Catherine Berg lives in Kingston, NY. She’s written two unpublished novels as well as short stories, essays and plays. In 2011, “Landis & the Bear” was produced at Seattle’s Stone Soup Theatre as part of their Double (XX) Women’s Play Festival. She holds an MFA/ Fiction from the Iowa Writer’s Workshop.
Sometimes I think the only thing wrong with me is that I think something’s wrong with me. But then, of course, I could be wrong about that.
I’ve had so many diagnoses over the years it’s ridiculous –Major Depression, Bipolar, Unipolar, Polar Bear (my name for Seasonal Affective Disorder), Obsessive Compulsive Disorder, Attention Deficit Disorder, Borderline Personality Disorder, Social Anxiety Disorder. For recent paperwork , my therapist Robin and I decided Generalized Anxiety Disorder and Depression NOS were actually what fit me best at this point.
I love the abbreviation NOS – short for “Not Otherwise Specified.” What the fuck does that mean? Can you imagine a physician writing “Cancer – NOS” as a diagnosis? And yet there’s something freeing about “NOS” because in truth, none of the other labels have ever helped me understand what I experience. Maybe I should get a T-shirt that says in large letters – “NOS.” That’s me “Not Otherwise Specified.”
Every day I drive past the outdoor smoking area for an apartment building in our neighborhood that houses people with mental illness. Inevitably she’s there, the woman my partner Patti refers to as “The Human Chimney,” slumped in a chair and puffing on a cigarette. Patti says she’s like a broken down car that’s still idling. “She’s blown her head gasket,” Patti says. Now that the weather is cold, the woman wears a purple knit hat and a long purple down coat, her eyes obscured behind large glasses, barely visible in the space between her collar and the rim of her hat pulled low.
I hate her. It’s unfair, I don’t know her, I should feel compassion, who knows what traumas she’s suffered, what meds might be slogging her out – yada yada yada. Yet all I feel is contempt and derision. In truth, she’s probably what I fear most in myself, that I will reduce my life to this, to passing time in some slow suicidal drift, narrow my horizon to the next time I can partake in some anxiety reducing habit that will eventually kill me. Good riddance to a wasted life. Sometimes mental illness can be a wasting disease as devastating as ALS or MS, but instead of muscles and nerves, it’s the hopes and dreams of the afflicted that deteriorate over time.
That’s what happened to Grace Emma Sorrell. She was called the most beautiful woman in Austin, Texas. When she walked down the street, people would stop to stare at her loveliness. She often recalled how one night in their early courtship she and my grandfather were sitting on her porch swing when the entire University of Texas Men’s Glee Club came by to serenade her. But by the time I knew her, one side of her face was slightly fallen from some type of palsy that came on about the time she had her breakdown, and she’d already done a 20-year stint in the Texas State Hospital and been out and living back with my grandfather for another 20 years.
I loved my grandmother dearly. Beneath it all – the constant odor of urine and baby powder, the overly applied rouge my mother would wipe off before we all went out – was a gentle heart and a keen wit. But by the time I was 5, I’d learned how to distract Grandma when she went “off.” “Off” meant a sudden unseen upset when she’d start talking angrily at someone who wasn’t there. Her movements became jerky with a barely contained violence as she’d arrange and rearrange an object on the table. She’d write angry comments in a dark scribble across the faces of the too-pretty models peering out from the ads in her women’s magazines. When I was little, we only visited my grandparents in Houston once a year at Christmas, but I quickly learned that whatever was wrong with Grandma was both unpredictable and permanent.
My mother is 84 years old and still vibrant, yet in some ways she has never fully recuperated from what happened 80 years ago when she was four and her older sister Betty was six. Grandma suddenly had violent outbursts. She burned my mother’s favorite doll in the stove – but not Betty’s, Mom still notes with some sad bitterness. Betty’s doll was spared. Mom drinks at least a glass of milk a day now, she loves the taste and wants to keep her bones strong, but she told me for years it made her gag because of the memory of her mother pulling her head back by the hair and pouring a pitcher of milk down her throat while she choked. Once while retelling another incident from that time, Mom unconsciously began referring to herself in third person. “Ruth Hannah,” she said, “was hiding behind the couch. Mother had a knife and was chasing her. Ruth Hannah had to hide.”
I remember being anxious and depressed as a child and the fear I would turn out “like Grandma” was always in the background; later I discovered my cousins, my Aunt Betty’s children, also worried about this. I first sought professional help my junior year in college and I struggled along in my twenties and early thirties, moving from therapist to psychiatrist, from job to job and place to place. However, in 1997 when I was 34, it really fell apart. The desperate anxiety and depression had changed to an almost psychotic barrage of self-harming images – running headfirst into a window, sticking my finger in an empty light socket. I moved back East from Denver where I’d been living for two years and within a month signed myself into the hospital.
The decision to check myself into the hospital did not come easy, the social stigma of hospitalization magnified by my experience of my grandmother’s illness. It’s almost as if it’s the hospitalization, not the mental illness, that you never recover from, as if a stay in the psych ward, like having a prison record, mars your resume, even if you never reveal it to anyone. But at the time, the only alternative I saw was suicide, and the tiny part of me that didn’t totally abhor and blame myself for my despair must have held on to the hope that something could make my life bearable.
Despite the fact that so much could be better about psychiatric hospitalization, it did save me. I’m still here and that is a wonderful thing. But ultimately, it was a decision I made just before my release from Benedictine Hospital after my month long stay that has made the greatest difference.
I knew I couldn’t live with my mother again upon my release – too much sad history, too many triggers. The social worker at Benedictine suggested I visit Tudor House, a halfway house of sorts for people with mental illness, to see if it might be an option.
Tudor House was beautiful, very clean and gorgeously decorated. The residents seemed okay – a few slowed or shaky from meds, but overall, it just felt like a house full of quirky people. After dinner, one of the staff asked if I’d like to join her and a couple residents in a game of Scrabble. I wasn’t sure my brain could function like that anymore – although at one time I’d been an assistant professor of English at a university, the breakdown had shaken my belief in my brain to the core. Still, I wanted to be a sport. I sat down with her, and a nervous smart looking young man, and a woman dressed all in black who was always looking away.
The staff held out the bag for each of us to pick our first 7 tiles and told us how to arrange them on our wooden holders so no one could see them. After playing her own word, she got up and stood behind the nervous young man. “Oh look,” she said, and then proceeded to point to the tiles on his tray and tell him where to place them while he watched helplessly. Staff recorded “his” score, then moved to the female resident. When the woman in black hesitated, Staff placed the tiles for her. “Very good. Double word score!” she cheered. The woman looked away.
When Staff came to hover over me, I quickly covered my tiles. “No, no thanks, “ I told her. “I can do this myself I think.” She stared at me in surprise, trying to decide whether or not to be affronted by my refusal of help.
In the end, I landed up winning the game, having beat only her I guess you’d say, since she really was the only one playing besides me. When the social worker picked me up later, I told her I didn’t want to go to Tudor House. I’d do anything – and I did, though that’s another story – to avoid going there.
Recently, when I learned that Tudor House had been one of the many facilities for the mentally ill to be shuttered, it did not make me happy. I expect it was a godsend for many people who needed a safe place, a respite, but for me it would not have been. In that evening I saw it, the infantilizing of the mentally ill that so often occurs, the blatant lack of understanding that symptoms don’t mean the whole self is obliterated, that a person’s intelligence or the need to be challenged disappear. What little bit of self-respect and self-trust remain after a breakdown can so easily be destroyed by well-meaning but ignorant people, who are sadly often those who are hired to help.
At close to 50, I feel in many ways as if my journey is just beginning. I am finally seeing the results of years of struggle and determination. I am so grateful for all those who have helped me through the years – my dear Patti, my dear mother, my dear friends, my dear pets, as well as dedicated professionals, all animals, trees, and rivers, potato chips and chocolate…most recently, my co-participants in a TMI Project writing workshop offered by the Mental Health Association of Ulster County. Their stories of honesty and survival give me courage and strength, and have helped me recognize my own. This year, I am returning to school to become an Occupational Therapy Assistant in the hopes of one day helping others find their wholeness in the midst of their disabilities, whether physical, developmental, or psychiatric.
Approximately 80 years ago, my grandmother was diagnosed as schizophrenic; I don’t know what label she would’ve worn today. What I loved about my grandmother could not be specified. Despite all she’d been through, she could always see the beauty around her. “Oh look,” she’d say, looking out at something I hadn’t noticed, “how beautiful.”
Those of us with mental illness are truly Not Otherwise Specified: what matters is not our disease, but our hearts.