“We’re learning that we should not be ashamed of our mental illness,” I overheard as I was driving the van to the YMCA. I looked in the rearview mirror at the twenty something male wearing a Yankees cap—I’ll call him B. It was not a face I would have associated with nervous breakdowns, hospitalizations and two doses of lithium, Ativan, and one of Risperdal each day. Diagnosis: schizoaffective disorder, symptoms of both mood disorder and psychosis. Former life: wife, baby, good job at a Fortune 500 company. Current life: resident of a life skills program which teaches the mentally ill how to live independently.
When I started working at this non-profit a few years ago, I knew little about mental illness. I’d had cases of the blues, relatives and friends who’d battled depression, knew stories of people who’d cracked up—like some of my favorite writers. But if you’d pressed me, I could not have given a clear definition of nervous breakdown or schizophrenia. To define schizophrenia I would have said split personality which is inaccurate, a notion I’d learned from the movie “Sybil” starring Sally Field where she had multiple personalities. Most of my knowledge of mental illness was based on books, movies, and television—The Bell Jar, I Never Promised You a Rose Garden, One Flew Over the Cuckoo’s Nest, the poetry of Anne Sexton.
My experience didn’t change much as I grew older. Growing up, there were a few suicides in my hometown, always whispered about, and a couple of girls at my boarding school made weak attempts like the one who OD’d unsuccessfully on No Doze. During my single days, a well meaning friend set me up on a lunch date with a powerful handsome attorney a bit older than I. Shortly before the rendezvous, I found out the reason the rich and powerful attorney was now available was he’d had a nervous breakdown the previous year. I ate a quiet lunch with a dapper man in a blue checked shirt, very tanned with movie star eyes. Obviously very bright. But there was something shaky and unstable about him, I couldn’t quite put my finger on it, and I noticed small scabs on his face and arms. I didn’t go out with him again.
The non-profit I worked for is tucked away on thirty acres in a rural area just starting to develop outside of Richmond, Virginia. Millionaire McMansions are mixed among the farmhouses and small forgotten churches. Most people get lost on their first visit to the campus and the quiet gray buildings seem very peaceful in the distance. The program teaches those with schizophrenia, bipolar disorder, and depression how to live independently in the community and they can participate for six months, three years, or the rest of their lives. It’s a campus lifestyle for about 30 residents and 22 staff; twenty more live in the community with assistance. The organization is divided into three parts: the first level, the group home, where people enter at their sickest, usually from a hospital or jail, and they have 24-hour supervision where they are assessed, learn about their illnesses, medication management, and in some cases basic hygiene; the Supported Living Level where they move into their own apartment on campus, usually with a roommate, and take classes in cooking, shopping, budgeting, job interviews, computers, relationships and any other life skills needed to make it out there. The last phase of the program is Community Support where they move off campus into an apartment and either work part time or go back to school, still with the program’s support whether it’s transportation, therapy, or social events. Since the residents usually move into neighborhoods you and I would never visit, it should come as no surprise many were reluctant to move off campus.
Most of the residents were indigent. With private pay facilities costing as much as $9,000 per month, it’s no wonder family members had often exhausted their resources by the time their relative had been accepted. I took many phone calls from concerned relatives, often sounding desperate. There was always an increase of these calls around Christmastime.
Until fall of 2007, I worked as the Director of Development. Our small staff was expected to raise about $350,000 which would offset about half the cost of each resident along with fees from SSI, Disability, HUD and Medicaid.
This was all well and fine until Virginia Tech.
As we now all know, on Monday, April 16th, a young student named Cho Seung-Hui got up, dressed, walked over to the dorm next door, and shot two people to death. He went to the post office and mailed a video of his rants against the world to NBC News, returned to campus and entered a classroom building, locked the doors and walked from room to room gunning down people. Final toll: 33 murders of faculty and students, twenty-five wounded, and Cho killed himself. Within hours everyone wanted to talk about the plight of the mentally ill and the holes in the system.
It has been a cruel wake up call, especially in my home state Virginia where all of us were so closely affected by the tragedy. As a Richmonder, it was even closer to home since so many Tech students come from Central Virginia. Three of my neighbors knew victims well and my daughter’s third grade teacher said she had six families in her class who were closely affected by the killings—the worst kind of six degrees of separation. On a sad and professional note: For those of us who were fundraising for non-profits helping the mentally ill, the following months were lucrative. Corporations which had not paid attention to us for years were suddenly sending large grants.
A backward glance at the history of mental health treatment is an ugly view indeed. Burning witches at the stake…trepanning…snake pits…lobotomies…shock treatments…hospital patients so doped up they literally couldn’t remember years of their lives…patients who shouldn’t have been committed in the first place…. In 19th century England one could pay a penny to peer into the cells of lunatics and watch for entertainment. (Hey, the sex and fights were great!) Admission was free on Tuesdays and visitors were allowed to bring sticks so they could poke the mad. In 1814 alone one hospital logged 96,000 visitors. Popular as NASCAR.
This early treatment of the insane is beautifully captured in William Hogarth’s print “The Rake’s Progress,” a print of the world’s oldest psychiatric hospital Bethlehem Royal Hospital in London. (And also called Bedlam.) The print is so named because back then, it was thought insanity was linked to moral weakness. “The Rake’s Progress” is hell in grey tones: two women caressing (!); a mad fiddler wearing a down turned book as a hat; a half nude and bleeding man, crying, in chains, and having a fit; a man staring off in the distance; a woman playing with string. Over 200 years later I can still hear the screams and whimpers of these sorry doomed souls. I guess we have often treated the mentally ill the same way Michael Vick and his friends treated their dogs. All this is very hard to accept, especially for a slightly spoiled 52-year-old writer sitting in her peach-colored study, tortoise shell cat sleeping alongside, while two maids clean the upstairs of her house.
Finally, in the 1960s de-institutionalization caught on and state mental hospitals gradually began to close in favor of community based care, the problem being there was no funding. Hence, a new trend – homelessness which evolved into today’s reality of the mentally ill being recycled through the hospitals and jails. Statistics are still bleak. According to the website for the National Alliance on Mental Illness (NAMI), approximately 57.7 million Americans struggle with a mental disorder each year—one in four adults. The U.S. Surgeon General reports 10% of children and teens in America deal with mental disorders that seriously undermine their daily lives. And finally, 90% of those who commit suicide suffer from a recognizable mental disorder.
When I first started working for the non-profit, many of my colleagues wondered how I was going to raise money for the mentally ill. My first response was always to ask if they or any of their friends or family had been depressed, if they’d known anyone treated for depression, been hospitalized for mental problems, or committed suicide. The answer was always silence.
Most of my donors had a personal connection with our mission to help the mentally ill. They had relatives or friends who grapple with mental illness so they already knew firsthand what it was like to live with this terrible diagnosis. My personal connection was through my husband’s Aunt Lizzie, a spinster great aunt who depending on whom you ask in the family was described as slow, retarded, or depressed. No one mentioned her name much. What’s kind of touching is we have her cookbook; a copy sits downstairs quietly in the den on a shelf next to our other ragtag much loved books.
Aunt Lizzie spent the last decade of her life at Piedmont State Hospital in Burkeville, Virginia. She was the youngest of five and grew up in a rambling Victorian home in Blackstone. As her sisters and brother died off, she went from home to retirement home and finally to the hospital in Burkeville, forgotten by all other than my mother-in-law who used to visit her on a regular basis, usually towing one of her children. The children dreaded the visits and my husband said he has blocked out most of the memories, though he said he remembered Aunt Lizzie vaguely; she was plump, dark haired, wore glasses, and looked like his first grade teacher, Mrs. Montgomery, “but when you’re little, all elderly women look like that.”
The cookbook is a snapshot of small town Virginia life: Blackstone, the 1930s. From the notes I know what Aunt Lizzie liked to cook and which recipes her neighbors shared with her. The title is My Better Homes and Gardens Cookbook and the cover states every recipe has been tested in their “tasting-test kitchen.” It’s a loose-leaf, much worn binder with an outside spine held with grey electrical tape. Many of the recipes are handwritten, typed, or cut out of newspapers and glued to cards. On an inside flap there is Lizzie’s signature and “This book was given to me by Anna” written underneath: a long ago gift from a younger sister. If you don’t hold the book carefully, watch out or recipe cards for Pickled Crab Apples or Mrs. Johnson’s Candy Chocolate Fudge may spill out.
Lizzie died around the same time my father-in-law had a massive stroke so the family was too distracted to focus on her. Six months after her death she was eulogized in a memorial service. In the end about the only legacy Lizzie left was the cookbook since all her possessions were sold off to cover her costs at Piedmont State Hospital.
I learned a lot about the residents during the two years I worked with them. They never seemed particularly interested in me and never asked any personal questions, yet each of them loved to talk and talk—if they were having a good day. If they’d made some sort of progress, I noticed they loved to be hugged although during flu season, I confess I resorted to carrying books so I wouldn’t have to touch as many people. In the early days it would have made me sad to visit campus and have a long personal conversation with someone, only to return a few weeks later and find the same person ghostlike, incommunicado. Over time I learned not to take this personally.
I admit it took me over a year to stop judging the residents by my standards. Once volunteers from a church painted and decorated one of the campus apartments for a new resident. I was furious when I dropped by for a visit a few months later and discovered the apartment was a pigsty with stacks of pizza boxes, dirty dishes, pillows on the floor, overflowing ashtrays. Then, my frustration crescendoed. R. quit his job at a café after one month—the first job he’d had in years. Then, B. quit school and T. quit his job and moved home. How was I going to fundraise for a program if everyone kept quitting jobs and dropping out of school? Success stories were what led to the donations. My boss eventually explained that in the world of mental illness relapse was as much a part of their daily lives as fundraising was to mine. There was no such reality as going on meds and never having another problem. Something seemed to slip every few months or so. It was expected.
Over time, I learned many of the residents’ backgrounds. I’d say most had the dreams of young people we all know: to finish school, find a job they like, marry, have children. Two residents were homeless; one was married though his wife was in an institution and his children were in foster care. Many had been in jail at least once. We had students who attended UVA, University of Iowa, Rice, Swarthmore. We had a florist, a creative director at an advertising firm, and then there was B. at the corporation. Many of the males had proposed to female staff and sometimes not in the most genteel fashion.
The only links I could find between all these individuals were possible genetic predispositions to mental illness, extremely stressful jobs and family lives, and family members who seemed to have their own mental issues. In one case it was clear the relatives wanted the resident to move home because they needed her benefits.
When you have a serious mental illness, I learned that life moves in slow motion. Two steps forward, one step back, one step forward, two steps back, one step forward. Little victories are important, thus, the hugs. I would call the environment on campus nurturing. Most of the staff had worked at Central State Hospital, the mental institution with a large forensic unit in Petersburg, so they were used to a far tougher population.
When I decided to write an essay about mental illness, I had great intentions. I thought it would be fascinating to interview the residents about their lives, how they think on and off medicine, and the progress they were making with their illnesses. The day I volunteered to drive to the YMCA and had a chance to spend a few hours with a dozen residents, I realized most didn’t really want to talk about their illnesses and what their lives were like before; few wanted to be named or interviewed; few wanted to tell their stories. Conversely, most of them were helpful with interviews for the annual report, reporters, and special events, and information for grants when I applied for scholarships. They felt very strongly about doing whatever they could to help a program which had changed their lives for the better or in some cases probably even saved their lives. So I don’t have any names with the stories. Anyway, I don’t want the residents to always wear their mental illnesses like yellow stars.
Perhaps now you can understand why I could never bring myself to drive over to the retirement home where my 81-year-old mother-in-law lives and ask her about Aunt Lizzie. When you marry into one of the First Families of Virginia and have on the family tree the founder of a famous brokerage firm, a well-known architectural historian, two professors, and an ornithologist with books dedicated to him, it does not go over when the only relative a daughter-in-law expresses interest in is the one who died in a mental institution. (My father used to call this “Shaking a stick at a hornet’s nest,” something he said I did a lot during my teenaged years.)
What I can write about the residents is this: On campus we had five bipolar disorders; one dysthymia (a milder form of a major depressive order which is chronic); four major depressive disorders; one post traumatic stress disorder; two psychotic disorders not otherwise specified (a diagnosis mainly for people with psychotic symptoms yet who do not meet the criteria for a diagnosis of schizophrenia); six schizoaffective disorders (A combination of psychotic features within a mood disorder; with this diagnosis you are likely to experience hallucinations/delusions during the manic and depressive phases of the illness); and 13 schizophrenias (A psychotic disorder which changes how a person thinks and acts, characterized by hearing voices and delusions).
Our clinical director told me the biggest challenge facing the mentally ill is not housing, employment, or social acceptance—it’s the ability to take their medications on a regular basis. Most have a tendency to stop taking their drugs once they start feeling better, a vicious cycle. Small wonder since the side effects can be blurred vision, nausea, dizziness, constipation, and impotency; sometimes they have to give the males drug holidays.
The biggest hope for the future lies in drugs. Research is focused on longer acting medicines with fewer side effects. I expect it will reach the point where someone only has to have one shot a month rather than a fistful of pills which have a complicated sequence and often make him feel sick. For the time being there is no cure. A diagnosis of serious mental illness is permanent. However, we have effective means of therapy and drugs alleviating many of the symptoms—none of which were available to Aunt Lizzie.
After two years working for this program, I was able to draw a few conclusions. We need more long-term affordable housing whether state or privately run, especially dorm situations where residents can live in safety and comfort with support when it comes to decision making, daily life management, and most importantly, medication compliance. During the day, individuals can go to work, school, and appointments. More group homes could be opened and cater to about 25 people, only needing a small staff. (If you will, think of this as foster care for the mentally ill.) One of the biggest problems I see is we are training the mentally ill how to live on their own and yet there is a serious shortage of adequate housing. They can only afford marginal or bad neighborhoods which make them vulnerable to hooligans and isolation; NIMBY casts a pall over their having a chance at living decently. Most of our residents were low income and had to live on benefits and minimum wages from part-time jobs; they had to scrape by on about $650 a month, including $170 for groceries and personal needs. Few could afford to live alone and finding a roommate was a challenge. And this was before the recession.
Towards the end of her life Aunt Lizzie recognized no one. I’d like to think there were family and staff members at Piedmont who showed her kindness, even in the simplest of gestures during her sad and lonely last months. A favorite dessert, a joke, the linger of a reassuring hand on her shoulder, placing a comfortable chair in front of a mountain view beckoning from the window. We’ll never know.