By Kathy Benn
Two years ago, on a summer Sunday night at about 10 p.m., I found my daughter's body in her bedroom. She had gone up to her room to read and I was sitting at the kitchen table when I heard a strange sigh from Shel's bedroom. I thought she was on the phone and someone had just told her something painfully sad. It continued in this strange way that I can never explain, except that it trailed off to be almost vapor-like. I said, "Oh my God, that's Shel." I ran to her room and tried to do CPR, while my husband called 911.
Her eyes were fixed upward and her hands were curled in toward her body and her feet were strangely curled. She looked as if she'd had a seizure, and she was turning blue. The EMTs injected her with adrenaline and used the paddles on her heart, but she was completely unresponsive. At the hospital, they worked on her for almost two hours before they told us there was nothing they could do.
The autopsy found that she had brain swelling that caused something like a stroke. The doctors said she died due to an electrolyte imbalance as the result of bulimia. People at the National Eating Disorders Association have told me that she's the first person they've seen whose autopsy directly attributes the death to an eating disorder, instead of just saying something like heart failure and not even mentioning anorexia or bulimia.
Shelby's death was the result of things that had been happening to my little girl since she was in fifth grade. But I had never had anybody to help me see where things were going until she was already terribly, terribly sick.
By fifth grade, Shel had pretty much fully developed, and she was horribly uncomfortable with that. She'd look at pictures and tell me "I look like an ogre." I'd catch her showering in her bathing suit and not realize that this was a little girl who was so ill at ease with her body that she couldn't look at herself naked.
In her early teens, Shel was "discovered" by Warner Brothers Records. She had a beautiful singing voice, and what started out as playing around with a karaoke machine turned into recording sessions and demo tapes and then a multialbum contract at the age of 14.
She traveled all over the world, and I went with her, but I worried about how she almost seemed compelled to perform. I later learned that pleasing others is a big part of the picture for people who develop eating disorders. In fact, after her death I found that she'd been marking up a book of mine, the Eating Disorders Sourcebook, underlining things like "desire for respect and admiration," "need for escape and a safe place to go," and "lack of trust in self and in others."
As Shelby got more involved with music, she started to wear only flannel shirts and baggy pants. We interpreted it as Shel dressing "grunge," because the Seattle sound was big in the music industry then. We didn't make the connection that she was hiding under her clothes.
Changes in Behavior
Then she started spending much more time by herself, and we noticed that she would leave the dinner table a lot. It became apparent that she was very uncomfortable staying at the table, and when we tried to keep her from leaving, she took to mincing her food, cutting and cutting and cutting it, and her posture became peculiar. She was almost acting like a squirrel at the table.
Then at Easter time in 2001, I noticed bright red splatters all over the toilet bowl in her bathroom. I recognized the color of the Swedish fish she'd gotten in her Easter basket. I spoke to her about it, and she got so angry that she didn't speak to me for a few days. Then she came to me in the kitchen in tears, and said, "Mom, I didn't want to admit that this was going on. I thought when you pointed the finger at me about the throwing up that I would just stop, and I can't and I don't know what to do." And she just sobbed. We found out that Shelby had gotten down to 100 pounds and was throwing up as much as 14 times a day.
We went to therapists, nutritionists, medical doctors, everything. I stayed at home with Shelby, who regularly had to eat seven times a day just to make sure she got a quarter cup of something that she wouldn't throw up. My life revolved around trying to make food she approved of, and sit with her while she ate it and for the next half hour so she couldn't escape to purge.
About 10 months into her treatment, I found bottles of old, rotting vomit in her room and discovered that she'd perfected throwing up into Snapple bottles. She'd grown afraid that we'd hear her flushing the toilet when she vomited, and she'd plugged up bathtub and sink drains when she threw up there.
But when I showed her the containers, she said, "I don't know where that came from." At the time I yelled at her, "Don't lie to me!" But now I believe she really didn't know what had happened, that her "real" self didn't understand what she was doing.
There's a rug in the basement that has a permanent mold stain from vomit. All these things were building up, I think, from the time she was about 11 years old, and I didn't understand what I was seeing enough to get her help until it was vomit splatters and dangerous weight loss. There has to be a way to do this better, for other girls.
Over those two years, we did everything we could to get treatment for Shelby, and we found out just how hard it is to recover from an eating disorder. In July of 2001, I had been diagnosed with breast cancer, and it became startlingly clear to our family that if you have an understood, and accepted, and government-funded illness, you'll go into a treatment system where there are standards, protocols, staging -- a network of how you need to be handled to have the most effective outcomes. Shel did not have that opportunity.
Parents need to know what to look for, to realize that things like what we were seeing with Shelby early on aren't just "girlie behaviors," but can be early signs of a seriously unsettled individual who needs help. And people need to understand that with eating disorders, you can't separate the mental self from the physical self. There needs to be parity of treatment to allow them to have any hope of recovery.
Published on Aug. 11, 2005.