In my desperation to get some real sleep for the first time since January 2020, I said yes when, in October of that year, my acupuncturist asked if I wanted her to get rid of my “false steam.” She asked if I was sure, and I said yes, again. Care is a kind of intimacy. A layer of knowing that involves exchange and trust and consent. For me, a person on the asexual spectrum, intimacy has nothing to do with sex or romance.
Instead, it involves tending, protection, nurturing—and that can come from friends, family, strangers, and, especially because I am disabled, care workers. I remember the light pressure of the acupuncturist’s hands anchoring my ankles to the clinic table before she left me to process that energy shift in the dim, curtained space.
It worked; I slept. I did less work. I said no a little bit more often. I asked for a break, took a week off from teaching to process grief, even made a few small collages and drawings again in the open space and composed a commissioned poem out of morning haiku and journal scraps. But my duties remained, care work I couldn’t outsource—my family and I are all disabled. My son and my niece (ages twenty and eighteen at the time) and my elderly mother all lived with me, in a home I’d just purchased on my assistant professor salary. Their needs: urgent, daily, all-encompassing, and left up to me. And at the same time, seeing me struggle to keep up with work amid the management of medical appointments and meals, they kept some of their needs hidden from me—which meant emergencies could and did erupt. Ambulances, ER visits, frantic calls to the nurse line. I tried to hide my stress at home; I didn’t want them to feel like they were a burden. But the more I tried to hide the mental and physical toll, the more evident the damage actually became.
I understand that I underwent the dissolution of a social mask that had been in place for my entire adult life.In a crisis, I’m amazing. I calm, soothe, assess, strategize, harmonize, coolly implement solutions. Daily tasks? Not my forte. My mind prefers delving deeply into something singular—like silviculture, family-owned French wineries, poetry. The constant interruptions of caregiving and self-care unmoored me, and I couldn’t maintain a set routine. I got distracted, sidetracked, sucked into time-holes of random curiosity about sub-Saharan birds and the sacking of Carthage in 146 BCE and binge-watching Drive to Survive while the dishes piled up and mail went unopened.
Performing non-novelty tasks (cooking, cleaning, errands) runs counter to how my brain works. Friends reminded me not to forget about my own needs, but as a working solo parent caring for extended family, how could I avoid sacrifice? The world is not built for disabled people, so we take on the pressure of creating a real life outside of the illusion of systemic support. We often can’t access that support, whether due to the infinite fiery hoops of bureaucratic paperwork, or, if by some lucky stroke we do gain access, we might experience its random and persistent violence and gaslighting. Navigating that bureaucratic maze taxes already low energy reserves and further institutionalizes the isolation and exclusion of an already marginalized population. We cobble together our own supports.
But that extra effort takes a toll. Stress manifested in my gut. I went to the ER in November 2020 to find out I had IBS, rapidly growing fibroids, and some random thing going on with my liver that they said they’d “monitor.” Meanwhile, the deadly wildfires raging in California traveled a thousand miles to turn the Colorado sky a hazy orange, and for days we had to close all our windows against the ash.
Then, my mother—who has dementia—had an episode that I couldn’t emergency-control into the clear, a dramatically unsafe hallucination that sent me scrambling to find the proper facility for her. She insisted that she could live on her own, but she put dishwater in the greens and a mountain of salt in the soup she’d been making perfectly for decades. She put on her clothes inside out and refused to take showers or allow me to help her with hygiene. She became obsessed with rewriting the numbers in her phone book, and was probably taking her medication incorrectly—but she insisted she could do it herself, and the more I tried helping, the more she cursed me out. She stopped leaving her room, preferring that I or my son bring her a tray of food, which she’d half-eat. My vibrant, funny, larger-than-life diva of a mother was disappearing into the illness, into her most negative characteristics, and I had to find a way to help her live through it with more dignity and better medical attention. During a pandemic.
With help from a regional program for seniors in crisis—one that couldn’t help in a preventative sense, but that’s another story—I quickly found a suitable care facility not far away. I moved her in, paying professional movers because she insisted on packing her tiny room with furniture from Montgomery Ward catalogs. Yes, they still exist. I grieved, processing the loss of our very close relationship in favor of something more adversarial, fraught, heartrending. Our intimacy—gone. She didn’t want to know us, her children, anymore— new delusions haunted old memories, and her obsession with danger fractured us.
Still, disabled people know persistence. It took countless specialists and infinite patience to find the right diagnoses for my son. It took until the summer he turned nineteen for us to know he is autistic as well as gifted, that he suffers with migraines and sensory processing disorder, not “laziness” or “too many sweets” or “not enough sleep” or “too much gaming” or, in a common indictment of me as a single mother, “too much instability.” I tried so hard to prove school officials, doctors, and evaluators wrong; I strove to be the stabilizing force in his life, his buffer against pernicious stereotypes of young Black men that threaten his well-being, his access to resources, his very life. And I am lucky to have his permission to disclose this; I ask, I am transparent, I am honest to a terrible fault.
Terrible, because that honesty has turned into oversharing on more than one occasion. I’m sure there were instances when I said too much, with too much emotion, especially at the wrong time to speak. I found that tended to get worse at certain times of the month—a joke culturally, but a truly overwhelming hormonal disruption for me. My doctors had for years blamed my extreme monthly mood swings on plain old PMS, then fibroids, then perimenopause. Since I seemed “fine,” looked “fine,” could still function even though their usual birth control remedy didn’t work for me, no one investigated further. I’d heard the accusation “You’re too sensitive” so many times in my life that I had long embraced it. What better way to use sensitivity than to become a writer—a poet? That defiance took energy to maintain, however, and its source is not infinite.
Almost a year to the day after my mother’s mental break in October 2020, I had my own. In a chaotic and stress-filled moment, I planned my own demise in a way that felt scarily implementable. The energy level I had maintained for most of my life just disappeared—that false steam—but in the wake of ongoing grief about my mother, the pandemic, my son’s illnesses, my family’s illnesses exacerbated along with my own, I lost the ability to sleep. I couldn’t keep up with working, cooking, cleaning, caregiving, and general self-maintenance. Instead of two or three times a week, I ordered takeout almost every day. I struggled to keep my own and my family’s medical appointments and complete my writing projects and show up for online events and answer email and grade papers and design new syllabi and attend meetings and do uncompensated diversity work while Black during a global pandemic-recession-uprising-environmental collapse. I looked fine on the outside, but I felt isolated even with colleagues offering to help.
The Dissolution left me with what iconic poet and playwright Ntozake Shange might call “some simple bitch / widda bad attitude,” one who had little desire to hustle or struggle or push herself to do more than the bare minimum. I disappointed people. I said no a lot more, said no to things in advance, in a long email auto-responder. I ignored major projects, missed out on a big opportunity. I cried a lot, I raged, I fell deeper into a disinfecting spiral as the pandemic wore on and on and on. Even with all the steps I’d taken to ease my load, my mind started collapsing. I felt burned out, hazed, ashen-hearted. I couldn’t fight the bombardment of intrusive thoughts, so they took over, and I didn’t even recognize myself anymore.
I had felt the disaster of the virus coming in December 2019, did as much preparing as I could to protect my high-risk self and family. But after two and a half years of maintaining a personal system of protection from SARS-CoV-2, and the abrupt loss of an exciting travel schedule and social life with no certainty as to when or whether it would return, chronic stress veered into deep depression territory. I called a hotline. I spoke to a woman who sounded Black, like me, who understood on that unspoken level the monumentality of what I was experiencing. The intimacy of that conversation helped to re-anchor me to who I was; I felt recognized, and realized a glimmer did remain. She got me a referral that saved my life.
Now that I have an official ADHD diagnosis, I understand that I underwent the dissolution of a social mask that had been in place for my entire adult life—a mask that I thought I’d perfected as I became more well known in my field. As an unknown, I gravitated toward intimate conversations from the start. Poetry is like that. Stranger-poets connect immediately, on the already-deep level of the poem, sharing intimacies with someone you might never encounter again except in a poem.
As I published more, whatever eccentricities or social awkwardness I displayed got perceived as part of my identity as a poet—she’s too sensitive, too intense, too strange, too much. Yes, I heard those whispers amid the praise. The strength of my defiance overruled any sense of exclusion before the pandemic. During? I’ve had to learn an intimacy with myself that I hadn’t taken time for, that de facto isolation and exclusion has impelled. I am relearning who I am with new information, including facts about how hormonal fluctuations greatly exacerbate ADHD symptoms. Post-Dissolution me doesn’t pretend, sets boundaries, says no, hasn’t anything to prove—and so refuses proofs. I like her. I might even finally love her.
The world asks us to be quieter, to do less, be less. Be less colorful, more neutral, more predictable, more obedient, less spontaneous; to eschew “excessive” expression in favor of modesty, genuflect to the uniformity of it all unless we’re in service of profit—the capitalist spectacle of entertainment. In conventional social settings, cultural norms demand that we don a bland façade, to sit still when our bodies demand movement, to resist the “disruptive” urge to fidget and doodle and blurt movie lines and sing and move, to stop doing multiple things at once and “just” focus.
Hiding or suppressing natural impulses is called masking. And we—who are not neurotypical—manage because we’ve been conditioned to do so, to connect but also to protect ourselves. The exhausting, debilitating, anxiety-inducing, and depressing effort of masking affects how we think about ourselves and other people in profoundly negative ways. I didn’t understand that until I could no longer maintain the illusion of fineness. The public self I presented could have eaten the real me alive, disappeared me, dissolved my whole self instead of just that surface construction.
Every time I feel like I have to put it back on these days, to talk to a person in charge of something I need or a family member needs access to, I smell a sizzle—sharp, acidic, and my newly built mind-self rejects that harm. I’m practicing more refusal, unlearning forty-seven years of compliance. Those of us whose disabilities aren’t physically apparent often live in the schism pretense creates—we’re fine until we’re not, pretend until we can’t, our minds and bodies suffering through the unnecessary demands to which ableist culture clings.
Whether disabled or not, creative people—contrary to persistent myths about the starving artist—require care, a nontoxic workplace, and a support network that shores them up as they are. That’s no different from any other human being, but sometimes, superhuman expectations get placed on folks who create for a living. They are set as unreasonably as the expectations of perfection and silent endurance placed on people who care for families and strangers. Folks may see the super-competent or high-performance face we show the world and think we’ve got everything in our lives settled and under control.
I’ve had to learn an intimacy with myself that I hadn’t taken time for, that de facto isolation and exclusion has impelled.And while that performance (perhaps, at least in my case, powered by hyperfocus) is real, we do adopt public personae for professional purposes, in order to do what we love and share what we know in style and in sometimes glamorous circumstances despite our discomfort. American culture is fascinated by what’s behind the public veneer, too, but only enough to reinforce the importance of maintaining it—or to be titillated by the violent spectacle of its destruction. That isn’t true intimacy. For me, true intimacy means striving for complete knowing; I’m interested in acceptance and non-transactional relationships, not consumption or competition.
That eschewing of surface ties might seem at odds with the fact that Los Angeles helped raise me. My city as surrogate parent reinforced what my biological parents told me: to look perfect, to watch what gets desired and rewarded in order to emulate it, to speak perfect English, to act as if perfection were natural and effortless, to walk in sunny California spaces as if upon a pageant stage. I used to live in the mirror. Not out of vanity, but to practice masking errors on the surface of my physical presentation in public—an intimacy of enforcement— and I made social errors all the time, talking out of turn or saying something too bluntly or not paying attention when expected to. I used to “space out” so much as a kid, I got teased. A popular refrain: “If you weren’t Black, you’d be blonde.” Kid me leaned into the misogynist presumption. I let people think I was an airhead, blamed my astrological sun sign—Gemini—and mostly got let off the hook of remembering boring things I didn’t care about, like math formulas or anything with too many procedural steps.
My memory is long, however, and visual. I learned to read by the age of three and vividly recall my father teaching me at breakfast with the newspaper. Ads, comics, sports. I remember the smell of coffee and newsprint and Dad’s orange juice, and he’d let me drink some from his giant glass if I got the words right. I remember my feet on his lap, standing as he held the paper with one hand and me around the belly with the other.
Hyperlexia, or early facility with reading and speaking, is a common symptom of ADHD. So is eidetic memory. So is social awkwardness, disorganization, fidgeting, interrupting, sensitivity to rejection. No one who loved me had language for any of those things, but I turned to language as escape. I still love that instant connection. I read every book in the house, all inappropriate for my age—all the Robert Ludlums, all the Stephen Kings, all the Danielle Steels, all the Walter Mosleys, all (yes, all) of Mom’s Encyclopaedia Britannica volumes from A to Z. Ah, the 1980s. I read all the C. S. Lewis and L. M. Montgomery and Choose Your Own Adventure books my fifth-grade teacher Mrs. Schenck let me borrow when she saw how fast I sped through them.
Eventually, I devoured all of my dad’s encyclopedic volumes on Black history and Western civilization. Then I read all the Lois Duncan novels in my middle school library, all the Sweet Valley Highs, all the V. C. Andrews. In high school I discovered Toni Morrison, Maya Angelou, Alice Walker, Ntozake Shange, Marita Golden, J. California Cooper. I read them all and then read the writers they thanked in acknowledgments. I read Zora Neale Hurston, Toni Cade Bambara, James Baldwin, and Gloria Naylor. As an adult, I found the work of Lucille Clifton in a bookstore and read every word; I dove into the melancholy multiplicity of Fernando Pessoa, the elusive intensity of Lyn Hejinian, and continued alphabetically in bookstores and libraries.
My hyperfocus on reading—and, eventually, writing—got me all the way into graduate school despite many, many financial and circumstantial obstacles. People sometimes call the hyperfocus that is such a feature of ADHD a superpower, but no—we are human. We just use our brains differently. Or, said another way, our brains require stimuli and structures that neurotypical spaces tend to pathologize. However, the way neurodivergent brains work can be an asset, too, especially when known intimately, when nurtured and cared for and respected. I don’t mind sounding like I’m on a soapbox. Having ADHD means that my sense of fairness cannot be suppressed. Is it linked to the dysregulation of executive function and the lack of dopamine production in my brain? I don’t know the answer to that; but I do know that I can’t help despising bullies, barreling toward solutions, and rejecting injustice.
In poetry, in prose, in books, I could find worlds where imagination didn’t feel like pretense. Instead, that pretense was stripped away—the writer crafting an intimacy in its place, allowing human truths to starkly exist through voices and characters freed of the false veneer they wore in front of each other, unable to hide from any lies they might tell themselves.
In the summer of 2022, the acupuncturist asked if I needed stress relief this time. I had just returned from two weeks in the south of France, writing and attending a literary conference, which rejuvenated and relaxed me. I was buzzing with ideas, bursting with projects—zero stress in sight. I said, “No, but I could use more energy.”
I have my steam back, and the language to describe it.
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Adapted from Disability Intimacy: Essays on Love, Care, and Desire, edited By Alice Wong. Compilation copyright © 2024 by Alice Wong. “The Exhaustion of Pretense and the Illusions of Care” by Khadijah Queen. Copyright © 2024 by Khadijah Queen. Published by arrangement with Vintage, an imprint of the Knopf Doubleday Publishing Group, a division of Penguin Random House LLC.
