Book: The Lives They Left Behind: Suitcases from a State Hospital Attic

Authors: Darby Penney and Peter Stastny

Type of Book: Non-fiction, biography, history, photography, psychiatry

Availability: Published by Bellevue Literary Press in 2008, you can get a copy here:

Comments: This book was an unexpected comfort for me. I walked an interesting road in psychiatric medicine (I can call it interesting now with some distance – at the time it was an unrelenting nightmare from which I feared I would never wake) and the stories of the patients in this book, the psychiatric fads that doomed many of them to inappropriate care, showed me that in many ways the more things change, the more they stay the same, which may sound horrible in a sense, but really it put my own experience into perspective. And despite some similarities between my own care and the care of one of the patients in the book, I feel incredibly lucky to live in the present age, current deficiencies in mental health care notwithstanding.

This book discusses the lives of 10 people whose suitcases were left behind at Willard Psychiatric Center in upstate New York. Painstakingly researched, the identities of the people whose belongings were found in the hospital attic long after their deaths are explored not only in terms of their lives in the hospital, but also in terms of who they were before they ended up at Willard. Though we in our modern ways may see old psychiatric homes as barbaric – and they were in some respects – they were society’s attempt to deal with people who may have had profound problems, most of whom had no where else to go. Many who were considered “incurably mad” found themselves in poor houses, where their behaviors made them subject to terrible abuses. In 1869, Willard took in patients who had been deemed unsuitable for poorhouses and workhouses (and a pox on every person who thinks a return to either is a good idea).

… Willard received only patients from across the state who had already exhausted the public resources of their counties. Even paupers did not want to witness people kept in tiny cells and iron locks, being fed through openings in their doors, never let out until their limbs were crippled. Women were regularly abused by all comers, and the whole business had turned into a matter of public disgrace.

But even as the mentally ill were shipped to the countryside, it bears mentioning that the hospital’s goal was to be self-sustaining, meaning that the patients were required to work in fields or in workshops in order to fund Willard. Moreover, the institution had the perspective that they needed to provide a “morally” correct place for the mentally ill, giving them certain stigma while attempting to help them. Masturbation was cause for alarm and at times confirmation that the patient was in fact quite mentally ill. A sex life was completely off limits to the mentally ill at Willard.

Because of the psychiatric fads of the time, most of the people in this book and likely many at Willard were diagnosed with schizophrenia or various forms of hallucinatory dementia when the fact is few actually had the condition. In a similar parallel to a lack of early understanding of how some psychiatric drugs affect blood sugar and cause diabetes, many patients were put on drugs that caused them permanent neurological damage. Some neuroleptic drugs caused tardive dyskinesia and some doctors did not understand the causation between the drugs they prescribed and the uncontrollable fidgeting they saw in patients.

The psychiatrists who first introduced neuroleptics noticed rather quickly that the drugs caused symptoms not unlike Parkinson’s disease, but saw this as evidence that the medication was working effectively, rather than as an indication that it caused neurological damage… Nevertheless, decades later, when the full extent of the problem had become quite obvious, psychiatrists continued to prescribe these drugs for most patients in institutions, despite their limited effectiveness and the disfiguring and disabling side effects.

If this sounds primitive, we needn’t pat ourselves on the backs too soon for our improved medications.

Second generation neuroleptics, also called “atypicals,” were considered more effective and less likely to cause side effects than the older drugs, which are significantly less expensive. The NIMH study showed that these highly praised medications were no more effective than the cheaper drugs they replaced, while causing a new slew of side effects, including diabetes and heart disease. A 2006 British study had similar results…

People who know well those who are mentally ill, especially those with bipolar disease, often remark that they just don’t understand why sufferers don’t take their medications. Well, you see, the meds often don’t work as well as one would hope, they make you gain untold amounts of weight, can give you permanent neurological problems, diabetes, as well as creating addiction to the drug that makes withdrawal a dicey prospect. The behavioral problems these drugs are supposed to address often are dwarved by the health and further mental problems they cause. Some benefit from atypical antipsychotics, to be sure, but many walk into taking such drugs without a full picture of what the drugs may do in the long run.

Of the ten stories, several were heartbreaking. For example, the Russian emigre who escaped from a WWII internment camp with his wife to New York, where he began creating an excellent life, only for his wife to suffer and die from a catastrophic miscarriage. He broke down and became psychotic after her death, and ended up at Willard, where he spent the bulk of the rest of his life. A folk artist of no small talent, he painted scenes from his native Ukraine. In his suitcase, he kept the flowers his wife had carried during their wedding ceremony in Austria in 1945.

But the person in this book whose story most affected me was that of Margaret Dunleavy, an orphan who left Scotland and was an accomplished nurse in the United States until the intrusion and a complete lack of understanding in the medical and psychiatric world left her confined to Willard for the rest of her life. Margaret had contracted tuberculosis and worked in a tuberculosis hospital, but she suffered several setbacks in her life, setbacks that cost her the job and the lodging that came with it. She was placed at Willard for what was supposed to be a temporary stay that became permanent. She entered Willard with 18 trunks, the contents of which she was seldom allowed access to, her car was repossessed, she was seldom able to see her companion and perhaps boyfriend of many years, and all the accomplishments in her life were dragged from her as her life became that of an institutionalized patient. She described being sent to Willard as being “like a fly in a spider’s web” and she was right. She was ensnared in psychiatric faddery and a tendency by some doctors to dismiss a patient’s pain and to diminish the addictive properties of the drugs they prescribe.

Her trunks were filled with her life’s possessions – linens, carefully wrapped china, diplomas, many pictures of the road trips she took with friends. Her immigration papers, her medical certifications and letters from friends and her male friend, embroidery, patterns, and most importantly, pictures of her with her car. An independent woman, Margaret never married and rare for the time, she owned her own car, traveling on vacations with female friends, her mobility giving her freedom. And unlike many at Willard, she had friends who stuck by her until the end. The depth of her friendships, the loyal bonds that those who are extremely mentally ill enough to be institutionalized for life often have a hard time forming, should have been a clue she was not schizophrenic, but the dogma of the time said she had the disease and she was treated for it until she was a shell of a person.

Margaret, who had tuberculosis and was diagnosed with gastric problems, had a doctor she preferred, driving far out of her way to see him. She was given belladonna and codeine, both of which were addictive to some extent and made any psychological problems the chronically ill woman had even worse. Her worsening health, the worsening health of her male companion, combined with worry about her family in Scotland at the outbreak of WWII, caused her to show signs of fray. Her employers at the tuberculosis hospital intervened in a way that now seems outrageous – they terminated her care, her personal relationship with her doctor and forced her to see a more local doctor. Losing contact with her trusted physician, combined with an abrupt termination of her drug regimen, caused Margaret to break down, landing her forcibly institutionalized for life on the following, extremely insubstantial grounds:

“Annoys people. Accuses people of persecuting her and talking about her. Says switchboard operator listens in on her conversations and that people on other floors can be heard talking about her.”

Once at Willard, her physical ailments were often dismissed as hypochondria, she was diagnosed in the face of all known reason with dementia praecox (an archaic term for schizophrenia) of long-standing, and was prescribed medication that ensured her frail health degenerated more and that if she was not mentally ill before entering Willard, she was certainly mentally unwell when she died there.

Her story is so resonant with me because in the summer of 2008, my mother almost died, I lost two beloved cats within weeks of each other, and I knew I was losing my job. I was in distress, sought help, and in the face of all that I know about myself, accepted a bipolar diagnosis and began to take atypical antipsychotics. What began as an emotionally difficult time morphed into physical misery that I hope I never face again. I was placed on Geodon, within days was shaking, felt snakes under my skin, stopped eating and started hallucinating. I asked the psychiatrist for help and he prescribed me enough Xanax to ensure a terrible addiction. It all culminated in a stay at a psych ward after the voices in my head told me to kill myself. The four day stay in the locked down ward did stabilize me until the voices stopped, but I also left the place on Prozac, Wellbutrin, Xanax, Valium, Trazedone and Ambien. I developed an addiction that almost cost me my marriage because the drugs made me so crazy I wanted to leave my spouse of 15 years. I have shared my experience and while it is certainly not the norm, too many have shared similar experiences of being shoe-horned into inappropriate diagnoses (most often bipolar, the 21st century answer to schizophrenia and dementia praecox), crippling addictions, and doctors who pile medication on top of medication with seemingly callous disregard as to what such drugs may do as they fine tune their patients’ brains.

(And though it goes without saying, I must say anyway that meds help a lot of people. I would never tell anyone not to take meds if they had a realistic diagnosis, understood all the ramifications of taking psychotropics and made an informed decision. My descent into hell had none of those elements involved, and that was the problem. My experience is not a testimony against psychological pharmacology, but rather an encouragement to approach one’s mental health care with information and caution.)

In the course of reading Margaret’s chapter, I was introduced to the idea of the chaos narrative, which helped me make sense of what happened to Margaret as well as what happened to me in the bowels of the psychiatric system.

The chaos narrative is essentially an anti-narrative, because the self in the midst of chaos has no time for reflection or the ordering of narrative in a way that makes meaning. As Frank [Arthur Frank, the creator of the idea of a chaos narrative] puts it, “A person who has recently started to experience pain speaks of ‘it’ hurting ‘me’ and can dissociate from ‘it.’. The chaos narrative is lived when ‘it’ has hammered ‘me’ out of self-recognition.” Chaos stories are hard to hear, both literally, because, in their lack of sequence and causality, they may not be apparent as stories to the listener, and figuratively, because they are anxiety-producing, even threatening, to the listener, a reminder that anyone of us may find herself in this painful state.

In this age when doctors barely have time to get your basic history, it is unlikely many know a chaos narrative for what it is. They hear a rambling patient, who may be fidgeting with nervousness and tension, who cannot sleep, who is plagued by a sense of doom and may be acting out, and the narrative seems indicative of the psychiatric disorder du jour. In the midst of most of these stories, chaos narratives were at play – illnesses, life upheavals, and misfortune – and doctors did not hear the stories they were told.

Modern psychiatric life is different now, to be certain. A heavier emphasis is placed on pharmacology than long-term therapeutic care and those whose mental illness is severe will not have their possessions discovered in disused attics because many are homeless now due to the drastic termination of funding mental facilities experienced in the Reagan administration. It is hard to say which is worse – being in an institution your entire life when you don’t need such care, or being on the streets, unable to get such care if you do need it.

I suspect most people will read this book and feel a kinship with one of the people described through the possessions they left in their trunks, possessions they were denied while they were at Willard because the people in this book, all quirks and bad behavior aside, are so very ordinary, very prosaic. Each trunk represents a life truly interrupted, and in their cases, generally never to be resumed again. Truly a heartbreaking work. I highly recommend it.