THE PAIN IS IN MY SPIRIT/ OR THE IMPOSSIBILITY OF FINDING A HOME FOR MY CHRONIC PAIN

This piece was originally written and published on November 25, 2018 on www.queerfutures.com by sav schlauderaff

Chronic pain doesn’t exist neatly within the body or the mind. The pain I feel is energetic, it is a pain with no set home in or of my body. To have pain and illness in your nerves feels like a constant magic trick. That the day I make my appointment because of the searing pain in my face, has migrated to my wrists, my hands, my thighs, my chest the next. I can maybe appreciate the mischievous and unpredictable nature/ that finding the humor in my pain has been the only way to survive. My silly bones that can’t stay in place, my silly heart short circuiting, my silly face relaying pain signals out of the blue. I feel like I am chasing the ephemera of a reaction/ wisps of smoke in the air. I am at a constant lack of words, and yet also drowning in the over-abundance of them. aching, throbbing, stabbing, radiating, pulsating, constricting, pinching, burning. A symphony of ways for my spirit to say I am hurting, please listen. The only way I can explain this pain without a locus, without a home, is by understanding it in connection to my trauma. But my holistic bodymindspirit trauma/ my spirit is crying, is screaming, is causing a ruckus in this vessel called my body. have you too felt that deep pain? that weighted pain the pain that demands to be attended to is this why my heart got sick? and my brain? is this the reason for my aching joints? is my trauma too much to bear? pain is energy, is a shapeshifter, is cyclical so many ways to name it so can it be captured? This lack of distinct origin makes my felt-pain invisible to medical professionals. I say felt-pain, because often what I am told is that it is in fact imagined-pain. As if pain can be unreal. As if it was “just in my mind” that it couldn’t harm me. This real/unreal binary is clearly mapped onto the body/mind binary-- one that is starting to fold. However, if my chronic pain is both real/unreal and also of my body/mind it is also then falling into the open wound of the / The shock of the / a slash on the page, a long line of black ink. I see it mirrored in the scars on my arms, my ankles, my thighs. How can we learn to inhabit the space of the / much like inhabiting the - or the (), or the fondness many have found in the ; The utilization of the emotion we place onto these symbols in many ways is unpronounceable although they do have names. I often find myself excessively using //////// as I feel it gives me a space to process my thoughtfeelings, but also a way to express my groans and grunts and ughs and ahhhs. Or the favorite sound that gets pointed out by my friends of the mmmmmm? These sounds are moreso vibrations I feel rather than hear or say, because my chronic pain all too often disallows me to talk as my jaw tightens, becomes heavy, my face too swollen. The vibrations, like my pain, like the / of my writing are not easily communicable. Perhaps even untranslatable, untreatable, undiagnosable, unassimilable. Chronic pain is not treated like physical health. It is a question mark, a pause, a skeptical look from your medical provider, an impatient sigh from your friends and family, a searching look from strangers when you say disabled. That they too are trying to locate the pain on my body. They are trying to determine which side of the binary to place me on. All too often they take a look at my chart, which is much more populated with histories of mental illness and disabilities than physical ones / and oh don’t I look so strong, and I was so physically active, and the numbers attached to my body say that I am very “healthy.” And it becomes a game of chance that they will be able to capture my moments of quantifiable “unhealthiness” or “illness” during my visit. Then suddenly the energy in the room changes, I am moved over to the “body” side to treat a singular symptom. Do any of use know the cause yet? Is there one? Or many? How I wish I could transfer the energy of my pain to you. Would it be “real” enough then? Would it be quantifiable? All this pain-energy is draining and I am so tired. I will make my way back to / //////// Give me timespace to rest. And then we repeat.

---

Sav is a trans, queer and disabled PhD student in Gender and Women’s Studies at the University of Arizona in Tucson. Their research in critical disability studies questions the ways chronically ill individuals engage with mainstream medicine, biotechnology, biohacking and alternative forms of healing. As well as the interconnections between trauma, chronic illness, pain, (embodied/felt) memory, and self care/community care for the bodymindspirit. Sav utilizes their academic training in genetics, molecular biology and gender studies with autobiography, poetry and new media. They graduated from San Diego State University in 2018 with their M.A. in Women's Studies, where they completed their thesis "Rejecting the Desire for 'Health': Centering Crip Bodyminds in Genetic Testing"--bridging their undergraduate degrees in Genetics, Cell Biology and Development (GCD) and Gender, Women, and Sexuality Studies (GWSS) from the University of Minnesota--Twin Cities. Beyond, and intertwining with, their academic research, Sav is passionate about education, activism and community building especially around the LGBTQIA+ communities, trauma/PTSD, eating disorder recovery, and disability--in addition to the multiple intersections of these topics and identities. They always strive to create accessible, intersectional, collaborative and intentional workshops and lectures. They have worked to create interactive workshops, classrooms, internship programming, and mentorship connections with undergraduates and high school students centering the values of radical vulnerability, kindness, listening, and meaningful reflection. Outside of research, they are currently the Graduate Assistant at the Disability Cultural Center, a Safe Zone facilitator at the LGBTQ+ Resource Center, and a member of the Disability Studies Initiative at the University of Arizona. Sav is a co-founder of "The Queer Futures Collective" where they experiment with different forms of writing, workshops, and performances in-person and online. Sav integrates reflective journaling with theoretic work in their Sunday Sentiments articles, and creates accessible teaching materials and handouts that are free for users to download.