60 year battle with Anorexia ends at RR
Lifelong disorder: Woman battles anorexia for decades
BY KATHERINE SPITZ
Knight Ridder Newspapers
AKRON, Ohio - (KRT) - Patricia Burkley, working mother, was efficient in her slow self-destruction. Each morning for years, the now-retired registered nurse woke at 6 a.m., packed lunches, made breakfast for her family. She then did all her housework.
After that, Pat Burkley binge ate for about an hour, "got rid of it" and then went to her second-shift nursing job.
"I got so weary of that," said Burkley, now 65, as she recently recalled her 40-year battle with anorexia.
"I thought to myself, `What am I going to be - an 80-year-old with my head hanging over the toilet?' "
Eating disorder experts say that it's a common - although inaccurate - belief that only girls and young women struggle with anorexia, bulimia and other eating problems. The reality is that there are many women like Burkley - women who develop eating disorders and continue to struggle for decades.
In the past several years, major eating disorder treatment centers have reported sizable increases in the number of women in their 30s, 40s and even older seeking treatment for eating disorders, a fact that has received national attention.
"When (the stories) first hit," it looked like a lot of women came down with eating disorders in their 30s and 40s," said Dr. Susan Ice, medical director of the Renfrew Center in Philadelphia, the largest and oldest free-standing eating disorder treatment center in the nation.
"But that's not true," Ice said. "More likely, the women had `silent,' or subclinical eating problems that finally became apparent, perhaps precipitated by a crisis."
While numbers are far from exact - physicians aren't required to report eating disorders and many sufferers never seek help - the National Association of Anorexia Nervosa and Associated Disorders estimates that 8 million Americans suffer from eating disorders. Most are female. Depending on the disorder, the problem may start anytime from the early teens to the early adult years, Ice said.
The outlook isn't particularly optimistic.
"Only about 40 to 50 percent fully recover. The rest don't," Ice said.
Instead, there can be years - decades - of silent struggle.
Burkley's emotional pain started long before she started starving her body. As a child growing up, she said she had a severely troubled childhood marked by sexual abuse by her alcoholic father, who continued to hurt her long after he became sober.
"I was a very, very angry person," recalled Burkley, whose parents are now deceased.
Burkley, always slim, started worrying about her figure when she went to nursing school in Cleveland. She was on a low-fat diet because of a skin condition and was constantly hungry.
She gained three pounds during her first semester and panicked: At 5 foot 7 inches, she was up to 128 pounds, and she became terrified she would get fat. One day back in school, she ate an entire box of gingersnaps while studying - and then found she could easily make herself vomit.
For the next 40 years, Burkley said she controlled her calorie consumption with a combination of eating and purging. When she tired of the purging, she simply didn't eat. Most of that time, she weighed between 85 and 95 pounds. "I very seldom got up to 90," she said.
She tried to hide her body in bulky clothes.
"You dress in long sleeves; you cover it up," Burkley said.
Burkley's husband, Art, and close friends, tried to help her. As the years went on, her husband grew increasingly concerned. Art Burkley, a now-retired systems analyst at B.F. Goodrich, said he consulted two therapists at two different times, one of whom told him his wife was "too old" to recover.
Her physician couldn't help. There was another doctor who tried to help, too, one of the couple's best friends.
The Burkleys had become close friends with former Akron City Hospital urologist Dr. Jack Summers and his wife, Pat, when they were young adults and neighbors. It is a strong friendship that continues today, despite Summers' relocation to Florida.
"I cannot tell you how many hours I spent trying to talk that woman into realizing she had a problem," said Summers, who continues to do research at Northeastern Ohio Universities College of Medicine.
Summers, also an author of nonfiction and fiction books, recently teamed with Pat Burkley to write a book about her struggles. They plan to self-publish this year, donating any profits to charity.
"I would tell her: `Pat, you're dying right in front of me,'" Summers said. He added that traditionally, medical students have not been well educated in the treatment of eating disorders.
The body is not made to handle decades of disordered eating. Forty years of bingeing and purging took a terrible toll, both physically and emotionally, Pat Burkley said.
The enamel on her teeth eroded. She had stress fractures and problems with her heart, eye and bowels. In addition, Pat Burkley said, her mental state changed - a common problem that occurs with anorexia.
Pat Burkley's parenting skills suffered; she became extremely irritable and less able to accurately perceive everyday life.
"Art would say, `Don't forget the checkbook,' and I'd hear, `You're too stupid to remember the checkbook,'" she said.
The Burkley marriage endured, but with a struggle.
"I never stopped loving her, I never considered an affair," Art Burkley said. "But watching somebody commit suicide slowly - it wasn't fun."
In 1998, Pat Burkley retired and moved to Las Vegas, a place to get more sunshine. The move set in motion a series of fortunate events that finally led to her admission to an eating disorders treatment center.
In Las Vegas, Pat Burkley, a devout Methodist, started visiting a Christian bookstore. Eventually, she started working at the store, and was befriended by another clerk, who also was deeply religious. She confided in the woman, and the woman began gently encouraging her to get help.
Finally, Pat Burkley, in her early 60s, was ready to get well. She also was scared.
"I want to get well, but then who will I be?" she worried. "What will people know me for? What if they see me eat?"
She confronted all those fears - and much more - when she entered Remuda Ranch, the nation's second-largest eating disorders program, on Jan. 25, 2001. The Arizona facility offers traditional eating disorder therapy within a Christian context.
Pat Burkley, who had used prayer for years in her eating struggles, said she felt particularly comfortable in the setting.
But at age 60, she had to get used to being the oldest patient, by far, in the facility.
"There are two ways you can look at it. I looked at it, I was ashamed I had it so long. But people... looked at me with admiration, that I didn't just give up," she said.
Pat Burkley's eight-week stay at Remuda cost about $70,000, which was paid for by her husband's insurance (not all insurance plans will pay.)
First, she had a medical evaluation, and then was introduced to an entirely new way to structure her day. Pat Burkley had to get used to eating six times a day, including many "fear foods," such as sandwiches and fried potatoes.
She was motivated to eat the food because she was given a window of time before she would have to be tube-fed. For eight weeks, a staffer watched her every time she used the bathroom, to make sure she wasn't getting rid of her meals, she said.
Along with new routines for her physical health came an intense focus on her mental health. There were many programs and groups to attend, all with the underlying goal of helping Pat Burkley and other patients begin to address feelings of worthlessness and powerlessness, she said.
She learned that even though she was in her early 60s, she could change her life dramatically.
When she left treatment, she had gained about 20 pounds and weighed about 102 pounds. Though still very underweight for her height, she was on her way to recovery.
In the end, the age of the person with an eating disorder doesn't determine the prognosis, said Ice, of Renfrew.
"If a person really wants to kick an eating disorder, it's possible at any age," she said.
Pat Burkley, who with her husband recently relocated back to Ohio to be closer to family, is now four years into recovery, a process that remains a struggle. "I still get up and say, `I'm so fat today,'" she said.
While Pat Burkley no longer has a scale, she estimates she has gained another 10 pounds.
Her physical health can never be completely recovered, she said. "My body's falling apart."
Emotionally, Pat Burkley said, she has never been better, a fact she credits to her treatment program, spiritual work and an ongoing struggle to maintain changed eating habits. She also takes a prescription antidepressant.
Pat Burkley doesn't miss nursing, saying, "I finally got the job I applied for 14 years ago: grandparent." She and her husband baby-sit every afternoon.
Her marriage has also improved. "It's fantastic," Art Burkley said, with a broad smile.
"It's fun," Pat Burkley said. "We laugh."
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© 2005, Akron Beacon Journal (Akron, Ohio).
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