Personal battles show challenges of eating disorders
November 1, 2007
By MEGAN JAMES
MIDDLEBURY — At a doctor’s visit about a year and a half ago, Jade Denny, who was 19 and five feet tall at the time, weighed in at 60 pounds. She had been anorexic since her junior year at Vergennes Union High School, but it wasn’t until this appointment that she acknowledged she had a problem.
If Denny didn’t get help now, her doctor told her, she was going to die.
“When am I going to die?” she asked.
“A week or two, a month, maybe more,” she recalled her doctor saying.
But it wasn’t easy getting help. On paper, Denny looked fine. Her pulse and blood pressure were normal; the hospital wouldn’t admit her.
Over the next month or so, a nutritionist tried to reintroduce her to food. She ate, knowing it was a matter of life or death, but still entrenched in her eating disorder, she began refusing liquids. Her mother, Maria Farnsworth, would later see this as a blessing in disguise; dehydration was her ticket to Fletcher Allen Health Care.
Once admitted, Denny and her mother could meet with a mental health team to talk about treatment for her anorexia.
According to ANAD, the National Association of Anorexia Nervosa and Associated Disorders, approximately 7 million women and 1 million men in the United States currently suffer from eating disorders, including anorexia, or self starvation; bulimia, eating large amounts of food and then purging that food by vomiting or using laxatives or diuretics; or binge eating.
Denny was one of about 2 percent of adolescent girls in the U.S. with anorexia.
“I said to Jade that day (at Fletcher Allen), ‘This is the hardest thing I’ve ever had to say, but this isn’t working and you can’t come home,’” Farnsworth said. “‘You need to go and get help.’”
Denny is 20 years old now and living in Middlebury, back at a healthy weight and for the first time in about three years, eating whatever she wants whenever she wants. But her journey out of anorexia wasn’t an easy one. Like many Vermonters who suffer from severe eating disorders, fighting her disease meant battling her insurance company and going out of state for in-patient treatment.
“If you really have a severe eating disorder in Vermont you’re piecing together your care,” said Lori Dotolo, a nutritionist at the Vermont Department of Health’s Middlebury office. There are plenty of people willing to provide support — at the Counseling Service of Addison County, at the Burlington Eating Disorder Center and in the health departments of area high schools — but treating the illness requires coordinating all those services.
“There’s a chance that a piece might get missed or duplicated, which can be almost as frustrating,” Dotolo said.
Denny started her treatment at the Brattleboro Retreat, a rehabilitation center for people with a variety of behavioral disorders. Brattleboro treats people with eating disorders, but they are mixed in with alcoholics, cutters and people with drug addictions.
“As great as (Brattleboro) was as a jumping off point, they would hand me books and say, ‘Read this and relate it to yourself,’” Denny said. “But it was never me in that book. Why would I want to read the 12 steps to recovering from alcoholism when it’s not the same thing?”
At her sickest, Denny hardly ate anything at all. She had eliminated carbohydrates, sugars and butter from her diet. She wouldn’t lick envelopes or use lip balm for fear they would give her calories.
She survived on rolled-up pieces of turkey, but only Shaw’s turkey — because it listed the calories on its label — and never before rinsing it off in the sink and patting it dry. She ate green beans and peas, but only after measuring them to the exact serving size listed in the nutritional facts on the label.
One night she accompanied her mother to the grocery store and they stood in the pickle aisle for 20 minutes because Denny wanted a pickle, a non-caloric food, Farnsworth noted.
“She read almost every jar of pickles there,” Farnsworth said. “And we went home that night without a pickle.”
It wasn’t simply a desire to be thin that drove Denny’s eating disorder. Like many anorexics and bulimics, it was a way of fabricating a feeling of control. Denny started limiting what she ate during an abusive relationship with a stepmother, she said.
“She controlled everything, and (my eating disorder) was the one thing she couldn’t take away from me,” Denny said. “In hindsight, I see this so clearly. I was so miserable, I wanted everyone else to somehow know what was going on inside my head and body. I felt so alone.”
Salisbury resident Ultima Danforth said she was also looking for control when she became bulimic nearly 30 years ago. Danforth is 43 now and healthy, and for the last few years she has been visiting area high schools to talk about her own experience with an eating disorder.
“With time, the scale tilts: the girl had the control at first, but then the food ends up controlling the girl,” Danforth said of the way an eating disorder takes over.
According to Dr. Breena Holmes, a Middlebury pediatrician who specializes in body image distortion, this is why people suffering from eating disorders require a multi-faceted treatment program.
“It’s a very complicated medical problem that requires a full team of people to help patients get back on track,” she said. “You need a medical home, a place where concerns like blood pressure, weight and pulse can be addressed. Then you need a very sharp counselor who understands the disease … and then a nutritionist.”
Luckily for Denny, after two weeks at the Brattleboro Retreat, she found this kind of comprehensive treatment at Walden Behavioral Care in Waltham, Mass., a rehabilitation center dealing exclusively with eating disorders.
On her first night there another girl in the program came to Denny’s room and told her, “I have to be honest with you, you scared me when you walked in here. I thought you were going to die.”
But it was what she said next that got to Denny the most.
“I know you’re going to think this is weird, but everybody in here wishes they were you,” Denny recalls the girl saying. “They wish they were as thin as you.”
At this point Denny had grown lanugo hair — the body’s attempt to insulate itself when too much fat is lost — on her neck, face, inner arms and the tops of her feet. She had lost a lot of the hair on her head, her eyes were a deep gray, her nails brittle and her skin was always dry and flaking. She had stopped menstruating, and she had low blood pressure, an irregular heartbeat and the beginning stages of osteoporosis.
So she taped black paper over the mirror in her bathroom.
“Until I can recognize or grasp who I am, I don’t want to see it,” she said.
Other patients at Walden were walking reminders for Denny that she wanted to get better. At meals she sat across the table from girls on feeding tubes. One woman, only 34 years old, walked with a cane, and would for the rest of her life.
“There was a woman in there who was 65,” Denny said. “I remember I asked her one night — we were making crafts or something — ‘How long have you been sick?’ And she said, ‘I don’t remember when I wasn’t.’”
Danforth knows how persistent an eating disorder can be. She started restricting her food intake as a ninth-grader at Middlebury Union High School, but over the next year the behavior gave way to binging and purging. Before long, she had conditioned her body to the bulimia and no longer needed to put a finger down her throat to induce vomiting. It just happened.
“Whenever the stress levels would peak, my eating would go,” she said. “It was my coping mechanism.”
It wasn’t until after graduating from college that Danforth realized she needed more than counseling to beat the bulimia. But without health insurance her options were limited.
Luckily, she found a research program at the National Institute of Mental Health in Bethesda, Md. They were studying eating disorders and would admit Danforth as a subject. For eight weeks, researchers watched all of her movements: eating, going to the bathroom, showering. All she could do was relinquish control.
Danforth left Bethesda free of bulimia. But ridding her mind entirely of the compulsion to control her eating would take years.
“The real work begins after,” she said. “I’ve been healthy for about 15 years now, but I always tell kids I’m recovering still. Because if it takes 100 days to walk in, it’s going to take 100 days to walk out.”
Denny came home after two months at Walden. She weighed 86 pounds — Walden wanted her to weigh 92, but the insurance company insisted she was ready. This was when the support of her family became integral to her recovery, her mother said.
“With every little baby step that comes along you have to be a cheerleader,” Farnsworth said.
Her first night home Denny sat down with her mother, stepfather and sister for a homecoming meal of corn chowder and dumplings, and when Farnsworth offered up blueberry pie for dessert, Denny enthusiastically dug in.
“It’s not just as much as telling someone you need to eat,” Farnsworth said. “You have to fix the mind. It’s a very secretive, shameful illness … One of the things I learned, family-wise, was we had to step back and she had to own it. Until they own it, they don’t get better.”
Denny has been home for more than a year. In September she got her hairstyling license from O’Brien’s Training Center and started a job she loves at Alley Cuts in Vergennes. Earlier this year she became a representative for ANAD, and she has been offering support on the phone and over e-mail to people in the area suffering from eating disorders.
“I got better,” she said. “I have no reason to keep this inside. This is a battle scar for me.”
But she’s still shocked when she looks at photos of her anorexic self, especially one taken on the beach in Maine the summer before she was first admitted to Fletcher Allen.
“I looked like a corpse,” Denny told her mother when she first saw it after returning from Walden.
Farnsworth nodded her head. “Yes, but you didn’t see it.” ?
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