I live in New Jersey but I was lucky. Although I lost power and electricity for a week after hurricane Sandy, I was spared the devastation that many coastal communities suffered and will be dealing with for a long time to come.
A few days after the storm hit, still without heat and electricity, I decided to drive south to stay with my brother and his family in Charlottesville, VA. Before backing out of my driveway, I emailed NEDA Board Member Robbie Munn, who also lives in Charlottesville, to tell her I would be in town. I’ve had the privilege of getting to know her over the past few years and I had just seen her several weeks earlier at the annual NEDA Conference in St. Petersburg, FL. She said o let her know the next time I came down to VA. Before I was even off my street my cell phone rang. It was Robbie calling to tell me that the Charlottesville NEDA Walk was going to be two days later. Would I consider coming? She didn’t have to ask twice.
St. Petersburg was the third NEDA conference that I’ve attended since Melissa died and each year feels different. In 2010 it was in Brooklyn, close enough to where I live in New Jersey that I could attend each day but return to the cocoon of my house each night. It was overwhelming at times, but I felt the support of NEDA members as well as that of other families and professionals I had started to meet while filming Someday Melissa. I was honored to be asked to participate in the first roundtable discussion for families who have lost someone to ED and over the ensuing months we worked together to create the Loss Support Network.
In the year that followed I poured my grief into finishing the film as well as forming a 501(c)3 non-profit organization, Someday Melissa, Inc., to fulfill the mission of raising awareness of eating disorders and the importance of early treatment. It was what I needed to do to help give some meaning to losing Melissa. I was proud when Someday Melissa became a member of the NEDA Network, a collaboration between NEDA and like minded organizations across the country.
Last October, with the film completed, I flew to Los Angeles for the 2011 NEDA Conference. It was a powerful experience, meeting families, researchers and clinicians. I just re-read the blog post I wrote last year and it still fills me with wonder that Melissa’s story is having such an impact.
In the following months I began speaking at screenings of Someday Melissa: at colleges and high schools, community screenings and treatment centers. We created a Host a Screening program and during NEDAwareness Week alone there were dozens of screenings across the country. With each date we added to the calendar, I felt Melissa’s impact.
At last month’s conference in Florida we were an exhibitor for the second year and there were more familiar faces but so many new ones. I spoke with clinicians in private practice and from treatment centers. I spoke to researchers and educators. I spoke to families and people still struggling. They all thanked me for sharing Melissa’s story, that it was making a difference. That it was helping to raise awareness and provide hope.
Two weeks later I found myself at the NEDA Walk on the beautiful campus of the University of Virginia. I was honored when Robbie asked me to say a few words. I told the crowd that I had blown in on the winds of Sandy and that they had actually blown me home. You see, I grew up in Charlottesville. My father was a professor at the university and some of my earliest memories are of the beautiful campus that Thomas Jefferson created. I remember being a young girl dreaming of my own future. I remember being a pre-teen and feeling anything was possible.
The winds of Sandy blew me to Charlottesville in time for the NEDA Walk. Coincidence? I’m not so sure.
Last week I flew out to California for the National Eating Disorders Association Annual Conference. As the lights of Los Angeles came into view outside the plane’s window, I couldn’t help but think about Melissa. She always talked about moving there when she was healthy, when she’d beaten ED, determined to fulfill her dream of making movies. As the distant lights blurred through my tears, I felt that I was there to carry out her dream.
As a first-time exhibitor, my perspective was very different from past conference experiences. Misty and I sat behind the Someday Melissa table, our beautiful banner adorning the front, the film’s poster standing on an easel at one side, pamphlets and wrist-bands spread across the top. People began stopping to talk.
Before I continue, I need to explain the uniqueness of the NEDA conference. Most professional conferences are just that: conferences for professionals in a given field. In 2003, NEDA made the groundbreaking decision to bring parents and families together with scientific researchers and eating disorder professionals at their annual conference, “Building Connections and Mobilizing Families, Educators, Advocates and Professionals.” Thus began a unique sharing of information, resources and perspectives that continues to this day.
When you have a child or loved one battling an eating disorder, there is a sense of isolation that engulfs you. You hear it over and over. I know that feeling. I lived it. Part of it is the amount of physical and emotional energy required to deal with the illness: the doctor, therapy, nutrition appointments feel never-ending; but the other part is the perceived stigma and shame attached to eating disorders.
When parents and families attend the conference, they say it’s like meeting people from the same foreign land, who speak the same strange language, one they never taught you in school. It’s a place where parents can share experiences without feeling shame or embarrassment. Where you can ask a glowing, healthy young woman or young man what finally enabled them to conquer ED after years of illness. Where a mother can go up to a top researcher and ask “what are your studies showing?” Where a husband can comfortably approach the director of an eating disorder treatment center and ask questions. Where sisters and brothers meet others who lived the same bizarre life of battles at the dinner table, locked food cabinets, stolen money, and estrangement from their siblings.
People began stopping by our table – parents, therapists, nutritionists. Many of them knew about Someday Melissa and were excited to learn they could buy the DVD. Others wanted to learn more or inquire about scheduling a screening or to have me come speak. People still struggling came to tell me that Melissa’s story is inspiring them to continue their fight against ED. Some just wanted to give me a hug. It was emotionally exhausting and energizing at the same time.
As Misty and I packed up to fly home for a screening of Someday Melissa that was scheduled for the next day, I knew in my heart that Melissa’s story, her dream of “making a movie that will change lives”, was coming true.