Part 1: Heather Henderson's story

Fight against eating disorders continues after death

This article submitted by Michael Jacobson on 1/31/01.

Heather Henderson She was intelligent, intense, and insightful. She was driven, dedicated, and demanding. She was poised and articulate, serious and successful, organized and outgoing. She also was stubborn and skilled at hiding her disease.

She strived to help others avoid the pitfalls that haunted her and fought the cultural messages that create a mindset where eating disorders can thrive.

Heather Henderson's heart gave out at the age of 27. She fell victim to an eating disorder that she had battled - first just personally and later professionally, too - for 11 years.

The Paynesville native collapsed in the kitchen of her Duluth home last September. The likely cause of death was heart failure, brought on by her decade-long struggle with anorexia nervosa and bulimia nervosa.

The timing of her death could barely have been worse for the Bill and Kris Henderson family. Heather's older sister, Heidi, got married three days later. Heather was to have been the maid of honor. Younger sister Karen was an attendant.

In the midst of sorrow, the family - Bill, Kris, Heidi and her husband, Lee, Karen, and Heather's fiance, Sean - came to two decisions: to go forward with the wedding and to use Heather's death to fight the very thing that killed her.

"We decided right away," said her mother Kris. "We weren't going to hide the cause of her death from anybody. If we could help anybody by being open about it, we would."

"The decisions," added Bill, "were easy to make because we shared a very strong feeling that that's what Heather would want."

Going public meant more than mentioning her cause of death in the obituary. In October, write-ups of Heather's struggle with the disease, the work she did in her professional life to combat it, and her fight against the culture that makes it possible appeared in both the Duluth News Tribune and the St. Paul Pioneer Press.

The page-and-a-half spread in a Sunday edition of the Pioneer Press covered the front page of a section, included four pictures and a box, and ran a couple thousand words, extremely lengthy for a daily newspaper feature.

A shorter op-ed piece about Heather ran in the Minneapolis Star Tribune.

And, so, while Heather is at peace, released from the disease that gripped her for so many years, her battle against that disease continues. And she continues to have impact. Letters to the Editor at the Pioneer Press and e-mails to Dads and Daughters (DADs) - the nonprofit organization where Heather served for two years as associate director - have flooded in from colleagues, writers, researchers, friends, and eating disorder sufferers.

National leaders in gender justice have sent condolences, according to Joe Kelly, DADs' executive director. "(Heather) made an enormous contribution to gender justice in this entire country and around the world," Kelly said at her October memorial service at Nordland Lutheran Church. "Her loss is immeasurable in that cause."

Bill and Kris hope that sharing Heather's life and the facts about her death will continue the struggle for two of her goals: to educate children and adults about eating disorders in order to improve awareness of the disease and to expand insurance coverage and establish better access to treatment programs.

"If those things can be done," said Kris, "then we're helping other people through Heather's death."

Eating disorder facts

Ten pounds for prom
Heather later wrote about her first diet, which she embarked upon to lose 10 pounds for prom. After seeing her prom dress a week before the event, she recalled her boyfriend saying to her, "Yeah, you'll look good, but you'd look great if you lost 10 pounds."

"The responses that flew through my startled mind were so chaotic and numerous that, despite remembering the incident clearly, I can't exactly recall my response," she wrote. "I only know that within a few minutes I had risen to his challenge, thinking: 'All right, I'll show you. I will lose 10 pounds by prom.'

"And with that," she continued, "I embarked on the first diet of my life - me, a three-sport athlete who had always taken for granted that my body was just fine. Now I worried that I'd been fat my whole life and no one had bothered to tell me until now. I was so ashamed."

Heather started picking at her food, and forcing herself to vomit after meals. Her parents tried to get her in a treatment program in St. Cloud a couple months later, but were told that Heather wasn't sick enough.

By her junior year, she was suffering fainting spells and had an irregular heartbeat. By the time she finished high school, she was getting individual counseling to help her cope with her eating disorder, paid for out of pocket.

Her disease followed a cycle, said Bill. For a time, it would be better and Heather would be more open about it, and then it would worsen and she would tend to keep it to herself. "If she was comfortable talking about it, then she was pretty comfortable with where she was at," said Bill.

"She would talk about her eating disorder only if I asked," Heidi told the Pioneer Press. "She was very afraid of worrying us. It was difficult to get her to open up."

After two years at Hamline University in St. Paul, Heather attended a month-long outpatient treatment program in the Twin Cities in the summer. Then she transferred to the University of Minnesota-Morris, where she completed her English degree and concentrated on journalism and women's studies.

While at Morris, Heather served as an assistant coach on the high school gymnastics team. Heather excelled in the sport herself in high school: being on the varsity six years, holding the school record in the balance beam, and serving as team captain.

"She was a fabulous coach," recalled Ann Michels, Morris' head coach at the time and Heather's close friend. "She was full of hugs and kind words, and Heather was absolutely the very first person to tell every girl just how beautiful they were."

For a couple summers during college, she worked as a reporter for the Paynesville Press, and after graduation she started working for a suburban newspaper chain. This led to magazine work, first as editor of Lavender magazine in the Twin Cities, and then with New Moon Publishing in Duluth.

Hear Us Emerging Sisters
Nearly three years ago, Heather took a job as circulation manager with New Moon for Girls and 18 months later became the editor in chief of HUES: Hear Us Emerging Sisters. Here, her crusade for gender rights and against Barbie-doll stereotypes of women flourished. HUES was a multicultural feminist magazine aimed at breaking the stereotypes perpetrated in the mass media and especially in women's fashion magazines.

Like New Moon for Girls, HUES accepted no advertising, which meant no clothes, make-up, or diet ads, but also led to a scant bottom line.

When it ceased publication seven months after she became editor, Heather took a job with DADs, which was in its infancy. Its founder was inspired to start the nonprofit organization when his nine-year-old daughter asked him, "Am I fat?"

Heather poured her talents and skills into the new organization. She developed a 600-page website, she made contacts around the country, and she did grant writing and fund raising.

"Sometimes working with Heather was just plain exhausting because she never seemed to stop," said New Moon publisher Nancy Gruver. "This was a new thing for me because I'm usually the one who exhausted everyone else."

Heather read extensively, slept little, rode a motorcycle, and enjoyed music, the arts, cats and dogs, all types of skiing, kick boxing, all kinds of outdoor recreation, playing pool, and her work.

"That was one of her goals," explained her father, "to help other people so they wouldn't fall into the same trap she did. To change things."

Tragic irony
Things in Duluth seemed to be going extremely well for Heather. She had met and fallen madly in love with Sean in 1999. They were engaged last June, and planned to be married in April 2001.

But as the summer progressed, Heather started losing weight. "She just felt hopeless," Heidi told the Pioneer Press. "She didn't feel she could get over this. It really scared me. She said she had lows before, but this time it was different. Her eating disorder was so big, she said, that she couldn't see around it, over it, or through it. She said things had gone out of her control."

Numerous factors led Heather to her disease, said Bill, but as it progressed a strange symbiotic relationship developed. "This was the one thing she could rely on," said Bill. "The one thing she felt she could control."

But the disease gained superiority. "In the end, she didn't have any control of it," he said. "She couldn't turn it on or off."

Over the years, she had sought counseling, taken various anti-depressant medications, attempted to get specialized treatment on numerous occasions, and tried to participate in various support groups.

Heather was on a new anti-depressant medicine last summer, and seeing a doctor for side effects caused by her eating disorder. She had made an appointment to be evaluated for a treatment program, but didn't live to keep it.

Her parents, who only saw her for short periods on weekends, said it was hard to judge how she was doing with her eating disorder. "I just had a gut feeling that she wasn't doing too well," said Kris. "She looked thin to me."

"She felt like a failure when she started going downhill," Kris added. "She felt like it would disappoint us and she didn't want to worry us."

And, therefore, she kept it to herself. Her death is tragically ironic, coming at the very hands of the disease that spurred her to fight so hard. "She was so willing to help others when she couldn't help herself," said Kris.

Heather may have lost her individual battle with her eating disorder, but her battle against the causes of the disease continues as her family takes her struggle to the public.

A memorial fund in Heather's name has been established at DADs to continue the fight against eating disorders. The Heather Henderson Memorial Fund can be contacted by mail at: Dads and Daughters, Box 3458, Duluth, MN, 55803; or by e-mail at:

(Heather's struggle for better medical coverage of eating disorders and for greater access to treatments will be examined next week.)

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