Confronting mental illness: No easy answers

Ellen Rosenbaum talks during a meeting of Achraiyut (Hebrew for ‘to assume responsibility’) at Congregation Neve Shalom. The group, founded in 1993, is for individuals living with mental illness. The group meets the first Monday of the month. Although most of the group’s members are Jewish, it is open to individuals of other faiths as well.

By Ellen Futterman, Editor

Jason Wilson wants people to understand that although he hasn’t been able to work full time since 1999, he’s neither lazy nor is he a loser. What he is, he explains, his voice choking with emotion, is mentally ill. The 41-year-old was diagnosed with bipolar disorder in 2000, though he can trace his depression back to when he was 13 and began masking it with drugs and alcohol. 

“I’m no longer ashamed or trying to shy away from the fact that I am mentally disabled,” says Wilson, who graduated from Parkway North High School and attended Congregation Shaare Emeth as a youngster. “I want people to understand there is no shame or embarrassment in this. I’m finally standing up for myself. This has been a long journey and it’s far from over but I am committed to getting better.”

Arlen Chaleff understands, as does Ellen Rosenbaum. So do Gordon Kohn and Sid Wasserman. Like Wilson, all four are Jewish and have been dealing with severe mental illness for decades. Wassserman is also a recovering addict. 

All of these St. Louisans are pioneers because they have chosen to eschew the profound stigma associated with mental illness and give it a face. They understand theirs is a real disease, like diabetes or cancer, and should be treated as such instead of a character flaw or something they will “get over” in time. 

“One critical thing to keep in mind is that when properly treated, 80 percent of people with mental illness can live very productive lives,” says Chaleff, 71, who was diagnosed with bi-polar disorder 38 years ago and is vice-president of the board of the National Alliance of Mental Illness (NAMI)-St. Louis chapter.

Among the things dozens of St. Louisans impacted by mental illness say is needed in the Jewish community:

  • More community education to reduce the stigma so more people would be willing and able to seek help;
  • Easier access to services, so individuals and families dealing with mental illness would feel less intimidated by the process;
  • A comprehensive adolescent day treatment center for teens with serious mental health issues;
  • More housing and job opportunities for adults living with mental illness.

Shattering the stigma

Todd, who is Jewish, says he felt intellectually inferior and “depressed off and on” while attending Ladue Horton Watkins High School in the late 1980s. But it wasn’t until years later, when he became crippled by depression and could not get out of bed that he finally admitted himself to a St. Louis hospital — and he did so on four separate occasions between 2009 and 2010. 

“I had many bouts with depression before, but in 2009 it was a perfect storm that put me in the hospital,” says Todd, who choose not to use his full name because of concerns about being judged and upsetting his family.

“I had a job at a motel that I hated in an area of town where the police were occasional visitors,” he continues. “I was working hard and barely making enough to get by. 

“Things that I used to shrug off started depressing me. I always had an inferiority complex, especially toward my Jewish peers who had great jobs, wives and children, and traveled to nice places. All of a sudden, it started hitting me that I would never be in a place like them. I really felt that a ‘nice Jewish boy’ like myself should be doing better.”

Today, Todd says he is doing better. “I would like to get a part-time job but employers want to know why I haven’t worked for three years,” he says. “I’ve been reluctant to be honest and explain I am dealing with depression because I fear it will make potential employers nervous. I worry about them Googling my name, which could link to a blog I wrote about my depression. Most people won’t hire me because of my mental illness.”

Thanks to the Americans with Disabilities Act, that kind of discrimination is illegal. But the fact that it still happens leads mental health professionals such as Dr. Paul Packman, a St. Louis psychiatrist in private practice, to wonder, “When are we going to stop calling it mental illness when it is truly a brain disorder? We have an American Cancer Society, an American Heart Association, an American Diabetes Association, but no American Brain Disorder group.”

Although campaigns to demystify mental illness, including ones that feature stars such as Glenn Close and Carrie Fisher, and a greater understanding of the biochemistry of the brain and psychiatric illnesses have helped, shame and isolation still persist. 

“There have been improvements in the last 10 years but often it’s two steps forward and one step back,” says Bob Carolla, a nationwide spokesperson with NAMI. “With all the good efforts, it only takes one sensational television show or movie to erode the progress we are making.”

Carolla says lingering myths continue to fuel fear and ignorance. “Research shows the degree of violence in society linked to mental illness is actually very small,” he says. “Obvious portrayals in a horror movie or a headline about a tragic but exceptional event are what distorts the proportionality and influences people’s perceptions.”

 WINGS take flight

The St. Louis Jewish community is not immune to misperceptions, either. As recently as 10 years ago, Jewish Family & Children’s Service (JF&CS) had no programs to serve its mentally ill clients and their families “The thought was these services weren’t needed,” says L. Louis Albert, executive director of the agency. “Mental illness was not the kind of issue people talked about then in the Jewish community.”

Arlen Chaleff knows that to be true. She remembers her life was filled with “normal, happy experiences” growing up. An A student at Clayton High, she went on to graduate from Washington University with honors. It wasn’t until the age of 33 that she had the first in a series of severe depressive episodes and spent the next 15 years fighting the highs and lows of her illness. This included several hospitalizations and electroconvulsive therapy. 

 “During one of my severest depressions I turned to my rabbi for counsel and support,” she says. “Yet there was no service in the Jewish community to which I could turn.”

It wasn’t until 2002 that JF&CS offered a program to address the needs of adults and families living with mental illness. The program, called WINGS, offered three main components: case management and counseling services as well as organized social events for individuals with mental disorders; financial planning and support for families, and community outreach to help raise awareness.

Depending to whom you speak, WINGS was either tremendously successful in helping those it served or was greatly underused. In any case, the program was terminated in 2007-2008, says Albert, because “it was not reaching enough Jewish people living with mental illness. Our goal was to find a more effective way to address the needs of this population. We needed a stronger model to reach more people. So we decided to build components of WINGS into all of our programs.”

Albert acknowledges there were “a lot of bad feelings” after WINGS shut down. Some felt they had invested time and money in a program that was suddenly cut without explanation. Staff lost their jobs. “Word on the street was that we had abandoned our focus on mental illness, which was not the case. We expanded our focus. We’re just doing it differently,” says Albert.

 “Jewish people living with mental illness are coming forward now for help in much greater numbers than they did prior to the WINGS,” he adds, noting that in 2011, of his agency’s 403 counseling cases (which bridge a variety of issues, including mental illness), 61 percent were Jewish. 

Grassroots efforts spur 

Jewish help groups

Nevertheless, some of the individuals and families involved with WINGS felt its absence left a big void in the Jewish community. They knew mental illness is long term, and wanted to offer resources and support to those impacted by the disease. So eventually they started Jewish Attention to Mental Illness (JAMI), a “spiritual family support group” that also offers programs to make accessing help for mental illness less overwhelming.

“JAMI has been a lifesaver. I almost always find out useful information that helps me to better help my son,” says Lynda Wilson, Jason’s mother. She has been attending JAMI meetings off and on for the past two years. The group meets the third Tuesday of every month at the Jewish Federation Kopolow Building.

Typically, the first half of the hour-long meeting features a guest speaker while the second half is open discussion, though everything said is confidential. At the May meeting, 25 or so participants heard from a legal expert who specializes in helping clients — including those diagnosed with a mental illness and cannot work — apply for government disability benefits.

“We have 78 names in our support group and each receives an email every month about what our speaker will address,” explains JAMI co-organizer Neil Marglous, adding that the number of attendees at last month’s meeting was among the largest since the group formed in 2009. 

“It is still hard to get people to come forward,” he continues. “Some don’t want to acknowledge mental illness in the family or maybe they feel uncomfortable talking about it. At most meetings we generally have six to 10 people.”

But numbers aren’t what matter most. “If we can help one family find housing for their mentally ill adult child or help them better plan for that child’s future, then JAMI is making a difference,” says Chaleff, who is a member of JAMI’s advisory board.

While JAMI caters more toward families, Ellen Rosenbaum oversees a group for Jewish individuals who, like her, are living with mental illness. Diagnosed as a freshman in college, Rosenbaum, 56, says she spent decades “coming to grips that this is not my fault, or my parents’ fault, or the result of an experience I once had. It is an actual chemical imbalance in the brain.”

Feeling a need for a spiritual support group with other Jews who also wanted to “accept their mental illness and get on with their lives,” Rosenbaum began “Achraiyut,” which in Hebrew means “to assume responsibility.” The group has gone through several incarnations since its inception in 1993, but it now meets regularly the first Monday of the month at Congregation Neve Shalom. Most attendees are Jewish, though all faiths are welcome, as is the case at JAMI. 

“At Achraiyut, no one judges or criticizes,” says Rosenbaum, who works at Mental Health America of Eastern Missouri. “We are not a therapy group, but rather we exchange thoughts and ideas. People talk about things they do that work for them. Some are really struggling and some are OK.”

Todd, the Ladue graduate suffering with depression, wishes the group met more than once a month because every time he leaves he says he feels hopeful. “Once I broke down and cried, but it was OK because I feel safe here,” he says. “I’ve had those crying spells in front of friends and family and it’s been frustrating and embarrassing. Who wants to see a grown man cry?”

Another participant, Gordon Kohn, 63, has struggled with mental illness for most of his adult life. He’s a creative guy who writes poetry and puts together model planes. He doesn’t have a car so Rosenbaum drives him to and from meetings.

“I feel isolated all of the time even when I am with people,” says Kohn, who lives alone in University City. “I go (to Achraiyut) because I’m invited and it gives me an opportunity to get out.”

Jews in the margins

Notwithstanding the benefits of programs such as JAMI and Achraiyut, isolation and loneliness often remain recurring themes among many dealing with mentally illness. Esther Scharf, a clinical social worker at JF&CS, feels many of her clients would greatly benefit if someone took them out for a cup of coffee and talked with them for an hour or so.

“It would give them something to look forward to,” says Scharf. “People who have family support tend to do much better than ones who are alone.”

Sometimes, says Rabbi Hyim Shafner of Bais Abraham, people who are mentally ill wander into the synagogue because of its location in the Delmar Loop. “We give them food, we let them sit and pray. We’ve never had one who was dangerous,” he says. 

“Bais Abraham is a welcoming synagogue. If you’re welcoming, you welcome everyone, and create a culture in which all people are equally embraced.”