My first response to that question is always, "It's not a dumb question, as no question is ever dumb. We learn by asking questions." My second response is, "No need to be embarrassed. Once upon a time I didn't know what Lobby Day was either!" And then I expound a bit on what Lobby Day is/means to me.
Because this 'Lobby Day season' I've seemed to receive more than the usual amount of emails asking this very question, I thought I'd write a blog about it. Of course, I haven't yet found a way to totally put it into words what Lobby Day means to be, but I do hope this helps you better understand what Lobby Day is all about.
~From the Hill, Kathleen
Even though I really had no idea what to expect from my 1st EDC Lobby Day (and to be frank, I was also totally nervous that I wouldn't know what to say in the meetings, and I was afraid that if I did open my mouth to speak, I'd for certain say the wrong thing) I knew deep within that what we 30+ advocates were doing that snowy DC morning was indeed going to have an impact and indeed we were going to make a significant difference in the lives of those affected by Eating Disorders.
It was also on that cold and snowy February morning in 2003, that for the first time in nearly two decades I felt like I shouldn't feel ashamed and embarrassed for having suffered with anorexia and bulimia. For the first time in nearly 20 years of my life I felt like I could make a difference in the way I was treated by society, medical professionals, friends and family, for suffering with a disease, not a "life-style choice". And for the first time in nearly 20 years of my life, I felt like I might finally have the chance to get back something I had long ago lost. Something that until that day in DC I hadn't even noticed was missing all those years while I suffered from "feeling fat". On February 26, 2003 I dared to dream that I could once again find a voice, my voice, and I dared to dream that Hope Exists and that hope is one of the most powerful expressions of being alive.
"What's hope got to do with it?"
Nearly a year before my first Lobby Day, in June of 2002, I had spoken at a Congressional Briefing that the Eating Disorders Coalition sponsored. The Briefing was entitled, "A Matter of Life or Death: A Congressional Briefing on Eating Disorders and Access to Care." That June I arrived in DC feeling very different than I did in February, 2003. In June of 2002, I felt like my entire life since the age of 12 (when my eating disorder took over my life) had been a waste of everyone's time. I felt devoid of happiness, of meaning, of significance, of worthiness to be alive, and I truly felt like I had no reasons left to live. I felt this way for many reasons, but mostly because after so many years of suffering without receiving proper and adequate treatment, I felt like I was alone in my suffering, and I felt like my eating disorder, and all the hell and suffering it brought to seemingly everyone who came in contact with me, was, of course, "my fault". Most significantly, I felt 100% devoid of hope. Because my eating disorders had taken such a toll on my emotional well-being over the years, I came to the very unhealthy conclusion that the suffering I had endured was meant to come to an end the day I came to speak at the Briefing in June, 2002. My 'plan' was to never make it home from the Briefing. My mal-nourished mind and my underfed soul thought it was best if I quietly faded away, succumbing to the disease that for so long I had held out hope would reward me with happiness for the thinness I sustained*. I thought everyone who knew me or who had once known me would be relieved once I was gone.
Much like my first Lobby Day in February of 2003, in June of 2002 I had no idea what to really expect when I set foot on Capitol Hill; the environment and the goings on were foreign and enigmatic to me. I certainly had no idea what to expect from this organization called The Eating Disorders Coalition for Research, Policy and Action, but I knew what not to expect: I knew not to expect help or hope from them. (Or at least that was what my eating disordered-self, after so many years of being told, "Snap out of it and eat already!", had decided I should not expect.) Little did I know that on that day in June of 2002 my eating disordered-self would be totally taken aback by the organization I knew relatively nothing about, and my life was about to change in ways I never ever imagined.
The Congressional Briefing that the Eating Disorders Coalition (EDC) hosted in June, 2002, was designed to educate Members of Congress and their staffers about the denial of insurance coverage those with eating disorders so oftentimes face when seeking treatment. I had often tried to seek out treatment during the course of my 16 year-long battle with anorexia and bulimia but I was always told, "Insurance doesn't cover this." In fact, shortly before going to Capitol Hill to speak at the Briefing, I had been searching online for residential treatment options at centers like Remuda and Renfrew, but neither place would be covered by my insurance. I was told repeatedly by my insurance company that "Eating Disorders are not a covered service." Being told that only reinforced my disordered thinking that it was "my fault" for being sick, "my fault" that I couldn't simply 'get over it!', and "my fault" for 'failing' at recovery. I honestly thought that after I finished my speech at the Briefing that the people in the audience would come up to me and say, "When are you going to realize you need to just get over it already!?"
In fact, quite the opposite happened.
What happened after I finished speaking was that I found something I'd been missing for nearly 20 years of my life; something that I didn't even know I was missing.
That something was: understanding.
The other speakers and the people in the audience didn't blame me. They didn't shame me. They actually told me they were "sorry" that I had suffered and that it "wasn't fair" that I hadn't been able to get treatment.
I really couldn't fully take it all in at the time --but somewhere deep within I knew their words were significant. I knew that their words, unlike the words that had been constantly repeated to me by my insurance company, were supportive and heartfelt.
I had the sense that the people who spoke at the Briefing, the people who organized the Briefing, and the people in the audience all believed that I deserved treatment. And because of that, that day,
The Eating Disorders Coalition, by providing an avenue for "the voice of advocacy" that day (including Kitty Westin who shared the story of her daughter Anna's death as a direct result of anorexia), gave me the first ounce of belief that I might be worthy of surviving the disease that I had only hours before planned to allow steal my life. In hearing Anna's story, I heard the reality of my suffering, and I heard the pain of a mother left behind to deal with the grief that comes when a young life is taken from this world prematurely due to the hell of eating disorders. In hearing Kitty's and Anna's stories I realized that I didn't want to follow-thru with my intended plan. It was the first time that day that I would realize, "I do not want to die from this."
In the audience that day were two parents who had come to the Briefing because they believed that eating disorders needed to be recognized for the deadly disorders that they are, and that those suffering DESERVE treatment. The parents were Ron and Sally George. In September of 2000, their precious daughter Leslie Ann died as a direct result of a hospital emergency room denying Leslie proper life-saving service. The hospital doctors discriminated against Leslie after she disclosed to them that she suffered with bulimia. The doctors actually told Leslie to go home and let her food come out the way it had gone in. Shortly thereafter, Leslie's stomach ruptured and the hospital spent hours (and nearly $140,000) trying to save Leslie's life. When Mr. and Mrs. George looked into my eyes that day and shared Leslie's story with me --it was the first time I realized that bulimia is a seriously deadly disorder and I was scared I was going to die. And it was the second time that day that I realized, "I don't want to die from this."
The Eating Disorders Coalition provided a network of advocacy, compassion, strength, researchers, treatment professionals, family and friends affected by eating disorders --it was like this 'dream world' I'd always longed for when I was sick: people working together to help those suffering from a disease that was killing me and millions of others. Without the EDC providing this avenue for advocacy, I can honestly say that I do not think I would be alive today.
I walked away from the Briefing not quite sure what had just 'happened' to me. But I knew that what had happened was not to be taken lightly. And I knew that I felt a twinge of something in my heart that I hadn't felt in nearly 20 years.
Shortly after the Briefing, while walking around DC's beautiful Botanical Garden, I began to place what I was feeling in my heart. The feeling was that of...hope.
Putting it altogether: hope and advocacy in action!
Shortly after the Briefing I started receiving email updates from the Friends and Family Action Council, the advocacy arm of the EDC. The email updates mentioned this thing called "EDC Lobby Day". I had no idea what "Lobby Day" meant in relation to me. I thought that drug companies, oil companies, or people like Michael J. Fox were "lobbyists" and therefore, the EDC Lobby Day was not really for me. But as I mentioned, in February, 2003, I took a chance and ventured into DC to see what this "EDC Lobby Day" was all about.
There was a group of about 30 people at the training. I felt sure they were all smarter and savvier than me. I felt sure they knew more about Lobbying and legislation than me and that I was not meant to be there since I was 'only' someone who suffered with an eating disorder, I wasn't a treatment professional or doing research in eating disorders for my Ph.D.. There was a part of me who wanted to sneak out of the building where "Lobby Day Training" was being held, trust me. But I stayed...and am I ever glad that I did.
Jeanine Cogan, EDC Policy Director, began our training with a few ice breakers. She asked us questions like, "What do you think of when you hear the term "lobbyist" and "politician"?" The answers people voiced, as I'm sure you can imagine, were made up of some less than flattering descriptors. But then there were some answers called out by people in the audience who had been to previous "EDC Lobby Days". Their answers were more positive and hopeful including: "advocate", "interested in the issues", "compassionate", "relationship building", "makes a difference". Hmm...that's an interesting twist, I remember thinking. Jeanine went on to share with us what it means to be an advocate lobbying on the Hill for a cause. She shared with us that our stories, our personal stories, do indeed make a difference. I remember thinking, "yea, not my story though, she means stories from treatment professionals, right?" Nope. Jeanine meant what she said, "There is power in your personal story and that is what the Members (of Congress) and their staffers need to hear. They need to hear how your life was impacted by lack of treatment, by inadequate treatment..." When Jeanine was telling us why our stories mattered, that is when I first realized that for so long I had been missing my voice. I had lost my voice for nearly 20 years to a disease that silenced my needs. On
Unfortunately, my motivated feelings lasted only a fleeting moment because then Jeanine moved on to talking about Legislation.
My new found voice suddenly grew weak in my own head and a feeble and familiar voice said, "You can't do this. You don't know enough."
Feelings of worry flashed over me. I started furiously taking notes on every single detail of the Legislation Jeanine was telling us about. I felt like I couldn't write fast enough. And again, I felt like exiting the training because I felt I wasn't 'qualified' to be speaking at the meetings later that day. Well thank goodness Jeanine was aware that I was (and many others I'd come to find out, were) feeling pretty petrified that I wouldn't remember all the nitty gritty details of the legislation. She put us all at ease by saying, "You don't need to, and you likely won't, remember all the details of what I just said, that's why we're going to practice now what it will be like in your meetings today."
HUGE sigh of relief!
So, sitting around our round table, 8 of us looked at each other with eyes wide open as if to say, "You go first!" After a few nervous laughs, we gathered our strength and began practicing our 'meetings'. We had one person act as the Staffer and the rest of us acted as "EDC Advocates". First we introduced ourselves to the Staffer. Then we took a few minutes to share with the 'Staffer' why were there on the Hill that day. After everyone had had a turn to share, the 'Staffer' thanked us for our time and encouraged us to follow-up with their office.
Pretty good practice round we thought --but let's do it again for good measure. So we practiced again, shortening our 'reasons why we're on the Hill today' to about three minutes each, which gave everyone a chance to share in the short time allotted for our meeting. The more we practiced, the more at ease I felt, the less scared I felt, and the more I felt like my story, my voice, was indeed worthy enough to be there.
Jeanine wrapped up training and we were given packets of information and a list of offices we'd be meeting with that day. Raring to go, we set off on our mission: Educate Members of Congress and their Staffers about Eating Disorders: They are deadly, but there is Hope!
Meeting after meeting our 'Lobby Day Team' improved the delivery of our message. We got more comfortable sharing our stories in the time we had allowed, and we got more comfortable tying our stories to the legislation at hand (back in 2003 we didn't have the FREED Act, but there was other legislation like Mental Health Parity that we were advocating for).
At the end of the day, though tired and feet a bit worn, I was beaming. Indeed we had all made an impact and indeed we had all begun to make a significant difference in the lives of those affected by Eating Disorders! I not only had hope, but I now believed in the power of hope.
We've come a long way since 2003. For the purpose of this blog, the achievements of the EDC's advocacy efforts and the accomplishments of the Eating Disorders and Mental Health community are far too many to list. But they are many. A few I want to highlight include: successfully helping to advocate for the passage of the Paul Wellstone and Pete Domenici Mental Health Parity and Addiction Equity Act of 2008, and perhaps most importantly: the creation of our 'dream bill', the FREED Act (HR 1193), the Federal Response to Eliminate Eating Disorders --the first ever comprehensive bill in the history of Congress! The House version of the FREED Act was introduced by Patrick Kennedy in February, 2009 and the Senate version of the FREED Act was introduced by Senator Harkin the night before our last Lobby Day -- April 26, 2010!!
It is hard now for me to go back and remember the darkness that once consumed me as a result of my eating disorders. It is not hard to do because the pain from that darkness is too great to revisit. No, it is hard to remember the darkness because after I met the EDC, and since I fully recovered, I have remained full of the conviction behind the "enigmatic power of Hope" that was instilled in me at my first Lobby Day back in February, 2003. Perhaps most importantly: I have found that where there is hope, there is no darkness.
When people ask me if I really believe that the FREED Act will pass, I get goose bumps as I share with them my most sincere and gleeful answer of, "ABSOLUTELY, 100%! I BELIEVE!" I really do believe that miracles, like the FREED Act becoming law, do happen. My recovery, and now my life, is proof that miracles DO indeed happen if you: work hard, believe, and...never ever give up on Hope!