To Hell and Back
Expert on Mental Illness Reveals Her Own Struggle - The New York Times, June 23, 2011
HARTFORD — Are you one of us?
The patient wanted to know, and her therapist — Marsha M. Linehan of the University of Washington, creator of a treatment used worldwide for severely suicidal people — had a ready answer. It was the one she always used to cut the question short, whether a patient asked it hopefully, accusingly or knowingly, having glimpsed the macramé of faded burns, cuts and welts on Dr. Linehan’s arms:
“You mean, have I suffered?”
“No, Marsha,” the patient replied, in an encounter last spring. “I mean one of us. Like us. Because if you were, it would give all of us so much hope.”
“That did it,” said Dr. Linehan, 68, who told her story in public for the first time last week before an audience of friends, family and doctors at the Institute of Living, the Hartford clinic where she was first treated for extreme social withdrawal at age 17. “So many people have begged me to come forward, and I just thought — well, I have to do this. I owe it to them. I cannot die a coward.”
No one knows how many people with severe mental illness live what appear to be normal, successful lives, because such people are not in the habit of announcing themselves. They are too busy juggling responsibilities, paying the bills, studying, raising families — all while weathering gusts of dark emotions or delusions that would quickly overwhelm almost anyone else.
Now, an increasing number of them are risking exposure of their secret, saying that the time is right. The nation’s mental health system is a shambles, they say, criminalizing many patients and warehousing some of the most severe in nursing and group homes where they receive care from workers with minimal qualifications.
Moreover, the enduring stigma of mental illness teaches people with such a diagnosis to think of themselves as victims, snuffing out the one thing that can motivate them to find treatment: hope.
“There’s a tremendous need to implode the myths of mental illness, to put a face on it, to show people that a diagnosis does not have to lead to a painful and oblique life,” said Elyn R. Saks, a professor at the University of Southern California School of Law who chronicles her own struggles with schizophrenia in “The Center Cannot Hold: My Journey Through Madness.” “We who struggle with these disorders can lead full, happy, productive lives, if we have the right resources.”
These include medication (usually), therapy (often), a measure of good luck (always) — and, most of all, the inner strength to manage one’s demons, if not banish them. That strength can come from any number of places, these former patients say: love, forgiveness, faith in God, a lifelong friendship.
But Dr. Linehan’s case shows there is no recipe. She was driven by a mission to rescue people who are chronically suicidal, often as a result of borderline personality disorder, an enigmatic condition characterized in part by self-destructive urges.
“I honestly didn’t realize at the time that I was dealing with myself,” she said. “But I suppose it’s true that I developed a therapy that provides the things I needed for so many years and never got.”
‘I Was in Hell’
She learned the central tragedy of severe mental illness the hard way, banging her head against the wall of a locked room.
Marsha Linehan arrived at the Institute of Living on March 9, 1961, at age 17, and quickly became the sole occupant of the seclusion room on the unit known as Thompson Two, for the most severely ill patients. The staff saw no alternative: The girl attacked herself habitually, burning her wrists with cigarettes, slashing her arms, her legs, her midsection, using any sharp object she could get her hands on.
The seclusion room, a small cell with a bed, a chair and a tiny, barred window, had no such weapon. Yet her urge to die only deepened. So she did the only thing that made any sense to her at the time: banged her head against the wall and, later, the floor. Hard.
“My whole experience of these episodes was that someone else was doing it; it was like ‘I know this is coming, I’m out of control, somebody help me; where are you, God?’ ” she said. “I felt totally empty, like the Tin Man; I had no way to communicate what was going on, no way to understand it.”
“So many people have begged me to come forward, and I just thought — well, I have to do this. I owe it to them. I cannot die a coward,” said Marsha M. Linehan, a psychologist at the University of Washington.
Her childhood, in Tulsa, Okla., provided few clues. An excellent student from early on, a natural on the piano, she was the third of six children of an oilman and his wife, an outgoing woman who juggled child care with the Junior League and Tulsa social events.
People who knew the Linehans at that time remember that their precocious third child was often in trouble at home, and Dr. Linehan recalls feeling deeply inadequate compared with her attractive and accomplished siblings. But whatever currents of distress ran under the surface, no one took much notice until she was bedridden with headaches in her senior year of high school.
Her younger sister, Aline Haynes, said: “This was Tulsa in the 1960s, and I don’t think my parents had any idea what to do with Marsha. No one really knew what mental illness was.”
Soon, a local psychiatrist recommended a stay at the Institute of Living, to get to the bottom of the problem. There, doctors gave her a diagnosis of schizophrenia; dosed her with Thorazine, Librium and other powerful drugs, as well as hours of Freudian analysis; and strapped her down for electroshock treatments, 14 shocks the first time through and 16 the second, according to her medical records. Nothing changed, and soon enough the patient was back in seclusion on the locked ward.
“Everyone was terrified of ending up in there,” said Sebern Fisher, a fellow patient who became a close friend. But whatever her surroundings, Ms. Fisher added, “Marsha was capable of caring a great deal about another person; her passion was as deep as her loneliness.”
A discharge summary, dated May 31, 1963, noted that “during 26 months of hospitalization, Miss Linehan was, for a considerable part of this time, one of the most disturbed patients in the hospital.”
A verse the troubled girl wrote at the time reads:
They put me in a four-walled room
But left me really out
My soul was tossed somewhere askew
My limbs were tossed here about
Bang her head where she would, the tragedy remained: no one knew what was happening to her, and as a result medical care only made it worse. Any real treatment would have to be based not on some theory, she later concluded, but on facts: which precise emotion led to which thought led to the latest gruesome act. It would have to break that chain — and teach a new behavior.
“I was in hell,” she said. “And I made a vow: when I get out, I’m going to come back and get others out of here.”