BOSTON — Even beforehand — before the compulsive writing and the bipolar diagnosis, before the niche medical practice and the best-selling book — Dr. Alice Flaherty stuck out. She had grown up beside a duckweed-filled pond in rural New Jersey, and by the time she was a young adult, she’d become a neuroscientist in a family of engineers, a theorist among doers.
When she came home during breaks at Harvard, her father would rib her. “He’d say, ‘Yo, you talk big about pure science now, but you’re going to end up an engineer just like the rest of us,’” she recalled. “And when I went to med school, he was like, ‘See? See?’ And it’s totally true. It’s like tinkering. You tinker with the patients. It’s so fun. I love fixing broken machines.”
Her neurology work at Massachusetts General Hospital involves plenty of gadgetry — she heads up the deep brain stimulation unit, and sometimes uses electroconvulsive therapy to help patients with depression or mania — but these days, that’s not the kind of tinkering that’s at the front of her mind.
Instead, she has been toying with the boundaries of the illness itself. She likes seeing patients other doctors have given up on. Many have faced questions about whether they’re really as sick as they say. For all of them, getting the proper treatment — pills or infusions or electrical currents — depends on a kind of collaboration with Flaherty, a workshop in which motivations are re-examined, stories reshaped, turns of phrase redefined.
“These poor patients are typically seen as just not wanting to get better, and I got interested in that whole thing, like if you want to get better then you’re sick, if you don’t want to get better, then it’s a vice,” she said. “What was it about us — the caregivers, family members, and doctors — what was it that made us attribute willfulness to people who were obviously miserable?”
There was the Parkinson’s patient who was able to move when playing with grandchildren but not when asked to take out the trash. “The spouse is like, ‘Bullshit, you’re just not trying,’ and that’s totally true. … They lack dopamine, which is very important for motivation,” Flaherty said.
There was the medical student who’d become catatonic when faced with an exam, and was accused of wanting, at some level, to jettison his career.
There was the woman who came in with an anxiety-related tremor but insisted that, no, these shakes weren’t psychological. “You have to convince them, yes, you really are sick, I understand that, or they’ll never trust you,” Flaherty said. “And they are really sick, they’re disabled, totally.” Then, with a careful tweaking of language, she was able to prescribe the Valium that the patient had been refusing from other doctors, and the tremor faded.
To some, she might sound like a shrink tucked away inside a movement disorder clinic, and that isn’t entirely wrong. Historically, psychiatrists and neurologists often kept to their own floors, as if the feeling-thinking brain and the physical brain were two different organs. Flaherty was merging both long before it became a trend, explained Dr. Jerrold Rosenbaum, Mass. General’s psychiatrist-in-chief.
“When we had a complicated patient and we needed a neurologist who understood how we think, Alice would be our go-to consultant. She’s a great bridge,” he said. “She’s more sophisticated with the use of our drugs than many of us are.”
But that doesn’t quite cover Flaherty’s unique role in the biome of Boston medicine. When the novelist William Styron was weighed down by depression, movement issues, and delusions — he thought that his writing hand had gone dead and his head was shrinking to the size of a pin — he sought out Flaherty.
She makes a habit of befriending her patients and counseling her friends. She sometimes worries her colleagues might see her as too empathetic, too credulous, too boundary-breaking. Then again, she knows from her own experience with mental illness that the opposite — an excess of formality, stiffness, distrust — can be worse.
Stephanie Zaia by the pool at her family home in Medfield, Mass. Zaia was a competitive swimmer before being diagnosed with dystonia.
Flaherty had heard about Stephanie Zaia before they’d ever met. Clinicians talk, and a case like Zaia’s made them talk more than usual. Her symptoms seemed so strange, and so complicated, that they were picked apart during grand rounds, at medical meetings, and in-hospital staff rooms. What struck Flaherty was that her colleagues seemed to suggest that Zaia had invented her own bodily inferno.
The trouble began when Zaia was a 14-year-old in Medfield, Mass. She was a competitive swimmer, obsessed enough to make her parents drive her to practices at 5:30 a.m. She swam every weekday, spent her weekends at meets, but all of a sudden, at the end of a race in May 2003, her body went limp and she couldn’t get out of the pool.
Then she began having trouble moving elsewhere, too. Walking became hard. Sometimes she struggled to breathe. She stopped being able to digest, vomiting up almost everything she ate. She began to shed weight that she couldn’t afford to lose.
Her parents brought her to neurologists and psychiatrists and specialists of the gut, bouncing from practice to practice, from Massachusetts all the way to Maryland. They kept telling Zaia the same thing again and again: “They’d say, ‘Oh, it’s all in your head,” she said.
At first, Zaia and her parents went along with the idea. They probed her past for possible instances of trauma, but could find nothing besides garden-variety middle-school meanness from other kids, which hadn’t gone on for very long anyway. And the suggestions of depression and anorexia didn’t seem to add up with her mounting difficulty to move. “‘You’re trying not to walk because you hate to swim.’ That’s what they said,” Zaia recalled. “They were just like, ‘It’s a conversion disorder: You’re converting your not wanting to do this into physical symptoms.”
Photos at her family home show Zaia before and after her dystonia symptoms began.
No matter what she said, she couldn’t convince them that she wanted nothing more than to be able to swim again. Nor could she convince them, when they claimed her muscle spasms were an embodiment of her jealousy toward her siblings, that she did not feel jealous.
Her medical file began to take on an authority of its own, as if the hypothesis that her illness was psychological had, through repetition, become a fact. Doctors couldn’t unearth some underlying cause for the muscle tightness, and could find no relation to the mutiny in her gut. But there, in the pages of her record, was an explanation capable of tying these disparate threads together. The symptoms didn’t make sense, they thought, because she was, in some subconscious stratum, making them up.
It was only after years, in 2006, that Zaia got a diagnosis of primary dystonia — a condition characterized by involuntary muscle contractions — and learned just how common this kind of accusation is. “I’ve met lots of patients who spend five years being misdiagnosed,” said Pamela Sloate, a patient activist and board member of the Dystonia Medical Research Foundation. “They don’t have the skills to diagnose dystonia, so they tell the patient it’s imagined, or that it’s caused by depression.”
That can have a profound effect. As Zaia put it, “When somebody tells you that enough times, you start to believe it.”
She bounced between mania and depression, becoming obsessed with the idea that she’d been a bad mother, that it was all her fault. She knew, on the one hand, that she was sick — she’d been newly diagnosed with bipolar disorder, and was taking a pharmacopeia of pills — but also felt that her illness wasn’t real, that she was just fishing for attention.
“The most painful part of it was I thought I was making it up,” she said. “I thought I was this total loser that was making up something that had me in the hospital for nine days.”
Sometimes, she couldn’t physically lift her hand to her mouth to take her meds. She’d rock her arm back and forth, coaxing herself, like a volleyball player preparing to make a serve.
She was consumed by the doublethink of depression. She knew her symptoms weren’t fictional, but what if they were all in her head? She knew her obstetrician didn’t hate her, but what if he did? She wanted him to say that something terrible had happened. She wanted him to echo her own distress. She wanted him to cry.
Flaherty suspected the episode would end her medical career. Her colleagues told her not to tell anyone, but she was manic, and told everyone. She wrote about her illness in her book “The Midnight Disease,” and her story wound up in the glossy pages of magazines. Patients could idly flip through her postpartum mania while waiting for their appointments.
“The people who are most afraid of mental illness are doctors,” Flaherty said. “It turned out my patients were fine with it. … One guy said, ‘Yeah, that manic-depressive thing you have, my internist has that. … Every six months or so, they have to lock him up, because he runs down the middle of the street naked. But I stay with him because he’s a really good doctor when he’s not crazy.’”
Even as her mood stabilizers did their job, the impressions she had during illness stayed vivid: her conviction that she’d created her own symptoms, her over-analysis of her obstetrician’s veneer.
“She knows from experience how imperious doctors can be. … When you’re really in a lot of pain, or not sleeping, or whatever, in an acute phase, you feel like a supplicant,” said journalist and author Pagan Kennedy. The two had met in a local writers’ group, and when Kennedy experienced a mysterious bout of insomnia and acute pain, Flaherty counseled her not to rush into surgery, and checked in with her every day, listening. Kennedy is now making a podcast about Flaherty’s treatment of Styron.
Leave a Reply