How Do You Love Your Chronically Ill Body Even on the Bad Days?

One

That night, I dreamt my body had become lead. My muscles swirled in silver pools, and as the sun rose, I watched them harden. My body became landscape, valleys and rivers and hills and one by one, each moving piece became stiff and still and stagnant. As it happened, I stood nearby and stared.

When the dream broke, I unpeeled myself from my twisted sheets and dressed for work. I did not remember the specifics of the dream, only the leftover feeling — that of a body experiencing an unbecoming.

Four days later, the doctor at urgent care told me I had a mild cold and sent me home. I listened as my parents and friends reassured me (me, the always anxious) that it was a passing virus. Water, they said, rest.

Five days after that, a doctor in a small lakeside town ordered a collection of tests and scheduled a chest X-ray for the following morning. I am being cautious, she said, there’s no cause for alarm.

When asked, I fought to not speak in poetry. A tiny row of fire ants is crawling down my spine. There is a dirty dishtowel in my abdomen. Someone spilled thumbtacks inside the bone of my hip.

No, they’d say, describe it. Rate it, one to 10. Where does the hurt start. Where does it end. How long. How many days. What times. What muscles. What parts. No poetry, just facts.

Lead, I’d think, the silver pools, I’d want to say. Something is wrong, I’d say instead.

Two

When I am a mother, I am going to ask my children big questions. Then I will write them down so that someday, when they ask me the same big questions, I can hand them the right answers.

Dear child, where in your body do your good days live?

Tell me 10 ways you are strong. Now 10 ways you are smart, and creative, and flawed, and brilliant and messy and magical. OK, now tell me again.

Dear child, what can your arms do? How do you know when your legs are ready for rest? What is your belly talking about when it makes noise? What does it know?

What does your body need? Tell me what you see. Tell me what you hear. Tell me how you already know how to love yourself. Tell me again. Tell it again, and then remember that you know how to.

This year, at Thanksgiving, my littlest cousin watches me eat bread. Her painted fingernails pinch her bread between her fingers and wait till I bring mine to my mouth. As I do, I place my hand on the swell of my stomach and breathe in. Forgive.

I am four months into a deep sickness. Later, I will fall into a pain-filled sleep on the couch while my cousin bounces around the room, drumming her hands on a stomach full of food.

Later, an older relative will lean in and whisper in my ear, You should exercise more, we can all tell you are gaining weight.

Three

The first diagnosis is pneumonia. I tell my doctor I’m going back to work anyways, that I have to. She tells me if I do, I’ll be in the hospital in a week. She tells me this is serious.

The second diagnosis is Lyme disease. They do not know when I first contracted it, only that I have it now. I am prescribed 30 days of antibiotics and told we’ll reassess after that. Six months after diagnosis, I cry hard in a stranger’s kitchen. She was diagnosed with Lyme years ago. This will be the fight of your life, she tells me. I am 24.

The third diagnosis has something to do with folic acid and my body’s ability to process it. I am given a supplement and told to eat carefully. Unsure what that means, I try and cut out sugar and dairy and eat a lot of veggies. Regardless, I can tell I’m gaining weight. My body feels swollen and stiff. I do not recognize it.

The fourth diagnosis is non-celiac gluten sensitivity and I am told to change my diet, avoid gluten, and take more supplements. For weeks, I literally dream of pasta and bagels. I spend my paycheck on fruit and veggies and meat and I stand in the shower and watch the water run off the thickness of this new strange body. Everything aches.

The fifth diagnosis is small intestine bacterial overgrowth and probably happened because of all the antibiotics. In short, it means my body doesn’t process food right anymore. Diet, supplements, time. I spend the day in the hospital breathing into a strange tube and later, when I get the letter saying I tested positive, I barely shrug. Whatever, I think, at this point, who cares.

Four

Here are the questions I wish I had been asked when I was a child, back when I knew the answers:

How do you love your body on bad days?
How do you love your body when it changes shape?
How do you love your body when in constant pain?
How do you love your body when you can’t get through a work day? How do you love your body when others tell you not to?
How do you love your body when beautiful looks different than you? Tell me, how do you love your body (no matter what)?

Five

One afternoon, in an apartment in New York City, a girl I love takes off my shirt and traces her finger across the naked of my skin. Her hands rest on my stomach and I flinch.

Don’t, I say, embarrassed. My stomach is round and swollen and I hate it. I hate the way my body has filled into spaces I didn’t know there were. I hate the way I feel weak and pale and shaken to my core. I am not this body, I think, I am not worth loving.

She pauses and looks at me. There is light stretching through the blinds. The sheets lay tangled once again. In the stillness, she does not move. Her hands stay where they are.

I love this, she says, her hands on the round of me. I flinch again and look away. No, she says, look at me, I love this.

Her hands move to my thighs, I love this, she says again. Then, my shoulders, and this, I love this.

Now, my face, and this.

Back to my stomach, And this, and this and this.

In my mind, I see the body landscape again. The valleys and rivers and hills. Tentatively, I borrow her words and speak them there. I love this, inside, I feel something start to move, and this, one by one they are moving, and this and this.

Six

In two months I will celebrate my illness anniversary.

I am planning on (gluten-free) cake. And balloons. And lots and lots of gratitude.

I see no other way but this. For almost a year, my body has not been mine. The blood tests, the diet changes, the doctor appointments, the waiting, the fear, the hoping, the weight gain, the pain, the pain, the pain.

I have watched my body shift shape beneath my hands, watched it become new, felt it act old.

For almost a year, I have heard the words “sickness” and “chronic illness” and I have fought and fought and ached and hoped and come out on the other side.

Now, I know there is no side but this. No way, but surrender. No grand gestures of healing, just quiet moments repeating I love this.

Perhaps I will be sick another year, or maybe 10. Perhaps our ideas of wellness and illness are all mixed up anyway. Perhaps the goal, in whatever we face, is to take what we have and make it into our new normal. To love anyway. To listen. To ask ourselves big questions, and remember we already know the answers.

This blog was originally published on The Body Is Not an Apology.