Breath & Shadow
A Journal of Disability Culture and Literature
It’s OK Not To Be OK
By Teri Zucker
I am mentally ill; that’s much easier to write than to say. Yet, I read my own statement and feel it is an exaggeration, as I associate mental illness with someone who is dangerous to others. But with me, the danger stays inside my head. I have obsessive compulsive disorder, commonly known as OCD. I've had it for years and didn't even know it. I just knew I was "different." Then one day, leisurely reading an Anne Landers column, I noticed a letter written by someone who claimed to have something called OCD. Like me, this person engaged in behavior that many would consider unusual, or even bizarre: checking work over and over again to see if a mistake had been made; worrying about forgetting to turn off or leave on lights; fearing contact with dirt, germs, etc. It was somewhat comforting to learn that my weirdness is something other people go through, and it even had a name — albeit, in my opinion, not a very good one. Was "disorder" supposed to mean that there is an orderly way of being obsessive and compulsive? I'd prefer "obsessive compulsive syndrome," but maybe OCS is already an acronym for something else.
As a very young child, I was preoccupied with having dirt on me and not realizing it. I would constantly ask my mother if there was dirt — or sometimes even body fluids — on my hands and clothes. It wasn't long before dirt actually traumatized me. Playing in a garden with neighborhood kids, I looked down at my blackened palms, grimy particles clinging to every crevice, and burst into tears. The other children were bewildered, and apparently my behavior made a huge impression on one girl in particular.
During my preteen years, oftentimes I’d be cleaning food spilled on my shirt, or examining my hands, which had been face down as I sat on a cold, gravelly concrete porch — scrutinizing the tiny red indentations, and picking off some dust and little pieces of gravel. These things did not scare me at the time. Feelings of worry and contamination would come and go, either separately or simultaneously, at different points in my life. It was the girl's cutting reminder that was humiliatingly painful. "Remember when you used to cry when you got dirty?"
One day, in my first year of junior high school, clay got all over my pants during ceramics shop. This time, I cried in front of the entire class. I was already very shy and awkward, experiencing difficulty with the transition from elementary school, so crying easily, for no apparent reason, did not work in my favor. Even the teacher thought I was a bit weird. Not that he said anything malicious, but there was the look, as if I were an abandoned waif on a cold, dark street. He told me to go to the sink and clean off the clay. Then he avoided any acknowledgment of me, a potential “problem” child. I was miserable throughout the rest of the period, as giggles and dirty looks abounded from all corners of the two huge tables in the room. A therapist with whom I met several years later said that the dirt/crying incidents were caused by a fear of punishment. I gave this theory credence and thought I had some deep-seated trepidation. But what neither of us understood is that what I felt was not fear, but repulsion: A substance was on me that didn’t belong there. I was disgusted with myself — and thought that I was disgusting.
In retrospect, my level of stress probably played — and continues to play — a huge factor in the illness's ups and downs. After I graduated from high school, I soon found stress and college to be synonymous. All kinds of bizarre thoughts and feelings plagued me as I dealt with the pressure of adjusting to an impersonal environment, exams, and aloof professors. Knowing that all my thoughts were unusual didn’t make them any less real. There was the constant need to wash my hands (which resulted in a highly visible red ring around each wrist); the gripping fear that I would betray someone I cared about — maybe reveal a confidence accidentally, or laugh at a derogatory remark made about a friend of mine; the frightening feeling not only that I might get sick, but also I might be "careless" and infect someone. I recall sitting in a movie theater with a friend, when someone behind me coughed. Frantically, I turned my head back and forth and touched my hair. My friend questioned what I was doing, and I nervously told her that I thought someone coughed on my head. She couldn’t have looked more perplexed or less sympathetic. After a few more unidentified coughs, and my expression of the same worry, she said, "What's wrong with you? You weren't like this before." Embarrassment seeped through me as I struggled to sit back and focus on the movie. In addition to feeling the need to rid myself of someone else's germs, I was now concerned that my friend might go tell others that I’m a freak. On top of that, I thought I was a freak.
When I finished school and moved on to the working world, it wasn’t long before every job task became laborious: Check, check, and check again, with the need to make sure things were done correctly and nothing was missed. Memory doubt followed, and there would be one or two more checks and then the second-guessing. Was a detail omitted? Something out of alphabetical order? Filed in the wrong drawer? I feared receiving a reprimand or, worse, facing termination. A walk past a trash can while making my way through with a pile of papers made me worry that I had accidentally dropped one of the papers into the trash without realizing it, and so a secret search through the can would commence — and all the while I would be watching to make sure no one came in and asked if I had lost something. And then of course, I felt the need to wash my hands after touching other people’s trash. I couldn’t mail a check without staring at it for several minutes, making sure there was no omitted or incorrect information. Once that envelope was closed, it was a chore to avoid the temptation to open it and check again.
Even leaving the house in the morning became complex. I’d turn the light on and off several times to satisfy myself that it was indeed off. Sometimes, right after I had locked the door and begun walking down the street, I’d start to fear that maybe I bumped against the stove knob and the house might burn down. Or maybe I hadn't locked the door. Often I turned around and went back to check that all was well. With OCD, you are 99.9% sure that everything is all right, but that tiny percentage of doubt just gnaws at your mind.
As I neared middle age, my OCD took hold of me with a vengeance. I guess I could attribute this to the fact that I was in a bad employment situation, with a seedy boss who was beyond frugal, to put it kindly. This resulted in, among other things, less than satisfactory cleanliness — especially the company bathrooms. My stress escalated, and every day I felt as though the floor was going to fall out from underneath me. After all, I wanted to feel a sense of comfort and protection at the place where I spent so much time, but it was just the opposite. As if I were trapped in a haunted house, I anticipated all the evils that would jump out and engulf me.
The manifestations were not confined to the workplace. Since I happen to live in what is probably one of the dirtiest cities in America, even taking a walk down the block was threatening. Wondering what I might step on; whether the wind might cause a dirty napkin or tissue to travel along the sidewalk and brush against me; whether I might be forced to walk through a pile of autumn leaves (who knows what could be on those leaves?); whether I might accidentally brush against a Dumpster, a wastebasket, or an unkempt person. In my mind, the possibilities for "contamination" were endless, and the New York City subways seemed to be a breeding ground. People holding on to the poles that I’m forced to hold on to. Who knows what they had on their hands? Sometimes a pole would feel sticky: Was it sweat? Or some other substance? After all, it wasn’t unusual to see a hygienically challenged person on the subway, or even someone engaging in lewd acts during off-hours. How could I be sure one of them hadn’t been sitting in the very seat I took?
On trains and buses, I examined each seat very carefully. If there was any sign of a stain, food, paper, etc., on a seat or on the one next to it, I stood. But if I was near someone who looked or smelled undesirable, I would do anything, even push my way through a tight crowd, to avoid standing next to that person. I even sprayed my clothes and shoes with Lysol to ward off all traces of contamination. I knew that whatever I'd come in contact with would do me no harm, but as a fellow OCD sufferer once said, it was really the "yuck" factor that held on to me.
As things worsened, I started doubting the cleanliness of my own home (and, devastatingly enough, it got to the point where I feared physical closeness with my sweet dog). Going to a public bathroom was akin to being sent to a torture chamber. Washing my hands took longer than the entire bathroom process. I needed to get rid of anything that might have gotten on me after coming in contact with the stall door, the toilet paper, the flush handle. I prayed no one would walk into the bathroom while I was obsessively washing. You would think the mere embarrassment that I felt would be reason enough to realize that what I was doing was irrational. No such luck. My mind kept telling me that I had to be careful to get any traces of contamination off me, and the washing routine would start once again.
I never felt clean; in fact, I felt like I wanted to jump out of my own skin. Friends reassured me repeatedly, telling me that nothing would happen to me and I shouldn’t worry. But I still needed to ask over and over again, worried that they might have rethought the matter and changed their opinion. I even called hotlines. One of these operated through an agency that offered programs for people with OCD and other mental illnesses. I tried to call when the more caring volunteers were there, but with these people I was in essence doing the same thing that I did with my friends — constantly repeating the same question, hoping they would not change their answer. I once called a department of health because I was worried about dirt being on my eyeglasses. The jerk (the best way to sum up his character) ridiculed me. When I told him I have OCD, I could hear the derision in his tone as he said, "Let me ask you something. Do you feel you are always in a dirty environment?"
I kept my composure, answering honestly, "Yes."
He responded, this time with no effort to hold back laughter, "Do you think that’s normal?"
I felt so ashamed and degraded. Here I was, reduced to asking for help from someone totally lacking in compassion and professionalism, yet I felt I needed his assurance. Day after day I felt filthy and dirty and like I had no right to touch anyone, nor did I want to touch anything. Seeing blood or facing the possibility of blood getting on me totally freaked me out. Dust on my hands horrified me. I was not clean, and therefore was harvesting loads of germs. If my shoelace came untied in the street, I hated tying it again, inspecting the laces to make sure they hadn’t dragged in anything, doubting the cleanliness even though I could see no signs of dirt. When I arrived at my destination, the first thing I would do was go for a hand washing.
I’ve embarked on a journey toward recovery, but there has been no actual recovery for me, only control. Medication has helped. Some people are dead-set against that, and kudos to those who are able to manage an illness on their own. I don't feel I have the constitution. And besides, I believe the use of medication expedites the healing — or, in some cases, soothing — process.
Today, my job as a copy editor leaves me in high-risk OCD territory. Although some people say that my OCD makes me the ideal copy editor, because it compels me to focus on nitty-gritty details, people don't realize what goes through my mind when I have to face the fallibility of my sense of detail. How could I have anything but a low opinion of myself when I have missed an error, one that someone else caught later on? Worthless. A failure. I need approval and reassurance. So I check with my boss, who is goodhearted but often high strung and irritable (not conducive to calming me) — to see if things are going all right. Then I worry that he has read my actions in a completely negative light. Paranoia. Insecurity.
Nevertheless, I know I have made progress in my OCD battle. I am now able to prevent the contamination manifestation from ruling me. Keeping busy has been great therapy for me: There's work, friends, community theater and travel, and I ‘m pretty much okay with my own company. When I think back to 10 years ago, I feel somewhat amazed. I’ve also been amused and comforted from the media's portrayal of OCD behavior: Jerry Seinfeld throwing away his shoelace after it becomes untied in a men's bathroom, and going out of his mind when his girlfriend won’t reveal the item of his that she put in the toilet; Detective Adrian Monk eating his alphabet soup, well, alphabetically.
I don’t know if it’s possible for me to totally conquer my OCD. Perhaps a new medication will come along, but I feel pretty good with the one I’m currently taking. Besides, who knows the side-effects of a new drug? Therapy sessions have made me feel like a specimen sent to a lab for observation— as though I were supposed to divulge some deep, dark family secret as the key to my OCD, but I don't know what that secret is. What I really hoped for was a therapist to tell me that there was no reason to worry, but any comfort I felt was only temporary. I don't need a therapist to tell me that my OCD is probably hereditary, nor do I want to be treated like I’m helpless.
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Laying out all the elements on paper has motivated me. I have set challenges for myself, and met them with determination. Perhaps it's time for one more. I have already decreased my OCD's status to challenging from overwhelming. I am thankful that I can share this part of my life, unapologetic and unashamed — especially since I have heard more than one person refer to OCD as "the secret illness." For all I know, people I am around every day could be dealing with it. When I feel like I'm being pulled into a traditional OCD fear, I just say to myself, "It feels so nice to be normal," and I can carry on. Corny? I guess. But the alternative terrifies me.
Teri Zucker resides in Brooklyn, NY. Her creative nonfiction has been published online at The Poet’s Haven, Absolute Write and Outcry Magazine. She hopes this essay will help to raise awareness of obsessive compulsive disorder and inform people of the struggles experienced by those afflicted with this illness.
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