The story of this book, how it came to be and why, is inseparable from the story of our friendship.
Three years ago, one of us got sick. She felt like her identity—who she thought she was as a woman, sister, daughter, partner, and friend—had been destabilized. It seemed that the worlds around her were expanding, with graduations and new jobs and new cities, while chronic pain and fatigue were shrinking her own world to fit inside her bedroom walls. She wanted to hide, even from us, her best friends, but the disease progressed and hiding took energy she didn’t have.
She began to talk to us, on the phone or in person. When she couldn’t climb out of bed, we piled in next to her just as we had at our sleepovers, age six, twelve, twenty. She shared her strange new life, and we in turn articulated our own confusion and fear. Together we voiced our most vital stories: One of us lives with chronic illness, one of us cares for a sick parent; one of us is a rape survivor; one of us has watched relatives trapped in a state between life and death. We had known and loved each other for most of our lives, yet we were still learning to be fully vulnerable.
Within the small circle of our friendship, we began to question the way we had been taught to see our bodies and our health. We reviewed our experiences with fresh eyes, integrating our four stories and reconstructing their meaning. We talked about being women, our bodies living up to our expectations, and about living up to the expectations of others. While much remained unclear, it seemed that identity politics, especially around gender and sexuality, were invisibly regulating our lived understanding of health, and that troubled us.
The leap from having these conversations to deciding to make a book felt natural, so much so that we can’t remember exactly how it happened. Our love of books led us to run our high school newspaper together, which was the first time we worked as a team of editors. Books were our first companions and our favorite teachers. Books were what we took to bed. They were what we took to waiting rooms. To the bathtub, to the hospital. Books have the power to transport the mind to places the body cannot go, to connect and unite a disparate audience.
On a visceral level we also knew that when the mind or body is in flux, it feels important to create something permanent, something constant. Pages won’t change on you if you need a break. They can be re-read if brain fog or pain detracts from the first read. There is no need to be awake or asleep at regulated times, as with online forums or in-person discussions. An anthology in particular allows the reader to easily “dip in” and “dip out,” making the content more accessible for those whose time and concentration is limited. The work of collecting, evaluating, and formatting is done for the reader.
This anthology became our way to develop an accessible dialogue among artists with very different personal experiences who were working to understand identity in illness. In 2014 we put out a call for submissions responding to the theme of “gender and illness.” We gained twenty-seven incredible teachers who have collectively informed, and in many cases reshaped, our understanding of this theme. We learned that patient narratives cannot only be about the “illness” within the body, the struggle to fix and heal what is broken in flesh, blood, and bone. Patient narratives are always tethered to the living conditions and social structures that surround and construct illness, and the tension between the desire to heal and the push to redefine what needs to be healed. In this sense we see Uprooted’s content as more than personal, but also as political.
At the same time, personal narratives are also just that—a window into an individual’s private experiences. Uprooted’s writers describe what it is like to mysteriously lose muscular functions after coming to terms with a sexual trauma; to slip into the depths of suicidal ideation during the final stages of a pregnancy; and to make public an eating disorder that has resulted from years of internalized pressure to look, act and eat a certain way. We learned what it feels like to go home to a partner with a new, terrifying diagnosis, and to begin the messy process of redefining partnership roles. We talk about death. We try to live on after death.
To “curate” means to take charge of and organize art—an essential process for an anthology. It also means to “take care of” more broadly, and if you do a quick search for synonyms you will find words like “warden,” “archivist,” “protector,” “restorer,” “guardian,” “defender,” and “keeper.” Each of these words captures a different aspect of our collaborative, multi-year editorial process. We are curators—people who have assembled different stories, perspectives, and writing styles, who have organized them into a single showcase, and who feel fiercely the weight of our role as keepers.
In the anthology we choose not to delineate based on theme, disease, or medium, though the order of essays, poetry, and fiction follows a loose narrative arc. We hope you will approach the collection as a living document, something to be shared, compared, countered, revisited, and reconciled. Our writers are old and young and from around the country and the world. They are teachers and nurses, professors and librarians. They are mushers, Scrabble players, roller derby blockers, and wildfire fighters. They have given you a part of themselves.
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