How to Write About Your Body Falling Apart (When the World is Falling Apart)

Things Fall Apart

It was 2016. 

Trump was about to be elected, and my fifth book, Field Guide to the End of the World, had just come out. The book’s theme of apocalypse seems prescient now. 

Then I got the worst news you can imagine: I had cancer, and not only that, it was terminal cancer (Stage 4). I was dying of cancer. A personal apocalypse.

I had gone into the hospital with stomach flu-like symptoms and they decided to run a CT scan. But when the ER doctor came back to see me, he didn’t meet my gaze. “This has nothing at all to do with your current symptoms,” he said, “but you have all kinds of tumors in your liver, indicating Stage 4 liver cancer. Book an appointment with an oncologist right away.” 

I did go to an oncologist, who, after several tedious, painful, and radioactive tests, told me there was no possible treatment for the kind of cancer I had. He, too, did not meet my gaze. He recommended a grief therapist to help me prepare for the end. I was 43 years old. 


The Beginning of the End

I met with a grief therapist, who recommended planning a funeral playlist (which I did) and meditation, and told me I was much more prepared for death than many of her older patients, which was somewhat comforting? She suggested I do what I could to feel like I was in control. So I did. I took up photography, taking pictures of cherry blossoms, apple trees. I started a garden, planted trees and lavender I wasn’t sure I would see bloom. 

I started writing the poems for the book that would become “Flare, Corona,” with some pieces about getting a terminal cancer diagnosis, strange solar weather, eclipses, mystical signs in the night sky. A coyote on the road in front of us on the way to the ER. Blood Moon references. I found that  writing about yourself – something I’d basically avoided most of my life as a writer – when your body is in a vulnerable space is hard. You have to tell the truth, avoid self-pity, and a part of you sees your own body as “other.” I pitched a panel for AWP called “Mutant, Monster, Myself” about writing the disabled and chronically ill body. It’s easy to see yourself as a mutant, when, well, you are one. It’s easy to picture yourself sprouting a tail, or wings; it’s easier than imagining yourself in a seeded radiation treatment, or getting chemo. I wanted to tell the truth, but part of me was leaning into mythology. I thought of Lucille Clifton’s terrific poem “won’t you celebrate with me,” and her famous last lines: “come celebrate / with me that everyday / something has tried to kill me / and has failed.” Lucille Clifton, along with Margaret Atwood and Louise Glück, taught me about writing persona poetry to illuminate women’s experiences. And persona poetry was almost all I wrote for five books – until this one.

I caught pneumonia and postponed cancer treatments. During that time, I was able to schedule second (and third) opinions. And surprise – the new doctors thought these tumors could be a less dangerous kind, neuroendocrine cancer, which is very slow growing, or perhaps they were indolent or even benign. Maybe the tests had been wrong. I spent more time in tubes and getting blood drawn. The cancer blood work numbers were much better this time. Great news, right? I stopped planning my funeral. 


In the Meantime

Six months later, the doctors decided the tumors were indolent, which meant they were less likely to kill me. I stopped worrying, beyond the need to have an abdominal MRI every six months to make sure the tumors didn’t grow, multiply, or spread. Six years later: they have multiplied, and grown, but they haven’t spread yet.

But remember those stomach flu-like symptoms? They returned with a vengeance. I vomited several times every day. I lost fifty pounds and couldn’t keep down Jell-O. After months of ER visits and countless tests, an urgent care doctor looked at my eyes closely and said “I think this is not a virus. I think this is neurological.” 

When I went to the ER the next time, an empathetic female doctor asked me about neurological symptoms, and noted my eyes were moving in a funny way. (This is technically called nystagmus: rapid, uncontrolled eye movements indicating some kind of brain damage.)  “I’m going to order  some tests for you right away.” The hospital’s chief neurologist came in after a brain MRI and asked me to stand and turn, and they repeated the eye tests. I was experiencing severe vertigo, caused by brain damage in my brain stem, which showed up on the MRI, along with some other “spots” of inflammation. They had ruled out a stroke, he said, and his best guess was that, although this was not a typical presentation, I had multiple sclerosis. 

I was officially diagnosed with multiple sclerosis and faced a host of challenges learning to walk and talk and swallow again. I couldn’t walk without aid. I couldn’t read – very distressing for a writer and critic who was used to reading five or six books a week – and my speech was slurred and uneven. Not only that, the right word would appear in my head but wouldn’t make it to my mouth – “seat belt” became “hair brush.” This is called aphasia, and it still hasn’t gone away. 

Although MS seems like a terrible diagnosis, it made a lot of sense to me considering all the “clumsiness” I’d experienced in the last few years. After all, it was better than terminal cancer, I thought to myself. (Although later, when I looked up “most common causes of death” from multiple sclerosis, number one was suicide, and number two was UTIs. Grim).

How would I write with this new language – or lack of language – and accurately reflect the experience? I knew several famous poets, including one of my poetry heroines, Rita Dove, has MS, but it was hard to find poems where they wrote about it directly. I was going to have to approach this book in a different way. Maybe it wasn’t about dying, but accepting that…well, things, including your brain, can fall apart. 


Things Fall Apart, Part II

It was a catastrophic time for me personally, but the whole planet was about to go through a once-in-a-hundred-years pandemic as well as climate disasters, wars, and protests.

In November of 2019, I started reading articles about this new coronavirus, the doctor jailed in China. I thought: they won’t be able to stop it. Coronaviruses, I knew (I had a B.S. in Biology and a keen interest in virology, including Ebola and HIV) mutated fast and were extremely hard to vaccinate against, prevent, and treat. Eventually it might become like other coronaviruses in circulation: a cold. But it certainly wasn’t acting like one. I tried writing poems in the voice of the coronavirus. I researched the 1918 flu and the Black Plague and wrote poems that started with, “In the Plague Years.” I started wearing a mask before the CDC told us to and told all my loved ones to do the same. I went to a party that required a ferry ride in February of 2020, to celebrate a poet friend’s book. “Let’s not go up on the ferry,” I said to my husband. “Let’s stay in the car.” And that was the last time I went to a social event for a very long time. 

The very first known American Covid-19 patient went to a hospital I had just visited. People died in local nursing homes, and then the EMTs and firefighters who visited the nursing home died too. People called Seattle “ground Zero for coronavirus” in the news. Later, protests about racial injustice started around the city. For a while, every time I turned on the news, something was on fire in Seattle. My folks in the Midwest kept calling to make sure we were safe. (What is “safe”?)

My poems started changing, and Flare, Corona changed shape. Egotistically, I wondered how the world’s falling apart related to my own body’s patterns. Was the apocalypse inside somehow connected to the apocalypse outside my door? People were angry. I was also angry – in fact, the inflammation of neural cells that causes MS is a kind of internal anger. If the world was on fire, so was my brain. 

The isolation required by the pandemic was changing my world. Restaurants shut down; grocery shelves emptied. Yes, people were angry. I had felt the anger, the resignation, the pessimism that sprung from Trump’s election; the rising social tensions of class, race, and immigration status not just in America, but around the world. A weird return to right-wing rhetoric everywhere. Like my brain, was humanity having surges of inflammation? Was it stumbling towards a real life apocalypse? Wildfires, earthquakes, tsunamis: signs of the earth itself growing inflamed? 

I was learning how to navigate the world as a disabled person, as a person with a new diagnosis (to go with the ones I’d had since childhood: asthma, a genetic bleeding disorder, a primary immune deficiency, abnormalities like a horseshoe kidney and twinned uterus.) I was drawing lines between pre-Trump and post-Trump existence.  Before the diagnosis, and after. Before the pandemic, and after. 


Can Poetry Heal Me or the World? 

Writing poetry is said to be healing; it can be. But when I write, I’m not sure I’m being healed as much as trying to process and document what happened. Is this my new reality? Am I really dying? Am I going to be in a wheelchair forever? Will I ever be able to work again? Will I be able to go to a social event without a mask and without fear ever again? Will my words return?

The things I’ve experienced and written about in this book, Flare, Corona: solar flares and lunar eclipses, cancer diagnoses and chronic illness diagnoses, pandemics and political problems – these are universal experiences. We all experience the vagaries of sun and moon, death and dying, loss and fear. The last few years brought home to many that they and their loved ones are not immune from medical disaster. 

Our country doesn’t want to talk about that; it doesn’t want to accommodate the disabled, or even see or acknowledge us; they don’t want to talk about the number of deaths from coronavirus, or how many people have been hammered by Long Covid. America is a country that loves to shove troubling thoughts under the covers, into the garbage, into the background, and go back to what it cares about: progress! making money! think positive! Poets have never been good at toeing the party line, anyway. The late poet Linda Pastan had a great poem addressing America’s toxic positivity in “Why Are Your Poems So Dark?”: “Isn’t the moon dark too, / most of the time?…Or did you mean to ask / “Why are you sad so often?” / / Ask the moon. / Ask what it has witnessed.”

You can’t write about sunshine and rainbows all the time. Or in my case (see my first five poetry books,) superheroes and supervillains and fairy tale characters and apocalypse – sometimes, you have to crack yourself open, write the real, vulnerable truth about your life in your own body. It’s hard. And maybe it’s healing and maybe it isn’t. Can poetry save the world? Can it save you, or me? No, but it can be a way of documenting it. Even after we are gone. Draw a map of your body, your world, the peculiar wonders of eclipse and the collapsing of structures, political, bodily. Our bodies are a black box, and so, in some ways, is the world. We cannot know everything, but we can feel our way forward, meet each other’s gaze, writing as we go. 


Jeannine Hall Gailey

Jeannine Hall Gailey is a poet with multiple sclerosis who served as the Second Poet Laureate of Redmond, Washington. She's the author of six books of poetry: Becoming the Villainess, She Returns to the Floating World, Unexplained Fevers, The Robot Scientist’s Daughter, Field Guide to the End of the World, winner of the Moon City Press Book Prize and the Elgin Award, and the most recent, Flare, Corona from BOA Editions. She has a B.S. in Biology and M.A. in English from the University of Cincinnati and an MFA from Pacific University. Her poems appeared in The American Poetry Review, Ploughshares, and Poetry; her essays have appeared in Salon and The Rumpus. Her web site is Twitter and Instagram: @webbish6.

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