Essay: “I Was Breath, Muscle and Bone.”
Words and Photos by D. Allen
When I was old enough to be alone in the central North Carolina woods where I grew up, I took long walks along Dry Creek and up the hill to the grove of evergreens tangled with blackberry brambles. I wrote my first poem under beech trees by the creek. I memorized different textures of ground along the path: here, deer had made beds of rusted pine needles and etched narrow trails through the chest-high Queen Anne’s lace; there, underbrush gave way to red clay and the jagged teeth of exposed quartz.
Though faint road sounds reminded me of my proximity to the human world, in the woods I felt like just another wild thing. In those moments, the societal expectations that worked to diminish my body’s power and complexity receded into the background. I also knew that the non-human beings around me weren’t just mirrors made to reflect me back to myself, and I learned to witness them fully in their own right. Among the trees and rocks and deer, I was no longer small or weak or she or any of the other things I had been given that didn’t match my self-perception. I was breath. Muscle and bone. Blood. Potential and quiet attention.
A few years ago, a new friend mistakenly described me as a person without a gender. I thought of how I felt in the woods as a child, how I still feel in the presence of birds and trees and bodies of water. My gender is not absent, missing, incomplete, or undeveloped. It is so present, so complete, that I haven’t found a word for it in my language. Instead of neither/nor, it is both/and. Correction: all/and. My genderqueerness is defined by constant evolution.
Likewise, my nature explorations continue to evolve as my body and mobility change due to Ehlers-Danlos Syndrome (EDS), the degenerative connective tissue disorder I was diagnosed with in my mid-twenties. Now I often walk with a cane and loop around my urban neighborhood picking up rusted objects and stray bird feathers. I grow a small garden with the help of friends, and I recently learned how to raise monarch butterflies inside my tiny screened porch when I was barely well enough to leave the house a couple of times a week. This body requires constant adaptation and I have come to see my disability as inextricable from my queerness. Given the historical and ongoing ways in which queer and trans people have been pathologized, I know there is risk in placing gender identity and queerness alongside disability in my writing and other artwork. But for me, all three identities have overlapping and unique aspects, and all affect my relationship with my body.
Having a 32-year-old body that feels decades older often fills me with grief, frustration, anger, shame, and resentment. While I would never give up my queerness or genderqueerness even if such a choice were possible, I do not subscribe to the belief that illness imbues my life and art with a deeper meaning accessible only through this particular kind of suffering. EDS, with its hypermobility, joint instability, easy bruising, poor wound healing, and unpredictable periods of debilitating pain and fatigue, has certainly shaped the metaphors I use in my poems and the elements I’m drawn to in my visual work, and, yes, being chronically ill has deepened my sense of empathy, compassion, and social responsibility. But I make art about illness because I need to put it to good use if it’s going to take up residence in my house—not because I believe being sick has any inherent value on its own or because I have no other subject matter to explore.
The work that grew into my first book, “A Bony Framework for the Tangible Universe” (The Operating System, 2019), emerged when I was first diagnosed with EDS in 2012. I had spent a few years seeking a logic to my seemingly unrelated symptoms. Scans came back clear, blood work came back negative, and I was always told that I was either fine, hormonal, or mentally ill. The EDS diagnosis initially offered relief in the form of clarity, but as I learned more about the condition, I needed a way to process this new, terrifying reality. I turned, as I had since that moment by Dry Creek, to writing. I didn’t plan to publish the resulting poems or know I’d spend six years making a book of them that would include not only poems but also lyrical essays and artwork. I just wanted to regain some semblance of control over my own narrative. If I couldn’t literally heal myself through language, I would try to see my art as a spiritual repair of the damage sustained by my body. Linkages between individual pieces emerged as I began talking about my new work with other artists. After a year I started to envision the work as a standalone project, and somewhere after that, more out of optimism than quantity of pages, I found myself calling it my book.
The book became a small room I could enter when my physical realities were too much to bear. It wasn’t exactly an escape or even a clean slate, but it was a space where I could lay out the truths and desires and facts and feelings of my body and put them in a new order. Writing was part of my process but so was reading, witnessing, drawing, sleeping, having sex, cooking food, going to physical therapy, caring for a friend after surgery, and walking as far as I could when I was able. Though it originated as a container for pain and grief, the book had become a way to relearn my body’s resilience. I could not explore physical suffering without also documenting pleasure. Now, I see the finished book as a love letter of sorts—to literal lovers, yes, but also to my broader constellation of friends and family, the places and non-human worlds I have known, and even my body in all its cycles of breaking and repair.
As I started in on what I hoped would be the final draft of “A Bony Framework” in fall of 2017, I decided to write down everything that kept me from wanting or being able to finish the book. The truth was simple but it surprised me: If I finished the manuscript and went on to publish it, my illness would become inarguably real. A tiny superstitious part of me believed that I might still wake up one day to find my joints and tissues in perfect order, the pain gone for good. On paper, I could see the absurdity of that thought whose pull had been as strong as gravity for years, but it helped me recognize that the only work left to do was what I’d done my whole life: trace the wooded trails and grassy clearings of my real and imagined embodiment one final time, listen to stones and leaves and creatures with curious attention, and trust that I would know when to make my way back home.