Chronic Pain, Degenerative Body, and Future Fear: an invitation for honesty without pity
By Layla Zbinden
This is an invitation for the expression of honest fear, for honest acknowledgment of what I can no longer refuse to acknowledge. For my chronic pain, my persistent and unrelenting autoimmune disorders – ever multiplying, ever morphing, the deterioration of my bodymind, and the futures of my spirit.
It’s a familiar story. I wake up every day in pain. I navigate the world and through every space, I am in pain. Across time, my pain has become its own rhythm – another bodymind song that I have had to learn to listen to.
The pain comes in waves. Always waves crashing relentlessly eroding like the cliffs I stand on top of when the wind is strong and the sun is setting. Like the cliffs that overlook the ocean and the moon is rising, growing more brilliant its silver like the patches of psoriasis that flake and fall off of my body. Did you know that the moon is connected to the waves? That their pull on this ocean is invisible – unless you know where to look. Like my mind pulls on my skin which tugs at my joints. Seemingly distant unless you know how to listen to the rhythm of my waves crashing. Relentlessly eroding.
I come back to metaphors of the ocean and the moon. A cyclical energy exchange between this earth and the sky. Invisible. But not if you know where to look. Not if you notice the high tides and the low. This beautiful rhythm, this cry for help, my joints and muscles and nerves screaming at me until I give them the tender attention, they need in order to survive.
Let me tell you a secret: I am drawn to the ocean in times of peril. In times of crisis. I think it is my tears returning home. And right now, half of a page deep into this, my elbow is begging me to stop, my wrist is resisting, but this is one instance where my spirit has the spotlight. Do you know what it feels like when your body has needs that contradict the desires of your soul?
Rheumatoid arthritis – this means my joints to become too inflamed to use-
stiff restricted on fire;
while doctors refuse to examine me
because my 25 year old body
is too young
for this pain;
my psoriasis shines brilliantly over overused joints – screaming
to the world that there is
My joints crack every morning, ball and socket joints grinding away at themselves, my hips are marked with shiny red patches of skin cells that are reproducing too quickly for their own good. I find my hand on my hips massaging the muscles around the joint only to become possessed, scratching away at the red until I am left bleeding. I haven’t slept in days this excess – be it excessive repetitive use of one part of my body, or excess of skin cells creating irritation – mirrors another invisible excess of this manic mind. Autoimmune disorders come hand in hand with bipolar. Mind, joints and skin turning on themselves, all too much, all suffering in excess. But excess can be beautiful sometimes, no? Aren’t I always already in excess? Isn’t this brown queer body the epitome of excess? My spirit refuses to follow this turn. My spirit finds solace in excess. Its favorite dance is to this rhythm that my body has created.
This is a romantic rhythm.
This is not romantic.
This pain, this daily pain, this crip body being broken down is hard. It fucking sucks. This is fucking hard.
I hate living in pain every day. I hate that I have to take Ibuprofen with my breakfast to make it until noon before becoming overwhelmed with exhaustion, looking calmly around me for surfaces to lean on so I do not collapse.
I hate that I know that every ounce of pain I feel is by body breaking itself down, degenerating. That this damage is only going to get worse. This pain is only going to get worse. I will wake up in pain every day for the rest of my life. And it will only keep getting worse. And I do not know what to do about it.
I go to the chiropractor when I can afford it. I take baths at my friends houses because I only have a shower. When I end up taking showers I stretch, I breathe, I splash essential oils all over the walls inhaling the steam hoping for release of something. I take the anti-inflammatory, I use the steroid creams and keep the psoriasis at bay until it no longer wants to be contained, I move slowly, I acknowledge this pain, this body, my body, their needs, their quiets requests for rest, their screams for breaks and pauses and breaths. I do the shit.
But while my body grounds my in the present, I am always wondering about the future. I am afraid of the future. I am afraid of what is to come, afraid of what the future of self will have to endure daily, afraid when doctors tell me, when elders tell me, when strangers tell me that
for this pain.
Layla Zbinden (they/them/theirs) is a queer, nonbinary, Arab scholar/activist. They received
their BA from UCSD in Psychology with a minor in Critical Gender Studies and went on to
receive an M.A. in Women’s Studies from San Diego State University. Layla’s thesis, “Path to
Self, Path to Home: Arab Diasporic Reflections on State Violence, Authenticity, and Belonging”
which used autoethnography/ethnographic research methods and decolonial feminist
methodologies as a ways to explore the multiple ways queer Arab Muslim bodies experience
surveillance and cultural authenticity. Between the interpersonal/familial surveillance
manifested in Arab-Muslim households and the structural surveillance enacted against bodies
racialized in a post-9/11 context, they explored how the state weaponizes those forms of
control and actualize a fullest self.
Layla will start their PhD in American Studies and Ethnicities at the University of Southern
California inshallah August 2019, where they will continue to explore the various ways that
technologies of state surveillance ultimately seeks to control communities of color, and what
this means for the futures of activism and liberatory potentials of technologies of the state.
Their desire to crip and queer the very technologies that surveil, murder, and disappear Arabs,
Muslims, Black, Indigenous and other communities’ stems from a deep investment in decolonial
feminist, queer of color, and disability studies frameworks. Methodologies – the frameworks of
how and why we create the knowledge that we do, of which knowledges we uphold and why –
is an integral component to Layla’s academic writing and the work they do. They seek to push
past conventional understandings of what can and cannot count as academic writing, often
integrating raw prose and tapping into visceral affective responses as modes of learning, and
unlearning. Layla’s work, their pedagogy and the essence of their projects
(academicpersonalpolitical, as these all intersect) is fundamentally rooted in a transnational,
decolonial, and (Arab) Feminist frameworks, ultimately rooted in material resistance.