12 February 2007

An anorexic's story

When Jenny was 14, she offered to keep her mother company on a diet for Lent. When Lent ended, Jenny just kept on dieting. Eventually, she died at the age of 25.

When Jenny was 14, she offered to keep her mother company on a diet for Lent. When Lent ended, Jenny just kept on dieting.

The illness came on with alarming speed. The 1,52 metre-tall American teenager from Denver ate only lettuce and cottage cheese and drank only diet soda. Her weight plummeted from 41 kilograms (90 pounds). She lost interest in her beloved horse and withdrew from other activities. Within two months, she was hospitalised for the first time, and she began a diary, in which she wrote:

"Today I weighed 79-3/8 [pounds]. What a pig."

A struggle of 11 years
With that, Jenny, the middle of five siblings and the valedictorian of her high school, entered the nightmare world of anorexia nervosa, a psychiatric disorder that affects one percent to two percent of girls and young women, causing them to become obsessed with dieting and losing weight.

In Jenny's world, that meant starving herself, making herself throw up and embarking on a relentless exercise schedule, sometimes biking as much as 48 kilometres in a day.

For 11 years, she struggled with the disease, forced to dig up her past in brutal psychotherapy sessions, cycling in and out of treatment facilities, taking medication, undergoing electric shock therapy, and attempting suicide. She was hospitalised 12 times and spent months in eight different psychiatric facilities.

Age: 25, weight: 20 kg
"I am terrified I'm going to kill myself, especially when I give in and eat. My body is in a state of horrible shock, and I don't know how I can control myself and stop self-destructing."

Through it all, Jenny dealt with doctors who charged that she deliberately refused to get well. Some became so frustrated that they resigned from her case. There was even an attempted exorcism and talk of confining her in a state psychiatric hospital.

In 1989, Jenny died at the age of 25. She weighed 20 kilograms and had suffered at different times from osteoporosis, kidney failure, depression and loss of sight.

She tells her story
Throughout her struggle, Jenny kept that diary. Now, 13 years after her death, some of her entries are being published as Slim to None: A Journey through the Wasteland of Anorexia Treatment, which is billed as the "first published journal of a non-surviving anorexic."

Jenny's father, Graydon "Dee" Hubbard, a retired accountant living in Steamboat Springs, Colorado, selected passages from 707 pages of Jenny's journaling, sometimes adding his own entries to make the narrative clearer. He also chose to use the pseudonym Hendricks for Jenny's last name, used Gordon Hendricks for his own name, and changed the real names of most of the other people she talks about in the book.

The cause or causes of Jenny's unrelenting illness were never discovered. Although she was diagnosed variously with anorexia nervosa, post-traumatic stress disorder, depression and compulsive personality disorder, no one ever got to the root of Jenny's nightmare.

Her struggle with the disease
But her agonizing awareness of it was clear.

"I weigh less than I've ever documented (66 pounds) and I must be very ill right now. I'm weak and probably a little insane from starvation."

Many of the professionals treating Jenny threw the onus on her, her father says. "I think most of the treatments stemmed from the conviction that the illness was a choice," Hubbard says. "I believe that a lot of her troubling memories were the product of a very powerful professional just insisting that she come up with something."

"I'm here to work this out. It's my fourth year into this disease and I've gone beyond the initial compulsive crap. I've had it with throwing up, laxatives, the bag of it. I don't intend to do that ever again. I've got to give my body the full chance it deserves."

Roots of disease never found
Various doctors and therapists forced her to wade through the father-daughter relationship, the mother-daughter relationship, speculated that she had an Oedipal complex and even raised the spectre that she had been abused as a younger child. Jenny's mother was told to shun her and her father was told to cancel her insurance policy (he refused).

Full-time inpatient care was equally ineffective, although certain other strategies did work for a while. Lithium helped briefly, as did cortisol inhibitors and electroconvulsive therapy. But none of them could be sustained. A young woman who had had an eating disorder herself befriended Jenny and that seemed to provide relief, until she attempted to perform an exorcism.

"Utter hopelessness. Don't care if I starve myself into oblivion because I'm sceptical getting well is going to be good. I cannot fathom going home again, much less being on my own."

Treatment today
Treatment has come a long way since those days, says Craig Johnson, president of the National Eating Disorders Association and director of the eating disorders program at Laureate Psychiatric Hospital in Tulsa, Okla. The medications available now are much more advanced, and treatment as a whole proceeds more slowly so as not to overwhelm the patient, he adds.

"Although it's a very difficult illness, upwards of 75 percent of patients that develop anorexia and bulimia [a related disorder that involves binging and purging], will fully recover from the illness," Johnson says.

Highest death rate
Still, the condition has the highest death rate of all psychiatric disorders, according to the American National Eating Disorders Association. Up to 20 percent of anorexics starve themselves to death.

"I don't think anything can help me. I'm beyond caring, so lonely and hopeless. I feel guilty at eating one-half an orange and bran and some lettuce for dinner. I want to get it out of me. I AM DEAD INSIDE."

Non-intervention pact sealed
In the spring of 1989, Jenny weighed 24 kilograms, was almost blind and couldn't walk on her own. She asked her father to read her journals and publish her story, and then she received last rites.

"We sort of had this non-intervention pact," Hubbard says of her decision. "I was persuaded that no one could really help Jenny."

But she did rebound briefly, and ended up at a residential treatment facility, which, her father says, gave him renewed hope. Community Care was located in a converted home in a residential area of south Denver and did not subscribe to the heavily regimented programmes Jenny had previously gone through. The staff did not try to control weight or eating, and there was an emphasis on doing things together outside the home.

Ultimately, though, Community Care came too late.

Jenny dies in her sleep
On Dec. 17, 1989, Jenny had a nice lunch with her mother and at night fixed herself a meal of cottage cheese and a pear. After eating her meal alone, she used the banister to pull her weakened body up to her second-floor room. She died that night in her sleep.

When Jenny's father went to pick up her few belongings, he saw that Jenny's rubber plant, once dull and dying, had revived during her brief stay at Community Care and was now lustrous, green and shining.

"I had this tremendous comparison going on in my mind," Hubbard says. "Her plant was doing well. She was doing well. I always wonder if she had gotten in a little sooner, if it would have helped. I suspect not, but it's nice to think maybe it might have." – (HealthScout News)


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