Out a of mother's grief comes a documentary to educate others about the deadly mental illness of eating disorders

From The New York Times:

Andrew Arvin sits on a beige couch in a nondescript room, a fruit still-life partly visible on the wall behind him, twisting his fingers while, off-camera, an unseen interviewer prompts him to talk about his sister, Melissa, who died last year at the age of 19 after a long battle with bulimia.

“There was no food in the house,” he says, looking off to the side as his eyes fill. “If I went out with friends, I could not bring leftovers home because they would be gone by the next morning.”

Once, he explains, in the middle of a bitterly cold night, he looked out the window and saw Melissa (pictured) on the curb, going through the garbage. “I went outside and I yelled her name,” he recounts in the interview, his voice breaking. “Just the way she looked back at me — it was so empty, vacant. It was a deer in the headlights, but that doesn’t even explain it.”

It is a hard scene for anyone to watch, but even more so for the film’s producer — Judy Avrin, Melissa’s mother, who decided to make a documentary about her daughter’s life and, ultimately, her death.

People deal with grief in their own ways, and those who have been spared the loss of a daughter or a son can only imagine how they would choose to try to cope. For Ms. Avrin, coping meant confronting her anguish and trying to make something good come out of it.

The idea for a film didn’t occur to her immediately. In the weeks following Melissa’s death, Ms. Avrin mostly avoided her daughter’s bedroom, and tried to resume some semblance of normalcy, going back to work three days a week as the coordinator for a consortium of academic libraries in New Jersey. But one day she sat down to read Melissa’s leather-bound journal.

Someday ...

I’ll eat breakfast.

I’ll keep a job for more than 3 weeks.

I’ll have a boyfriend for more than 10 days.

I’ll love someone.

I’ll travel wherever I want.

I’ll make my family proud.

I’ll make a movie that changes lives.

The film, called “Someday Melissa” and now in the editing stages, has become for Ms. Avrin salve, distraction and cause — a way to get the word out to other families grappling with eating disorders that they are not alone; to sound the alarm that eating disorders have the highest mortality rate of any mental illness; to help make sense of the senseless event that was losing her teenage daughter.

“I kept saying, ‘This is an amazing way for me to channel my grief,’ ” Ms. Avrin said. “But it also allowed me to put off grieving.”

Ms. Avrin, 56, got the idea for the film from one of Melissa’s therapists, Danna Markson, who introduced her to Jeffrey Cobelli, 27, a filmmaker. Over the last several months of working on the project, Ms. Avrin has come to know more than she ever intended to about eating disorders — how their seriousness has been underestimated, their treatment underinsured, their deaths underreported.

The process hasn’t been easy, and some, like her ex-husband, initially questioned the impulse to do it at all. Melissa’s best friend since first grade, Nicole Kendrick, who also suffers from an eating disorder, said she was incredulous when she first learned that Ms. Avrin was making the film. “I thought she was crazy,” Ms. Kendrick said. “I guess I didn’t realize how deep a mother’s love can run.”

But Ms. Avrin said that making the film has been easier than doing nothing at all. “I’ve never once thought this was more than I could bear,” she said, in an interview at her home in Totowa, N.J. “If anything, the more I continue, the more I know it’s the right thing to do.”

The difficulty of reliving her daughter’s decline has been mitigated by the public response. “Sometimes I think: ‘I’m a suburban mom. Who am I to think I could make a difference in the world?’ ” Ms. Avrin said. “But then I read the messages that keep coming in from people I know and people I don’t know who say Melissa’s story has motivated them to fight one more day.”

On Melissa’s Facebook page and on the film’s Web site — somedaymelissa.com — Ms. Avrin continues to get feedback. “Thank you,” says one entry posted on the Web site’s guestbook page. “This could save one person’s life. That life may be mine.”

Ms. Avrin and Mr. Cobelli have interviewed Melissa’s family members, doctors and friends, along with prominent experts in the field, like Dr. Thomas R. Insel, the director of the National Institute of Mental Health; and Dr. B. Timothy Walsh, the founding director of the Eating Disorders Research Unit at the New York State Psychiatric Institute, and Dr. Evelyn Attia, the director of the Columbia Center for Eating Disorders, both at Columbia University Medical Center.

“I get a lot of requests, but there was something about this one I thought was particularly striking,” said Dr. Insel of the mental health institute. “I wanted to hear more of the story.”

“It was such an extraordinary expression of love,” he said, “a powerful way of honoring and remembering the daughter she lost.”

Although those closest to Melissa agreed to be interviewed for the film, participating wasn’t easy. William Avrin, Melissa’s father, said that he might have preferred to keep his experience to himself and that he was in no hurry to revisit his memories of Melissa. “I have a hole in my heart and it will be there forever,” he said in a telephone interview. “I don’t really try to describe what it’s like to lose a child.”

But he felt he had to do it for the film. “Clearly, Judy’s a champion of this project,” he said. “I’m a little bit more personal and inward. I’m still struggling with the whole thing. This is her way of dealing with it, and I respect that.”

In the documentary interview, filmed at his home in Hamburg, N.J., Mr. Avrin visibly struggles to describe what it was like to be thousands of miles away in Japan on business when he found out his daughter had died. At first he appears almost devoid of emotion, delivering his words in flat, deliberative sentences as he sits in a blue button-down shirt in front of his fireplace mantel. But then you can see tears trickling down into his salt-and-pepper mustache. “What was I thinking?” he says, repeating the question. “I was thinking my daughter is dead. That’s not supposed to happen. I couldn’t believe it. I didn’t — didn’t know what to think. I was in shock.”

Upon returning from Japan, Mr. Avrin decided not to view his daughter’s body. “Judy thought it would be better if I didn’t,” he said, “that I’d remember her like the last time that I saw her.”

Melissa died on May 6, 2009. Cause of death: heart attack due to complications from an eating disorder. Just a few days before, Melissa learned she had been admitted to Emerson College. The official letter of acceptance arrived a week after she died and sits unopened.

Melissa’s brother, Andrew, who is completing his Master of Science degree in engineering, said he believes the documentary has become essential to his mother’s emotional resilience. “It’s the only way she knows how to move forward,” he said.

At the same time, Andrew said he worried that the documentary would ultimately prove to be just a Band-Aid, postponing the heartbreak that is bound to rear its head when the film is completed. “The trick becomes moving forward with life but not letting everything this project is fill the void completely,” he said, “so the second this project finishes, you don’t crash.”

To be sure, Ms. Avrin doesn’t always hold it together. She did not conduct the interviews with her ex-husband or with her son (her collaborator, Mr. Cobelli, did). “We would have just sat there and cried,” she said.

In the interviews she did do, there have been times when she has broken down during or afterward. In concluding her discussion with Dr. Leslie Sanders, one of Melissa’s doctors, for example, Ms. Avrin starts to cry, and the cameras keep rolling. “I still remember being in your office and — I think her potassium was off — and you said, ‘I’ll be your quarterback,’ ” Ms. Avrin tells Dr. Sanders. “I didn’t know who to turn to next and I felt like I was in such good hands with you.”

Dr. Sanders responds: “I think what I remember about that first visit is just being struck at how little her life had become — I think at that point she was barely in school — and how much she was struggling, not just physically, I think physically was the least of it, but just emotionally and how we needed to do something intensive, and quickly, to get her life back.”

BORN Dec. 21, 1989, Melissa seemed in her early years to be a happy little girl. Her family lived in Wayne, N.J., and then in Pine Brook, N.J., spending two years in Coral Gables, Fla., in between, where Mr. Avrin was transferred for his work with a specialty chemical company. Melissa did well in school — producing A’s and short stories.

But at age 13, thing started to change. Melissa’s mood darkened; she didn’t want to go to school or do extracurricular activities. She developed stomach problems and constipation. Ms. Avrin took her to a pediatric gastroenterologist who said Melissa probably had an eating disorder. “I reacted the way most parents do: ‘That’s not possible,’ ” Ms. Avrin said. “We didn’t go back to him.”

In the early stages, the Avrins did not really see what was going on, in part because Melissa wasn’t visibly underweight, in part because they didn’t want to. But clues started to show up that were too stark to ignore — logs of cookie dough that disappeared from the freezer along with whole boxes of cookies from the cabinet. Empty pizza boxes. “I found containers with chewed and spit-out food and I’d never heard of that before,” Ms. Avrin tells Dr. Sanders during their filmed interview. “Is that very common?”

Ms. Avrin wrapped the fridge in locks and chains, hid her purse and made sure never to leave money lying around. “It didn’t have to be good junk food — if she wanted to go on a binge, it could be a dozen eggs,” Ms. Avrin said of Melissa. “Anything that wasn’t nailed down, she would eat.”

Ms. Kendrick, in her own interview for the film, alternates between smiling recollections of her childhood friend and sad eyes as she recalls Melissa’s downward spiral. “People who knew her in the last two years never really saw who she really was,” she says. “She was so energetic and funny and just ridiculous but not, like, in an obnoxious way. And then, as she started to worry about what other people thought, that’s when it started to be in more of an attention-getting way. When things got really bad, that kind of all just slowly disappeared and it just became very monotone — down. And we didn’t really see that energetic, fun Melissa anymore.”

Eventually, Melissa was sent away for professional help against her will and thus began a series of programs over the next few years that had varying degrees of success. It wasn’t until Melissa’s third round of in-patient treatment — when she and other young women testified about their eating disorders in front of their families — that her father began to fully understand. “I really said, ‘Wow this is almost like heroin addiction,’ ” he says in his film interview. “They need to purge because it makes them feel high and it’s something they need to do. I never appreciated that.”

In the course of making the film, Ms. Avrin has become something of a public service announcement on eating disorders. She was a featured speaker last October at the first walk to raise money for the National Eating Disorders Association. At its benefit dinner in March in New York, the evening opened with a clip from Ms. Avrin’s film. She is due to be in Washington in late April to lobby Congress as part of an Eating Disorders Coalition.

She said she is happy to play the role of advocate, to help try to remove the stigma that still cloaks eating disorders and keeps people from acknowledging the disease as the cause of death in obituaries. “I want it to come out of the shadows,” Ms. Avrin said. “I want people to talk about it, for people to get treatment faster, to reach doctors on the front lines. I want parents to open their eyes and not be swayed by being glad that their kid fits into size 4 jeans — to stop focusing on looks.”

Ms. Avrin is aiming to finish her documentary project by June, in time for summer film festival deadlines, and she said she is determined to get theatrical distribution. It would seem the ultimate act of acceptance. Yet in her film interview with Dr. Sanders, Ms. Avrin sounds like a mother still wrestling with remnants of denial.

“I’ve always been the glass half-full — I’ve always been an optimist,” she says, reaching under her eyeglasses to wipe away tears. “I always believed that she really would be somebody who could recover, even though, looking back, I realized the odds were stacked against her because of the level of her illness.”

“But I never lost hope and, you know,” she adds, “I still believe that she could have beaten it.”