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
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.
When our baby had heart surgery, my wife asked me to put on tefillin. I did, for the first time in years, but not the last.