Just about two weeks ago I traveled to Washington, DC for the second annual March Against ED and my third EDC Lobby Day. (Photos to follow — stay tuned!!)
There has been a lot to process from the two emotionally and physically draining — though rewarding — days I spent there. The March and Lobby Day are at once exhilarating and exhausting. The people you meet are unconditionally supportive, to say nothing of singularly empathetic. Being among this group is cathartic, but also at times trying. Two days of retelling our most difficult experiences, reliving our worst memories, takes a toll.
Click here to read about the object of this year’s Lobby Day, the Anna Westin Act, named for a young woman who lost her battle to anorexia in 2000.
Still, I find it to be a sacrifice worth making. Last year was, for me, about discovering community and finding solidarity. I came to understand the power of my voice and value of my story. I learned that I have the right to speak up, just as much as any of the leaders we met with at the Capitol. That’s a lot to learn in just a couple days.
The takeaway this year was very different — and almost too good to be true. I’ve been afraid to write it, for fear it was just a fleeting mood born of the positivity of it all, but which would sooner or later evaporate.
But it’s nearly two weeks now, and it hasn’t gone anywhere.
Anorexia: What is it going to take?
We were sitting on the west lawn of the Capitol listening to the speakers. They were sharing deeply poignant stories, some about their own recoveries, some about a daughter’s recovery, and others (too many others) about a son or daughter’s lost battle. And yet, amidst all of it, the anorexic chatter in my head was as clear and as loud as it always is. Running parallel to the speakers’ words were all sorts of thoughts about how uncomfortable I was in my body, how big I felt, how I couldn’t keep doing this, I can’t keep this recovery up.
Exasperated, I inwardly watched the two tracks speeding through my mind and wondered, “What is it going to take? I am here listening to the worst of the worst case scenarios, and still I am thinking about anorexia and weight loss and being smaller. What is it going to take to convince me to stop this already?”
And that’s when I realized that maybe I should finally buy into what everyone around me has been saying, and what I myself would be telling the congressional staffers the next day: that eating disorders are illness. There is something amiss in my brain — neural circuits that got wired in such a way that I struggle to nourish myself, such that it will require years of digging new trenches of habits to eventually rewire the whole system.
After all this time, there still has been a part of me that won’t believe it. It insists that this is, in fact, my fault. I’m not sick; I’m a bad person who is too selfish to give up anorexia even for the sake of her loved ones.
That’s not right. That kind of thinking is as black and white as anorexia. And it doesn’t do anything to force some sort of cognizance of my responsibility — as if it would make me finally see the error of my ways and “snap out of” this.
I need to accept that this is an illness. I can’t control the thoughts that my brain is firing at me. And you know what? That’s a massive relief to me. The thoughts are going to fire because that’s what my brain is currently wired to do. They’re going to be there, AND I don’t have to listen to them. They’re not commandments. They’re not even my own voice. They are misfirings, and I can see them as rogue thoughts and let them go.
It’s sill hard, of course. On Friday, my coworker took photos of me because I need a nice head shot for a conference. It was difficult to see the final product. It bothered me for hours until I finally broke down to my husband that evening. It’s not that I don ‘t like my appearance — rather, I’m still, even after nearly two years, getting used to my new body. To me, the differences between anorexia and weight restoration are so obvious. My face is fuller, my arms are bigger, my curves are more pronounced. My brain still hasn’t quite caught up to the changes. I still feel like a foreigner in my own skin.
But I accept it. That’s what I’ve gotten from my time in Washington this year. Even in thinking about the photos, I don’t curse them or yearn for the smaller body in which I felt more comfortable. (Which, by the way, was not a genuine comfort, of course.) Instead, I acknowledged that if I wanted to live this life I’m enjoying right now, then I need this body to do it. There can’t be any negotiating anymore. Anorexia not an option.
The point at which I’ll be OK again
I recently read a blog post by breast cancer survivor Emily Helck (we go to the same graduate school) that reminded me of this struggle to leave behind a former self. Emily writes that although she is grateful for her relatively quick recovery (not to mention for having survived), there was still something she could not leave behind. She writes:
“It had been two years — shouldn’t I be over this by now? That was the message I felt being transmitted through the ether. Not only should I be over it, but I should be inspiring others with just how quickly I had left cancer in the dust. I wanted to move on. I was ready to put this behind me, and get back to the real business of my life. But just wanting to feel better wasn’t enough — I needed to do something.”
The “something” she came up with was making a 32-mile trek around the island of Manhattan à la Cheryl Strayed. The journey was meant to provide a well-defined path to closure, namely, what she had hoped since her diagnosis would be “the point at which I would be OK again; when I would feel normal.”
At Mile 32, closure was nowhere in sight. Healing didn’t magically descend upon her and make everything all right again. She realized that her experience undergoing treatment had irrevocably changed her. There would be no getting back to normal, because there was a new normal to live by:
“I realized that time is not strictly linear; the memory of my stint in the chemo suite doesn’t diminish steadily over my shoulder. This event is like the moon — always there, of differing size and brightness. Sometimes it’s visible during the day, and with me all night. Sometimes it’s blood red and heavy and close on the horizon, other times it’s just a shadow. But it moves around me. It is not my north star. It is not my sun.”
Grief, acceptance, and trust
Emily and I both (and all of us with these kinds of illnesses) have to grieve the losses of our old selves and learn to live with this new normal. Of course, our grief will necessarily take different forms. Like the victim of a violent crime, Emily was totally innocent in her illness, her body taken hostage by a relentless cancer.
I was (am) innocent too — but it’s complicated. Yes, I was taken hostage by anorexia, but more in a Stockholm Syndrome sort of way. As hard as it is to admit, I was complicit in my illness. As a result, my grief will have to be accompanied by self-forgiveness and compassion for the little girl who took us down this road 13 years ago.
Emily is right — it’s a banal statement, but these things really do take time. There’s no use cursing that time, or berating yourself for needing it. At the end of the day, the only option is acceptance: Accept where you are in the process and trust that as long as you hold on, tomorrow will be different.
137 Days | 17 Hours | 41 Minutes | 10 Seconds
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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.
