obvious—even if the truth of it still strikes you sometimes, hard. You’re not sure these things matter. They’re just facts. They’re facts like the fact of dried spittle on your cheeks when you wake up on the couch and can’t remember telling your mother to fuck herself.
is also what your arm says when it jerks so hard it might break into pieces.
Fuck you fuck you fuck you
until your jaw locks and nothing comes.
You live in a world underneath the words you are saying in this clean white room,
it’s okay I’m okay I feel sad I guess.
You are blind in this other world. It’s dark. Your seizures are how you move through it—thrashing and fumbling—feeling for what its walls are made of.
Your body wasn’t anything special until it rebelled. Maybe you thought your thighs were fat or else you didn’t, yet; maybe you had best friends who whispered secrets to you during sleepovers; maybe you had lots of boyfriends or else you were still waiting for the first one; maybe you liked unicorns when you were young or maybe you preferred regular horses. I imagine you in every possible direction, and then I cover my tracks and imagine you all over again. Sometimes I can’t stand how much of you I don’t know.
I hadn’t planned to get heart surgery right after my abortion. I hadn’t planned to get heart surgery at all. It came as a surprise that there was anything wrong. My pulse had been showing up high at the doctor’s office. I was given a Holter monitor—a small plastic box to wear around my neck for twenty-four hours, attached by sensors to my chest—that showed the doctors my heart wasn’t beating right. The doctors diagnosed me with SVT—supraventricular tachycardia—and said they thought there was an extra electrical node sending out extra signals—
beat, beat, beat
—when it wasn’t supposed to.
They explained how to fix it: they’d make two slits in my skin, above my hips, and thread catheter wires all the way up to my heart. They would ablate bits of tissue until they managed to get rid of my tiny rogue beat box.
My primary cardiologist was a small woman who moved quickly through the offices and hallways of her world. Let’s call her Dr. M. She spoke in a curt voice, always. The problem was never that her curtness meant anything—never that I took it personally—but rather that it meant nothing, that it wasn’t personal at all.
My mother insisted I call Dr. M. to tell her I was having an abortion. What if there was something I needed to tell the doctors before they performed it? That was the reasoning. I put off the call until I couldn’t put it off any longer. The thought of telling a near-stranger that I was having an abortion—over the phone, without being asked—seemed mortifying. It was like I’d be peeling off the bandage on a wound she hadn’t asked to see.
When I finally got her on the phone, she sounded harried and impatient. I told her quickly. Her voice was cold: “And what do you want to know from me?”
I went blank. I hadn’t known I’d wanted her to say
I’m sorry to hear that
until she didn’t say it. But I had. I’d wanted her to say something. I started crying. I felt like a child. I felt like an idiot. Why was I crying now, when I hadn’t cried before—not when I found out, not when I told Dave, not when I made the consultation appointment or went to it?
“Well?” she asked.
I finally remembered my question: did the abortion doctor need to know anything about my tachycardia?
“No,” she said. There was a pause, and then: “Is that it?” Her voice was so incredibly blunt. I could only hear one thing in it:
Why are you making a fuss?
That was it. I felt simultaneously like I didn’t feel enough and like I was making a big deal out of nothing—that maybe I was making a big deal out of nothing
I didn’t feel enough, that my tears with Dr. M. were runoff from the other parts of the abortion I wasn’t crying about. I had an insecurity that didn’t know how to express itself; that could attach itself to tears or to their absence.
Alexander was a pretty bad horse today.
When of course the horse wasn’t the problem. Dr. M. became a villain because my story didn’t have one. It was the kind of pain that comes without a perpetrator. Everything was happening because of my body or because of a choice I’d made. I needed something from the world I didn’t know how to ask for. I needed people—Dave, a doctor, anyone—to deliver my feelings back to me in a form that was legible. Which is a superlative kind of empathy to seek, or to supply: an empathy that rearticulates more clearly what it’s shown.
A month later, Dr. M. bent over the operating table and apologized. “I’m sorry for my tone on the phone,” she said. “When you called about your abortion. I didn’t understand what you were asking.” It was an apology whose logic I didn’t entirely follow.
(Didn’t understand what you were asking?)
It was an apology that had been prompted. At some point my mother had called Dr. M. to discuss my upcoming procedure—and had mentioned I’d been upset by our conversation.
Now I was lying on my back in a hospital gown. I was woozy from the early stages of my anesthesia. I felt like crying all over again, at the memory of how powerless I’d been on the phone—powerless because I needed so much from her, a stranger—and at a sense of how powerless I was now, lying flat on my back and waiting for a team of doctors to burn away the tissue of my heart. I wanted to tell her I didn’t accept her apology. I wanted to tell her she didn’t have the right to apologize—not here, not while I was lying naked under a paper gown, not when I was about to get cut open again. I wanted to deny her the right to feel better because she’d said she was sorry.
Mainly, I wanted the anesthesia to carry me away from everything I felt and everything my body was about to feel. In a moment, it did.
I always fight the impulse to ask the med students for pills during our encounters. It seems natural. Wouldn’t Baby Doug’s mom want an Ativan? Wouldn’t Appendicitis Angela want some Vicodin, or whatever they give you for a ten on the pain scale? Wouldn’t Stephanie Phillips be a little more excited about a new diet of Valium? I keep thinking I’ll communicate my pain most effectively by expressing my desire for the things that might dissolve it. If I were Stephanie Phillips, I’d be excited about my Ativan. But I’m not. And being an SP isn’t about projection; it’s about inhabitance. I can’t go off script. These encounters aren’t about dissolving pain. They’re about seeing it more clearly. The healing part is always a hypothetical horizon we never reach.
During my winter of ministrations, I found myself constantly in the hands of doctors. It began with that first nameless man who gave me an abortion the same morning he gave twenty other women their abortions.
It’s a funny word we use, as if it were a present. Once the procedure was done, I was wheeled into a dim room where a man with a long white beard gave me a cup of orange juice. He was like a kid’s drawing of God. I remember resenting how he wouldn’t give me any pain pills until I’d eaten a handful of crackers, but he was kind. His resistance was a kind of care. I felt that. He was looking out for me.
Dr. G. was the doctor who performed my heart operation. He controlled the catheters from a remote computer. It looked like a spaceship flight cabin. He had a nimble voice and lanky arms and bushy white hair. I liked him. He was a straight talker. He came into the hospital room the day after my operation and explained why the procedure hadn’t worked: they’d burned and burned, but they hadn’t burned the right patch. They’d even cut through my arterial wall to keep looking. But then they’d stopped. Ablating more tissue risked dismantling my circuitry entirely.
Dr. G. said I could get the procedure again. I could authorize them to ablate more aggressively. The risk was that I’d come out of surgery with a pacemaker. He was very calm when he said this. He pointed at my chest: “On someone thin,” he said, “you’d be able to see the outlines of the box quite clearly.”
I pictured waking up from general anesthesia to find a metal box above my ribs. I remember being struck by how the doctor had anticipated a question about the pacemaker I hadn’t yet discovered in myself: How easily would I be able to forget it was there? I remember feeling grateful for the calmness in his voice and not offended by it. It didn’t register as callousness. Why?
Maybe it was just because he was a man. I didn’t need him to be my mother—even for a day—I only needed him to know what he was doing. But I think it was something more. Instead of identifying with my panic—inhabiting my horror at the prospect of a pacemaker—he was helping me understand that even this, the barnacle of a false heart, would be okay. His calmness didn’t make me feel abandoned, it made me feel secure. It offered assurance rather than empathy, or maybe assurance was evidence of empathy, insofar as he understood that assurance, not identification, was what I needed most.
Empathy is a kind of care but it’s not the only kind of care, and it’s not always enough. I want to think that’s what Dr. G. was thinking. I needed to look at him and see the opposite of my fear, not its echo.
Every time I met with Dr. M., she began our encounters with a few perfunctory questions about my life—
What are you working on these days?
—and when she left the room to let me dress, I could hear her voice speaking into a tape recorder in the hallway:
Patient is a graduate student in English at Yale. Patient is writing a dissertation on addiction. Patient spent two years living in Iowa. Patient is working on a collection of essays.
And then, without fail, at the next appointment, fresh from listening to her old tape, she bullet-pointed a few questions:
How were those two years in Iowa? How’s that collection of essays?
It was a strange intimacy, almost embarrassing, to feel the mechanics of her method so palpable between us:
engage the patient, record the details, repeat.
I was sketched into CliffsNotes. I hated seeing the puppet strings; they felt unseemly—and without kindness in her voice, the mechanics meant nothing. They pretended we knew each other rather than acknowledging that we didn’t. It’s a tension intrinsic to the surgeon-patient relationship: it’s more invasive than anything but not intimate at all.
Now I can imagine another kind of tape—a more naked, stuttering tape; a tape that keeps correcting itself, that messes up its dance steps:
Patient is here
for an abortionfor a surgery to burn the bad parts of her heart fora medication to fix her heart because the surgery failed. Patient is staying in the hospital for one night three nightsfive nights until we get this medication right. Patient wonders if people can bring her booze in the hospitallikes to eat graham crackers from the nurses’ station. Patient cannot be released until she runs on a treadmill and her heart prints a clean rhythm. Patient recently got an abortion but we don’t understand why she wanted us to know that. Patient didn’t think shehurt at first but then she did. Patient failed to use protection andfailed to provide an adequate account of why she didn’t use protection. Patient had a lot of feelings. Partner of patient had the feeling she was making up a lot of feelings.Partner of patient is supportive. Partner of patient is spotted in patient’s hospital bed, repeatedly. Partner of patient is caught kissing patient. Partner of patient is charming.