A Death at Age 19 Leaves a Family Struggling to Understand an Eating Disorder
Tuesday, May 5, 2009
Leah's voice was calm on the phone.
I'm on my way home, she said. Sarah died this morning.
In the steady tone my best friend would use to say she had a flat tire or was late for class, Leah explained that she was about to board a flight to join her family as they prepared for her little sister's funeral.
Leah had known on some level that this might happen. She'd read the books, done the research and understood that girls with eating disorders got better, or they didn't. She saw Sarah as what she was: the everygirl of her illness, not immune because she was smart and beautiful, popular and athletic. But the knowledge that it might happen did nothing to prepare Leah.
Her false serenity lasted until the funeral, where she sat beside her parents in the synagogue and greeted a seemingly endless line of mourners. I took my place behind her, next to her aunt. Person after person shuffled forward to offer tearful embraces, and Leah's cocoon suddenly collapsed. The piercing cry that tore from her throat silenced the room.
Leah's aunt and I lunged forward in the instinctive way that one body answers another: our palms pressed against her back, fingers wrapped around her shoulders. Leah's scream subsided into a whimper, then quiet. The day shuddered on.
A growing consensus suggests that for young people with eating disorders, the sooner the problem is identified and aggressively treated, the better the chance of recovery. It is a truth that haunts Sarah's family; the tragedy of a teenager's funeral is all the more poignant when there is an underlying question of whether the loss could have been prevented; when those left behind cry not just for the person who is gone, but for the missed moments and lost opportunities that might have saved a life.
* * *
I don't know really where I should start. I guess with how I feel. I feel like a complete failure. I've let the bulimia take over again, and I'm slowly crumbling into nothing.
This is the first entry in a journal that Sarah Siskin started keeping on Feb. 19, 2003. She was almost 19 years old, on a medical leave of absence from George Washington University after a seven-year struggle with bulimia. For a young woman stricken by a disease that feeds on denial and the illusion of control, the opening lines of Sarah's journal are a powerful admission. Sarah finally saw what she had lost to her illness, and she wanted to get better:
I was smart, on the honor roll, I danced, skated, worked at the hospital, strived for so many things . . . but I'm none of those things anymore. All that's left is the bulimia, is death. But I don't want that. I want life, a good life where I can be content with myself.
Just two months after she wrote these words, Sarah summoned the courage to tell her parents how she felt.
"We had a wonderful conversation," Alan Siskin remembers. His daughter acknowledged that she needed inpatient care, he continues. Her tone was calm, honest, full of clarity; there was none of the defensiveness that had marked earlier discussions about treatment. Let's talk more tomorrow, Sarah said. She wanted to make a plan for recovery and returning to college.
That was exactly six years ago. Sarah's parents went to bed relieved; it would finally be okay.
But an electrolyte imbalance resulting from Sarah's repeated purging sent her heart into cardiac arrhythmia overnight. The next morning, Barbara Siskin found her daughter on the floor of her bedroom with no pulse, warm to the touch. Barbara called 911 and performed CPR until the ambulance arrived. The emergency room doctors at Montgomery General Hospital, where Sarah had worked in high school, tried for 45 minutes to save her. Then they told her parents: We're so sorry.
* * *
"You think, 'If I'd only done this, if I'd only done that, maybe things would have been different,' but that's all hindsight," Alan Siskin says. "I remember my father saying very early on, and it rings in my ears and it will forever, that they had friends who had a daughter with this problem and she wound up dying. And I remember thinking, 'Well, that will never happen here.' "
It started in middle school with compulsive exercising, over-the-counter diet pills and laxatives. Around age 12, Sarah and a couple of her friends began experimenting with vomiting as a way of managing their weight. As a perfectionist navigating the delicate transition from child to teen, Sarah was determined to excel in everything she did. That desire drove her to become a gifted figure skater, a star on her high school pom squad -- a dance troupe that performed at sports events -- and an A student at Sherwood High School in Sandy Spring.
Eating disorders are "often tied to perfectionism," explains Graham Redgrave, assistant director of the eating disorders program at the Johns Hopkins University School of Medicine. "As an eating disorder progresses, that tendency becomes even worse," he says.
Alan Siskin, a technical director for WJLA-TV, and his wife, Barbara, a facilities administrator for BAE Systems Technology Solutions & Services, first brought Sarah to a therapist in ninth grade. Sarah saw several therapists over the following years, but her parents saw few positive results. Meanwhile, various medical problems -- back pain, headaches -- sent Sarah from pediatrician to nutritionist to neurologist.
"I felt like all we did was go to doctors," Barbara says. But the Siskins believed that the doctors were consistently focused on the symptoms rather than the underlying problem.
"All they wanted to do was give her a pill to take," Alan says. One nutritionist, after being informed of Sarah's eating disorder, remarked that her weight "seemed fine," Barbara adds. That only fueled Sarah's denial.
Eating disorders are rooted in psychological fears about body image, Redgrave explains, but "the thing about these kind of disorders is that boundaries of mind and body get blurred. For example, is it psychological if the thought of eating makes you nauseated?"
Though the urge to binge and purge is psychological, patients describe physical cues as well, Redgrave adds: "Patients often report a building-up of an inner tension that's then somehow 'numbed out' by binge eating and released by vomiting." Repeating this behavior prompts the gastrointestinal system to slow down, resulting in bloating, nausea or constipation after eating. The longer the cycle persists, the more self-reinforcing it becomes.
"The simple way to describe it is to say it's like scratching an itch," says Redgrave. "You scratch, then there is temporary relief. Then the itch comes back, and it's worse. The only way to stop the itch is to stop scratching." And the key to stopping the scratching, Redgrave continues, is early intervention. Though he also stresses that it is never too late to seek help, he says early interruption of an unhealthy pattern increases the odds of successful recovery.
* * *
Despite intermittent bouts of bulimia during high school, Sarah sustained the physical demands of the pom squad. But as a junior, she learned that she would be the only fourth-year member of the squad to be denied an "officer" position. "Poms," as the girls called it, had become the center of Sarah's world, and failure to reach her crowning goal was devastating. She didn't quit, but she packed up years' worth of memorabilia from her bedroom and put it in the basement. Her bulimia gained momentum.
Sarah said she hoped that college would offer a chance to start over, but she stayed barely two months at GWU before taking a medical leave. Soon after, in November 2002, she checked in to St. Joseph's Medical Center in Towson, Md., for three weeks of inpatient treatment. While there, she wrote a letter to Leah:
I've realized being here and talking things out that you are the biggest role model in my life. You're strong, loving, caring and perfectly happy the way you are . . . you're beautiful inside and out. I hope someday I'll be there too.
Sarah emerged from the program with her bulimic pattern broken, but she remained insistent that she didn't need to go into outpatient treatment.
"We tried to convince her to do the follow-up," Barbara recalls, but Sarah was an adult legally, and there was little they could do. Advice from Sarah's doctors and therapists was ambiguous at best: "They'd say, 'It's a process, and there will be setbacks,' " says Alan, "but they never said what they would be exactly, or how to handle them."
Researchers have now "figured out that it's very important to include the family, but that was not a concept then. If anything, it was the total opposite," Barbara remembers.
The emphasis on the role of family in the treatment of eating disorders has heightened in the years since Sarah died; Redgrave mentions the increased application of the Maudsley approach to treating anorexia, in which the family monitors and controls the child's eating habits. Though it is harder for the family to help supervise treatment of bulimia -- which involves more-secretive behavior -- it is still essential to keep the family informed and included, Redgrave says. When accepting a patient into his program, Redgrave tells parents that the disorder is not their fault, nor their child's. "It is a watershed moment," he adds; parents are often overwhelmed to hear a medical professional address their feelings of fear and guilt.
After her release from St. Joseph's, Sarah started a job as a children's exercise instructor at local day-care centers. She took antidepressants, which are often beneficial in treating patients with eating disorders and proved helpful in her case. But within a couple of months she suffered a relapse and started skipping therapy appointments. She became too exhausted to drive, sometimes pulling her car over to the side of the road to rest. The chronic aches returned, and she gave up her job.
Leah came home from Ithaca College for Passover in mid-April. One night, Leah helped Sarah get ready to go out to a concert. When she finished Sarah's makeup, Leah hugged her little sister close.
"She was all bones," Leah says. That was two weeks before Sarah died, on April 29, 2003.
The Siskins did what they could to forge some meaning from Sarah's death. They created a scholarship in her name and helped to organize what they hoped would become an annual health fair at Sherwood. They wanted to heighten awareness and help provide the resources that they had had such difficulty finding. The fair was considered a success in the fall of 2003, but the funding didn't last and the fair did not return the next year.
* * *
A loved one dies, and you start counting: first, hours since the last time you saw her. Then days, years.
On the first day, everything seemed far away, slow and surreal. Framed photographs and albums were brought downstairs. On the TV screen in the living room, Sarah giggled as she opened presents at her fourth birthday party.
Candles were lit, prayers whispered. The house filled with people, emptied, filled again. Food was everywhere on tables and countertops, on shelves in cabinets, food crammed into every corner of the fridge; food intended for comfort, for healing -- everywhere, this reminder of Sarah's insurmountable war.
* * *
Michelle Arroyo, Sarah's friend and fellow member of the pom squad, remembers Sarah as brimming with positive energy. "She cared so much about everyone else," Michelle tells me.
She recalls that the girls worried about Sarah. "She was very petite but would compare her body to other girls' bodies . . . and trying on uniforms was always a big deal: She wanted to make sure that she had the smallest size," she says.
Michelle explains that several of the girls confronted Sarah once, during a break in practice, but Sarah was defensive. "She said, 'My parents are just overreacting. Everyone is overreacting.' She wanted to be left alone; she tuned it out."
I ask Michelle whether any of the other girls on the squad had eating disorders. She pauses. "I think what some of the other girls did was more like experimenting."
"With bingeing and purging, and some who were just not eating," she says. "And a lot of people do it because they want attention, and then once they get the attention they're done with it." The pom squad director had more than one conversation with girls over the years about their weight and eating habits, Michelle says. Redgrave notes that sports with particular emphasis on body weight often increase the likelihood that participants will employ extreme measures of weight control; he adds that there can be a "social contagion" element, when certain behaviors spread through a community "because 'everybody is doing it.' "
I tell Michelle about Sarah's disappointment when she was the only senior not chosen to be an officer. Michelle nods. It had happened to her, too, two years before it happened to Sarah.
"It was devastating to me, too," she says. "As trivial as it might seem, for a 17- or 18-year-old, it's everything." She says that she quit the squad after she was passed over for an officer position, and had no feeling of regret, "only peace."
Michelle describes "process of elimination" activities, where the squad would perform the same routine repeatedly, and after each round the captain would remove the strongest performer from the lineup. Sarah, Michelle recalls, was always among the first to sit. But despite Sarah's skills, Michelle also remembers her -- like many of the girls -- succumbing to the pressure, crying as she ran laps around the track.
It all looked very different from where Leah and I used to sit in the stands of the football stadium, watching Sarah perform at halftime with the squad, leaping to our feet and shouting her name at the end of each flawless routine.
* * *
One of Sarah's friends told the Siskins that other girls who knew Sarah and also struggled with eating disorders were shaken by her death. One even came forward to seek treatment; a small relief. At the burial, we scanned the faces of the girls who had come to say goodbye, wondering which of them might be fighting Sarah's battle. Wondering if Sarah might save a life by losing hers.
After the ceremony, as the cars filed away along the cemetery roads, the members of Sarah's pom squad stayed behind and gathered in a circle around the open grave. They linked their arms over one another's shoulders, heads bowed in the afternoon sunshine. Seen through the window of the car, the girls looked fragile; smaller with distance, holding on to each other, until we turned a corner and they disappeared.