This is the third of a four part series Lives Restored – Managing Severe Mental Illness, by Benedict Carey.
Part One – Rescuing Others – Expert on Mental Illness Reveals Her Own Fight, New York Times, June 23, 2011
Part Two- Living with Voices – Learning to Cope With a Mind’s Taunting Voices, New York Times, August 7, 2011
The feeling of danger was so close and overwhelming that there was no time to find its source, no choice but to get out of the apartment, fast.
Keris Myrick headed for her car, checked the time — just past midnight, last March — and texted her therapist.
“You’re going to the Langham? The hotel?” the doctor responded. “No — you need to be in the hospital. I need you consulting with a doctor.”
“What do you think I’m doing right now?”
“Oh. Right,” he said. “Well, O.K., then we need to check in regularly.”
“And that’s what we did,” said Ms. Myrick, 50, the chief executive of a nonprofit organization, who has a diagnosis of schizoaffective disorder, a close cousin of schizophrenia, and obsessive-compulsive disorder. “I needed to hide out, to be away for a while. I wanted to pamper myself — room service, great food, fluffy pillows, all that — and I was lucky to have a therapist who understood what was going on and went with it.”
Researchers have conducted more than 100,000 studies on schizophrenia since its symptoms were first characterized. They have tested patients’ blood. They have analyzed their genes. They have measured perceptual skills, I.Q. and memory, and have tried perhaps thousands of drug treatments.
Now, a group of people with the diagnosis is showing researchers a previously hidden dimension of the story: how the disorder can be managed while people build full, successful lives. The continuing study — a joint project of the University of California, Los Angeles; the University of Southern California; and the Department of Veterans Affairs — follows a group of 20 people with the diagnosis, including two doctors, a lawyer and a chief executive, Ms. Myrick.
The study has already forced its authors to discard some of their assumptions about living with schizophrenia. “It’s just embarrassing,” said Dr. Stephen R. Marder, director of the psychosis section at U.C.L.A.’s Semel Institute for Neuroscience and Human Behavior, a psychiatrist with the V.A. Greater Los Angeles Healthcare System and one of the authors of the study. “For years, we as psychiatrists have been telling people with a diagnosis what to expect; we’ve been telling them who they are, how to change their lives — and it was bad information” for many people.
No more so, perhaps, than for Ms. Myrick, who after years of devastating mental trials learned that she needed a high-profile position, not a low-key one, to face down her spells of paranoia and despair. Her treatment regimen, like most others’ in the study, is a combination of medication as needed and personal supports, including an intuitive pet dog, the occasional weekend stay at a luxury hotel — and, not least, a strong alliance with a local psychiatrist.
“I feel my brain is damaged; I don’t know any other way to say it,” Ms. Myrick said. “I don’t know if it’s from the illness, the medications, all those side effects or what. I only know that I do need certain things in my life, and for a long time — well, I had to get to know myself first.”
‘The Jagged Piece’
Keris Jän Myrick was an Army brat. She grew up around the world and nowhere in particular, moving from Bremerhaven, West Germany, to Los Angeles to Fort Leavenworth, Kan., to Englewood, N.J., to Seoul, South Korea, and back stateside again, as her father advanced in the ranks. The changing locations and temporary friends made the family close, and Col. Howard A. Myrick and his wife, Roberta, were strong advocates for their daughter and her older brother, Kyl, wherever they landed.
“Let’s just say that their mother and I had to continually go to school and deal with teachers who had presumptions about their ability based on cultural factors,” said Howard Myrick, now a Temple University professor of communications who lives in Philadelphia. Roberta Myrick died in 2009.
Brother and sister thrived, in academics, in music, he in sports, but she was the more sensitive soul and felt increasingly isolated socially, and self-critical. The only black girl among her playmates in West Germany and South Korea, she also became conscious of race early on. “It’s important to know that everyone around me was white; I was the epitome of a minority,” she wrote about one period living overseas.
Yet if she looked different from her classmates abroad, she spoke and acted very differently from the African-Americans in Englewood. She was taunted, ostracized; the black world seemed no more ready to offer her a place than the white one. When she was 8, her father left to serve a tour in Vietnam, and suddenly her one constant, the family, felt vulnerable, transient.
Soon she gave herself a private name and made it the title of a journal: “The Jagged Piece.” “Of course as opportunities permitted I could transform myself to appear round and smooth, but out of my element,” reads a later entry, when she was back in the United States. “My whole life, try as I might, I never fit.”
Not in college, where in her freshman year at Wellesley she became increasingly isolated and erratic, wearing roller skates everywhere, even in class, and spending odd hours on the roofs of buildings, and sometimes in a bell tower. Nor back at her parents’ home in Virginia, where, after being asked by the college to take time away, she began to hear a voice, for a time telling her that most foods were poisonous. She all but stopped eating; doctors told her she had an eating disorder.
Ms. Myrick somehow pushed herself to finish an undergraduate degree at Temple and later completed a business management program at Case Western Reserve University in Cleveland, while stalked by severe anxieties and that voice, ringing at the edge of her thoughts, now strict and critical. She was engaged, for a time, to a man she met at Temple; but that did not fit, either.Something was wrong, she knew that, and even as she landed her first job — in the admissions office at Case Western — she was on the phone with her mother almost every day, trying to work it out. A doctor in Cleveland diagnosed generalized anxiety disorder and depression in the late 1990s. But for a young, ambitious woman who had yet to find her purpose, those labels seemed no more than that — labels, one person’s opinion.
“I had this belief that if I found the right place, the right work situation, I would be O.K.,” she said.
Epiphany After a Setback
She made a crucial first step toward that goal one summer night when she was too wired to sleep.
It was 2006, and she was not at all O.K.: she had just lost a good position in the admissions office at the California Institute of Technology, in Pasadena. She had been working frantically, putting in long hours, paranoid that her co-workers were out to undermine her — and she finally blew up at someone in the personnel office. The voice in her head was not letting her forget it, telling her that she was a failure, finished. You’re 45; good luck starting over.
She could barely sleep and was often unsure whether she was awake or dreaming.
“But one night about 2 a.m., I had this epiphany, that’s how I think about it,” she said. “I called my mom and said: ‘I see it now. I wasn’t meant to be in admissions, or higher education — it’s suffocating me, my creativity. I need to be in charge of my own life.’ ”
She was crying, and her mother asked why. “I told her it was because I had figured it out, and that’s exactly the way it felt at the time. I finally figured it out.”
It was a start, but only a step on a long road. From 2000 to 2006 the police had taken Ms. Myrick to the hospital at least six times after she called one of her therapists with thoughts of suicide and hallucinations and the therapist made an emergency call.
The diagnosis changed, to schizoaffective disorder with obsessive-compulsive disorder. She was never violent, she said, but she was stubborn enough in demanding to know what was happening to her that security officers held her down more than once — memories that make her shake with fury.
“I was thrown into a holding room once, right next to a young man who’d just stolen a gun from his father, and I could see the gun in the gun box through the thick glass,” she said. “And I’m thinking, ‘What, now I’m a criminal?’ ”
On another occasion she crawled into the closet of her hospital room and curled into a fetal position. She was “catatonic and completely mute,” according to a discharge summary dated Jan. 2, 2005.
Her therapist, Dr. Timothy Pylko, a psychiatrist in San Marino, visited her in the hospital.
“I just sat down on the floor with her, to get to the same level, and eventually we started having a conversation,” said Dr. Pylko, who became her regular therapist and later texted with her on her way to the hotel. “That may be when she first started to trust me.”
It wasn’t always that way, when she first began seeing him in regular sessions. Ms. Myrick insisted that there were large holes in her brain, probably from the side effects of drugs she took to control her symptoms. Dr. Pylko ordered a brain scan, handed her the images and said, “O.K., show me where.” She couldn’t; there were none.
He wanted her to try certain antipsychosis medications, and she was skeptical. “He basically fired me, at one point,” she said. “He was telling me that if I didn’t accept his help, there was nothing he could do.” She went along only after he presented her with the evidence of the drugs’ benefits and risks.
Dr. Pylko also thought she should feel her way back into the work force slowly, starting with less demanding work. She had other ideas; she would not answer phones or bag groceries, not with an advanced degree in management.
She began attending mental health conferences that were open to the public and saw that some of her skills — in administration, in computer technology — were crucial in mental health care, where people with psychiatric diagnoses often struggle to make sense of the patchwork of services and clinics. At one conference she met Paul Cumming, a well-connected advocate who works for a mental health care Web site.
The two became friends, and soon Mr. Cumming enlisted her as a speaker at one of his mental health technology conferences. “She was very nervous, and it was last-minute,” he said, “but she was a big hit, very smart and funny.”
In the audience was David Pilon, an executive at Mental Health America of Los Angeles, a nonprofit organization, who was looking for someone to run a unit of the organization in Commerce, Ca. “I was very impressed with her, and I just kind of filed it away,” Dr. Pilon recalled. “Then, later, we both served on a panel, and I said, ‘Listen, if you’re ever looking for a job. … ’ ”
She was. In February 2008, Ms. Myrick took over Project Return Peer Support Network, overseeing 94 trained advisers who provide symptom-management advice and other services to people struggling with mental illness.
As chief executives go, she is not from Central Casting: an intense, soft-spoken woman with nine earrings and an eyebrow post, she has decorated her office with action figures, including one she calls “Advocacy Barbie,” and a Rock ’Em Sock ’Em Robots toy (“That’s how we settle serious disputes,” she said). Steinbeck, her terrier, occasionally comes in for the day.
Yet for the staff of three dozen people, most of whom have had a diagnosis themselves, it has been a good match.
So it has, too, for their boss. Her search for belonging was stalled for so long in part because she was facing the wrong direction. She was looking outward for someplace to fit in, without turning to ask herself what it was that she needed — who fit with her.
“When I’m well,” she said, “I have to continually ask, ‘What does it take to be well?’ I need some very specific things around me. And if get spinny — that’s what I call it when my brain moves too fast — well, I need to have a plan.”
Her overall strategy combines a heavy work schedule, regular reality checks with colleagues, sympathy from her dog and the option to bail out for a few days if needed — in luxury.
Broadly speaking, her approach has a lot in common with the strategies that other people in the study use. The principal investigators — Elyn R. Saks of U.S.C., Alison B. Hamilton of U.C.L.A. and Amy N. Cohen of Veterans Affairs, along with Dr. Marder and others — have found that the participants typically adhere to a medication regimen, often check their thoughts and perceptions with those around them, and actively control their environment, sometimes with the help of a therapist. Some avoid travel, or crowded, noisy places; others prefer not to be alone. Most stay away from illicit drugs and alcohol.
At home, Ms. Myrick relies partly on Steinbeck to manage her moods. The dog is trained to jump in her lap when it senses distress or to rub against her leg if the lap is not available. She takes Steinbeck to work if she’s feeling fragile, and it will occasionally jump in the lap of someone else who is feeling down.
In the office, she can ask for a reality check anytime, given that most of the staff members have had their own struggles. “I’ll just say, ‘Excuse me, but is anyone hearing what I’m hearing?’ ” she said. “And if the answer is no — O.K., it’s no. Here it’s possible to do that and not worry about it.”
She travels a lot to conferences, and when she is back in California she keeps her schedule as full as possible. Her mind runs on high, and without fuel — without work — it seems to want to feed on itself. Her elbows usually tingle when that is about to happen, she said, and she will often play number games in her head. If she needs to, she will make a quick phone call.
Dr. Pylko said: “We might just talk for a few minutes. Maybe once is enough, maybe several times during the day. It’s an ongoing conversation at this point. It’s more like a friendship than anything else.”
Or she will call her father, who is always on her side and will make the trip west if needed.
She can no longer call her mother. When Roberta Myrick died, her daughter expected to land in the hospital yet again. She thought about surrendering to the grief. But she had a plan. She focused on controlling her symptoms and on the life she has now, what it means and how much of a difference she has made — in her life and in others’ lives. One of her earrings marks the anniversary of her hiring and more than a year without being hospitalized; it has now been five years.
“And then I just treated the funeral as what it was, a celebration of my mom,” Ms. Myrick said. “It wasn’t about me this time.”
She was back at work within days.