PLACEBO

Dez Levier

I don’t write about my chronic illness, ever.

That’s a lie;

I fumble strained one-handed texts to my mom late at night asking if I can stay home from school because my body hurts so badly I know I won’t be able to sleep. I write long-winded posts on my private Instagram accounts about how tired I am where I know only my closest friends will see. I scrawl updates about my new medications in sparkly pink pen in my diary and mood trackers. I draft and redraft emails to my teachers trying to explain why I’ve missed so much class. I write poems over and over again about exhaust. I shoved a needle oozing with black ink into my left wrist to form the word ‘SAFE’ and try to pretend like it means something. When the pain gets bad enough, I pray until the words stick to the air. 

But I don’t post poetry about it. My friends like to joke that I’m a micro influencer; at less than 4,000 followers on Instagram, I’m definitely not an influencer of any kind but over the last year I’ve gained a small, comfortable audience for my poetry and faux glam selfies, which is more than enough fun for me. Even so, as my account (and number of readers) has grown, the way I interact with my own writing has changed drastically. I walk the strange and amusing line of not being completely sure if and when I’m allowed to call myself a writer; I consistently get deeply kind comments and messages about my work, but I’m still seventeen and ‘just’ posting on Instagram for the most part. I’m more focused on fun and making authentic connections than money right now, and I think that leads people to see me as less credible or driven with my work — I’ve forgotten how to do this work with the sole intention of impressing others. That, to some, makes me less of a writer. 

But when I released my first chapbook Dead Girl Walking last spring, I was overwhelmed with the amount of messages and letters I got praising some of the most intimate work I’ve ever shared — some of these pieces told stories I hadn’t been able to share with even my closest friends. That made me feel like a writer. It made me feel valued, held, understood, even with the understanding that my readers don’t know me. While the borderline parasocial relationships that occur with 1) having an Instagram and 2) being a writer are frustrating, I do also truly seek connection when posting my writing and it makes me feel momentarily fulfilled when people tell me my work touched them, or when people reach out at all. As I begin working on my first full-length book/poetry collection, I’m hyper aware of the fact that the majority of my work is either incredibly personal or masquerading as so. I’m equally aware of the fact that a large percentage of my audience is non-Black.

As I get older, I have this recurring epiphany that the world is not designed for me. As a writer, one of the biggest pieces of advice I’ve gotten over and over again is to let myself be honest in my work; it’s supposed to be powerful to lay myself bare and let my readers see all of the pain and glory stitched into a piece. One of the largest consistent points of praise I receive is about the amount of honesty and ache in my work. But as a Black writer (especially being queer/trans/femme) this feels counterintuitive — what would be brave for a white author, here, often feels like selling out to me, no matter how intrinsic my motivation is. 

Because the thing is, my white (and non-black) audience has seen my pain. I’m Black, bipolar, queer, trans, gender oppressed, disabled, and traumatized — obviously this is inseparable from my work, and my non-black audience has seen it. And they’ve devoured it, picked their teeth with it. I’ve prettied it up and sold it — and make no mistake, it’s paid nicely. But it didn’t feel brave, not really. Black suffering is a certain type of delicacy for non-black consumers; often I find that it’s the only way nonblack people want to interact with my content at all. During 2020’s surge in international discussions about anti-black racism, I wrote a poem called “blk motherhood” that was less of a poem and more of a place for me to talk about the nightmares I’d been having after every protest. Without being graphic, these nightmares were always the same; I had children, and then I didn’t. When I was finally able to bring myself to share the poem on Instagram (which I’ve since removed), I felt sick — it felt wrong. I had a flood of white people in my comments commending me for my bravery while simultaneously telling me how good the poem was, how it had made them cry, how they’d shown their republican mother, how I was such a powerful writer. I had dozens of white and non-black people thank me for sharing it. It didn’t occur to me at the time that while I’d been searching for community reassurance and support in sharing that post, all my non-black followers knew how to do was consume it as entertainment or turn it into something that could otherwise serve them, whether as a tool to absolve their guilt surrounding their own whiteness or as a political prop to use against family members with a thimble of empathy still swimming somewhere inside them. I didn’t want a thank you. I wanted to take it all back, to erase the poem out of existence and out of their heads.

That changed something for me, I think, as a writer and a person. In another poem, “PORCELAIN”, I wrote about how it feels to be a Black ‘girl’ (I definitely use the word loosely for myself) and constantly being watched, mocked, and then imitated by non-black people. One of the lines drums in my head daily: “Exploitation of emotion is an art form.'' I keep genuine pain and vulnerability (at least as it’s occurring) off of my main Instagram account as much as I can, at this point. My physical pain, especially one I know I will never heal from, is something I have never once posted a poem about on my main account — it would be too raw, too real. I deserve to own that, at least. If nothing else, I deserve to have that one thing untouched, uncommodified, unswallowed. I can admit now that I’m afraid of seeing how nonblack people (especially a specific type of white man that can’t resist fetishizing Black women and our ache) can take something so prevalent in my life and twist it into something useful or entertaining for themselves. I’m afraid of seeing how I, as an author, can twist it into something palatable for them — but racism isn’t something I’m willing to force into a metaphor just to teach my non-black audience how to either digest my personhood or provide them with something to entertain themselves with. More seasoned writers have argued that avoiding writing (or sharing writing) about something that’s genuinely raw makes a writer less honest or more of a coward, but I don’t think I’d be able to stomach myself (and, realistically, a large portion of my audience) otherwise. That might make me a bad writer, but it also keeps me alive; Black pain will always be on broadcast for a non-black person with an appetite for it. But mine will stay tucked in my drafts for as long as I want it. I will allow myself that. 

As I get older, I want to know: is there a way to pursue my art without sacrificing my own humanity and dignity? Is there a way to be in community with non-black people without putting myself on the stake? Is there a way for Black women to have anything without bleeding for it?

The first time I write about being ill, I’m in the hospital.

At 6:26 AM the sun rips the sky, dawn stretching and crawling its way into the city. In Lexington, night is night. The buildings don’t shift into smoldering torches of red and white the way Louisville’s do, and Lexington goes silent in the absence of the sun. If you close your eyes, it’s momentarily possible to feel completely alone in a place like that. So morning feels different here, like something to celebrate. 

The wind sighs softly as I step out of the hospital and I slump, heavy with exhaust. It’s July, so this morning is comfortably cool against the fetal tension of the day. The world feels strange, swirling and distorted. It’s the first day in weeks that I’ll break the rituals of the detailed routine set in place by the summer program I’m attending, one that often schedules twelve hours of work with few breaks in between activities. Frustration blankets my body and seeps hot and tired into the stained motel mattress; this was a predictable failure. Just a couple weeks earlier I’d laid under the same weight of frustration and anxiety in my own bed worrying about what was to come. The prospect of spending three weeks away from home churning out poems nonstop was shiny and exciting, but I wasn’t sure if I’d be able to handle it. For weeks I’d been shaking through one of the worst flares I’d had in years. 

With fibromyalgia, a chronic illness that is most notably characterized by chronic pain and fatigue, flare ups for me often look like being bedridden for days or weeks at a time, which would not be an option at a program that requires fast-paced working and quick learning.

Further, “fibro fog” (or the brain fog / cognitive dysfunction associated with fibromyalgia) would be detrimental for my ability to work and concentrate as an artist, especially as a writer. At worst, brain fog makes forming sentences, carrying conversations, and remembering basic details (such as what I’m talking about) difficult if not impossible. There have been times where I quite literally have been rendered speechless, which is an uncomfortable break from my usual neon eccentricity. Flares for me are painful, physically and socially — I wasn’t particularly excited about the possibility of having a group of strangers around me while I struggled to maintain a facade of normalcy. 

I don’t really believe in embarrassment; I can think of very few people that have the power to make me feel small, uncertain. My capacity for shame is microscopic. But I don’t know how else to describe what it feels like fighting to get into a space only to have to leave it. It isn’t a secret that Black artists are consistently barred from art spaces — we’re constantly underrepresented, and when we do get into ‘elite’ spaces, more issues and instances of anti-Blackness tend to bloom anyways. I didn’t want to get to a program where I knew there’d be a small group of Black people and people of color in general (and I was right: there were only 5 Black people in the Creative Writing discipline, which was the largest concentration of Black students in the entire program) and leave it; it felt like I’d be letting myself and my community down. I hadn’t fully understood that white people get to go to things like these and just worry about making art, or maybe missing their parents while I was worried about representing my community and proving that I — we — deserved to be there. 

So it felt like some sort of failure when I finally tapped out and let myself be driven to the hospital. Despite being over two-thirds through the program, my mother ended up making the hour long drive from Louisville to Lexington to drive me to the campus hospital after I started vomiting blood and fainting. In hindsight, it obviously wasn’t my fault. I was exhausted though, and felt defeated in more ways than one. It often feels like living in this body is a losing battle; as a queer/trans Black disabled femme, I am rarely afforded the autonomy to control any sort of perception of my body or any facet of myself. My physical presence is often a source of discomfort, and not just for me. 

Back at my summer program, a tension of its own was unrooting itself and slowly choking the atmosphere there. In my absence, an ongoing discussion about several instances of (specifically anti-Black) racism within the institution broiled. It did not go unnoticed that my flare had significantly worsened since arriving in Lexington — after nearly two weeks of advocating for respect for the Black students on campus, I was drained. The physical demands of the program would’ve been difficult enough to navigate; I fainted on only our second day there. The mental and emotional burden of combating anti-Black racism in an environment that forces you to be vulnerable and in community with the people you’re living and working with for near all hours of the day for three weeks straight was not something I’d anticipated as thoroughly as I thought I did. While I’ve long since accepted the reality of the pervasiveness of anti-Blackness, I’d allowed childhood excitement in one of my biggest passions to enable naivety overshadowing my concerns in that regard. I wanted this art program to give me back the joy and childhood freedom of expression I’d missed so badly since I started publishing and posting my work — I knew at some point I’d experience racism there (every Black person I talked to there agreed), but I hadn’t realized it would take up more of my time than poetry did. I didn’t realize how much it would affect the weakening energy I was fighting so hard to maintain. I didn’t realize that the majority of my conversations with my friends would be about what racist thing someone had done to one of us each day, or what micro-aggressive action administration had done the night before; it was constant. 

Being disabled and a Black femme have both taught me that I am believed to be both disposable and inconvenient — survival requires advocating for my boundaries which I’m rarely allowed to do without being perceived as aggressive, hostile, demanding, or self-centered. I’m expected to act as an adult; I have to advocate for myself, because I’m going to get screwed over either way. 

The adultification of Black children, especially Black girls, is just as pervasive as anti-Blackness is, and it’s both traumatizing and often fatal. The sexualization of Black women and girls (and those that are assumed to be women and girls), for example, has lead to a number of setbacks in receiving my diagnoses. The catalyst to receiving my fibromyalgia diagnosis was a flare so bad that I experienced paresthesia (sharp, fizzing pain akin to pins and needles) severe enough to being temporarily entirely unable to walk. My first visit with a neurologist at only the age of 13 was a 45-minute waste of time that resulted in me being told to lose weight and stop wearing skinny jeans and other “inappropriate” clothing. It was also suggested that wearing something looser to “fit my figure” could fix symptoms that were clearly beyond an issue of attire. I was wearing my middle school uniform. 

Just a few weeks before I was hospitalized in Lexington I made an appointment with my general practitioner to discuss the fact that I’d been dealing with what I’d later find out was internal bleeding for over four months at that point. My doctor, a white woman, spent the majority of my appointment grimacing with judgement and pressuring me to take an on-site pregnancy test despite my insistence that there was absolutely no possibility of me being pregnant. I declined four times before eventually surrendering. It was clearly micro-aggressive — she’d glared at my low cut tank top (it was summer, after all) and huge hoops and assumed my symptoms (which were debilitating at that point) were because I’d had unprotected sex (something I never confirmed), something I doubt any of my thin white friends have endured, especially in front of their mothers. My pain and bleeding continued for another month and a half before I was able to finally see a specialist. Within the medical field, Black gender oppressed people in general are subjected to discrimination and a large disregard for our safety and health. 

In any situation, being Black and gender oppressed means staying quiet can be lethal; if we don’t stand up for ourselves, nobody will. In trying to enjoy the last few months of childhood and finding joy in my art, I let my guard down. Maybe that’s my fault. I thought I was prepared for the racism, and I was wrong. Maybe that’s my fault too. Black girls have never been allowed to be children — one of my lingering tethers to gender is the expectation to endure; Black girls, from birth, are expected to carry the weight of a world that is designed to kill us until we break. We’re expected to heal a world that actively works against our own healing. We did stick up for ourselves at that program, over and over and over again. Nobody can deny that. But it makes me sad that we had to. Even at an art camp, we weren’t allowed to just be children, to just have fun and write. At the time, I was just grateful that we had each other to suffer with, that we weren’t alone the way some kids were in the other art disciplines — now I’m sad I even got to the place where facing bigotry with another group of children felt like something I should be thankful for. 

There’s something magical about being a Black girl, though. About surviving in a world doing everything it can to crush us. There’s beauty in the way we hold each other, the way we protect each other and ourselves when nobody else will. I remember looking at our small group of Black writers (three girls, one boy, and me, somewhere in between) and being so upset that we had to come together this way, but so happy to have found each other. Every time I experience misogynoir or think about how much sacrifice it takes to survive in this world as a Black girl, I think about how powerful it is for us to just be alive. How spiritual it is to find warmth in a place like this. I think about the intimacy and strength in the hands that braid my hair, the subtle looks of solidarity and firmness in any room with just a few of us (which is many, many rooms), the way my love for Black girls and love of being a Black girl is the only thing that keeps me anchored to gender. 

At that summer program, after three long weeks, we all composed the writing we’d done into chapbooks (small collections of poetry/prose/etc.) and gave them to each other with handwritten notes etched into the inside cover. In one, a white boy who told me he doesn’t want to read about anti-Black racism anymore scrawled: You’re amazing — you’re the type of person that makes people really think about themselves. Never stop being that person! The thing is, I don’t think I want to be that person. I don't think I want to be the person who makes people re-evaluate the violence they perpetuate towards me. I don’t want to write things and say things that make white people want to better themselves, I don’t want my poetry or prose to play professor for whatever non-Black person thinks they’re doing me a favor by reading my work or listening to me defend myself (especially when they won’t speak up with me). I don’t want to write for non-Black people. I don’t, and I never have. In March of 2022 I will turn eighteen and I will be an adult, but I can’t remember the last time I didn’t feel like one. I don’t want to be the Black girl that white people are comfortable enough with to fake sincerity, and I don’t want to be the token Black artist in a room full of people who don’t understand that I’ll be working for the rest of my life to create art in a world that doesn’t want me to, in a world where my art has to exist in spite of it — in spite of them. It doesn’t matter how many non-Black people follow me, or how they view me and my work; my art, passion, and heart will always be for Black girls, forever and always. I’m going to be something amazing, and I’m going to do it for us. I will always have the energy for that.