by Ellen Bennett, MOM, KMB for Answers

This is an event that I really wish I was not part of; I wear a green shirt.  I attend because I am one angry MAED (Mothers Against Eating Disorders)momma who is passionate about helping anyone impacted by an eating disorder.  My frustration and anger about eating disorders has sent me on a quest to learn as much as I can about ED; current practices and treatment, new research, training, awareness and engagement on a national level to advocate for mental health reform.  I have experienced everything we are fighting  for; misdiagnosis, untrained medical professionals, lack of awareness and understanding, insurance obstacles, premature discharge, parent blaming; the list is endless.  I watched my daughter slowly starve herself to death and there was nothing I could do to get her the treatment she needed.

This issue is so dear to my heart, nothing will stop me from taking time off from work, traveling to DC from upstate NY, this year I was solo; knowing that when I get there I will be surrounded by people who “get it”.  I may know them from facebook or other social media or perhaps we met at the march last year or at lobby day.  I attend because, it is a place I feel connected; I feel that I am truly making a difference, making my voice heard.  And at the same time we all feel empowered that our children’s lives mattered, that they did not suffered in vain; we will be a catalyst for change.  Our hope is that the momentum that we feel at the march will resonate through the halls of the Senate and the Legislature and this injustice of inadequate and inappropriate care will no longer be an issue.  There will be no more shame associated with ED, no more stigma associated with mental illness, brain-based illnesses will be treated the same as any other disease of the body; “the brain is part of the body” will be the norm.

As we gather and share our posters, sign the card on the yellow roses, listen to speakers,  greet our sisters and brothers brought together by a common struggle, heart ache and sorrow we give each other strength, courage, hope and an overwhelming sense of peace;  we will not be silent, we will raise our collective voices to save lives.
 
There was a moment during the march when a speaker acknowledged those of us who were wearing green shirts and asked that others reach out and give us a hug.  I was overwhelmed by the number of people who came up to me to give a hug; overwhelmed and moved, a complete sense of shared deep caring and concern; I was embraced by love and understanding.  A collective shared loss, very moving and healing.

As the sun set and our candles were lit in remembrance, a sense of purpose, hope and shared commitment filled the lawn and we all dispersed into the night feeling forever changed and forever impacted by the stories, the words of Patrick Kennedy giving us a sense of collective power that an influential colleague cared enough to break the silence of secrecy to say, “NO more”; mental illness is a national issue and it should be treated with the same dignity that all other major health issues are treated.  This powerful speech gave us all a sense of sincere understanding and caring about the issues associated with ED and the importance of why we were there.  Our purpose and need to have our concerns heard was acknowledged and validated; we all left feeling a sense of accomplishment and inspired for lobbying the next day. There was a common sense of purpose, a reason to come from all across the country to say change must happen, no one should die from ED, not one should suffer for years and years; recovery is the answer. 

The MOM March 2015: a powerful and amazing experience that has inspired me to continue to fight for those we have lost and for those who struggle.  For me, it is a sense of fighting for my daughter and all the sons and daughters, moms, fathers, sisters and brothers around the world who are impacted by ED and the devastating ripple effect that is left in its wake.  Recovery is the only answer.  ED is a treatable illness, no one should die.

www.MarchAgainstED.com

It was Sunday morning, the weekend before the March.  I was sitting across from my husband sipping my coffee while he worked on his crossword puzzle.  I was scrolling through the MAED posts from the night before on my IPad when I looked up at him and said, “I need to go to the March.”  He said, “Yes, you do.”

So I got up at the crack of dawn only a few days later, on Tuesday morning, and boarded a commuter flight from New York to Washington, DC.  I found my way to the hotel where everyone was staying, all by 10 a.m!  One by one, I began to finally meet the women who I have travelled this journey with for over a year, a road that I had been walking alone for over 6 years prior to finding MAED (Mothers Against Eating Disorders), a secret Facebook group comprised of over 800 moms on this journey.  In our day to day life, how many people really understand what we are going through when our child is suffering from an eating disorder?  In an instant, I was surrounded by moms (and some dads too!), and all I had to do was to look into their eyes to know they get it.  It was magical.

As the day rolled on, we could see how much work and planning had gone into the event.  A stage appeared right there on the lawn of the Capitol.  There were posters and roses and a panel of distinguished speakers.  There was music , dancing and snacks!  As I sat on the lawn listening to the speakers, I felt a wave of emotion that stayed with me the entire afternoon.  Tears welled up and trickled down my face at random moments.  We soldier on, day in and day out, trying to keep it together, but here I was, in the presence of some who have lost everything to this horrific disease.  I was humbled by their presence.  There are moments that will stay with me forever.  Those are the moments sitting one on one with a mom while she tells you her story.  Each story was unique, each one heartbreaking.  I am privileged to have been in their company. 

We have to keep fighting so that we build knowledge and understanding.  In the old days, mothers lost their children to infections and childhood diseases that have largely been eradicated because of the advancement of medical science.  We have to keep fighting so that moms of the future don’t have to suffer the losses of our generation.  Someday there will be early intervention, comprehensive treatment and recovery support.  There will be no judgment and no stigma.  There will be better medications and science to support their use.  As Patrick Kennedy said, an illness in your brain should be treated the same as an illness anywhere else in your body. 

We cannot afford to stand still, we have to keep moving.  When I went to the March I saw how tirelessly some work on behalf of all.  Whatever havoc ED wrought in their lives, they did not turn away from it, but instead they rallied and they created this amazing event to benefit all affected by this disease.  If you ever feel cynical about how government works, come to a Mom March.  You can see how we all have access to our government officials, how they represent us and how they want to hear from us.
I boarded my plane at 10 pm that night to head back to Connecticut.  I was not able to stay for Lobby Day but I have been so impressed with the awesome reports and photos from the efforts of that day.  Thanks again to all the organizers, sponsors and partners.  See you next year – MOM MARCH 2016!

By Kitty Westin, Anna's mom, EDC Board of Director's, Fearless leader

October 27 and 28, 2015 were historic days for the eating disorders community. Hundreds of people who are affected in some way by eating disorders went to Washington DC to speak out and ask Congress to help us in our fight against them.
 
On October 27th Mothers Against Eating Disorders (MAED), the Alliance for Eating Disorders Awareness, and the Eating Disorders Coalition joined forces with 12 co-sponsors and 43 partners to bring approximately three hundred people to the west lawn of our nations Capitol. The goal was simple; to bring attention to eating disorders. The second annual MOM’s (Mother’s and Others) March on Washington brought people from across the United States and as far away as Australia to send a clear message to Congress and the public that eating disorders are serious illnesses that deserve attention.  The passionate group that gathered together to raise their voices, listened to empowering speeches, told their personal stories and supported each other. They came to Washington DC determined to tell their stories and expecting that their voices will be heard and I don't think anyone left disappointed. The overall message of the rally was; we need to pass the Anna Westin Act NOW because to many are suffering, to many are dying, and we can make change happen. Organizer Cherie Bilby Monarch said; “The only way things will change is for voices to unite and organizations to collaborate.”  I can safely say that our day on the west lawn united voices and organizations in an amazing and powerful way.
 
Following the MOM’s March, over 200 citizen activists stayed in, or traveled to, Washington D.C. to attend the Fall Eating Disorders Coalition Lobby Day on October 28th.  We had advocates from 31 States participate. We were lobbying for speedy passage of the Anna Westin Act (H.R2515 & S.1865). The AWA of 2015 is the first eating disorders legislation to receive bipartisan support at introduction in over a decade. The enactment of the Anna Westin Act will improve care for eating disorders by providing training for physicians, health professionals, school personnel, and the public as well as treatment coverage by clarifying the Mental Health Parity Bill that was passed in 2008. The House version of the bill also addresses “truth in advertising” by asking the FTC to conduct a study on the impact of using digitally altered photographs in advertisements. The results of lobby day are truly impressive. Voices were heard loud and clear and 10 new Members have signed on as co-sponsors of the bill in the first week. We are getting much needed Congressional hearings and just yesterday Congressman Lance (R-NJ) and Congresswoman Matsui (D-CA) championed a bipartisan amendment to include the provisions of the AWA in Congressman Tim Murphy’s (R-PA) comprehensive mental health reform bill, the Helping Families in Mental Health Crisis Act (HR 2646). This is truly a victory for all of us!
 
I think I speak for all who attended the MOM’s March and Lobby Day when I say; There is an energy around the Anna Westin Act that feels electric! I have hope, I believe this will happen, and I am grateful to everyone who attended the events both in person and virtually. Our champions in the House and the Senate are working hard and have prioritized getting this done.  I am proud to be one of the “warriors” with boots on the ground working toward a day when there are trained professionals, parity is enforced and we know the impact that photo shopping has on our young people.  For updates, action alerts and information go to www.eatingdisoderscoalition.org. This is a fast moving target, there is much left to do, and we continue to need your voice to make it happen.

When I first decided to go to the Mom March, I was hesitant.  Being thrust into the ED world 4 years ago has been such a frustrating and scary experience.  Could showing up for a March and attending Lobby Day really make a difference and does it matter?  Will anyone listen, will anyone care?  I don't really know any of these women, I met them online, we have barely spoken?  But I booked the hotel, flight,  and went anyway, I need to at least try and make a change, right?

The bond we all share is amazing.  I met a wonderful woman at the Airport who lived 10 minutes from me, yet we had never met before.  We had so much in common and talked the whole way there.  She lost her daughter to ED several years ago, but yet she shows up twice a year and lobbies.  Her energy and advocacy is amazing.  I now consider her my friend. 

Meeting everyone at the March was overwhelming and amazing all at once.  Many I recognized right away, some I had to be reminded who they were.  We all hugged, shared stories and bonded.  There was dancing, speeches, advocacy and of course we had fun and truly connected.  To hear Patrick Kennedy speak about all the struggles we have had with such elegancy and truth was shocking.  It was like he was telling our story, but we all know; it is all of our stories.   We all have a story, so many similarities but yet  so different and at different places in the journey.  I grieved for the lost angels and vowed to fight harder so no one else needs to experience this.  The reception after the March was another great time to connect.  To be sitting in a hotel lounge, sharing food, drinks and conversation with so many people and everyone GETS IT.  No matter what was said, there was no judgment, just general concern and compassion.  No one minces words and steps around anything that needs to be done, to get a loved one to the next step.

Lobby day was another great experience.  I was put in a group with other Wisconsinites.  None of us had met before, yet we all connected and worked together throughout the day.  Two in our group had lost their loved ones, two were recovered, and two of us had children in various stages of recovery.  Every staffer we met with was courtesy, engaging, and generally seemed to care and wanted to hear our stories.  To be walking around the halls of Congress and House of Representatives and all the beautiful architecture and history amongst us was breathtaking.  Every staffer said the same thing, "Our representatives want to hear from us, ask them to support the Anna Westin Act, tell them your story."  I do plan to follow up with each one of them to remind them we need their support so all can have access to treatment with quality professionals.  Will I go back? Absolutely, change is needed and we can make a difference.  No more green shirts.