Almah LaVon Rice is a Pittsburgh-based Black queer writer living with OCD. Winner of the National Ethnic Media Award and the “Still I Rise” Grant for Black Women Writers, she shares her literary and mixed media adventures @ agentsubrosa on Instagram. We are honored to feature her essay, Can the Black Neurodiverent Speak, where she discusses her personal journey with OCD.

 

Black Neurodivergence: An African-American Folktale, Adapted

Just the other day and a long time ago, a freedman was walking through the woods when he came upon a human skeleton. “Hmm,” mused the freedman. “I wonder what brought you here.” To the freedman’s shock, the skull opened wide its jaws to reply, “You see these hell-hinges here? This mouth? Talking is what brought me here.” The rest of the skeleton clattered softly in assent. Well, the freedman didn’t stick around to hear anything else. He sped away as far as his own bones–and clammy skin, torn breath–could carry him. 

He was still running like the Devil Pattyroller himself was on his heels when the constable crossed his path. “Constable, constable!” the freedman panted. “There–there’s a talking skull back there!” The constable slowed his stroll to shoot back, “Now, look, boy, I don’t have time for any foolishness today.” The freedman persisted, “No foolishness, sir.  That skull spoke to me as plain as I’m speaking to you!” The constable frowned. These people and their superstitions. “Listen, today you’re teasing trouble but the joke’s on you. Show me this skull before I crack yours,” he warned. 

The freedman led the constable to the woods, right where the skeleton was lying quiet as dirt. The skull was in the same position as before, but the freedman could almost swear that it was now smiling slightly, and wordlessly. “Well?” demanded the constable. “Let’s hear these bones be clever.” The freedman kneeled to tap the skull–politely enough, he hoped. “Excuse me, Skull. The–the constable is here to have a word with you,” he began. Although the human skull has 20 bones, but not one of them moved in reply. As the freedman’s knees grew buttery, he tried again: “Please, Skull, just tell him what you told me.” Dead silence. “Just what I thought, boy,” the constable said. “The skull is telling me exactly what it told you–nothing.” 

Listener, I’ll spare you the details of what ensued, but I suspect you know already that it didn’t end well for the freedman. In fact, his body ended up among the bones that struck up a conversation with him on that fateful day. Yes, his corpse decomposed among the bones and leafmeal until his own skull was as bare and exposed as that talking-not-talking skull. It was then that the first skull finally spoke again: “Talking is what brought me here, and talking is what brought you here.”

Playing with/pushing back against the parable

I part the silence to dis/close that I am neurodivergent. I’m unequal parts infinity, my well-intentioned but misguided neurobiology, small-town Kentucky (my mother), and backwoods Tennessee (my father). Alabama is in my blood, too, as are a few anxiety disorders. One of them is obsessive-compulsive disorder (OCD), which, according to current understanding, means that three areas of my brain–the cortex, striatum, and thalamus–don’t play together as they “should.” This cortico-striato-thalamic pathway of mine gets as tangled as the cord to my earbuds I use nightly to outdrown the ceaseless stream of intrusive thoughts, images, and voices. 

True, my nightmare carousel of compulsions and distressing thoughts have abated with medication and twice-weekly therapy. But I still spend so much of my energy fighting a hidden war. There are few things more desolate than to have the circuitry of your brain drawing tighttighterand tighterstill–so that there’s nothing else left in the room but you and your terror. Not to mention the isolation of being Black with OCD–to date, I’ve only met one other Black person with an OCD diagnosis. 

While studies indicate that the disorder is no less prevalent in Black people than in our white counterparts, we’re barely a presence in OCD treatment clinics and research studies. Popular images of OCD sufferers are white and wealthy–how could I not conclude that OCD was a twee indulgence that my poor Black ass could scarcely afford? OCD wasn’t a Black thang, I supposed, but a culture-bound syndrome for (white) folks invested in the Western therapeutic- and psychiatric-industrial complex.

My understanding has deepened since then–mainly because I got help and education as my own symptoms veered into life-threatening territory. First of all, OCD isn’t twee or trivial at all–it can lead to completed suicides in its most severe manifestations. Recent research suggests that the suicide risk for the OCD population is about 10 times higher than for the non-OCD population.

Secondly, OCD and its local variations affect individuals worldwide, from an array of cultural, ethnic, and socioeconomic backgrounds (however, even as OCD treatment has proved life-saving for me, I still believe diagnostic colonialism is something to be vigilant about). And thirdly, the illness can most definitely be a Black thang–in fact, there are some timbres of OCD that are more pronounced in African-Americans and Afro-Caribbean people living in the U.S. We are 50% more likely than our white counterparts to have obsessions around being misunderstood, and we’re more prone to obsessions involving checking, contamination, and cleanliness–which researchers say, controlling for cultural factors, is likely due to stereotype compensation. If the racist regime insists that being Black is to be constitutionally unintelligent, negligent, contaminated, and dirty, no Black person is exempt from exposure to this reckoning–and I would surmise that a Black person who is already dealing with anxiety disorders may be even more vulnerable, more likely to internalize such anti-Black messaging on some level. It has also been hypothesized that individuals of lower socioeconomic status–with Black people being heavily represented in this group–are exposed to more contaminants, “leading to greater contamination concerns and cleaning behaviors.” (My personal experience seems to confirm this–I have noticed a spike in my contamination/cleanliness preoccupations when I have been exposed to environmental racism, lived in structurally abandoned neighborhoods, etc.) 

Furthermore, Monnica T. Williams et al.  stated that “it is likely that increased everyday racial discrimination depletes resources that African Americans need in order to manage their obsessions and/or compulsions resulting in increased symptoms of OCD. If racism causes or exacerbates OCD symptoms, this could be one explanation for higher scores on OCD cognitions in ethnic minority students.” I also suspect that the resources we deploy to outwit (dodge, swerve, duck, flee) racism accords less space to imagine neurobiological vulnerabilities as another source of difficulty. I know that was true for me. I am a daughter of a man who started sharecropping at age six, and a granddaughter of a woman who died from overwork in the fields of Kentucky before I had a chance to meet her; in my blood and bones I heard, as Langston Hughes did, that life for me ain’t been no crystal stair. “Difficult” was just life’s default setting, right? Empire steals so much of its oxygen from Black resourcefulness, Black make-do, our genius for using spit and duct tape to build another day. Just before I finally got treatment, my OCD symptoms were nearly unliveable, yes, but I thought the flaw and folly to be my own fault, and not really attributable to any disorder I could get any help with. A year after I received my OCD diagnosis, I found kindred in a participant of Black OCD research study, who said: “I was unaware, deluded, or in denial about the level of impact my condition had on life. Too much tolerance for deficiencies.” I shuddered with resonance when I encountered those words. Seeing yourself, hearing yourself, can be a shattering thing. 

As much as Black people are pathologized for not getting therapy, studies have revealed that many of us with OCD don’t even know effective treatments are available. But how accessible are they for us? I was living in Washington, DC during one of my mental breakdowns, and I went to the city’s mental health services and left after a couple visits, never to return–all because of the disrespect shown to myself and other low- or no-income Black clients. I was couch-homeless with no job or health insurance, but I knew the condescension and lack of care shown in that clinic would make me all the more poorer in spirit and health. Culturally resonant and respectful mental health care can be nigh impossible to find, and when found, unaffordable. Sometimes, for me, it came down to not being able to find a bus or any other transportation to get to the therapist’s office.

Misdiagnosis is another river to cross for many Black people with OCD. Black people in general are overdiagnosed with psychotic disorders–so when we actually have OCD, our symptoms are too often misread as psychotic.
As we are more subject to being brought in by police for involuntary psychiatric hospitalization, we come up against the traumatizing, sometimes-fatal collision between Black neurodivergence and state control. The constable is threatened by the freedman’s encounters with the fantastic, so the Black man must die. But even when he is killed for his supposedly false testimony to the state, the visions won’t die with him. The skull still speaks. Black neurodivergence persists.

My OCD Diagnosis: Origin Story

November 2017. I’m a whittled-down bot. I have lost so much weight, using the scant calories I do put into my body only to fuel the OCD symptoms. I am an OCD machine, running on maybe one chocolate Ensure drink a day, a tomato. It’s all I need. I am pure ritual, ritual, ritual. I live alone in a majority-white town in which I call no one a friend; that means no one is around to interrupt my monastic devotion to checking checking endlessly checking. I am pure ritual, ritual, ritual. Did I say that already? Once could never be enough, alas. Research [the unspeakable] for six hours, at least. Do [x] compulsion [y] times to deter [the unspeakable]. When I’m not scrolling through message boards or hoarding online articles, I am spending all my reserves avoiding thinking about [the unspeakable]. When my then-fiancée visits from out of town, she shakes her head, saying, You can smell the anxiety in here. I could smell her judgment and disgust, too. She can’t, won’t stay. I beg her not to abbreviate her trip as I lay beside her in bed, in the half-darkness of dawn. The sun is trying to nudge the shadows from the corners of the room. But my wife-to-be won’t budge from her decision–she’s leaving to go back home, but not before saying, You need some serious help. I am so scared, so ill, so unworthy of company. So it’s back to attending to the triumvirate that would never abandon me: the O, the C, and the D.  Nothing is uncontaminated enough so I quarantine, launder the same items multiple times, ditch perfectly fine belongings–and still, my thoughts are contaminated and compromised and corrugated, so I spend hours in bed trying to scrub and sand my brain down so I can be numb enough, tired enough to sleep, if only for a little while. Ultimately, though, I am outgunned by the rapid-fire artillery in my own brain; OCD, my closest kith and kin, at last I call Uncle.

This is when I call my sister, 500 miles away, and tell her about [the unspeakable].  “We’re more alike than you think,” she tells me, alluding to her own mental health struggles and hospitalizations. She implores me to check myself into the largest mental health hospital in the area, about an hour away from my apartment (aka My Temple of OCD Ritual). The thing is, I do want to get help. I just can’t bring myself to check myself in, not just yet. I am blurry with not-sleeping and not-eating, and perhaps perversely, I think that I’m not alert enough, sharp enough to go to the hospital and resist what they might try to do to me. A relative of mine went to state-required individual therapy for years, and as a child I had seen him folded into a cop car when he was having a particularly florid manic episode. I needed to have my wits, such as they were, about me before I entered what I thought of as the enemy territory, the constable’s realm. After getting some sleep in the spare room of a friend of a friend,  I go to the psychiatric hospital. I am still sick, still scared, still under-rested and underfed, but I feel more equipped to walk through its doors now, on the afternoon of Thanksgiving Day. 

I’m so glad I waited: police officers and security guards line the entryway and the lobby. Had I been as sleep-deprived as I had been a few days ago, I might have disintegrated in fear. Just seeing a cop stills my senses; I go rigor mortis preemptively (this Black person with OCD comes prepared, alas–already rehearsed for police-abetted death). The receiving agent takes my things, while I ask nervously, “I’m not being admitted, am I?” In the waiting room, there is only me and another Black woman, who appears to have been sleeping on the streets. I wonder if she was asked if she wanted a turkey sandwich, as I had been. 

When the psychiatrist does my intake, I answer questions like they are landmines, recalling what happened to the freedman. No, I am not suicidal (but my rituals and compulsions mean more to me than my life, my physical safety). What about harming myself (would wandering the streets at night in subfreezing weather count?) or others (my OCD frequently assumes the shape of fearing that I might be a secret monster or murderer, a subset also known as “Harm OCD”)? Do I see things that other people don’t see? I could have sworn I saw evidence of [the unspeakable] in my apartment, but over the phone my close friends express doubt that I could have seen that. I must have stepped among the psychiatrist’s questions gingerly enough because I am given a prescription and a referral to an intensive outpatient program, which I start the following week. 

I attend the intensive outpatient program three days a week for two months. I am deemed to have generalized anxiety disorder, but I suspect more is afoot. I broach the subject with the individual therapist I’m assigned to, but she is either not OCD-conversant enough to recognize its traces, or too distracted by my veil of competence to fathom the depth of my distress. It would take an unguarded moment at the kitchen table with my partner Jan for the scrim of neurotypicality to be ripped away.

June 2018. I’m four months in love, living with a partner for the first time. I’ve never really wanted to do so before, for a tangle of reasons–chief among them being my hypervigilance. (The vigil that always stands sentinel.) I needed some place in the world where I could put down some of my arms–anxiety armors me always, to some degree–but I could never see myself living with another person and experiencing a simulacrum of safety at the same time. But here I am, sitting in the kitchen after dinner with Jan, across a table made of glass. By the end of the conversation, I will discover that I am, too.

I don’t know why or how I start spilling. Maybe it is because Jan had done her doctoral work in counseling psychology. Before I learned she practiced as a therapist in the past, I knew her to be one of the most attuned listeners I had ever known. Maybe it is her clinical acumen coupled with access intimacy, the term Mia Mingus coined to name “that elusive, hard to describe feeling when someone else ‘gets’ your access needs.”

Whatever it was, I talk, I unveil, I reveal non-stop. Obsessively. As I asserted in my essay, “Watcher Within, Watcher Without: My Black OCD Story,” my experience inside OCD was a privacy that didn’t know itself. Secrets I didn’t know I had been hoarding spill out of my mouth and onto that glass table. As I also wrote in that essay, not even my closest friends knew about my secret rituals or the endless ticker tape of calamity scrolling through my mind. And they still don’t know the full extent of it. How could they? Even if the ever-ebbing shame wasn’t a factor, I don’t know how I could explain the terrordome of my thoughts, my private funhouse with no apparent exit door. Even OCD clinicians and researchers have questions about the contours of “the doubting disease.” But somehow, I am telling Jan all about it. All about [the unspeakable].

Finally, my soliloquy is done. Jan looks at me for a moment, and then runs her finger along the rounded edge of the kitchen table. “You’re on the edge,” she says. “And you’re about to fall off.” I keep watching her finger, hardly believing that things are that bad. I mean, I had gotten through last year’s crucible. I could concentrate on something other than [the unspeakable] again–I could read, write, and do my work. Eat (when not too triggered), sleep (usually not without chemical help, but doesn’t everyone have trouble sleeping these days?). “Would it be okay if I checked around for a therapist that specializes in OCD?” she asks, gently. After I nod, she continues, “I mean, I probably won’t be able to find someone Black–” but I don’t let her finish. I know the deal. I’ve been trying to find a Black therapist in southwestern Pennsylvania for years. I know that out here on the edge, I can’t wait any longer.

Through Jan’s sleuthing, I get a name, a referral, someone to help me navigate my inner hellscape. My initial email to her read:

Your name came highly recommended to me and I wanted to check in about your availability to take new clients. I am dealing with some phobia stuff with some OCD features (according to my partner’s estimation), and at any rate, I could probably enjoy a better quality of life with some better skills/treatment. 

I ended up having more than “OCD features.” After a series of assessments and sessions with K, I am diagnosed with OCD; I startled when K calls it a “bad case.” The diagnosis only comes when I start to trust her, and stop soft-pedaling my responses to the Yale Brown Obsessive Compulsive Scale. Black neurodivergence can speak. It can step out from the shadows, given the proper prompting.

Epilogue:

I initially wrote this for a project on Black neurodivergence and state control. My relationship with OCD feels very different now, after years of medication as well as weekly individual and group therapy. As well as doing exposures I never thought I could or would tackle. My psychiatrist has recently brought up scaling back my medication and my therapist has noted that my OCD is more background than foreground these days. On this day during Black History Month 2022, I realize that I don’t feel as alone as I did in 2017, when OCD threatened my life. Far from it. I daresay that I will never feel that desolate again. So many Black people in particular have reached out to tell me that they, too, wrassle with anxiety, OCD, and other not-angels. We deserve so much more than we are given. Living under white supremacy continues to impose its transgenerational tax, and it includes a psychic toll that has not been accounted for. But mental health redress and healing justice must be part of any reparations worthy of the name. Happy Black Futures Month.