On Sept. 30 and Oct. 1, I traveled to Washington D.C. with hundreds of other eating disorder advocates to participate in the Eating Disorders Coalition’s fall Lobby Day and to join the first ever M.O.M. March on Capitol Hill ().
I’d never done activism of this sort before. So, on Monday night as I was packing for my trip, I Googled “What do you wear to go lobbying?”
The answer: “Look good. Damn good. You’re representing millions of people in these meetings.”
(But hey, no reason to be nervous, right?)
To be honest, the fact that I would be representing millions of people with eating disorders (30 million, to be precise) hadn’t yet crossed my mind. I’d decided to go to Washington for a host of other reasons — the most prominent being the anger and injustice I felt over my battle with insurance throughout this process. I wanted to make our national leaders aware that mental health parity is not working. Insurance companies are not providing fair or equal coverage for mental illnesses, and this inequity has steep emotional — as well as financial — costs.
So, in truth, I went to Washington for myself. I wanted to find someone who would feel equally incensed by this injustice and use the authority I lacked in order to change it. But when I got there, I found myself part of a very different narrative.
Each person who arrived on the west lawn of the Capitol was given a t-shirt: purple for those who were supporting someone battling an eating disorder, and green for those who had lost someone. I was stunned to see just how many people were in green. For four hours, we sat on the shadeless lawn as mother after mother described the heartbreaking circumstances that had led to a daughter’s death. Each talked about the lack of access to treatment, the dearth of specialized care, the insurance barriers, and the stigma and bias that came from every direction (including emergency room doctors and nurses, who made it clear that eating disorder patients “did this to themselves” and were taking time away from “real patients”). One after another, each mother broke down as she told the crowd that her daughter did not have to die. Eating disorders are not choices and they are not terminal illnesses, they said.
The M.O.M. March on the West Lawn of the Capitol.
The small patch of grass I had staked out near the stage seemed to expand outward to fill the lawn. For the first time, I grasped the magnitude of those 30 million sufferers. This wasn’t just my issue. Perhaps I’d known this before Tuesday; now, I felt it. The shame, the self-deprecation, and the “Why would anyone care about me and my problems?” had only served to fuel the isolating power of the eating disorder. I realized that none of those feelings were reasons to keep my story hidden.
So, looking damn good, we gathered the next morning for a second time on Capitol Hill. Our mission for the day was twofold: 1. We were asking members of Congress to join Florida Congressman Ted Deutch in requesting additional research from the Centers for Disease Control and Prevention regarding in-school Body Mass Index (BMI) screening, the unintended consequences of which have included bullying and eating disorders; 2. We were reminding them to sign on to the FREED Act (Federal Response to Eliminate Eating Disorders), which will be even more important come spring when the new Congress is in session.
Ten fellow New Yorkers and I attended six meetings in five hours, sharing stories about daughters who recovered from their illness only to die years later from complications, about an eating disorder triggered by an in-school BMI screening, about being cut from treatment by our insurance companies. Some of the responses we received were tepid; others were deeply sympathetic.
About halfway through the day, as we were walking to Senator Chuck Schumer’s office, I dropped back from the group to take in the scene. The Hart Senate Office building has in its center a huge atrium that stretches several stories upward. The hallways on each floor open up to look out to the cavernous center, making the suited staffers look like ants hurrying through tunnels when you look at them from below.
We walked along a hallway on the third floor, and as I looked out into the atrium, I realized that for the first time in my life I didn’t feel small. I felt as big as that towering space in the center, as if I could fill every square foot of it. All traces of self-consciousness, inadequacy, and feeling like the perpetual “other” vanished — instead, I knew with my entire being that I was no less deserving to take up space in this daunting edifice than anyone else there.
My poster for the M.O.M. March.
The feeling left in the wake of that moment still surprises me a week later. I actually feel grateful. That’s not something I’d ever associated with my eating disorder. Even as I’ve been moving deeper into recovery, reflecting on my eating disorder has mostly just caused me pain — whether it’s empathic pain I feel for my peers who are suffering, or it’s the heartbreak of looking back at the waste of living 12 years with anorexia. But that has changed since going to Washington last week. Although I still feel the pain, I also realize what that pain has given me. This experience has left me heartbroken — that is, it has broken open my heart to allow me to feel and experience life more intensely than I ever have before. And in this heartbreak, I am finding a deep sense of purpose. Suffering and recovering has given me “insider knowledge” of this illness — an expertise that no amount of reading and learning could have given me. It is this intimate understanding that allowed me last week to put my own anger and indignation aside and feel able to speak on behalf of the 30 million.
Let me say one more thing about gratitude. I can’t say that I’m glad I got sick. Nor would I ever wish this illness on anyone — if I could eradicate eating disorders from the earth this moment I would do so without a second thought. My point is that I don’t know whether I was fated to develop an eating disorder, but the fact is that this happened to me. And because it did, I’m now in a position to turn back and help others out of that hell. For that ability and opportunity, I am grateful.
Before I wrap up, I want to give a shout-out to the fantastic group I worked with on Lobby Day. I won’t name them all, because I’m not sure whether they want their participation publicized. However, there are two who I do think would want to be named, simply to honor the young women in whose place they were speaking. I had the privilege of meeting two extraordinarily courageous mothers: Sharon Mathiason, mother of Jennifer Mathiason, who passed away due to medical complications she suffered years after recovering from anorexia; and Ellen Bennett, mother of Katie Bennett, who passed away from anorexia just 18 months ago. Please visit their websites Moonshadow’s Spirit (a scholarship fund for individuals in need of treatment) and Katlyn Mary Bennett for Answers.
Finally, I’ll share one more story from the March. As the final speaker for the day took the stage, Carolyn Costin (the founder of Monte Nido) walked through the crowd handing out small, triangular boxes. A cautionary message on the boxes warned us there was a live butterfly inside. Sure enough, I could feel light movement coming from the box. Feeling the faint struggle made me anxious. I thought about releasing it then and there.
I waited, though, and when the speaker finished, Carolyn instructed us to open the boxes. All around me, butterflies of every size and color emerged and took flight. I gently pulled the tabs on the box and pulled back the flap. Inside was bright orange monarch butterfly. It wasn’t moving. My heart began to beat a little faster. Had it died while I’d stood there holding it inside its box? Should I have opened it sooner? But then it moved one of its legs, and its wings twitched. I gave it a gentle nudge and it finally fluttered upward to join the constellation of butterflies surrounding us.
I learned in Washington that my eating disorder did not ruin my life. If anything, conquering it has given me a better life than I’ve ever known. Like the butterflies, I’ve had my own journey out of captivity with the help of many gentle nudges along the way. For the first time in 12 years — maybe for the first time in my life — I feel the possibility of the wide expanse of sky above me. I feel free.
Click on the photos below to view my photo gallery!
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- The inaugural M.O.M. March (Sept. 2014) on the West Lawn of the Capitol.
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- My poster for the M.O.M. March.
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I'm a writer, a mental health activist, and a 20-something in recovery from an eating disorder. This blog chronicles my journey through the middle ground toward full recovery.
Joanna, I was so honored to lobby with you. In many ways, you reminded me of my Jenn. My feelings are the same as yours, though slightly different. I know that Jenn did not die so that I would take up her cause. But, because she died, I’ve taken up her cause. Honored and humbled to call you friend.
Sharon, it was an honor< to meet you as well. I find it rather serendipitous that we ended up in the same group, since I have known both your and your daughter's name for several months now. It was lovely to get to know you in person — although I wish with all my heart that it could've been under different circumstances. I do feel connected to Jenn, as well to Katie, and Nicole, and Anna, and all the young women who have been lost to this horrific illness. I feel connected not only because we had the same illness, but because I've learned throughout treatment that those of us with eating disorders have an uncanny amount in common (personalities, interests, senses of humor — you name it). So I'm sure I would have loved Jenn and all of those young women. Please let me know if there is any way that I can help the cause. I plan to use the gift of recovery to be these young women's voices. I plan to help keep Jenn's memory alive. <3 Joanna
It was wonderful to meet you. This was an amazing happening and I am glad to have experienced it alongside incredible people like you.
It was wonderful to meet you as well! I agree — amazing event. One of the most powerful experiences of my life (if not the most powerful). Hope to see you at the next Lobby Day in April! And until then, social media shall suffice
<3
Joanna, What a great depiction of an amazing experience. I am so grateful for your gift of writing and capturing this for others. I hope to see you again next year. May your recovery continue to be strong as you reach out to help others win this battle.
Thank you so much, Sarah. Writing is how I ultimately experience things — I think it was Flannery O’Connor who once said, “I don’t know what I think about something until I write about it.” So, I too, am grateful that I am able to process my experiences this way.
Hope to see you again next year as well! And thank you for your kind words
Peace, Joanna
Joanna –
What a wonderful and heartfelt blog. You truly have a gift and you have a very powerful voice. Your battle with your eating disorder is part of your journey. It is nothing you should ever be shameful of. It has given you perspective and has helped mold you into the amazing and compassionate woman that you are. Take your beautiful voice and use it in a way that brings you happiness. YOU are FREE and the sky is the limit!
Thank you Cherie
This is my way of taking back all that anorexia took from me!! And thank you again for sharing your own beautiful story at the March last week. It was very moving, and has stayed with me all week.
Peace <3
Joanna, if the rest of your blog is like this article, it is excellent. May I have your permission to copy this blog in particular to place in my waiting room so that others may read it and connect with you.
Getting to the point of gratitude for their eating disorder only comes about with great but grueling personal work, lots of time pondering the meaning of it all, and then clarity of what one’s new life can be. Congratulations.
Dr. Tyson
I also meant to include that it really was a magical day at the MOM March. I wish I could have stayed for the Lobby Day. And all the people there were just phenomenal and such dedicated, wonderful spirits. I was lucky to have been there and honored to have been asked to speak. Any who read this should clear your schedule for the next one.