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Ultra-Orthodox Parents of Children With Mental Illness Face Lonely Struggles

When one teen began bingeing and purging, there were places she could go, but her mother felt she had nowhere to turn

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When Malka was young, Lake Carasaljo, in Lakewood, New Jersey, was so clear that she could see the glasses she once dropped on its sandy bottom. Malka grew up by the lake and raised her six children on its shore. Now 48, she has two girls and four boys ranging in age from 11 to 25. Over the years, her lake became muddy. It was picture perfect—until it was not.

Malka didn’t even know that eating disorders existed when her daughter Shira began binging and purging at 15. (To protect the family’s privacy, both women’s names have been changed.) She had never met a person with a serious mental illness. She remembers watching a movie about the murder of a bulimic model. In it, the model meticulously recorded her daily input and output of food in a notebook. “It didn’t dawn on me that this is a real illness and that this is my daughter,” Malka says. “It seemed like a brilliant mystery.”

It wasn’t until two years later, when their oldest son returned from seminary in Israel, that Malka and her husband were forced to confront Shira’s illness. Their oldest son was struck by how much weight his sister had lost in his absence. “Don’t you see that something is wrong with her?” he asked his parents. Malka’s first response was, “I have to get rid of it, eradicate it. It’s not happening to my child. My child is healthy and normal and productive.”

As is often the case with eating disorders, Shira’s binging and purging turned out to be a symptom of something much bigger. Over the years, she has consulted rabbis for help, while doctors have added one diagnosis to another: anxiety, depression, suicidal ideation, deliberate self-harm, Obsessive-Compulsive Disorder, Borderline Personality Disorder and, most recently, Bipolar Disorder. In 2012, her cousin found her unconscious in her uncle’s basement apartment. Shira had overdosed on a cocktail of drugs. She spent seven weeks in the Psychiatric Division of Weill Cornell Westchester before being transferred to a closed ward in Creedmoor Psychiatric Center, a state institution in Queens Village. After seven months the court order for inpatient treatment was lifted and she was released to an outpatient residence on campus. “I’m too crazy for the rabbis and the doctors don’t get the religious part,” Shira says. “I don’t think there’s a bridge.”

In recent years rabbis and mental health experts have called attention to the high number of bulimic and anorexic girls in the ultra-Orthodox Jewish community. One study concluded that the prevalence of eating disorders is a staggering 50 percent higher in Brooklyn’s ultra-Orthodox community than in the general U.S. population. Because of the growing demand, the Renfrew Center, the prestigious eating disorder clinic in Philadelphia, added a special track for observant Jewish women in 2009, serving kosher meals and facilitating groups that discuss the role of food in Jewish life and how to handle dating and marriage.

But because the problem remains largely hidden behind the veil of impeccability in tight-knit ultra-Orthodox communities, support services for the families of those with eating disorders or other mental health issues have been slow to keep pace. Malka’s search for support outside of her own family has been discouraging: In Lakewood, there are no groups geared specifically toward the needs of mothers whose children are mentally ill. Like other mothers, she was afraid to discuss her eldest daughter’s illness openly. With two children of marital age, she feared that her people might consider her daughter’s illness hereditary, spoiling her other children’s marriage prospects. While genetic testing has become routine within the Orthodox community in an effort to filter against matches prone to Tay Sachs and Canavan disease, for example, little is known about the genetic factors underlying eating disorders and other mental illnesses.

But the experience revealed other, more profound fears: that she would be blamed for her daughter’s illness, or for her inability to control her daughter’s more extreme episodes of acting out. For the first time, the community she’d grown up in, one based on and bound together by faith, was failing to answer her basic need for emotional sustenance through a period of intense need. “It is hard to be different,” she says, “when everybody is the same.”

***

Malka’s love for Shira has always been unshakable. “From the day she was born and even before, the love was there,” Malka says. At 23, Shira measures a lanky, skeletal 6 feet. Witty and charming, she has porcelain skin that glows like a beacon. Intellectually ahead of her classmates, Shira skipped fourth grade. Even so, she continued to be the tallest and brightest girl in the class. Photos show her with her knees bent, yet still towering over her classmates.

One day late last fall, Malka put on a dark leopard-print skirt that reached several inches over her knees, a long-sleeved black pleather top, opaque black tights, flat shoes, and a classy wig to meet me at a local Barnes & Noble to talk about her experience with her daughter’s mental illness. An avid reader of romance novels, she browsed the shelves as she waited for my arrival. When we sit down, she tells me she thinks of herself as shy and gullible. “My kids like to play practical jokes on me,” she says. “One-on-one I’m OK. I like to do what I can behind the scenes.” But Malka stands her ground gracefully when it matters. She might be timid but doesn’t hesitate to correct others when she feels it is called for.

Malka tells me that she believes that spirituality had to be an essential part of Shira’s recovery. “Anything that you can change and control through therapy you can change through spirituality,” she holds. “Just like the dark will be there, the light will be there. Let the light fill you.” She thinks that it is the spiritual void that causes—or at least maintains—her daughter’s mental illness.

When Shira’s illness threatened to swallow the entire family, Malka and her husband took her to Rabbi Dovid Goldwasser in Brooklyn, the author of two self-help books about eating disorders—Starving to Live and Starving Souls.

Rabbi Goldwasser told Shira to return with five questions. The rabbi’s well-intentioned offer, however, only compounded the girl’s struggle. “I remember feeling broken,” Shira says now. “I was struggling with my religious identity. I just felt hopeless because I knew I don’t have those five questions for him. I went home and I wanted to die.“ To Shira, who chatters, observes, and questions the world at 10,000 miles an hour, five questions couldn’t even be a start; with each possible answer, her questions exploded exponentially. To her parents’ dismay, she refused to return to the rabbi for spiritual advice.

In early 2009, Malka and her husband sent Shira to Renfrew, in Philadelphia. The couple followed the doctors’ guidance closely and actively participated in family therapy. They wanted to understand what could have brought on their daughter’s illness and how to help. But Malka still laments that, at the time, Renfrew’s kosher food wasn’t glatt. “Right away we were sacrificing our values,” she says.

After a month at Renfrew, Shira started outpatient treatment in New York, but she soon stopped attending. Malka remembers her daughter falling. “It was like an avalanche that falls and doesn’t stop,” she says. In a family intervention led by Malka’s siblings, the family decided to send Shira to Beit Chaya V’Sarah, an experimental eating-disorder program in Jerusalem that served kosher food, promised to incorporate spiritual practice into its regimen, and allowed residents to celebrate Jewish holidays. At first, Malka says, “Shira really tried with the Jewish part of it.” But soon she was manipulating staff and teaching the other girls how to secretly purge after meals. Malka tried to intervene more than once, calling Shira’s therapist and her psychiatrist, but she felt like her questions were not effectively answered. During the 18 months Shira spent at Beit Chaya V’Sarah, she saw six or seven therapists because no one lasted more than a few months. (The facility has since closed.)

By the time Shira returned from Israel, in 2011, her illness had exhausted much of the family’s savings. The month at Renfrew alone had cost Malka, a bookkeeper, and her husband, a jewelry dealer, more than $20,000; Beit Chaya V’Sarah cost more than $5,000 a month. Back home, Shira was ravenous, emptying fridge and pantry until nothing was left—and then going to purge. “My mother got locks and chains and locked up the fridge,” Shira remembers. Malka also tried to block the bathroom when Shira wanted to throw up. “She would scream and fight and beg,” Malka says. “What was I gonna do? Stand there for six hours?”

Hoping to find a group of women with whom she could share her sorrow, Malka contacted RELIEF, a mental health referral service geared toward the Jewish community. There were groups for people whose spouses suffered from OCD and for people with emotional overeating, but no groups for the parents of children with eating disorders, anxieties, or depression. For a while Malka attended Al-Anon, but “it didn’t hit home.” She considered founding her own group but decided it just wouldn’t work. “Any mother who has a girl with an eating disorder is not going to admit, ‘My girl has an eating disorder,’ ” she says. “They couldn’t even support each other.”

Malka wasn’t entirely alone; her sisters, who knew about Shira’s disorder, got together and arranged for her to see a Jewish therapist at the Lakewood Community Services Corporation, a social service organization that, in 2011, began offering outpatient mental health services to Lakewood’s ultra-Orthodox community. The initiative was launched by Sara Lerner, a clinical social worker. Lerner’s clinic has 35 social workers—and 700 open cases. Today, it operates at three different locations. It is open six days a week, from 9:00 to 5:00, and offers flexible evening hours, with individual social services sometimes extending until 11:00 at night.

It is a continuous struggle to keep up with the community’s growing need. “It’s overwhelming,” Lerner tells me. “At first everybody said nobody is going to sit in the waiting room, nobody is going to come for help. But people are coming. [Although] they will come for their children more than they come for themselves.” And yet, she says, many more who need help won’t come. “There is so much fear,” Lerner says. “The fear of being blamed and the fear of ‘Do people know what’s going on with me or my child?’ Mothers do have to protect their pride and the rest of their children. This is more important than going out and becoming a crusader. You are not going to find that here in Lakewood.”

To escape her loneliness and isolation, Malka joined a group of mothers with “children at risk”—which, in the Lakewood context, refers to children who engaged in taboo activities like hanging out with the opposite sex or refusing to adhere to dress codes. Unlike mental illness or eating disorders, which are more accessible than drugs and can be hidden under loose clothes, it’s hard or impossible to hide that a child is rebelling against the strict codes of ultra-Orthodoxy. “If you have a kid on the corner with orange pants, you’re not hiding it,” Lerner says.

But Malka found that the other mothers’ problems seemed minor compared to what she was dealing with. Their children were wearing jeans and T-shirts and partying with the opposite sex; her daughter had a nose ring, was cutting herself and engaging in promiscuous sex, sometimes for money. So she just sat with the women and listened. “I don’t have to imagine them judging me,” Malka tells me. “I know they do!” She says she’d overheard two women from the group publicly discussing a third woman’s problems at the local supermarket. “Everyone in town knows everybody else,” she went on. “Everyone within the Jewish world has a connection with each other.”

To Malka, joining a group of people outside the Lakewood community was out of the question; she believed outsiders wouldn’t be able to understand her problems as they related to Orthodox Jewish traditions and laws. “Someone ‘normal’ might say: ‘What do you care? Everybody is wearing jeans and T-shirts today,’ ” she explains. “When I talk [to people outside of the community] about how my daughter wants to wear skirts that are above her knees and no socks and short sleeves—or pants—I can’t.”

***

Shira’s younger sister is 20 years old now. When it was time to think about getting married, she quickly agreed to let her parents retain a professional matchmaker—but it was her uncle who introduced her to the young man she wound up marrying earlier this year.

At first, she wasn’t sure whether she should tell her admirer about her older sister’s illness. In a community that lists young womens’ dress sizes on their dating résumés next to their height—and sometimes even adds the mother’s size to help predict the prospective bride’s future morphology—admitting to mental illness is undoubtedly a risk. That’s why Malka initially told her that she shouldn’t tell “the boy” she was dating about Shira’s illness.

Malka wanted to protect her younger daughter—and also enjoy the thrill of courtship. The girl would sit at her mother’s bedside after returning home late at night. “Tellmetellmetellme!” Malka would say, falling asleep while her daughter gushed about their carriage ride through Central Park and their stroll on the boardwalk. Malka herself had hated going out on dates. She felt on show, like she had to be perfect. Her husband was the 12th man she went out with over a three-year period. The first question her mother asked her when she got home from her dates was, “Did he take off his hat?” To her mother, that meant the boy was Orthodox but not “in the box.” Malka says her husband fit the bill perfectly. “We got in the car and he put his hat in the backseat,” she says. “This was in 1986, right before I turned 20. He had a little box with chocolates in his car to share with me. He’s very thoughtful. He’s a good guy.”

As things progressed, though, Malka’s younger daughter began to worry about keeping quiet. “How could I take a secret like this into my marriage?” she asked her mother. Malka was conflicted as well. She wanted her daughter to make a match, and she wasn’t sure whether she would want her own child to marry someone with a mentally ill sibling—but she also wanted to stand with Shira. In the end, she decided her younger daughter had been right. “If they don’t want me because they’re judgmental,” Malka tells me firmly, “I don’t want that kind of a person in my family either.”

After a few dates, Shira’s sister decided to tell the boy her family’s secret. Malka was worried and half-expected his parents to call off the marriage immediately. But his response was gracious: He was more concerned about his fiancée than about Shira being mentally ill. Perhaps he never even told his parents? The wedding went off without a hitch.

For a brief period the chaos of wedding planning pushed Shira’s own dating issues into the background. Shira had fallen in love with a man she had met at a Dunkin’ Donuts close to Creedmoor—a 47-year-old Catholic and recovering alcoholic. She quickly moved into his place on Long Island; the walls in his apartment were adorned with prayers and crosses.

It was hard for Malka to hide her disapproval and pain. Needless to say, Shira’s boyfriend was not invited to her sister’s engagement party or wedding. Malka says that he would never, under any circumstances, be welcomed at their house. She couldn’t even bear to utter his name. “Whatever she finds with him, she can find with a Jew,” Malka tells me. “That’s how we were raised, that’s how our faith works. It goes back thousands and thousands of years.”

Shira’s decision to pursue the relationship prompted Malka to finally pull back from her daughter. “I’m there, I love her, but I can’t catch her anymore,” Malka says. All she can do now, she says, is pray for her daughter—and herself.

For someone outside of her community, the immense importance Malka places on the concept of hope might be hard to understand. “I’m not going to be destroyed,” she tells me, as if to give herself courage. “As long as there’s life, there’s hope. If it’s not going to be in next year or in 10 or 20 years—somewhere along the line I hope Shira will figure out that she can be just as happy and as healthy in the Jewish world. I hope it will happen, I believe it will happen.”

***

Recently, Shira returned to Rabbi Goldwasser, five years after her first visit. She wanted to know whether there was still hope for someone like her, someone who was mentally ill but unwilling to—or incapable of—living by the codes of ultra-Orthodoxy. Despite having long “left the path,” the guilt of not living up to the standards she was raised with was gnawing on her. “It’s part of your genetic makeup,” she tells me in the car on our way to the rabbi. More than that, though, Shira couldn’t, and didn’t want to, divorce herself from her religious family.

As we sit in the rabbi’s stately library, surrounded by books—one of them titled How To Prevent an Intermarriage—Shira finally poses her question. “Is there hope?” she asks.

“The depth of your soul is very deep,” he responds. “I’m so sick of hearing that,” Shira counters. It seems impossible to get to the point. Shira does most of the talking while the rabbi scrolls on his smart phone and disappears from time to time to attend to the ringing landline to “put out fires.”

“To me, spirituality is a parachute,” he eventually says. “To me it’s a life raft, to me it’s something I can hold on to when I’m going down. It’s here to help us, to give us strength.” Shira found the reply exasperating. “I don’t even have a relationship with God!” she tells the rabbi. “Or I don’t see how it could be a relationship. It’s almost like a cancer.”

“Prayer is a tremendous vehicle,” Goldwasser counters. “In dealing with these problems on a spiritual level a person is best able to address what cannot simply be addressed on a physical or mental health level.”

Before we left, Goldwasser talks some more about how Hollywood promotes a “skeletal image” and how, according to the Talmud, every individual is beautiful.

In the car, Shira, who actually finds her skeletal image rather revolting, gulps down the pills she had neglected to take in the morning. She still binges and purges, hovering at a BMI of 15—a Body Mass Index less than 17.5 is considered a common feature of anorexia or bulimia—yet she thinks she has made progress in the last six months: She has been going to group and individual therapy several times a week and is taking her meds; she has applied to college, where she wants to study psychology, and recently moved into her own little studio apartment in Hollis, a poor neighborhood far out in Queens.

Meantime, in Lakewood, Malka is trying to move forward, too. One of the few people she confided in about Shira’s struggles began giving out her number to other women in the community whose own children have mental health issues. Every now and then, Malka receives calls—always anonymous—about how to cope. She listens to the women’s sorrows and shares some of her own experiences. “I hope I have given them something to hold on to,” she says.

***

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Ultra-Orthodox Parents of Children With Mental Illness Face Lonely Struggles

When one teen began bingeing and purging, there were places she could go, but her mother felt she had nowhere to turn