It all began so subtly that I didn't even realize she was missing. She was restricting her food intake. She used to eat a sandwich for lunch; now she came home from school with her lunch intact. She was too busy to sit and eat with the family. I noticed her catching frequent nervous glances into a full-length mirror from various angles.
My wife noticed the changes right away; she had been trained to work as a nutritionist with eating-disordered patients. But I wasn't worried. It was hard to imagine these quirks developing into a full-blown crisis. We agreed to send Rachel to a therapist, and I drove her to weekly appointments with an "expert" in the field, expecting my daughter to be quickly cured. She didn't like the therapy, complaining that it was stupid and besides, she didn't have a problem. But she reluctantly went every week.
She was losing the battle -- worse, she didn't act like she wanted to win.
As the weeks and months went by, she got worse, although she developed a remarkable ability to camouflage her behavior: she happened to be busy at meal times, she had headaches at meal times, she picked at the food on her plate. It was like a giant vacuum cleaner was draining her brain cells and depriving her of the ability to think and act normally. Her sunny disposition turned sullen and moody. She was losing the battle -- worse, she didn't act like she wanted to win.
Rachel had never been skinny, nor was she overweight. Now she was starting to look really "good," Hollywood style. Friends and neighbors began to take notice. "Rachel! You look great!" "Rachel, how did you get so skinny?" The Thin Worshippers heaped on the praise.
Why was this happening? What could we do to reverse the growing momentum?
Anorexia is a type of eating disorder that mainly affects girls and young women. A person with this disorder, according to the U.S. Department of Health and Human Services:
- Refuses to keep a normal body weight
- Extremely afraid of becoming fat
- Believes she's fat even when she's very thin
- Misses three menstrual periods in a row
What causes anorexia? Anorexia is more than a problem with food. It's a way of starving oneself to feel more in control of her life and to ease tension, anger and anxiety that frequently erupts around adolescence. Girls as young as eight or nine can become anorexic. Causes of anorexia may include the following:
- Biology. Genetic factors contribute to the onset of this disorder according to some recent studies
- Culture. The popular culture idealizes extreme thinness as a model of physical beauty.
- Overly permissive or overly controlling parents.
- Perfectionists and Obsessive compulsive behavior frequently characterize anorexics.
- Personal feelings. An anorexic may have poor self-esteem and hate the way she looks, or feel unable to meet pressures from family or social expectations.
- Stressful events or life changes. A new school or new job may trigger anorexia.
- Families. Having a mother or sister with anorexia increases the chances of developing the disorder. Parents who think appearance is important, diet themselves, and criticize their children's bodies are more likely to have a child with anorexia.
What are the signs of anorexia?
- Looks a lot thinner
- Uses extreme measures to lose weight
- Makes herself throw up
- Takes diet pills
- Exercises excessively
- Weighs food and counts calories
- Moves food around plate without eating
- Weighs herself constantly
- Distorted body image; sees herself as fat
- Acts moody or depressed
- Wears baggy clothes to hide appearance
- Doesn't socialize
- Talks about food all the time
- Won't eat in front of others
Anorexia denies the body the nutrition it needs, making it slow down to compensate. Bone loss, dry skin, hair loss, swollen joints, heart palpitations are a few of the symptoms. If effective and timely treatment is not received, the mortality rate is alarmingly high
Rachel had always been popular in school, but by eighth grade her A.D.D. was getting worse and her grades went from passing to failure, in a rapid descent. She started to drift away from her classmates and began to rebel against her Jewish identity. She had lost 20 pounds, from her normal weight of 135 lbs. down to 115. The more we talked, the worse the disorder became. As a family, we were about to enter a five year war, literally battling for Rachel's life.
You can scream at a disorder, but that doesn't make it go away.
You can scream at a disorder, but that doesn't make it go away. Rachel's grandparents, recently deceased, survived the Nazis and their biggest thrill was to feed their grandchildren. Their only granddaughter was now wasting away in the Land of Plenty. Mercifully, they didn't live to see it.
I learned that an "eating disorder" is not about eating, any more than an alcohol problem is about alcohol. The disorder is a refuge, a friend, an all-consuming identity, and a glorious victory over the laws of nature. Rachel chewed gum non-stop, did sit-ups to the brink of exhaustion, cooked gourmet meals for the family without taking a bite, did all of our grocery shopping, took several hot baths daily to warm up, isolated herself in her room, and her mood swung wildly from reasonable to impossible. She started several jobs but would abruptly quit from exhaustion after a few weeks.
We decided to take Rachel, despite her strident protests, to an in-patient residential facility located on a former country estate outside of Philadelphia where she was supposed to stay for several weeks. The in-patient placement is designed to supervise caloric consumption, make sure that the anorexic is not involved in the bulimic practice of vomiting after meals, and provide counseling and therapeutic group activities. We left her in tears, begging us not to leave her.
For the next three days she called us day and night, sobbing and swearing that the program was unbearable. On the fourth day, a car service showed up at our front door. Rachel had exercised her right as an 18-year-old to check herself out, paying a taxi $400 in cash that she had secretly brought with her.
"One thing that really shocked me is that the experts say that it takes about four to seven years to recover from an eating disorder," said Lauren Greenfield, whose documentary film Thin (and book by the same name) chronicles the lives of four women with eating disorders. "Yet, the average insurance policy pays for three weeks of treatment. That's a huge disconnect. That kind of stress took away from the quality of the treatment because they were so worried whether or not they can continue. Some of the girls would be on the phone, begging their insurance carriers for just one more day of treatment."
Rachel was released several times from a hospital after a two or three week stay. She immediately began to deteriorate and return to her disorder upon release from the hospital.
Watching Rachel starve created an ongoing dilemma: Should we encourage her to eat, triggering her anger and denial, and an even more severe round of restriction and isolation? Or should we not intervene, as all the professionals had advised us, because this is "her problem and only she can solve it"?
The tension of seeing Rachel in the kitchen, eating lettuce and diet salad dressing while family members pretended not to watch, was like walking in a mine field. "You don't have a right to do this to yourself, or to us," I would tell her. My words echoed in my head. Do they help? How can I stand by idly and watch? My workday was increasingly consumed by research into finding a solution and going with Rachel to psychologists, psychiatrists, treatment centers and family sessions.
The urge to explain to Rachel the compelling need to eat properly was overwhelming, and every so often I would try to reason with her. "I know you think you're fat, but you must trust everybody when they tell you that you're not!" The problem is that the anorexic looks in the mirror and all she sees is fat, fat, fat. Anorexics have been known to cut a raisin in half, food for two meals. If a person has cancer, depression or any other disease, they'd like to be rid of it. But the anorexic's main fear is being cured!
Rachel's bones rattled beneath her loose-fitting clothes like a museum skeleton hanging to dry in the wind.
Living with Rachel meant not knowing if at any moment she would collapse, have a heart attack, or even, God forbid, die.
Unconditional love is easy to give when things are going well. The Rachel that I unconditionally loved was all but gone, and I wanted to scream, "Eat! Enough! You win! You're ruining our lives too! What gives you the right?"
I prayed for Rachel, but it wasn't working. How could it work if she didn't want it to? I found little cups of yogurt opened with one tiny spoonful missing. Rachel's bones rattled beneath her loose-fitting clothes like a museum skeleton hanging to dry in the wind. How does one pray to bring dry bones back to life?
HOPE AND COURAGE
Hope is a fleeting emotion. I never completely lost it, but at times felt it slipping away like the last warm summer day.
One day my son called from his school in Israel to tell us about an eating disorders program at the New York State Psychiatric Institute. (His friend had been treated for a substance abuse problem in the same program.) This research program was publicly funded and wasn't restricted by insurance company rules.
After a month of seemingly futile attempts to gain admission, Rachel was admitted, a skeletal 65% of her "ideal body weight," dehydrated, and in serious danger.
The hospital research protocol emphasized gaining weight in a strictly controlled environment with the objective of regaining 100% of ideal body weight. Rachel's vegetarian regime was not allowed; the program believed that all restrictive eating habits had to be broken. Rachel hadn't had meat or fish for years, after witnessing chickens being slaughtered on a school outing. I was nervous that she would be out of compliance and be disqualified from the program.
Amazingly, she ate the meat and survived her first major test of recovery. Hope returned like a bird singing on a spring day. She survived the first two weeks of the program, gradually increasing her calories from 1800 to 3000 per day, eventually consuming 4000 per day. A family member or her good friend would visit every day to offer encouragement.
She constantly complained that the other patients picked on her and were reporting her minor infractions to the "authorities;" she was caught chewing gum or throwing unwanted food into the garbage, and became hysterical with anger and resentment. Rachel would lose privileges, like a daily visit to the hospital coffee shop or the enclosed outdoor area. (The locked unit made forays to the outside world impossible without some kind of pass.) The prison walls were closing in. Could a jailbreak be close at hand?
The call came while I was at work. "Mr. Kane? This Is Mrs. N. at the New York State Psychiatric Institute. I just want to tell you that Rachel has signed herself out. Her brother is picking her up. We can only keep her here until after lunch."
I felt like a freight train had flattened me. But I knew I had to think fast and do something. We had about one hour. "Just keep her there as long as you can. I'm on my way over," I responded. My wife and I were determined to keep Rachel in the program at all costs. We didn't want to see her die.
The hospital is about a 40 minute drive from my office. I called my son, Rachel's confidante, from the car. He had been persuaded by Rachel to pick her up. She had already checked out, she told him, and if he didn't come she would just have to find her way home on her own. "Stall her," I told him. I was so nervous that I took the wrong exit and got lost in Newark, before getting back on track. My plan was to get to the hospital before she left and figure out some way to get her to stay.
Rachel was still there when they let me into the locked unit. She was hysterical, desperately shaking and crying. "Don't you see it won't work?! Don't you see it's not for me!?"
No matter how hard she screamed, I wasn't going to blow what may be her last best chance at recovery.
I tried to remain calm and told her and the social worker that we won't take her back home. Refusing to take her back home meant that the hospital would not release Rachel in such an endangered condition without going to court. No matter how hard she screamed, I wasn't going to blow what may be her last best chance at recovery. I left Rachel screaming and shaking in the locked unit.
Miraculously, Rachel recovered after a few days and met a girl that would become her inseparable friend and remains so to this day. She began to see the possibility of completing the program and even to see recovery as a possibility.
A week after the crisis, I received the following letter:
"Dear Daddy: Happy Father's Day. Where do I begin? Thank you so much for being my constant rock for the past month. I know it's been hard on you to make me stay here and watch me struggle, but you made that decision with my best intentions at heart. Looking back, I can appreciate how difficult that must have been for you to leave me here crying. I have come a long way since then, and I wanted to thank you for saving my life that day, by not letting me leave and not giving up on me. But most of all, just for being there whenever I need you, and loving me unconditionally."
A month later, longer than any previous hospital stay, Rachel had gained "leave" privileges and was able to leave the hospital for hours at a time, a major morale boost. After two months, she was allowed to come home for overnight stays. Her release was scheduled to be two weeks away. While it seemed that she had turned a corner, in our family therapy sessions Rachel repeatedly stated that she still felt like an anorexic, had no desire to work or go to school, and had no confidence that she could maintain her progress after her impending discharge from the Psychiatric Institute.
Almost four months have now passed since Rachel came home. The first two weeks were nerve-wracking for all of us, but Rachel soon found an out-patient support team and has consistently made the effort to maintain her weight and her will to tackle life head on. She got a job at Starbucks and works 30 hours a week. The struggle goes on and her mood swings and anorexic thoughts still haunt her, but life is good again and Rachel's smile has returned.
Welcome back Rachel! We missed you so much. To all parents and friends, husbands and boyfriends, sisters and brothers: don't buy into the lie that thin is beautiful. If a woman is starving herself, give her empathy and get her help. Make an appointment with an eating disorder team that includes a therapist, nutritionist and a psychiatrist. There is not a moment to lose.
Click here to read the follow up article, Emerging From Anorexia.
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