I’ve been up since midnight and I’ve written 1300 words about a trip to California I took last year and also the last year. I send the first few paragraphs to Greg, “is this anything?” He messages back that I am a poet and I need not forget it. Hours later we’re workshopping via voice memo between New York and New Zealand. I’ve been avoiding this essay for months. I’ve been avoiding asking myself questions I don’t know the answer to. I write about the Pacific Ocean and monarch butterflies. I write about evolution and creating. I write about why I withhold what I need and want from myself.

I’ve been to the edge of myself and back again, and every time, I return different. I return remade, barely recognizing who I was before all this began. After my first stay, I was different. After my first surgery, I was different. After every surgery, different. For more times than I can count, I end another admission at the Clinic, again. Each of these hospital stays takes something from me, pieces of myself that don’t survive the nights, the frustration, the pain. Letting go feels less like strength and more like survival—like the fee for the ferryman.

I have made so many plans and goals that I’ve never seen. I am beholden to my body and it won’t let me forget. Trips I’ve tried to take, money I’ve tried to save, cities I’ve tried to live in and nothing. Nothing except an aging, ailing body. An abdomen I don’t recognize as human and a failing set of intestines.

I spend my days touring my apartment with new eyes, imagining what it would be like for a friend who uses a wheelchair to visit. I assess the accessibility of the space, picturing how we’d navigate together, share experiences, and find solidarity in the everyday frustrations and triumphs of disabled life. I long for that kind of connection—for my access needs to be seen without explanation and to share unspoken understanding with someone whose reality mirrors my own.

My experience with queerness and disability are inextricably interwoven, an interdependence of present and future self. Both identities bloomed when I decided to be my best; not anyone else’s ideal, but my own. I was not given a choice about my body, my mind, or my heart; there was no failure, no shortcoming. Anyone can become disabled, most will. And anyone can be queer if they allow themselves authenticity.

Freedom is seen as autonomy, mobility, and independence in society. In contrast with the disabled personal reality that interdependence is instead necessary for survival. Freedom, in this reality, bears the weight of need. Because of the body, freedom becomes a fragile state. To be reliant on others’ care and support to live independently gives the disabled person access to a freedom they can only have with help.

My new, custom wheelchair was delivered to ECMC yesterday. I went to have it fitted, much like getting a new pair of glasses. Few experiences are both a celebration and a heartbreak like this one. I achieved a major accomplishment—an accomplishment prompted by the weakening and failing of my body.

The world is not designed for people like me. Every day, it becomes clearer that society has built its walls, stairs, and doors for the able-bodied. It is a place where the expectation is that everyone can walk, see, hear, and move through space in the same seamless way. But for disabled and chronically ill people, like me and millions of others, the world is a labyrinth of obstacles, and navigating it demands superhuman effort. Yet, this burden falls squarely on us, the ones who are already fighting battles within our bodies. Society acts as if accessibility is a privilege, an extra accommodation, when in truth it should be a baseline.

Imposter syndrome isn’t just something I experienced in the professional realm. As a chronically ill and disabled person, it’s a mental load I carry every day, a weight that compounds with every delayed diagnosis, every raised eyebrow, every “Are you sure?” from a medical professional. I’ve spent years in and out of hospitals and clinics, speaking a language most people will never have to learn—chart notes, diagnostic codes, procedural scripts—yet still, I find myself questioning the legitimacy of my own body’s distress. Not because I doubt myself, but because I’ve been taught to.

In March 2020, we witnessed the world shut down. For most people, it was a jarring shift—stay home, avoid crowds, no more dinner parties, no more carefree runs to the grocery store. For me, it became an unrelenting isolation that would stretch into the longest 16 months of my life.

I am a complex case. Their way of saying I am an inconvenience to medicine, an outlier in a system designed for answered questions, for clean narratives. There is no conclusion here, only the repetition of symptoms. My body refuses to be known, to be categorized, and that, I imagine, is what disturbs them most.

I am starting treatment for MS this month. I should have started treatment a year ago when I first noticed my foot drop. Every doctor gave me their opinion, yes it is MS, no it’s not. No one wanted the diagnosis attached to their name. A year ago I could lift my arms up all the way and lifting my legs didn’t require my hands.

A list of things I no longer enjoy because of disabling chronic illness: getting tattoos and piercings, riding motorcycles, alcohol and food, traveling, sunshine. I’m drinking a rose latte at the Yemeni cafe around three corner, listening to Faces, telling myself I’ll feel better to write a bit.

Of the 20 mysteries of the catholic rosary, only five are sorrowful. The others are joyful, luminous, and glorious. Rinsed white rice boiling in a pot will bubble with the full spectrum of visible light. September is mostly summer and yet the intense allure of autumn permeates the month. The sky is blue because light from the sun scintillates against the black void of space. Joyful, luminous, glorious mysteries.

I am wake in the middle of the night grieving. My ostomy bag wakes me up and pain keeps me up. Pain leads to feelings every part of my body. I feel the tubes in my abdomen, the ostomy in my gut, the countless surgery scars. I feel saddened all over.

I am multitudes. I not only contain them, I am them. I am dying. I am strong. I am gorgeous. I am disabled. I am a disordered eater. I am trying to recover. I am never going to recover. I am healable. I am incurable. I am contradictory.

All I think about is your body. Let me say more. I think about how it feels, how it moves, how it works. I think about how it breathes, how it digests, how it drinks. I think about how your body feels and how it feels to others. I think about living in an able body, I think about it all the time.

Today's future revolves around a PhD program. I apply with my "Uncomfortable Angles" idea under the thesis that to be disabled to is be affected and we are as unable to separate ourselves from the identity as we are from our disability; everything we do is disabled.

When asked, I'll reply that I "used to write." I make no mention of having written a book. Having started a literary magazine. Having been on mast heads.