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November 17, 2017
Survivors Discuss Suicide’s Stubborn Persistence, Mismanagement

Dr. Kay Redfield Jamison of Johns Hopkins
Dr. Kay Redfield Jamison of Johns Hopkins
 

Suicide is one of the leading causes of death in the United States, remaining stubbornly high on the list of medical causes of mortality even as deaths from stroke, AIDS, heart disease and leukemia have fallen.

Two people who have survived encounters with this wily enemy of life led off the 12th season of the NIMH Director’s Innovation Speaker Series on Oct. 5 at the Neuroscience Center.

Dr. Kay Redfield Jamison, Dalio professor in mood disorders and co-director of the Mood Disorders Center at Johns Hopkins University School of Medicine, lamented medicine’s disinterest in lithium, the only drug that has yet proven effective in significantly decreasing suicide attempts and completed suicide in patients with manic depression/bipolar illness such as herself.

Jamison says she never misses a day’s dose and is baffled by the fact that medical residents today are largely unaware of the drug’s effectiveness in many patients.

Joining her in a discussion of suicide was Dese’Rae L. Stage, an artist and activist who knew by the age of 15, when her own suicidal thoughts were exacerbated by a friend who took her own life, “that this was going to be my field for the rest of my life.”

Stage was 23 when that life nearly ended. She had “run away to New York City to join the circus” when, despondent over a physically and emotionally abusive relationship, she tried to kill herself.

In an attempt to get past the trauma of the experience, to surmount the “invisibility and erasure” one feels in the aftermath, she set out to find others like herself. That led to creation of the web site Live Through This (livethroughthis.org), a gallery of portraits and true stories of nearly 200 suicide attempt survivors across America.

Jamison was 17 and in high school when she suffered her first psychotic breakdown and depression. In that condition, she learned how to load her father’s gun.

By graduation, the dark mists had lifted, but her mania and depression “got much worse over the years.” At age 28, following a bout of mania and depression, she took what she knew—being a lithium researcher—was enough lithium to kill her.

“I unambivalently wanted to die.”

“Being in a coma is an eye-opener, it turns out,” Jamison observed drily.
“Being in a coma is an eye-opener, it turns out,” Jamison observed drily.

But she didn’t. “Being in a coma is an eye-opener, it turns out,” she observed drily.

Jamison was eloquent in her description of the self-deception she and others with her condition are capable of, recounting a pact she made with Jack, a friend and erstwhile suitor who also suffered from bipolar illness.

The two, both prone to skipping their medication, made a blood oath that they would meet at Jack’s house on Cape Cod to walk the beach—they called it “Hostage Week”—should one feel on the verge of suicide.

“We figured that a week was long enough to make the argument for life,” Jamison recalled. “We agreed not to buy guns or let anyone else have them in the house. Still, I had my doubts. Who are we kidding? It wasn’t in me to call for help, let alone arrange travel to Massachusetts.”

Her skepticism was fulfilled when Jack, a successful Yale grad and holder of some 1,000 patents for everything from toys, to missiles, to household products, shot himself in the head.

“I was shaken, but not surprised,” said Jamison. “Suicide is not beholden to an evening’s promises.”

Suicide, with 1 million deaths annually worldwide, “is a huge problem and it’s only getting worse,” she said.

Almost diabolically, the average age of onset of the most common causes of suicidal thoughts—depression, manic depression and schizophrenia—is the late teens and early twenties, a time when this population is least likely to be in treatment, said Jamison. “It is a very difficult clinical problem.”

It frustrates her that lithium, the gold standard for bipolar illness, is not often enough used nowadays.

“Lithium is the only drug we know that works well in preventing suicide and severe attempts, but few prescribe it.”

Acknowledging that it doesn’t work for everybody, Jamison is nonetheless concerned about lithium’s non-use. Part of the problem is that the drug has gone off patent and is no longer a money-maker. It also means more work for physicians—blood draws and follow-up.

“No one defends or makes the case for it anymore,” she said. “Residents are not taught to use it. Why don’t we do more about that? I don’t understand. Why doesn’t the community use it more?”

She suggested a campaign to persuade physicians to rediscover lithium. Anything to thwart “the pain, the guilt, the agonizing ‘What could I have done differently?’”

Des Stage has lots of ideas about what can be done differently.

While an undergraduate at East Tennessee State University, Stage, who by then was already a suicide loss survivor, was discouraged from pursuing suicide as a field of academic study. Nevertheless, she persisted.

In the immediate aftermath of her own attempt—an event that included a surfeit of embarrassments, as Stage was lightly clothed at the time—she had a dream gig of a professional life. She was working for a record label in New York, which gave her access to such heroes as Jay Z, Tori Amos and Amanda Palmer. The job was cool, but not fulfilling.

Stage bought a camera as a healing tool, a coping mechanism. The thing that had been missing from her studies of suicide was finding the humanity in the predicament of a person contemplating such an extreme act.

Dese’Rae L. Stage offers views on care of suicidal people.
Dese’Rae L. Stage offers views on care of suicidal people.

PHOTOS: MARLEEN VAN DEN NESTE

Seven years ago, she googled “suicide survivor. I was looking for a lived-experience identity. How do you find support groups? How do I get past it? I was already 4 years out from my own suicide attempt. I was unfulfilled in my work with musicians and looking for a personal project that would change that feeling. I immediately thought, ‘What if I could do with my camera what I couldn’t do in academia?’

“I set out to find out who these people were,” she said, and Live Through This was born.

Her first notion was to use her PR contacts from the rock music world to find celebrities who might open up to her.

“Almost all of them told me to buzz off,” she said. “I had no body of work, no credibility.”

She posted Craigslist ads in New York, but that site eventually demurred from publishing her posts. In time, though, people found her. A 2013 Kickstarter campaign brought in $23,000 in 30 days, enough to broaden her recruitment campaign beyond New York City. Within a year, Stage and Live Through This were the subject of a story in the New York Times.

A charming, forthright, admitted “oversharer,” Stage has a disarmingly simple m.o.: “I interview people. I just say, ‘Tell me your story.’ All they know is that I’ve been there.”

Stage takes portraits of survivors, depicting them “in the world they were ready to leave. Just a quiet, honest moment that prompts the viewer to look into our eyes.”

There are rules: participants have to be at least 18, they must be willing to use their full names and likenesses and they must be a year out from their most recent attempt.

“This has been such an anonymous and marginalized group,” Stage says. “I feel that the personal part of suicide is unmined territory.”

Before her site began, “We just didn’t exist,” Stage continues. “We were stuck in a shame closet—let it go, shut up. I was tired of the silence. I’ve never been a silent person.”

Stage is convinced she is changing public attitudes, which was her goal. “Research has shown that ordinary people’s stories have the biggest effect, not celebrities.” Her mission is to “create connections, even if [people] can’t meet face to face.”

So far, she has done 182 interviews in 35 cities. Far from the passive recipient of others’ wisdom, she has become evangelical about larger themes.

“Health care is a problem” in general, she says. “Suicide is a human experience, but we have a hard time treating it that way.”

When she tried to take her life in 2006 in Tennessee, cops pounded on her door and carted her off without allowing her to change clothes.

“I just say, ‘Tell me your story.’ All they know is that I’ve been there,” said Stage.
“I just say, ‘Tell me your story.’ All they know is that I’ve been there,” said Stage.

“It was a humiliating experience, but tame compared to what I’ve heard,” she said. The risk of harm from first responders is an issue, Stage noted, as is the brusque and distant treatment frequently visited on such patients while in the ambulance and at the hospital.

“A person-centered assessment is needed,” she argues, not a filling out of rote and somewhat ridiculous, given the situation, forms.

“Not all people who attempt suicide need hospitalization,” she continued. “We need to learn to ask these people, ‘What do you need?’”

Stage promised herself, in recovery, that she would “change everything about my life.” The opacity and impersonalization of many medical interactions is now an enemy: “It leaves you with nothing to hang your hopes on…It took me until I was 30 to know what questions to ask at intake.”

Only 7 states have suicide training programs, she said, calling for a need to prioritize education, especially given that suicidal ideation can occur in children as young as 5.

Stage concluded, “Regular people are the ones who are going to save lives. But we need more resources, not necessarily adhering to the medical world model. One size doesn’t fit all.”

She warns against platitudes and the retailing of such likely untruths as, “It gets better.”

“That contributes to a sense of futility and hopelessness,” she said. When Stage interviews people for Live Through This, she always asks, Is suicide still an option for you? “Most people who share their stories say ‘Yes, but I don’t want it to be.’ The best approach is to find ways to cope.”

As taboo as suicide is, “It can’t be terrifying to the experts,” Stage said. “We can’t operate from a position of fear. Fear-driven care isn’t care…Talking openly gives other people permission to do so, too. A safe, productive conversation can defuse a crisis and flip the switch.

“People want to tell their stories, but many are afraid,” she said. Virtually all of Stage’s interview subjects decide to tell their stories because they feel that if they can help just one person, it’s worth it.

“Let’s do something different,” said Stage, “together.”

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