Health & Fitness

Stopping the stigma against mental illness

Writer and talk show host Cristina Saralegui with son, Jon Marcos Avila, who was diagnosed with bipolar disorder.
Writer and talk show host Cristina Saralegui with son, Jon Marcos Avila, who was diagnosed with bipolar disorder.

Nathan Cole had been acting strange for a while — talking nonsense to his parents, believing he was scheduled for a special summit with President Barack Obama, claiming he had discovered a cure for cancer — but it wasn’t until he came to his house with a knife that his family understood he was suffering a psychotic breakdown.

He wanted to kill his mother. He was 19.

Cole was admitted into the crisis stabilization unit of a nearby psychiatric hospital in upstate New York. It would take six hospitalizations over more than 18 months, however, before the young man was actually better.

“It was terrifying,” recalls Robin Cole, who now lives in Bay Harbor Islands. “You don’t know what’s going to happen, even if he’s going to get better.”

Nathan was diagnosed with, among other things, schizophrenic affective disorder. On medication and attending group therapy, he now works full-time as a mechanic. He’s 24.

He is, on many fronts, a success, the kind of story members of the National Alliance on Mental Illness (NAMI) want others to hear. “We want people to know there are possibilities,” says Cole, president of the Miami-Dade chapter of NAMI. “They can and do go on to live good, productive lives.”

NAMI, along with the University of Miami’s Department of Psychiatry, is hosting a summit on Saturday to educate the community about mental illness. The all-day event, “Stop the Stigma: Advancing Treatment of Mental Disorders,’’ will feature Dr. Charles Nemeroff, the Leonard M. Miller professor and chairman of psychiatry and behavioral sciences at the University of Miami Miller School of Medicine, and Elyn Saks, a Yale Law School graduate who lives with schizophrenia and is a professor of law, psychology and psychiatry at the University of Southern California Gould Law School. She will talk about her journey through mental illness, told in her best-selling autobiography, The Center Cannot Hold. Other speakers also will weigh in.

NAMI’s intent is to to erase the embarrassment and secrecy that often accompanies a mental illness diagnosis. “We need to educate the community about mental illness,” Cole says. “It’s the way to combat the isolation and the lack of treatment and funding in our community.”

Mental illness is more common — and more destructive — than people think. One in five children and one in four adults suffer from a mental disorder in any given year, according to NAMI, and 75 percent of all cases begin by age 24.

The cost, both in human and financial terms, is exorbitant. Untreated mental illness can be fatal: suicide is the third-leading cause of death of young people ages 10 to 24, and 90 percent who died by suicide have an underlying mental illness. What’s more, depression is the leading cause of disability worldwide, costing the United States $193 billion in lost earnings each year.

In Miami’s diverse communities, these tallies are particularly important. Hispanics tend to suffer from mental illnesses, PTSD or emotional disturbances at a higher rate than the general population but receive mental health services about half the rate of non-Hispanic whites.

Journalist, author and talk show hostess Cristina Saralegui knows the importance of early detection and treatment. Her son, Jon Marcos Avila, was in high school when she and husband Marcos Avila found out their youngest child was cutting himself. They figured it was a phase. But when he tried to commit suicide at 19, after a break-up with a longtime girlfriend, Saralegui knew it was more serious than they had been led to believe.

“It was horrible,” she recalls. “I don’t have words to describe it. I thought that this is what happened to people who were on my talk show but not to me.’’

Saralegui, who went on to write with characteristic brutal honesty about the experience in her book, Rise up & Shine: My Secrets for Success in Career, Relationships, and Life, admits that the worry — and Jon Marcos’ treatments — would exact a heavy toll on the family. To deal with his bipolar diagnosis, Saralegui drowned her sorrows with drink, until her husband confronted her.

“At first I didn’t say anything to anybody,” she says. “I was like that for a long, long time, but I realized that if we’re going to end the stigma, if we’re going to stop worrying about lo que diran [what people will say], we have to talk about this publicly.”

Jon Marcos, now 29, is at home and doing well. And Saralegui has this advice for families dealing with a mental illness: “You have to arm yourself with a lot of patience. You have to research as much as you can. And you need to accept that this is for life.”

For parents, acceptance is sometimes as difficult as finding treatment for their children. “It rips your heart out as a mother,” says Donna Shepard of Coral Gables, whose daughter Jillian suffered from depression. “But as a mother you also never ever give up.”

Shepard, who is a director of NAMI Miami and on the advisory board of UM’s Department of Psychiatry, tells a heart-rending tale of trying different drugs and visiting various healthcare professionals in her relentless search for a treatment plan to help her daughter.

She learned a valuable lesson: “You have to be willing to step out of the box. What works with one person won’t necessarily help another. You must be willing to persist and persist and persist.”

She did — and it paid off. Jillian now works in her younger sister’s jewelry design business and has signed up to finish the last 30 credit hours for her teaching degree. Like Cole, Shepard points to her own experience as a lesson in hope.

“We need most of all exposure so people know they’re not alone,” Shepard says. “We need people to come out, to spread the word, to know there’s a place to go.”

If you go

What: “Stop the Stigma: Advancing Treatment of Mental Disorders,” a health summit highlighting information about diagnosis, intervention, research, treatment and recovery.

When: 8 a.m. to 5:30 p.m. May 2.

Where: University of Miami Hospital, South Building Seminar Center, 1295 NW 14th St., Miami.

Information: To sign up for the waiting list, go to www.namiofmiami.org.

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