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Spokane, Washington  Est. May 19, 1883

Author Offers Hope For Families Of Mentally Ill

Cecilia Goodnow Seattle Post-Intelligencer

One night long ago, when Sidney was 9, he was jolted out of sleep by the screams of his 14-year-old sister. She was punching their mother and yelling about snakes in her bed.

His hysterical sister was taken to a hospital, where she was diagnosed with bipolar disorder. Sidney was sent, barefoot, to a neighbor’s house.

“For a long time, no one really explained what was wrong with her,” said Sidney, now 50. “All I knew was she was always vicious to me.

“Once she caught me in her room looking at her books, and she beat the hell out of me. If I got a new toy, she’d tear it apart. … The one time I had a tantrum about how mean she was, my mother screamed, ‘If I have two crazy children, I’ll kill myself!’ So from that day on, I was the perfect son.”

If Sidney’s tale had a familiar ring to author Victoria Secunda, it’s no coincidence. Her own sister - a bright, professional woman she calls Deborah - had been ravaged by psychosis as a young adult, leaving Secunda shaken and filled with questions such as: Why her and not me?

“We came from a family where there were very high standards and enormous demands,” said Secunda, author of “When Madness Comes Home: Help and Hope for the Children, Siblings and Partners of the Mentally Ill” (Hyperion, $23.95, 362 pages).

“In my case, I became merely neurotic and hugely anxious.”

She also became a sympathetic ear to more than 100 forgotten victims of mental disorder - the siblings, partners and other close relatives of often difficult and demanding patients. Sidney and others - their identities disguised - spoke of lost childhoods, a stunted ability to distinguish normal from not, and an unspoken fear that they’d be the next to crack.

“These kids are anything but OK,” Secunda said. “They dare not gripe about things that are important to them. These kids need help; they’re the also-rans.”

Secunda said children suffer just as much in families rocked by more common disorders, such as depression. In fact, according to one study, depressed patients are nine times more likely to be divorced than the general population.

Secunda said she believes the lingering stigma of mental illness explains why only 20 to 40 percent of Americans with psychiatric disorders get treatment.

“If you call it a mental illness, people think, ‘God - Norman Bates!”’ she said.

Yet, by her reckoning, an estimated 100 million Americans have a close relative who has suffered from a mental disorder, including anxiety, depression and drug abuse, which can be a form of self-medication for undiagnosed mental illness. She says the good news is that mental illness has a higher treatment success rate 60 to 80 percent than does, say, heart disease, at 41 to 52 percent.

“Having a diagnosis is not the end of the world,” said Secunda, who takes anti-anxiety medication in front of her book-talk audiences to help destigmatize the issue. “Having no one to talk to (about it) is the end of the world.

“I have found through many years of therapy that to tell all is the way to go.”

As traumatized bystanders to severe mental illness, children and siblings face lifelong issues, including the realistic worry that a caretaker role looms in their future.

Secunda found that the legacy of disrupted childhoods colored all aspects of her subjects’ lives. More than half worked in the arts, where they could figuratively cry out for attention, or in the helping professions, where they could search for answers and assuage their guilt at being well.

Despite their mistrust of a mental health system that seemingly failed them, three-quarters eventually sought therapy. And, finding cold comfort in statistics that strongly favor their chance of having normal children, more than half decided to forgo parenthood.

One woman whose father was schizophrenic decided not to tempt fate after she married a man whose parents were both alcoholic and diabetic.

“The sick joke in our house,” she said, “is that if we had kids, they’d all become alcoholic, insulin-dependent schizophrenics. So we raise horses instead.”

Laurie Flynn, executive director of the National Alliance for the Mentally Ill, told Secunda she was keenly aware of the potential impact on her other children when her 18-year-old daughter, the class valedictorian, was diagnosed with schizoaffective disorder, which has some of the features of schizophrenia and affective, or mood, disorders.

“I never wanted my other children to feel they had a special obligation to their ill sister,” Flynn said. “It’s important for them to have their own lives.”

Secunda praises celebrities such as Mike Wallace, Art Buchwald and Patty Duke for spreading hope and understanding by acknowledging their treatment for mental disorders.

While disclosure often carries a risk, it has been a boon to “Shine” pianist David Helfgott, who has forged a new career by publicly triumphing over schizoaffective disorder, even in the face of dismal musical reviews from critics.

Secunda cites an even more inspiring example: Fred Frese, director of psychology at Western Reserve Psychiatric Hospital in Ohio, who went on to earn a doctorate, marry and raise four children after being diagnosed with paranoid schizophrenia.

“What seemed to make such relationships work is that everyone, including children, in the family talked about what was going on,” Secunda said.

She calls Frese a hilarious and charismatic man who draws standing-room-only audiences at his talks to CNPs, or Chronically Normal Persons. He’s vigilant about his symptoms, carries extra medication, and accommodates the ultrasensitivity his illness induces by handing out a card explaining his condition.

“When I am berated, belittled, insulted or otherwise treated in an oppressive manner,” it reads, “I tend to become emotionally ill. Could I ask you to restate your concern in a manner that tends not to disable me.”

The outcome is less promising when mental disorders remain secret and untreated. Children of the mentally ill are at special risk, according to the American Academy of Child & Adolescent Psychiatry, not only because their genes may tilt them toward psychiatric problems, but because they may lack a consistent, loving environment.

“Unfortunately,” the academy says, “families, professionals and society often pay most attention to the mentally ill parent and ignore the children in the family.”

Siblings of mental patients face even tougher challenges than parents, according to Eleanor Owen, executive director of Washington Advocates for the Mentally Ill, who has experienced both roles - sibling and parent - and counseled thousands of families.

“After a period of time, parents resolve any residual guilt they may have felt,” Owen said, “but my observation is siblings never do. There’s a sibling bond that’s very different than any other relationship people have.”

Secunda, 58, paints a harrowing portrait of the breakdown of her own half-sister, Deborah - the wise big sis who taught her how to navigate life’s milestones, from the senior prom to the scary abyss of college graduation.

As a overburdened child, Deborah was the stoic peacemaker in a wildly dysfunctional family marked by alcoholism, multiple marriages and incest. Secunda believes Deborah’s illness, which probably had a genetic component, was a kind of sanctuary for her.

Fortunately, Deborah recovered enough later in life to hold her symptoms in check and return to work, although she sometimes needed to increase her medication or take medical leaves.

That likely will become a familiar scenario in workplaces across America as employers fall in line with the Americans with Disabilities Act, which requires employers to provide reasonable accommodation to workers with mental as well as physical disabilities. Secunda said that wasn’t a problem for Deborah’s employers, who “loved her and treasured her talents.”

Sadly, Deborah died of cancer before Secunda’s book came out.

As Secunda gathered anecdotes for her book, she also compiled a wish list from those she interviewed.

Improved access to mental health care is the top priority for many siblings and offspring, who also want more safeguards for their own protection against dangerous relatives who don’t meet the legal test for forced commitment.

They also said they’d like a larger role as consultants on treatment and public policy. And they pleaded for more collaboration among researchers warring over biological vs. environmental theories of mental disorder.

Most of all, family members want to be heard.

Secunda says she hopes her book brings comfort to relatives who feel that no one will listen, that they have nowhere to turn.

“They are not, and need not be, alone,” she says.