Impulse Control Disorder NOS: It’s no big deal


girl350He was a blue-eyed, blonde-haired turd, and his name was not Norbert, but that’s what I’ll call him, because a dorky Muppet name feels right for that kid. He sat in front of me in eighth grade geometry, and when our teacher would turn to face the chalkboard and count off a series of numbers aloud, Norbert would turn around too, point his scrawny finger at my face, and count each red mark there. I don’t know if the teacher ever heard him or not, but she never reprimanded him, and I never defended myself. I didn’t know how. I didn’t even know I could. My mind went blank and my body surrendered to a strange, static interference, like the black and white pixels that pulse on your television screen when it’s stuck on the wrong channel. Norbert had access to the remote control and enjoyed turning up the volume for his own entertainment.

It only took a couple of minutes for the grey mind-static to turn red, and my heart would race as my skin got hot—except for my hands, which remained cold and numb. My heartbeat left my chest and settled in my eardrums. It was the embodiment of powerlessness.

Norbert’s teasing was upsetting, but it didn’t ruin my life or interfere with my academic progress. Even then I understood that he was irrelevant; my struggle was on the inside. I’m the one who created the red marks on my face and then tried to hide them with bangs or hats or makeup. I knew that picking at my skin would make it worse, but I couldn’t stop. I didn’t know that repeatedly scrubbing my face with soap would only create further irritation, so I’d continue to “cleanse” until my face was raw and swollen. I’d stare in the mirror and search for any imperfection, real or perceived, and try to get rid of it by scratching or scraping or rubbing or squeezing. The excoriation was both physical and psychological; every self-induced wound was accompanied by the same unfortunate mantra: What’s wrong with me?

It’s called Dermatillomania, but not one of my doctors, therapists, dermatologists, estheticians, or family members had ever heard of it. I too had never heard of it until several years ago, when a courageous friend admitted she had pulled out every single one of her eyelashes and eyebrow hairs.  Her diagnosis is Trichotillomania: compulsive hair pulling. Most medical practitioners recognize the similarity between these two disorders, but there is still some professional controversy about what causes dermatillomania, how to treat it, and how to categorize it, so there is no current listing for it in the Diagnostic and Statistical Manual of Mental Disorders. It might be included in the next version of the DSM, but until then, my diagnosis is “312.30: impulse control disorder not otherwise specified,” which rings true, because I never understood my own impulses, nor could I control them.

It started in my sleep. As a pre-teen, I’d wake up in the morning and find traces of blood on my pillow, my face, and my fingertips. I couldn’t recall ever touching my skin, but I still remember the dreams that may have triggered the behavior. My nightmares were frenetic and repetitive. They were dominated by a dark red, apocalyptic storm or sometimes an electronic, swirling vapor like something from an early Star Trek episode. Both forces had agency and power, but because they were not human, there was no way to reason with them and negotiate an escape. They could rotate the horizon, twist my limbs off, or more often, keep me trapped in a corner. I’d often wake up in the middle of the night and call for my parents. There was only one problem. For them to hear me through their bedroom door, I’d have to yell. But that crazy, pulsing electronic vapor, which was still blocking my doorway even though I was awake, wanted to keep me quiet. So I’d attempt the loudest whisper possible and keep an alert eye on the doorway while trying to calm down.

safety_pins_6189064Every once in a while, the vapor would let me pass to go to the bathroom and splash cold water on my face. But sometimes it wouldn’t let me back in my bedroom, so I’d sit on the bathroom floor and insert rows of safety pins or sewing needles into the superficial skin on my arms and legs. It was my own medieval bloodletting. I confused self-harm with self-soothing and thought the release of body fluid might also release the demons in my mind. I was wrong about that, but the ritual did put me into a trance and generated enough endorphins to ease my anxiety and dissolve the vapor. I’d climb back into bed and remind myself to remove the safety pins before my mom could see them in the morning.

My earliest self-soothing technique involved tiny, paper Dixie cups and anything I could find in the medicine cabinet. I’d plug up the drain in the sink and make potions with all the things I was not supposed to mix: toothpaste, shampoo, Pepto Bismol, Mercurochrome, bubble bath powder, rubbing alcohol, hydrogen peroxide, soap chips. It was so fun to swirl it all around with one finger until the whole thing was pink and thick, but as soon as I heard Mom’s voice in the other room and looked down at the big mess in the sink, I’d scoop up the gummy paste into my hands and pour it into Dixie cups. I loved the contained chaos of those little cups. They were the perfect size for my little hands. I’d hide the wet potions under the sink until they hardened into a chalk-like clump. I’d wait until they were completely dry, and then peel away the paper cup and let the mixture crumble through my fingers into the trash. Every time it dissolved, I felt ok.

Occasionally, my sister would join me and we mixed potions together. For her, it was fun, rebellious. We were two witches brewing concoctions, and we could decide if they were tonic or poison. Somehow by genetic order or accident, my younger sister escaped my inheritance. I have other family members with anxiety or mild OCD-related manifestations, but my sister isn’t one of them. She used to bite her nails down to the nub, as many Dermatillomaniacs do, but that behavior ended with her youth. She, too, was teased in school, but when the boys would call her “Thunder Thighs” for her muscular quadriceps (she was a gymnast), she’d confront them, dare them to punch her in the belly knowing it was as strong as her legs, and then scoff at the boys’ weakness: “Really? Is that all you’ve got? How disappointing!” She’d turn the trajectory of bad behavior into a boomerang and throw it right back to them. Somehow she understood the notion of personal power. I just absorbed Norbert’s ridicule and retreated into books and ideas, mythology and history and literature. I preferred the approximation of other people to the real thing.

My favorite book was Frankenstein, which I found at the library one day tucked in between the Nancy Drew mysteries. I read it in ninth grade—at least half a dozen times—with my flashlight under the sheets in the middle of the night. I didn’t understand all the words, but I loved that poor, lonely, hideous creature; his avowal was mine too: I am a miserable spectacle… pitiable to others and intolerable to myself. He declared himself wretched again and again, and I understood.

Every dramatic moment in Romantic literature is a very big deal. There’s a lot of teeth-gnashing and hand-wringing. But Mary Shelley’s language never seemed overblown, because I felt exactly like the fiend of Doctor Frankenstein’s machinations. We both wracked our brains to understand the grotesque unfairness of life: why? Why? WHY? WHY?! Why was I made this way? Why am I so weak and ugly and why can’t I stop destroying my own face?

IMG_impulsecontroldisorder  within siteI painted a self-portrait the next year that could have been titled Frankenstein’s Monster. It barely looks like a person and she barely has a body. There’s just a putrid, bloated, fleshy mask. The skin looks like it’s decomposing and reproducing at the same time. There are tiny white slits for eyes and a tiny red incision for a mouth, but no space for expression or escape. There’s a hangman’s rope coming from the top of her head, the same flat, brownish-pink color as the rest of her, as if her own form could generate appendages with the power to choke at will.

I knew she wasn’t me. I also knew that one large pore near my nose was not a gaping, black hole. I knew I could fit into petite sizes and did not weigh two hundred pounds. But all my self-assessments were entirely out of proportion. Someone other than me still had access to the remote control and could turn up the volume on some already-exaggerated thoughts. They were loud, intense, and relentless enough to make suicide a preferable option—even though my young skin healed quickly, even though I no longer endured nightmares and safety pin rituals, even though I lived an otherwise normal life. I had friends and flirtations and good grades and I loved my teachers and my parents. But I still thought: someday, everyone is going to find out that I’m actually a horrible monster, and I’d rather kill myself before that happens, because the exposure would destroy me anyway.

As a perfectionist and therefore extremist, I was drawn to the permanent resolution of anxiety that suicide represented, but I also knew my death would create more pain and chaos for my survivors, so I attempted other ways out. I thought if I could start all over, I could do it right. Wrong again. There is no such thing as a human tabula rasa; we cannot erase our genetic imprint or cognitive history. But I did try to wipe the slate clean by laying out in the noontime California sunshine long enough to purposefully burn my skin, thinking this would allow me to peel away the tissue damage I’d done and then reset my brain. When that didn’t work, I devised a more extreme strategy and paid someone to pour acid on my face.

fire_eye_smShe was an esthetician, and I thought she was experienced, but not with this particular product. She called it a chemical peel, admitted it was untested but insisted she’s had great success with clients who tried it, and told me it might burn a little or remain pink for a few days. But something was wrong. It did not burn a little. I felt like those guys in Raiders of the Lost Ark whose faces melt off when the Ark of the Covenant is opened. My face was on fire. I should have pushed her out of the way and dunked my whole head in the sink, but she told me to breathe through the discomfort. Involuntary tears flowed from my bloodshot eyes, and I thought: maybe I deserve to be punished like those evil Raiders.

I ended up with second degree burns, and the blisters and bright red patches took months to heal completely. I later tried an oral drug to clear up my face, and woke up three days into the regimen to find myself in a pool of my own blood from a nosebleed that wouldn’t stop. I wanted to take a hammer to my skull to crack it open and release the pain. It was beyond a migraine. My body rejected pharmacological help and I rejected human help by hiding in the house. At this point, I was living alone and could remain isolated for days if I decided my skin was too objectionable for the company of other people, even though I knew the problem was my erroneous self-perception, not my face.

The first—and perhaps most significant—shift in perception came from a book. I read Dante’s Inferno in graduate school, and found something so satisfying about a whole book full of eternally wretched souls. Everybody’s getting punished for something. I rather appreciated this organized system of retributive justice because at least it implied order in the universe.

I thought about Norbert for a second. Hmmm…which level of Hell for his transgressions? Lust? No. Greed? Gluttony? No. We had to go deeper. The seventh level of damnation was reserved for those who had injured other people in life. They were condemned to a river of boiling blood. Just the idea gave me chills. No, that’s too harsh, I thought, for a clueless kid. He didn’t know I was at war with myself. I kept reading to find out who’d be stuck in level eight. But there was yet another ring in the seventh level, one I didn’t expect. I found myself represented there, right next to where I left Norbert. Near the river of blood, there’s a Wood of Suicides.

woodface300Those who turned the violence against themselves are trapped: twisted and entangled and transformed into trees with black leaves and poisonous thorns. When Dante breaks off a branch, the wound secretes both blood and words: Why are you tearing at me, the tree wants to know. Why do you rip me?

I cried for those trees. When they had the chance to speak, they didn’t ask for help. Instead they just wanted to know why, and the unanswerable question condemned them to endless suffering.

treehug300All my WHYs rolled around in my head like a ticker tape transmission: Why can’t I just stop this and leave my face alone? Why am I so sensitive? Why does my sister feel connected to the world while I feel so alone? Why am I an outsider? Why are people so overwhelming? Why can’t I stand up for myself more? Grow a thicker skin and get over it and just be normal?

At that moment, I realized that instead of asking why, I should ask for help. Why am I like this? I don’t know. The answer no longer matters to me. The diagnosis, however, does matter, because many insurance companies will not cover a disorder NOS, or “not otherwise specified.” Apparently our symptoms and suffering are not enough for them—they need to index and catalog us before they can help liberate us from our own personal level of hell.

Some researchers say that dermatillomania is a form of Obsessive Compulsive Disorder. Others think it’s more like substance abuse because it has addictive qualities. One therapist suggested my Body Dysmorphic Disorder was the original cause, and social anxiety a consequence. A dermatologist recently told me that the dermatillomania would stop if I could sufficiently address my emotional sensitivities and figure out what upsets me so much. He wanted to know if I was a victim of violence or neglect.

I don’t know why my DNA sequence chose this translation, but I do know that the dermatologist was just plain wrong. There was some inattention and subsequent instability in my childhood home, particularly during the years before and after my parents’ divorce, but I never suffered from any significant abuse. The impulse to pick myself apart does happen when I’m tense or agitated or confused, but also when I’m merely bored or distracted. At this point in my life, I’m aware of my triggers, and I’m also happy most of the time. But the disorder is still there. It’s some combination of genetically-based neurological impulse and cognitive habit. That means I can change it, but not by force or revelation—rather, with discipline and commitment and support and time. I don’t know why some addicts get sober and some don’t. There are doubtless many reasons. I do know that all of them will work with the consciousness of addiction for their entire lives, even if they never relapse. I believe that’s true of me too. I wouldn’t say I suffer anymore, but I do work at my health.

I’ve been doing pretty well, until recently. I was out on a date, at dinner with a very handsome man, feeling giddy with the distraction of his very beautiful hands. We were talking about romantic history, and he said he was shocked by how many of his recent dates were on ten kinds of medication and suffered from all kinds of strange diagnoses…and then he caught himself and realized I might be one of those women, so he turned to me and said, “wait: you haven’t been diagnosed with anything, right?”

I didn’t say no, but I shook my head and looked at him like he was the crazy one for even asking. God no! I’m NORMAL. Not like one of THOSE people. Can we get back to dinner now?

I lied. Perhaps appropriately…I get to decide what and when and how much of myself to share. I hardly knew this guy. But I regret the missed opportunity to speak without shame, maybe even educate him. What if things work out with us? Then I’ll have to find a way to bring it up and it’ll be a bigger deal because I was not honest from the start.

My lie felt like giving up the remote control again. It amplified my fear and the potential stigma. Secrets grow like mold; we don’t even know they are proliferating until the damage is done. I’ve still never even discussed most of this information with my own family. So I decided to write this essay and restore appropriate proportion to my diagnosis. It is not the most important thing about me. Dermatillomania is not more important than my love for my family and friends, my desire to be of service to my students, my writing process, my yoga practice, my future, or this very moment.

I know I got to this point because I joined an extraordinarily helpful support group for several months. It was for people with Trich and Derm, and our therapist was a smart, compassionate, candid young man who dealt with his own form of OCD. Group members at that point were all female. We shared what worked for us: some people wore gloves, people with Trich wore hats or wigs, I applied liquid band-aid to my fingertips which created a palpable barrier to help snap me out of unconscious behavior, many of us found consistent relief in the practice of yoga or meditation, and more than anything else, we talked about cognitive restructuring: how to change the way we think. How to regard our disorders and ourselves differently. How to respond to our impulses and habits.

The spinning mind is something we all understood, and I was surprised that merely sharing my thoughts out loud in group gave them somewhere else to go, a new route besides around the same old internal track. If I started to think I’m ugly or I’m weak or I’m crazy or I’m undisciplined, I’d tell the others, who immediately understood, and then not only did the mind-cycle stop, I also no longer had to use all my energy to guard those secrets and self-judgments.

velodrome300What a relief to recognize my brain chemistry in other people’s similar secrets and confessions. I no longer think there’s something wrong with me. We are all manifestations of a diverse humankind and our brains don’t all work the same way. Mine is like a velodrome sometimes, and my mind works like a bicycle built for racing those tracks: one gear and no brakes. My thoughts spin round and round, gathering speed and intensity. Each time I shared my fears and insecurities, the bike slowed down, and with enough practice, not only could I stop the bike: I could see the track from a distance. I could watch my thoughts spin and detach from them. Sometimes this simple shift in perception is all it takes to immediately ease my suffering.

Most of us had joined this group in order to alter our behavior, so we would sometimes feel guilty when we succumbed to the habits driven by our hands, and then those feelings would refuel the fixation on yet another physical or internal flaw, putting us back on that spinning track. In an effort to once again get off that bicycle, I parted ways with the group in terms of my goals. I decided that self-acceptance was more important than changing my behavior. Can I accept that I am imperfect? Flawed? Human? Can I accept that I am highly sensitive and sometimes anxious? What if the Dermatillomania never goes away—can I live with it rather than constantly wishing it would change? I could certainly answer yes to those questions if anyone else was asking them; not only did I accept the others’ sensitivities, I admired them. These women were creative, intelligent, articulate, passionate people. Many were artists, some were committed to social change and justice, and all of them were courageous and vulnerable and supportive. I could see past all our scars and scabs and bald spots and find a profound, abiding beauty. If I could accept these women, I could accept myself. This conclusion ultimately changed my behavior because it helped me to stop looking piecemeal into a distorted mirror. I could see myself through the eyes of others as an ensemble whole whose parts all contribute to who I am and do not need to be fixed or picked apart. The day I decided I was strong enough to leave the group and rely on my own skills, I looked around the circle at all these women and found them remarkably beautiful.  The feeling was pure and clear: If I could see the beauty in them, it must be true for me too. I know other people can see past my imperfect skin and find the beauty there. And for me, that’s a very big deal.

For more information:

Trichotillomania Learning Center:  http://www.trich.org/

OCD Center of LA: http://www.ocdla.com/

 

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