Lobby Day Memorial

I was going to write an update on Lobby Day with the Eating Disorders Coalition, and thank all of you for the support that I got as I traveled to Washington, DC. I was going to write about how I had a front seat to history as the Senate version of the FREED (Federal Response to Eliminate Eating Disorders) Act was announced. I was going to write about how the sun came out on Tuesday, about how much my feet and legs hurt, about all of the wonderful people I met as I walked around Capitol Hill.

But I can't. All I can think about are those who are no longer with us because of their eating disorder. I heard their stories yesterday and I am haunted. Haunted by how damn unfair the world is. Haunted by how close I was to having my photo on a sheet of paper that was handed out at an EDC Lobby Day.

And so I am thinking of Leslie and Anna and Melissa. Of Heather and Kari. Monica. Andrea. Nicole, who died just days ago. Of those who are still with us and still struggling.

Before I think too much and lose my mind into the abyss of despair, I have to remind myself that this is why I fight and take days off work and lobby Congress and be a professional pain in the ass. I fight for me, yes, for the years lost, the damage incurred, the money spent on ineffective and useless treatment. But mostly, I fight for others who weren't as lucky as I was, for those who didn't have the health insurance and financial resources that I did, who didn't have the family support or the forward-thinking clinicians, who didn't dodge the health complications of EDs as nimbly as I did. Who faced even dumber doctors and worse prejudice and medical care that doesn't even deserve to be called medical care--all because they had an eating disorder.

That's why I go. To channel some of the rage that still simmers at my story and so many others like mine. To give a voice to those who are voiceless. To make sure that others don't get hit by the double whammy of an eating disorder and a healthcare system that too often doesn't give a damn.

I leave you with a poem by Clarissa Estes that eloquently captures my feeling on the matter:

by CP Est├ęs

Here I have found my place.
Here, I have found my place.
Here I am needed
at this great stone wheel
that cannot turn by itself,
but only by the bones and blood
of the hands and the legs
that can hold to it,

that can hold to it,

that can hold to it.

Working long, tiring, resting,
Working long, tiring, resting,
Working long, tiring, resting,
coming back
once more.

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now.is.now said...

This post gave me chills. It's so easy to forget how dangerous and harmful (even when they don't result in death) eating disorders are. Lately I feel like I've been surrounded by stories that are big wake up calls. It makes me very sad for all those struggling and all those who are no longer with us.

Finding Melissa said...

Thank you for writing this and reminding me how important the fight is. I forget, sometimes, when I complain how hard recovery is, that the alternative is worse and that eating disorders are lethal. You're doing a wonderful job of raising awareness and, hopefully, we can gradually change things.


balancingontwofeet said...

This post left me without words. Each story is such a wake-up call to the danger of eating disorders and the reality of death. So many of us feel that we are "different" and the statistics don't apply to us, but this is just another lie that ED feeds us.

Each step of the fight is difficult, but continue to forge ahead.

Lois said...

As I read the stories of these girls, I began crying. It breaks my heart every time I hear of another person who was taken by an eating disorder. It only serves to remind me to fight harder and live better.

Maddi said...

heartbreaking...I can hardly even believe this disease is fatal when I am in the thick of it...that is what is so scary...

Emma Kay said...

This is a certainly a post that needed to be written. It is easy to forget about the health complications of EDs when you are mainly working on the emotional baggage. Keep up the wonderful work you are doing!

Angela E. Gambrel Lackey said...

Good-bye to all of you. The world is diminished by these losses.
Like Maddi said, I can hardly believe these diseases kill even when I am in the middle of battling anorexia right now and it is frightening to think about, so I try not to even though we all need to be reminded of the fundamental fact that eating disorders do kill.
I am at a loss what to say or feel ... except good-bye to those who have gone. Everyone please keep fighting; the world needs all of you.
Carrie, thank you for your work. Someday I hope to be able to help, too. Someday ...

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I'm a science writer, a jewelry design artist, a bookworm, a complete geek, and mom to a wonderful kitty. I am also recovering from a decade-plus battle with anorexia nervosa. I believe that complete recovery is possible, and that the first step along that path is full nutrition.

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