Another Mother's Story Family & Friends Spokan, WA

In January 1999, Kelsey, my 10-year old daughter, asked if she could go to a weight loss camp in the summer instead of her usual camp. She had been cruising the net and had one all picked out. Her father and I reasoned that even though our daughter wasn't really overweight, if the camp would make her feel better about herself, why not? Since it was located in La Jolla, near her grandparents, we agreed that she could go. We contacted the camp, sent in the money, and put that little "to do" out of our minds. With that seemingly innocent request and unbeknownst to us, Kelsey had taken the first few steps on what would become a single-minded and harrowing journey toward death by self-imposed starvation.

She began to diet and exercise. It all seemed so innocent that winter. We approved; after all, she could stand to lose a little weight, right? Slowly, so slowly that we never noticed it, she cut many foods, then whole food groups, from her diet. A few months passed. She stopped eating with us, saying that she'd already eaten or would eat later. When we forced her to eat dinner with us, she was often sullen and simply pushed her food around on her plate.

People from all parts of her life began to comment on her new thinness. Kelsey was thrilled and loved the attention it brought her. By then, her dad and I were trying to tempt her with foods she once loved. We were beginning to be a little suspicious that this new eating pattern might not be good for Kelsey. Then, in the late spring, our housekeepers pulled me off to the side and whispered, "She's getting *VERY* thin, don't you think?" I took a new look at her and felt something inside of my heart tear. She was, indeed, far too thin. I took her to the doctor, who talked with her at length about proper nutrition and made a deal with her regarding what she would eat each day. I really thought Kelsey would uphold her end of the deal. She's that sort of girl.

However, the weight continued to come off, albeit a little more slowly. I noticed she was cold all the time, even in the warmth of late spring in California, and I bought her warmer clothes. She seemed to be weighing herself obsessively so I took away her scale. She didn't seem to read anymore, an odd thing since she'd always been a voracious reader so I bought new books for her, new magazines. She accepted them with a smile but they sat, I saw, untouched. She was tired all the time but I noticed she exercised until she was ragged and shaking, so her dad and I forbid her any exercise unless she ate first. None of that helped curb her decline.

At the beginning of June 1999, I called her camp and explained to them that she no longer needed to lose weight and asked if, perhaps, she should not come. They were very reassuring and convinced me that they dealt with all kinds of kids, all sorts of eating disorders. They would assign her to a counselor well versed in her problems and she would be with other kids who were not eating enough. As long as she ate 1200 calories a day, they told me, she would be fine in their program. Since I was still very innocent with regard to Kelsey's problem, I agreed to their plan with a sense of profound relief that someone who knew about this would be working with her. I had no idea that, by then, she was eating only 500 calories a day or less. (She would eventually, at her worst, fall to eating less than 300 calories a day, each one miserly hoarded and counted, each one consumed only grudgingly.) I had no clue that she was edging closer to dying with each day, with each set of sit-ups.

Near the end of June we sent her off to visit her grandparents for a week. We figured that if she didn't eat while with them, she wouldn't actually die. It was just one week, right? They would drop her off at camp at the end of the week. We knew the people at her camp would manage her food intake; they were professionals, after all.

Two days after she began camp they called us to tell us that she wasn't eating at all and they couldn't keep her there if she didn't begin to eat. A day later they called to ask us to make arrangements to fly her home; she was probably anorexic, they said, and definitely very ill. We didn't know anything at all about "anorexia" and it scared us badly.

Kelsey was sent home the Friday, July 2nd. The week before we had learned that in August we would be moving to Spokane. Between the end of June, when we learned of the move, and August 10th, when we actually arrived in Spokane, our new home, we managed two very long weekends in Spokane, weekends we needed to devote single-mindedly to finding and buying an appropriate house. Kelsey was seeing an eating disorders specialist in our Northern California town during this period and it was during this hectic, wild, worried time, that we finally got a diagnosis about Kelsey's condition. She was definitely, frighteningly, intently, anorexic.

Three days after we moved Spokane, on August 13th, Kelsey turned 11. On August 15th she was admitted into the pediatric intensive care unit at a local hospital. Kelsey, our incredibly determined daughter had managed to lose 56 pounds in about six months, almost half her body weight.

When she was admitted to the hospital, her digestive system was not working at all. Her heart was beating irregularly. Her brain had shrunk. Her core body temperature was way too low. The hair on her head was coming out in handfuls and she was growing lanugo on her abdomen. She was yellow. We had her admitted over her vehement protests. She still wanted to lose more weight. Her doctor told us that she was only a handful of days away from death.

I held her as she cried weakly, like the scared little girl she was, when they pushed the feeding tube down through her nose, through her stomach, and into her intestines. Her dad and I spent night after night, day after day, in her hospital room. We flew a procession of relatives and friends to Spokane, to care for our two-year old son, so we could spend time with Kelsey. We watched her fight her doctors over eating. We heard her scream at them, hating them for wanting to "make her fat". She screamed at us too, for the same reason. It was an exhausting, painful, ragged, hurting, confusing time for us all.

The doctor in charge of managing her anorexia, the renowned Dr. Jim States, took it all in stride. Her wonderful counselor, Lisa Middaugh, came daily, as did the nutritionist. The fourth member of the team was another counselor, Rick Graff, who worked with her dad and me, trying to keep us somewhat balanced in the midst of the horror that had overshadowed our lives. We needed all this help, we were told, to get through the crises and on into the healing beyond. This marvelous team approach is a central component of the approach Dr. States uses in combating this disease.

She was in the ICU for more than two weeks, then in the regular pediatrics unit for another couple weeks. Throughout that time, her doctors, nutritionist, and counselors, the "team" that was charged with her care, worked tirelessly to insure her survival. Through that time we slowly grew accustomed to the idea of having a critically ill child. We slowly began to see some light beyond the dark clouds of our worst fears. Dr. States and his team would save our child.

She was released from the hospital. A couple weeks later the feeding tube was removed. She began 6th grade the day after it came out. Though it was a few weeks after everyone else went back to school, and new school to boot, she was glad to be there, glad to be doing something "normal".

That was in late September. Since then, she's had the feeding tube replaced and removed again, twice. We've learned to not soar too high when she's doing well and not to drop too low when she's sinking. We've learned that this is a family disease and that Kelsey's run with the anorexia-demons is only the outward manifestation of the ills unvoiced inside our family. We've learned that we all love each other and there's nothing we cannot get through, given patience and honesty and a high tolerance for emotional and physical pain.

She's doing better now, in these last few days before Christmas. A couple of days ago she confessed to me in a small voice that she was craving just a taste of fudge, just a sliver.

"It has been so long," she said, sounding like a sad child, "since I've had any chocolate at all. Since last Christmas, I think. A year ago."

"Then have some," I told her, my heart breaking for the long, self-imposed, sterile austerity of her diet. No chocolate? She's only just eleven. She's missed a whole year's worth of chocolate bunnies and birthday cakes with chocolate icing and late night hot cocoa and staying up too late with her girlfriends to whisper and eat M&M's.

"Maybe I will," she answered, surprising me. "Maybe I will."


Kelsey will recover. We grieve for those who do not, though, and offer their parents our most profound condolences. To those just beginning the journey through anorexia-hell with your child, I offer my deep and tender hope that your daughter someday craves `just a sliver of fudge'.

We're all pretty worn out, here in Spokane Washington, in the last few days of 1999. We're looking forward to health and quiet pleasures in the year to come. I wish them to you, too.

Be well.
Barbara, Kelsey's mother