It's complicated

I was thirteen when someone noticed.

The summer before I started eighth grade, my family went on vacation. We were staying with family friends we hadn’t seen in a couple of years, and the wife’s reaction when she saw me was immediate. She asked my mother about my weight. My mother made light of it, calling it a “phase.”

Her friend kept paying attention and noticed I wasn’t eating. She noticed my bathing suit sagging from my body when all of us kids went swimming that first night. Whatever she saw concerned her enough that she asked if she could take me to her doctor, and I was immediately sent to the hospital.

By then, I had been struggling with an eating disorder for over a year. I hadn’t eaten a meal in almost thirty days. The skin was peeling from my hands from dehydration.

I don’t remember everything about that hospital stay except that it was short. I was  admitted to the mental health unit and told I needed to eat a bowl of Jell-O in order to be released.  This was a small-town hospital, and I was probably the only teenager there. I also remember what my mother said afterward.

“I wish they hadn’t used the word anorexia because now it’s in your head.”

I was crushed and embarrassed.

The family we were visiting had two boys, one my age and a younger brother. The next day, all of us went on the rafting trip they had planned.

I didn’t have the language then to understand why my mother’s words affected me so deeply. Something that had been happening to me had finally been noticed and given a name. I left feeling ashamed that it had been noticed at all.

I’ve been thinking about that girl recently because there has been a lot of conversation about bodies and whether we should comment on them. I understand why so many people say we shouldn’t. I also know that someone noticing mine mattered. That’s where this becomes complicated for me.

There is a difference between noticing someone and assessing them,  concern and commentary, seeing a body and seeing the person living inside it. I know that difference because I’ve spent much of my life on both sides of it.

I wish I were writing this from the other side of an eating disorder.

I’m not. I’m struggling.

Cancer has brought food, weight, and my body into the center of my life again in ways I wasn’t prepared for. Before every oncology appointment, I have to step on a scale. I hate it. I mean that I have anxiety about it for days beforehand.

I understand why my doctors need my weight. I know weight loss during treatment can be medically significant, and my medical team needs that information. Intellectually, I understand all of it and it doesn’t matter. There are days when I dread stepping on that scale more than the chemotherapy waiting for me down the hall.

At my last visit, a nurse who was training announced my weight to the entire corridor. I wanted to scream, I wanted to cry. Instead, I stood there while a number I had spent decades trying not to give power to suddenly belonged to everyone within earshot.

Cancer has complicated food too. Treatment has changed the way things taste. Foods I once loved can taste terrible or like nothing at all. Sometimes the only things that sound good are sweet, like pancakes. I never wanted pancakes before. I will take savory over sweet any day.

I know what you’re probably thinking. Eat the pancake! I know. I know.

I recently read a comment from a woman with cancer who said she had gained thirty pounds during treatment. She wrote something to the effect of thinking that at least one positive of cancer would be losing weight, but instead she had gained thirty pounds.

You would think cancer would rearrange everything. That once you’re fighting to stay alive, caring about your weight would disappear. That the number on the scale would become nothing more than information your doctors use to make sure your body is holding up. It hasn’t worked that way for me.

I am a woman with metastatic cancer whose body is enduring chemotherapy. I know it needs calories, protein, and nourishment. I know steroids can change my appetite, my mood  and my weight. I still don’t want to gain weight.

There’s another part of this that is even harder to admit, I'm bald. I don’t like to look at myself anymore. I’ve had a bilateral mastectomy and my breasts have been taken from me. Cancer has changed so many of the things I once recognized when I looked in the mirror. I’ve also been called “sir” twice, and both times I wanted to punch the person, run and disappear.

Somewhere in my brain there is this completely unreasonable bargain: At least I’m thin and I can look good in my clothes. Except, oh yeah. I don’t have boobs either.

I can laugh when I write that because it’s ridiculous, and it’s also true. When cancer has already changed so much about the way I look, gaining weight can feel like one more thing being taken from me.

There is a part of me that wants to say, Seriously? You have metastatic cancer and you’re worried about gaining weight? Yes, sometimes I am. Just because my priorities have changed doesn’t mean every old wound changed with them.

Sometimes the only food that sounds good is a pancake, and instead of simply being grateful that something tastes good, there is still a part me capable of turning a pancake into a negotiation. I know better, and I have known better for years.

Knowing better has never been the same thing as being free of something.

Cancer has also changed the way other people look at me. When someone hears that I have metastatic cancer, I can sometimes see those brief seconds of assessment before they say anything. Then comes the sentence I’ve heard countless times.

“You look good.”

I know what they mean, and I know they’re being kind. They’re relieved that I don’t look the way they imagined someone with metastatic cancer might look. An eating disorder has its own language. Sometimes what I hear is, You’re not too skinny.

Suddenly a kind sentence has landed in a place the person speaking it could never have known existed. That doesn’t mean people should be afraid to speak to me, and it doesn’t mean I think we should stop noticing one another. Someone noticed me when I was thirteen amd I’m grateful she did. It didn’t change the course I was on, but for the first time someone recognized something was wrong and wanted to help.

What I’ve been trying to understand is the difference between being seen and being evaluated. Maybe that’s what gets lost when we reduce this conversation to whether we should or shouldn’t comment on bodies. I don’t think someone’s changing body gives us permission to diagnose them, discuss them, or turn concern into public speculation.  I also don’t want us to become so afraid of saying the wrong thing that we stop paying attention to the people we love.

I wish I could tell you that hospitalization was the beginning and end of my eating disorder, but it wasn’t. I wish I could say that metastatic cancer finally made the number on the scale irrelevant, but it hasn’t, or that knowing how much I need this body has made it easy to love without conditions. Nope.

Maybe that’s why I wanted to write this now. I have a feeling there are other women carrying contradictions they’re embarrassed to admit. Women who know better and still struggle. Women whose bodies have changed through illness, menopause, medication, pregnancy, grief, treatment, or simply time, and who are discovering that understanding what is healthy doesn’t automatically silence everything we’ve learned to fear.

I don’t have a lesson to give you from the other side because I’m still in it. I still get anxious before I step on the scale. I still hear something entirely different when someone tells me I look good. I can desperately want my body to carry me through cancer and still care about the size of the pants I wore yesterday.

And yet- after writing every word of this- there is still something I want to tell you. I normally wear a size 6, but yesterday I fit into a size 4. GEEEEZUS, I said it. Did Devil Wears Prada teach us anything?!

I keep thinking about the woman who noticed me when I was thirteen. She didn’t know everything happening inside me, she couldn’t have. She only knew something wasn’t right, trusted what she was seeing and did something about it.

I think about her differently now.

Somewhere there is a woman reading this who recognizes herself in me. She understands the negotiations around food, the number on the scale, or the embarrassment of admitting that she knows better and is still struggling.

There may also be someone reading this who recognizes the woman who noticed me. Someone who is watching a daughter, a friend, a sister, or someone she loves insist that everything is fine while something inside her says it isn’t.

I don’t want to tell you to stop noticing. Being noticed mattered to me, it was an act of love.

I also wish what happened afterward had taught that thirteen-year-old girl that she deserved that kind of care.

Decades later, I think I’m still trying to separate being seen from being judged, especially from myself.

Thank you for being here and listening. 

Also, this new print felt right. 

Love you,

More butter, please