The Spiral
My phone dinged. “Burt Reynolds game is Saturday. You in?”
A friend of mine texted this innocuous invitation to a local baseball game and my heart sank. I had just been to the grocery store where I could barely buy Kleenex and peanut butter without panic. I had spent the last eight to ten hours that day trying to write an academic book chapter while also fending off obsessive thoughts that my spit would eventually, sooner or later, kill my other friend’s child. I knew that the embarrassment of freaking out and acting weird if something happened to trigger my OCD would be far worse in the long run than having a night out with friends.
There’s no way Yomaira could know that in my mind I had spent the past two weeks bemoaning every single time I had ever served another person food and imagining the terror that could come if someone caught a disease or food poisoning and called me up to blame me for illness or their family member’s death. My brain, these days, seems to keep a running tally of all the meals I’ve ever served; all the towels I’ve ever used; all the children I could have hurt; all the things I should not have done. Sometimes, I even wake up from an OCD dream. In my psychic universe, my brain concocts new, wacky ways that I could hurt someone and then shows them to me through a funhouse mirror. The most bizarre dream was about a steampunk, gigantic vitamin B12 syringe I shared with a friend, infecting both of us with a deadly virus. My straight-edge mind could never contemplate heroin, so it devised a new torture about vitamin supplements while I slept.
I texted her back, wondering if outing myself was the right thing to do: “I have OCD and my meds aren’t right. Can I take a rain check for the next fun thing?”
“Sure!” she said. “Let me know if I can help.” Then: “Now I know why your house is always perfect!”
If only. If only OCD made me cleaner, more put-together, more ordered, more attentive.
“Hahaha! Yeah, those contamination fears keep me moving!”
I spend the rest of the day lying on my couch in the summer heat.
***
How to treat OCD is well-understood in the psychological and psychiatric literature, which makes it all the more confusing why so few therapists are adequately trained to recognize it and why the common perception of the disorder is driven by Hollywood film sequences of odd rituals, perfectionism and hand washing. Some writers suggest that these images persist because it’s easy to show rituals on screen, but it’s difficult to show intrusive thoughts. I don’t buy it: we craft onscreen narratives that imply a whole lot of other internal, invisible things, like sadness, apathy, love, cruelty, and psychological terror. Reducing OCD to counting rituals is careless writing, similar to callous screenwriters who still think suicide jokes are funny.
OCD has a hard time taking a joke. One of the first things I remember losing was my sense of humor. So Jon Herschfield, who runs an OCD center in Baltimore, does his best to make funny memes about treatment. One is a picture of The Dude from The Big Lebowski, mouth open, mid-sentence, that reads: “You mean to tell me, you don’t always think of the worst thing you could do in any situation, man?” The idea of such a stoner having severe harm OCD is pretty funny.
But living with OCD? It’s a real bummer. My brain is constantly telling me that if I make a mistake, innocent people will suffer or die.
Hilarious.
***
I have had people tell me that I am a good listener. In the best of times, that is likely true. The truth is: a lot of the time I’m a distracted listener. Sometimes, when we’re talking, you’ve just said something that has caused A COMPLETE AND UTTER FREAKOUT and I’m going through an extensive mental checklist in my mind, hoping you can’t see the panic underneath. You didn’t mean to, but just by happenstance, you have found THE THING that my brain is convinced is THE MOST AWFUL. I’m trying to hold two conversations at once. One is in my head: that sinister OCD brain telling me horrible things will happen, most likely to you, that I will have caused. The other is the actual, real-life conversation that I can’t actually respond to. And that real one just seems so incredibly unimportant in the face of an impending catastrophe.
Most of the time, I’m grateful that you keep talking and happy you feel heard. I’ll just be over here, trying to get the chatterbox in my brain to SHUT THE FUCK UP.
While I am on a work trip, the terror I feel is so great that I don’t want to be in close proximity to any other human. Lying in a hotel bed, I make a list on my phone of all the things I’ve been terrified of in the past two weeks. There are almost thirty separate things. Thirty specific horrible thoughts that have run on a repetitive loop over the past fourteen days.
***
While researchers are not quite sure why humans develop OCD, it’s very clear that internal and external factors can combine, either in childhood or young adulthood, with an often-inherited predisposition to the disorder. They believe the factors causing childhood OCD and adult-onset OCD are different: one cause of child-onset OCD, for instance, might be strep throat. This mixture of intrinsic and extrinsic factors makes subclinical OCD — small behaviors along the spectrum that all of us have — turn into clinical OCD. It’s also very clear that the kinds of thoughts that terrorize someone with OCD (no matter what type of OCD or their origins) can often be effectively treated with medication, cognitive behavioral therapy, and the gold standard of OCD treatment: exposure and response prevention, sometimes called exposure and ritual prevention, or ERP.
I received a diagnosis of OCD and panic disorder eleven years ago, after I was assaulted. No one ever suggested ERP. I tried five psycho-pharmaceutical medications. One worked — until it didn’t. I saw more than ten talk therapists in a decade, one of them even while abroad, trying to abate the fears of harm that tortured me. I learned a lot of emotive vocabulary in a foreign language, but nothing provided relief.
OCD is not primarily an emotional problem; it’s a neurobiological one. OCD occurs when a brain cannot discard scary, erratic and unnecessary thoughts, but instead registers a broad-spectrum of thoughts — whether revolting, mundane, normal, irrelevant or strange — as important, no matter how implausible.
Everyone has these thoughts.
Mine just stick.
***
One of the things my OCD latches onto are fears of saying the wrong thing, especially fears of saying the wrong racist thing or the wrong ethical thing or the wrong emotional thing. This is an incredible barrier to human connection. Last Christmas, I had a couple of friends over for dinner, and we were talking about hobbies and other projects we would like to pursue. I had just started going to a new hairstylist who, for the first time, understood what I meant when I told her I wanted a butch haircut. It was one of the most thrilling experiences of my life. I told my friends at dinner that I wanted to make a documentary about all of the butch clients this hair salon serves, where they could talk about what it means to finally have a haircut that looks “right.” My friend blurted out: “It’s just like me! I can’t have white people cut my hair, and you can’t have straight people cut your hair!”
There was a pause and I nodded. I remember being frustrated by my own reaction. We could have bonded over our hair, each different cut and strand and shape and also over the same glorious feeling of knowing what it means to be seen in all your awesomeness by someone who really wants to make you look good. Hair can do that.
I still suspect that the outward effect in real time was of a white person turning away from a conversation about race. I know the tense conversation about hair in this country; how many horrible things white people have done, said, and legislated with regards to Black hair.
I also know that at my last haircut, I wondered if I could contract an illness from scissors. So: there’s that.
Rather than participate in a bonding conversation, I concentrated on controlling my thoughts. I didn’t want to cause any more harm.
***
I live in a town of 116,000 people in the Midwest. I used to live in a rural setting. I haven’t yet had access in either place to clinicians who understand OCD, despite the fact that 1 in 100 adults and 1 in 200 children have it. One of the weirder conversations I had in 2013 was educating my rural family doctor about the difference between worry and OCD worry; she tried to solve the problem by handing me pamphlets about herpes. Offering reassurance is ultimately ineffective against OCD: in and of itself, she was accommodating my compulsion and likely strengthened my obsession. She meant well — she just didn’t understand what she was doing. I still find myself thinking that I should mail her a book about the illness. I can’t have been her only patient suffering in between fields of feed corn and soybeans. The ratio for OCD prevalence among adults is somewhere between 1:50 and 1:100. That means there was somewhere between 40–100 other people in this tiny community of 4,000 people who were struggling. The number of adults with OCD in the US is likely equal to the entire population of Houston, Texas.
Over the past five years, I have seen eight different therapists and most of them missed the persistent OCD symptom profile that I presented — despite the fact that I was specifically there to minimize my OCD thoughts and told them so. When OCD came up, several of them told me to just write down my thoughts, especially the ones that scared me, and that my brain would simply habituate to them over time. One told me I needed to come to terms with my gayness, even though I’d been out four times as long as she had. One told me that the only thing that helps OCD is time. One even flat out told me she forgot that I had OCD. There was no guided exposure protocol, and the comments were offhand: just sit down and do it, and you won’t have OCD anymore.
First, the longer you go without treating OCD, the worse it gets. Time does not and will not heal obsessions and get rid of compulsions. And while writing scripts is a treatment for OCD, it should be an activity conducted with some therapeutic supervision. Script samples in the clinical literature are structured and have a set format. Then, you rewrite or recite that script daily until your anxiety levels and compulsions retreat. This is usually done only for highly abstract fears. I tried, alone, at my kitchen table, unsure of what I should put on the page. It had no effect because it wasn’t structured. While I now recognize that these providers had drastically underestimated the increasing severity of my illness, I felt like a lazy patient. Since they did not think it necessary to guide me through the terror and address compulsions, we instead continued to talk in a very basic psychodynamic modality about my upbringing, my childhood, and my thoughts and what they could possibly mean. The thoughts became more common and more intense. I got more and more angry that I couldn’t control them or my life.
Experts have found that talk therapy, especially psychodynamic talk therapy, can make OCD worse. There’s no reason to focus on absurd thoughts that the mind creates. They are not proof of a difficult childhood or realistic fears — they are simply what the mind does. It generates thought.
The goal is to think less, not more.
***
“I want to thank you for being such a good teacher. This class was great! I didn’t want to tell my professors about my OCD, but talking with you made me a lot more comfortable.”
A student sent me this note several years ago. This student frequently missed class or would just stand up and leave during the hour. Their excuses were vague, and so characteristic of OCD that I intimately understood what I was watching. OCD operates outside the bounds of logic. Anything can be triggering, anything can create a sense of dread and terror so profound that the only option is escape and avoidance. We do weird shit because we’re trying to get away from the scarier weird shit happening in our minds. While I never outed myself to this student, these days I’m constantly wondering if it would be better if I had.
I went on a trip to Hawaii with my family, where every single activity was an OCD trigger. My aunt told me I seemed stressed and that I should get a new job. If she only knew that everywhere I drove them, I was also contemplating — in vivid detail — how my driving could kill us, leaving my cousin’s toddlers without a mother, she might understand why I felt so stressed. But then again, she would probably also think I’m bananas.
It’s important to understand that it is clear to me that the fears I have are at the very least exaggerated and at most bizarre. Having OCD does not mean that I enter psychosis, or break with my perceptions of the material world. Instead OCD is characterized by cognitive distortions and disordered behavior. Living with OCD gives you an inflated sense both of your own power and of your own control. The real illusion is that you have any control: OCD makes you distracted, unable to concentrate or respond with empathy, and leaves you with a responsibility hangover that tells you mistakes are not an option.
But you still make them all the time.
***
Once I had a word for it; once I understood that the therapeutic approaches I so faithfully participated in were causing more harm than helping; accurate information about OCD seemed to be everywhere. I couldn’t understand why no one had talked to me about it. The details about the disorder and about the effectiveness of treatment can be found with simple web searches. There are tons of books about it that all say the same thing: GET THEE TO ERP.
There’s no excuse for the absence of quality therapy; there is no good reason why people who have OCD, especially child-onset OCD, often have to wait 14–17 years to find appropriate treatment. It took me 11 years. It is one of the most common mental health disorders across the world, one with an evidence-based treatment protocol, and also one of the most disabling. I could choose to be gracious and say that the disease can be hard to spot, except that my very first psychiatric intake in 2008 asked the right questions and immediately diagnosed me with OCD. There is simply no reason for this level of negligence by some practitioners. Training for psychotherapeutic clinicians has to improve.
And yet: all I’ve been able to find so far are waitlists. I’ve been in a spiral for ten weeks; I’ve been able to recognize that it’s OCD for the past eight. I can’t get in to see a new therapist or to see a new psychiatrist to change my medication. When I visited my employer’s staff counselor, he was only able to come up with six names of therapeutic providers who explicitly perform ERP, and only two of those were in the city where I live. Those two had waitlists of several months. The other four were more than an hour’s drive away, two providers to the west, and two providers to the east. One had a waitlist of 9–12 months (!); the other doesn’t even take insurance. Why should she? She has a waiting list four months long for clients who can pay. Probably in cash.
While I would not act on any suicidal thoughts that I have, and I have had a bunch this past year, the idea of waiting months — months filled with days where eight to ten hours are spent trying to accept, repress, or out-logic distressing thoughts while I am trying to teach classes and write a book and navigate a long-distance relationship — makes me understand for the first time what it feels like to be truly hopeless. To know that successful therapies exist and that I cannot access them fills me with rage. No one should have to wait this long to treat the thing that is ruining their lives. No one should have to try ten therapists before finding adequate help — not to mention the reality that most people can’t even afford that, since the first session for clients with no insurance is often double the price due to the need for a full intake.
In my inbox archive, I find an email I wrote back in 2014 to a talk therapist I’d seen. “I am looking for someone who does CBT for OCD. Do you know a provider in this area?”
“I’m sorry to hear these distressing symptoms are ongoing,” she wrote. “But I don’t know anyone who offers that.”
When I find the email in 2019, my symptoms had gotten so bad that I was trying to file for disability accommodations at work. I realized I’d been actively looking, in vain, for an OCD therapist for five years. Those five years overlapped with the first year of a long-term partnership; the births of my niece and nephew; the start of a tenure-track job; my first home purchase; paying off my first car; the births of friends’ children; the end of the same long-term partnership; a new friend’s death; someone’s divorce; my mother’s diagnosis with Parkinson’s, my own diagnosis with Ehlers-Danlos Syndrome. I lived a life, but OCD was always there, lurking in the background — and several times in the foreground. It interfered with my sex life, my work life, my relationships with other people, my ability to have fun, my ability to stay calm. I worried about death and financial ruin and failure and disease and ethical compromises. It was the worst relationship I’d ever entered into: an abusive relationship with my own mind. My gifts had turned on me.
Considering that I’m literally paid to think for a living, this was a real pain in the ass.
***
“I’m just calling you back: you’ve got my name right. I do offer ERP, and you are in luck, I am accepting new clients. If you’re still interested, just give me a call back.”
Let’s be honest, before the first appointment, we all Google our therapists. The smart ones don’t post anything online. This one looks very young. The first therapist I saw told me that you should always look for the oldest person possible. Look for a grandma, she said. This one looks like my graduate students. But what do I know? I’m 37 years old and I was handed a kids’ menu last weekend at the airport. I’m living in a glass house and casting stones.
Polling my friends suggests I go for it — younger therapists have been trained in more up-to-date modalities. They are less jaded and less burnt, more enthusiastic, and maybe more interested. I call the intake coordinator and get set up. It usually takes about an hour and twenty minutes to drive there.
***
One morning I tried to mail a former student who is struggling with some big life issues a care package with shampoo, toothbrushes, snacks, non-perishable food items and a couple of dollars for bus fare to get to therapy. I had it all taped up in the box, and then all hell broke loose. It’s going to be over a hundred degrees today. The shampoo could explode and the food could melt. The items I ended up feeling comfortable enough to mail were a card and some cash. It was a lackluster birthday present.
The empty flat rate box still sits in the middle of my guest room. Occasionally I eat one of the granola bars. They are a bit stale.
***
As a first-year faculty member, I organized a large community-based conference that attracted over a hundred attendees. One of the administrators at the time remarked that I should have taken more credit for the work. The thought made me gag. I would have been happy to have had no one know who organized those events. I would have been happy to have organized the events and then not even showed up to my own party.
Power is an OCD nightmare. With it, as Peter Parker knows, comes great responsibility. I already feel responsible for everything. Carrying the weight of this responsibility does not make me feel like a superhero.
It makes me exhausted.
***
“So it actually sounds like you already know a lot about ERP.”
I do intellectually. Doing it is something different.
“Well, that’s what I’m here for. Have you ever taken this test?” She hands me a check list called the Y-BOCS. I’ve heard about this and read about this, but I’ve never actually taken the questionnaire. I’m somewhat grateful to find that there are categories that I can leave blank, like magical thinking and counting. There are compulsions that I don’t have.
“So we’ll go through this today and maybe what we can do is figure out a list of compulsions that you frequently engage in. And next time, we can go through and make a hierarchy of your obsessions.”
It sounds just like it does in the books and on the podcasts. This is ERP.
Actually, I do already have a list on my phone of all the things that were bothering me.
“Would you be willing to send it to me or can I read it?”
I don’t even censor myself. I just hand her the phone. In retrospect, I find it strange that I don’t even think about how germy phones are. It is so much easier to let someone read this list than to go through and try to explain it, or go through and try to tell someone what my fears are without triggering myself. She reads through the entire document and make several “mmm-hmmm” noises. They are strangely comforting.
She gives me a small notebook to track my compulsions, limiting them to 5 categories: washing, avoidance, checking, asking for reassurance, and mental review. Over the course of the first week, I mark off upwards of 30–40 compulsions a day. I am sure that this list was incomplete. The real tally was probably double that number. Tracking erratic scratch marks in the tiny yellow notebook makes it look like I am counting down the days in solitary. It’s an apt metaphor: OCD tells me that contact with other people is dangerous; going to places with lots of people frequently prompts panic. I feel like I am on house arrest.
The next time I see her, she has tabulated my Y-BOCS score. The four categorical options are “mild,” “moderate,” “severe” and “extreme.” While a part of me has already realized this to be true, I’m still a bit shocked when she tells me my OCD meets the criteria for “severe.” I’m more shocked to find out that some people struggle with even worse symptoms. It’s at this point that she says that she’d like to discuss the disability paperwork with me before she submits it, so that I can help make sure her answers are accurate. OCD is considered a “permanent” condition, meaning it is chronic and will last a lifetime even if your symptoms retreat.
***
My new psychiatrist is a psychiatric resident in his mid-30s. He is a nondescript white guy: he even wears leather loafers, which strikes me as a kind of preppy pastiche.
With the exception of one, all the psychiatrists I’ve seen have been this style of white guy. All of the psychotherapists I’ve worked with have been white women. It makes me wonder how people manage when they’re not looking for white people or are scared of men. The best therapeutic relationship I had was with another lesbian who never outed herself during treatment; I found that bit out ten years later. She was the first one — perhaps the only psychologist I ever saw — who recognized that my thought patterns were more than run-of-the-mill depression or anxiety, before the OCD was even officially diagnosed and fully manifest. I often wonder if this perceptiveness was due to her therapeutic skill, or that when she saw me, she saw me first as a person rather than a queer. When this new psychiatrist leaves the room to talk over the plan of action with his supervising doctor, it does strike me as strange that I have just disclosed several traumatic events as well as my deepest fears to a straight white guy. Straight men are actually peripheral to my social circle. My friends’ husbands are very nice, but on the whole I find them to be somewhat confusing creatures. Probably because I just don’t have much experience knowing them intimately. Most of my time is spent with a fairly diverse group of female academics and queer nerds. This straight guy now knows more about the weird parts of my brain than half of my friends. I actually find this physically uncomfortable.
But I’m here for an explicit purpose: to get meds. He puts me on Lexapro, starting with a very small dose to cross-taper with the Mirtazapine I’m already taking. The information sheet says I shouldn’t drive until I figure out how the medication will affect me. I’ve taken psychiatric drugs for years, but it’s not exactly productive to give a person with OCD who lives alone and is scared of hitting and killing people with their car a drug that could influence their driving. I stare at the colored warning sticker on the bottle and I imagine my therapist saying that this is an effective opportunity to practice exposure.
Then I swallow half of the little white pill. I’ve only taken 2.5 mg, way below the therapeutic dose. My body still rebels and for a day, I can’t keep any food down. I slowly acclimate and after four weeks, I make it up to 5mg. OCD generally requires a higher dose of psychopharmaceuticals than other mental illnesses, like depression. OCD also exhibits a lower placebo effect for medication interventions than depression does, which means that the likelihood that OCD is primarily a biochemical brain illness is much higher than depression (which could result from situational, biochemical or behavioral factors). The psychiatrist wants me to make it up to 10 or even 20mg. The upper limit for Lexapro in treating OCD can go up to 40mg.
This might take a while.
***
“That’s a dumb rule, OCD.”
I say this out loud to myself as I pick up my keys to go to the grocery store. OCD has just told me that I shouldn’t go to the store in Birkenstocks. “That’s a dumb rule.” It’s two days after my six-year relationship ended. I started the day with a panic attack in the shower, cancelled a massage due to contamination fears, and have lost seven pounds in five days because I can’t eat.
We decided to stop dating with lots of love and without much mess, other than the one we’d made of our own hearts. There were challenges between us, but OCD was a big one. Breakup day one: heavy sadness. Breakup day two: irritation and panic. Why couldn’t I have gotten better sooner? Why couldn’t everything have been different? What does it mean to have loved?
I had found an ERP therapist three weeks before we took a break. But I’m kidding myself if I think that three weeks of ERP could eliminate the challenges of my OCD. Look at me: I’m standing in my kitchen talking out loud to myself about which footwear is appropriate for buying bread.
I wear my Birkenstocks to the store anyway in a sudden moment of defiance.
“That’s a dumb rule, OCD.”
***
While OCD is a neurobiological problem, my illness was kicked into high gear by trauma. During my second year of graduate school, I was assaulted. She was a female graduate student and we met at a party after a feminist conference that was held on campus. The irony that my entrance into feminism came from student activism against domestic violence and sexual assault is not lost on me: without those experiences, I never would have found myself on the porch for that party. I never would have taken a Women’s Studies course or gone to that conference. I might not have been assaulted at all.
The CDC found in their National Intimate Partner and Sexual Violence Survey that queer women actually have higher rates of violence than heterosexual women: “44 percent of lesbians and 61 percent of bisexual women experience rape, physical violence, or stalking by an intimate partner, compared to 35 percent of heterosexual women.” For trans and bisexual people, this violence often starts early and in childhood. Stigma and the hypersexualization of queer relationships make it even more difficult to confront sexual and partner violence when it happens to us.
She was livid when I told her to finally leave me alone. She had groomed me for months. The events we experienced together existed in that gray area between dating violence, a manipulative, controlling relationship and unwanted sexual activity. She would wake me up to fight and yell at me; I awoke once to a sexual assault in progress, which was both disorienting and confusing. I had my first panic attack trying to get her to leave my house. I can still feel the way my whole body shook, my butch body that was excessively thin from anxious undereating and fear, as I held on to the edges of the wooden table and shook as I begged her to leave.
“WHY DO PEOPLE ALWAYS DO THIS TO ME?” she yelled. “YOU ARE SUCH A FUCKING BITCH.”
Many abuse survivors will tell you that the verbal abuse hits harder than any physical abuse ever could. When she finally left, I went upstairs and slept soundly for the first time in weeks. But then I couldn’t shake the doubt. I had no idea what was happening; what had happened. Maybe I had been cruel or manipulative. I’d dated one woman for three years in college. That was the entire extent of my relationship history at 26, evidence of the reality of what it’s like to be on the trans spectrum. Butches take a bit longer to bake. For all the hypersexualization of our relationships, the truth is that we tend to have fewer options and fewer opportunities to experiment and practice affection, sex and love, especially at a younger age, where parental supervision could provide a low stakes introduction to navigating relationships. Fewer still are those early opportunities that are the right pairings for our identities, genders and desires. I didn’t fully understand myself, my gender or how dating worked. Maybe I was a fucking bitch.
The obsessive thoughts came on slowly. Did I need to get tested for STDs? Could I give her herpes by having touched something in her house? I’d had recurrent cold sores from the stress; she kept pushing me to kiss her with an open sore and the only thing I am proud of is that I never did. The line between doubtful fantasy and reality started to blur. I survived a couple of desperate nights only because I could get OCD reassurance from the psychiatrist on call through the local ER hotline.
Had I gone into this with cruel intent? Didn’t I have a heart? The questions that follow normal breakups were on overdrive due to the abusive nature of what had happened. Immediately after getting her to leave, she started leaving messages on my home answering machine; bombarded me with Facebook messages until I left the platform; showed up at the classrooms where I taught and entered them in the middle of my lecture; asked my roommate if she wanted to hang out. It was a form of stalking that went on intermittently for almost a year. By the end of it, I weighed about 105 pounds. Occasionally I see her at conferences more than a decade later and my heart can’t stop beating for hours. Our contact lasted merely eleven days. I tried to tune out both her stalking and the ever-louder obsessive worry in my mind.
At first, I started washing my hands until the skin cracked. I didn’t realize it was a compulsion; I just felt the need to wash. Feeling dirty is a common response to sexual assault, but since I didn’t understand I had been assaulted, I didn’t understand why I constantly felt the urge to rid my hands of invisible dirt. I wondered if I could have HIV. I got tested: negative. I had horrible nightmares that she would die by suicide in my apartment; that she would break in and hide and try to kill me; that I would see her in class and just start screaming, making everyone think I was the one who’d lost my mind.
I worked in the library and when she saw me at the circulation desk, she came in and stared at me. The staring was a kind of secondary assault, a scopophilic terror that left chills down my spine and made my blood run fast and cold. Anytime I saw another woman who looked like her, I flipped out. A student in one of my new classes looked frighteningly similar to my abuser; I’m ashamed of the projected anger that landed on that poor kid. She had bad luck and took my class a mere four weeks after I was assaulted.
I started checking my supplies before teaching; on the way to my classroom; when I entered the building. Do I have a marker? Stop, open the backpack, touch the marker, zip it up, repeat. What about the textbook? A ten-minute walk became a twenty minute one. Panic attacks started to cycle, over and over again, sometimes on interminable loops that lasted for hours.
In The Man Who Couldn’t Stop, a memoir about OCD by British science writer David Adam, the author cited a study that appeared to show why only some people develop PTSD after sexual assault. While PTSD is now well-known as a common response to traumatic events, what’s not as well-known is that OCD is its less-studied cousin. The 2012 study from the University of Arkansas that he cites showed that the direction of someone’s feelings of fear and disgust to the assault determined the psychiatric response. If you were disgusted at the perpetrator, you had a higher likelihood of having PTSD. But those who felt revolted and disgusted at themselves: “They were the ones who developed signs of OCD.”
In the days after my assault, I showed up at the local urban garden where I regularly volunteered with the afterschool program. A wave of disgust came over me that rolled and lurched: “I shouldn’t be around these children,” I thought. I was revolted and ashamed that I had ever participated in such a deeply disturbing encounter with my assailant. That revulsion combined with subtle remnants of gay shame and homophobic discourses that depict queers as pedophiles.
That none of this was my fault took years to cross my mind.
***
“You have really soft skin,” she whispered, and smiled. “I really like it.”
We’re sitting on the floor of my apartment, kissing as she strokes my arms. I’ve liked this woman for weeks; she made it very clear that she wanted to date. I made it very clear that I have rules: no other partners, clear expectations, no funny business, we need to articulate what this is before we act on it. I am scared shitless. “I also get cold sores, but I don’t currently have a sore,” I remember whispering at the end of this list, tracing my lips with my finger, checking to make sure I was being truthful. We practiced radical consent without calling it that. My OCD was right there with us; I was checking and telling while flirting and trying to make a move. Talk about complicated.
I hadn’t kissed anyone since before the assault. Six years had passed. I was already in my early thirties. But coming out of trauma means trying to do everything differently this time; do it the right way; avoid the possibility that what was already repeating in my mind could repeat some more in real life. My rules might have also been a form of moral scrupulosity or something called “relationship OCD.”
She was incredibly respectful of my boundaries. We moved slowly, even after obtaining radical consent. I look back and realize my OCD took a lot of the fun out of the heady rush of a new relationship. A stiffness settled in that I still can’t negotiate my way out of. By the third or fourth day of hours of kissing, I’m in ecstasy, but my lips are chapped and I think I’m getting a fever blister. I keep checking my lip in the mirror, but don’t see anything. So we keep kissing.
The cold sore comes on 24 hours after we part. I should have known better. I should have put on the brakes. 24 hours after that, she sends me a picture of her eye. “I’ve got a stye!” she says. I try to keep my head from rattling. Is it a stye, or does she have herpes in her eye? She could go blind. I’ve read about that. I don’t know what to do, so I panic alone. If my OCD had been underground for the past several years, this was how it roared back to life. We’ve just been together for a week, and all of my preparations for this to be different come true. It’s very different. I’ve never started out a relationship with such clear intent, and I’ve never been in a relationship with full-blown OCD, terrified of causing harm. In 2013, I have no words for what I’m experiencing.
Eventually I tell her my fears. Her concerns during this conversation are not at all related to illness or bodily harm. Instead, she surprises me and says that she now worries that if something big happens, I won’t share it with her.
Her stye heals.
My OCD does not.
***
I’m sitting in a basement office that smells like dog. There’s a collie at this neurofeedback practice who generally sits in her kennel and occasionally comes over to sniff my knee. After reading The Body Keeps the Score and Neurofeedback and Developmental Trauma, I’m hoping that neurofeedback will help me get off the medication that’s causing intolerable side effects and stop the obsessive thoughts. It’s January 2018, nearly ten years to the season after I was assaulted. The practitioner seems hopeful. She sets up a skullcap with small plastic protrusions and uses a blunt needle to put conductive gel into the receptors. Sometimes it scratches my scalp and I wonder if this is even safe. What if she breaks the skin? How many people has she used this on? What do they have? What do I now have?
She has me look with eyes both closed and open at the painting on the opposite wall while she gathers a heat map of my brain with EEG software. I have an excess of beta-waves; also high alpha waves, even when I close my eyes. The always helpful Wikipedia tells me that beta waves “are often associated with active, busy or anxious thinking and active concentration.” As the practitioner tells me I have what’s called a “hot” brain, with lots of scanning activity, I think, no duh — tell me something I don’t know. I scan a room faster than anyone I’ve ever met. A colleague once asked me how I knew a faculty meeting was getting off track and intervened so fast. I didn’t know how I knew — I just know I scan fast. My brain is hot.
We do a couple different modalities — something called LENS; an exercise with music and beeps; I watch a film that stops and starts as my brain tries to train itself to stay within a certain frequency. For 30 minutes every week, I wear conducting cables on my ears and sometimes show up at work with a new cowlick where she’s attached a sensor. Sometimes it revs me up; other times, I start to feel better; I also start having more nightmares that are graphic and extremely violent. Overall, the neurofeedback isn’t enough to stop the OCD from relapsing as I slowly try to taper off my medication due to increasing side effects. Neurofeedback isn’t covered by insurance.
After eighteen months of appointments and out nearly $3,000, I quit. My symptoms are worse than they were when we started.
***
“How did you know it was OCD?” my friend Caroline asks.
“There’s a very specific quality to the thoughts. It feels different. It goes around and around and around without an answer.”
“Huh,” she says, “I always thought it had something to do with handwashing and stuff. But I never saw you do that.”
“Yeah, there’s different kinds. Mine focuses around harm or disease. Like, being worried I’ll hit someone with my car or accidentally give someone something fatal.”
My psychiatrist asks similar questions. “So if I came into your house, what would I see?”
“A fair amount of clutter on the table. Mostly clean. I’m organized. I’ve got my seeds for my garden sorted on the shelf, but it’s not perfectionistic. I don’t care where you put dishes or if you wear your shoes or not in the house. It’s these other OCD thoughts cause me distress.”
“And if I came in and mixed up all your seeds?” The suggestion is so preposterous that I feel like I’m in a psychological trap. Of course I’d be irritated. No gardener worth their salt would ever mix up saved seeds!
“It’d be irritating, but it wouldn’t kill me.”
“Any perfectionistic behaviors as a kid?”
“No. I did a lot of repetitive activities, like learning languages or calligraphy, but it wasn’t compulsive. I never felt like I had to do it. It was before the Internet. We all did more concentrated stuff.”
I’m frustrated that this psychiatrist is reaching back into my childhood, trying to pathologize my interests or temperament. They are not the problem. Fear and compulsions are the problem. I’m also not here to talk — I’ve had enough talking. I’m here for pills. Of course I had a subclinical predisposition to OCD: I’m an academic with a superhuman attention span. I could only complete a Ph.D. if I had some enjoyment of repetitive behavior, could ruminate, and was taught to be rigorous and careful in my work. Start teaching and grading papers and proofing your own work and you’ll realize that only a specific personality type can do this job, as repetitive as it is. But real OCD — with compulsions — didn’t start until after the assault. The relationship to trauma is so clear that it’s blinding.
The effect this trauma continues to have on my long-term relationship makes me want to vomit.
***
“I don’t want to lose you, but I also don’t want to have these conversations for the rest of our lives!”
I love my partner. She is formidable, fierce, bright, and kind and she loves that I am a creative, short, trans-y butch who likes to hike. I also know that in this moment, she’s right. I don’t know if I can take the risks that she wants. But my need to protect her from risk is also one of the things that’s ruining our ability to be together.
At this moment, I still don’t recognize the extent to which OCD is driving nearly all of my decisions and avoidances; I still can’t predict the coming relapse that’s already been set in motion and that will exponentially gather steam over the coming year. I’m never quite sure if she sees my dogged persistence in trying to find help and really grasps how hard I’m trying to fight the OCD.
When we break up, I know we’ve both made some mistakes. We were old enough and had experienced enough that we both brought along our own hurts and fears and limits. While my OCD was not the sole cause of our breakup, it made a thick crack in our foundation. That particular crack might have been sealed with proper therapeutic treatment, and our relationship might have succumbed to other natural causes, only without the added frustration and sadness of severe mental illness and recovery. Treatment often makes OCD worse before it gets better.
She had a cut on her lip when we broke up.
I couldn’t even give her a kiss goodbye.
***
One of the classic OCD texts several people recommended to me while I was in the middle of a spiral is called Brain Lock, by Jeffrey Schwartz. I had rejected the book while scanning Amazon because the cover makes it look like it’s advertising a cheap life hack: Change your brain and change your life! But Dr. Schwarz, it turns out, runs a clinic that studies fMRI images to see which parts of the brain are involved in OCD and whether or not exposure treatment could change your brain’s activity patterns. The fMRI images he includes in the book look a lot like my neurofeedback EEG: these brains are hot. He describes OCD as an illness that overheats the brain because the automatic transmission fails. Getting out of the overactive stickiness of a malfunctioning orbital cortex requires OCD sufferers to learn how to drive a manual transmission, to learn how to use their wits to shift gears manually through ERP. (The car metaphor was his idea; I’m not that butch.)
ERP takes effort. Lots and lots of effort. Every action that should be automatic, that should be as easy as breathing, requires cognitive retraining. Every compulsion has to be stopped, one by one. Leaving one behind opens OCD up to chronic relapses. fMRI scans show that this method of cognitive retraining cools down the brain, and that cooling (lower activity) is visible in future scans. I’ve been in therapy for nearly a month before we even do any exposures.
So far, I’ve just been identifying compulsive behavior. I start to be able to distinguish between a broad swath of compulsions, noticing the differences between checking and telling; between self-reassurance, asking for reassurance and mental review; between avoidance and distraction; I come up with new categories on my own that also turn out to have clinical names, like “experiential avoidance” (when I use my phone or TV to numb out). About a quarter of people with OCD who can find therapy leave therapy because it is simply too distressing and hard.
“So: I don’t want you to check the sink when you leave the house. You can check the stove once, ok? And if you find yourself wanting to check again or getting stuck, you need to sit with the anxiety instead of checking. Go for a walk. Drink a glass of water. Breathe. Any of those are better than using a compulsion.”
I try to focus on just this level of exposure and not ask escalating questions about the other more abstract and intellectual obsessions that seem both more realistic and harder to abandon. I think more often about these abstract fears, and they are also more likely to cause panic. While I’m relieved to read so many books that offer a consistent protocol for treatment, I’m also paralyzed. It feels irresponsible and reckless to ignore the fears I have. I keep panicking.
My therapist assures me it gets better.
But I doubt it.
***
The French doctor who first recognized the symptoms of OCD called it the “doubting disease.” The Germans call OCD “compulsive neuroses” or “compulsion disorder.” Both French and German terms emphasize only one part of the illness. The English term “obsessive compulsive disorder” tries to capture all three: obsessive doubts that cause distress; compulsive behaviors that are designed to neutralize the distressing thoughts; and the fact that these disordered behaviors are significantly interfering in one’s daily life.
The website BeyondOCD describes obsessive doubt as one of the most debilitating characteristics of the illness:
“Doubt is one of the more maddening qualities of OCD. It can override even the keenest intelligence. It is a doubt that cannot be quenched. It is doubt raised to the highest power. It is what causes sufferers to check things hundreds of times, or to ask endless questions of themselves or others. Even when an answer is found, it may only stick for several minutes, only to slip away as if it was never there. Only when sufferers recognize the futility of trying to resolve this doubt, can they begin to make progress.”
Part of ERP involves ranking your obsessions to tackle the least distressing first. I’m having a hard time figuring out how to do so: everything feels insurmountable. I offered my neighbor fresh tomatoes in exchange for chopping my wood for the winter. But every time I attempt to pick some and take over a basket, I fear there could be something contaminated in them that would kill her. After all, most of us eat a ripe garden tomato raw.
Doubt is a hazy fog; fear leads to moral compulsions that tell me not to act. While mindfulness is often touted as an excellent component therapy for OCD, all I can think about is a Buddhist parable that once gave me comfort and that now drives me mad.
A man came to a monk and was very agitated. He spoke and spoke and raved and ranted to the monk, trying to explain his problems. He asked the monk for advice. “Tell me, what should I do?” The monk calmly looked at him and said, “Do nothing.”
This story rattles around in my mind. I’ve been alone at home for four days, doing nothing. Right now, I am all thinking, no acting; all caution, no calm. “Doing nothing” starts to seem like justification for avoiding exposures.
Before we broke up, I told my partner that ERP was the scariest thing I’d ever done.
“But you don’t really have any other option, do you?” she said. This was her parting gift to me, said matter-of-factly one morning as we walked out of a hotel lobby. I doubt she was conscious of giving it, but she gave me the gift of no escape — right before we let each other go.
***
I cut up parsley, cucumbers and tomatoes for tabbouleh. I’m careful to wash each vegetable and my hands and mix up the salad. I put it in the fridge to chill. The creeping doubts about whether my protections have been sufficient grow the longer it sits in the fridge. The next day at lunch, I force myself to eat it. How clean is my kitchen? I don’t know. What invisible threat could be lurking in between chopped leaves of parsley? I don’t know. I eat it anyway. At least a little bit.
It tastes good.
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The next essay in this collection can be found here.
All OCD Academy essays can be found on my profile.
