Tag: mental institutions

In the Realms of the Unreal, edited by John G. H. Oakes

This post originally appeared on I Read Odd Books

Book: In the Realms of the Unreal: “Insane Writings”

Editor: John G. H. Oakes

Type of Book: Non-fiction, collection, mental illness, outsider literature

Why Do I Consider This Book Odd: It studies the writings of people diagnosed with mental illness, including people with schizophrenia and people who spent their lifetime in mental institutions.  It sort of approaches being an “outsider” literature collection.

Availability: Published by Four Walls Eight Windows in 1991, you can get a copy here:

Comments:  It’s no secret that I am a sucker for books about mental illness.  Though many of the books I read are never discussed here, you could get a taste of my mental health reading habits on my dead site, I Read Everything.  As a person who struggles with a relatively mild mental condition (mild in the spectrum – it sucks, don’t get me wrong, but it’s nothing akin to having schizophrenia or bi-polar), I find reading about the illnesses of others illuminating and instructive.  But this book was important to me because it features work by Henry Darger.  The book takes its name from Darger’s work, and features a long sample of his work.  I’m in a Darger mood lately, collecting books about him, reading about him, watching the documentary about him over and over, so it was great when my sister-in-law sent me this book for Yule.

But along with my tendency to want to read about mental illness is my tendency to gather up lists of books I am interested in without knowing a whole lot about the books.  I couldn’t begin to tell you my decision calculus for obtaining a book, because it’s immediate, mercurial and often very shallow.  I sort of approach books the way a kid approaches candy.  I see some chocolate gum and think, “Hey, I like chocolate and gum, so let’s try it.”  And of course it sucks.   This book is not an utter failure, like chocolate gum.  It’s more like a delicious Belgian chocolate with a bitter licorice center.  This book is very interesting on some levels, but at it’s core, the book fails.  In spite of this, this is going to be a very long discussion because even as the book fails at its premise – an attempt to present the works of insane writers without comment – there are elements that are interesting and good enough that they, temporarily at least, overshadow the failure of the premise.  There are snippets of writing from genuinely mentally ill people that resonated with me deeply or troubled me, and the inclusion of two writers who were not really insane, Henry Darger and Mary MacLane, improved the reading experience.

So let me get to the premise problems that harm this collection.  In the Realms of the Unreal is a collection of various writings from people who, in some loose sense, fit the description of being “insane.” Sort of. The writings range from poems to involved works of fiction to intense biographies to snippets of what can only be called word salad. And when you have such a range of works under the heading of “insane writings,” it can make you wonder what the methodology of this book was. In the Editor’s Preface, it sort of explained things, but at the same time, it makes it clear that there really was no methodology beyond what the editors had access to within their parameters of unusual behavior.

From the editorial preface, an attempt is made to explain that insane means a lot of things and that their primary goal was to include a variety of writings, knowing full well some may not pass the sniff-test for true insanity.

An effort was made to include a wide variety of authors: living and dead, free and institutionalized, foreign and American, contemporary and antique.

But even within that paradigm, the editors give themselves a lot of wiggle room. They exclude the works of more famous “insane people,” like Antonin Artaud, because they made a living from their writing, but include Mary MacLane, whose writings were widely popular when they were initially published.  It’s also odd because MacLane was definitely not insane, period, and the explanation for her inclusion is odd.

…MacLane’s work was never accepted into the literary canon. She had the double strike against her of being a woman and an eccentric during a period when society was particularly unforgiving.

The editors also have to explain their inclusion of Henry Darger:

We were looking for unusual poems and stories, often by people who had been or were currently institutionalized – although someone like Henry Darger (whose epic text lent its title to this volume) to our knowledge was never treated for “mental illness.” The amount of material produced by these unusual thinkers has greatly diminished in the modern era, principally because of the use of psychiatric drugs that often dull creativity, even as they help a patient adjust to life in conventional society.

I don’t know what to think of that statement about drugs dulling creativity because in my experience it is definitely untrue and it is often the mantra that so often prevents people who need help from getting it, but okay, let’s just roll with it for the purposes of this book.   And as we roll with it, let’s just accept that “insanity,” for the purposes of this book, is whatever the editors decided it is.

But there is another problem with this collection.  Again, from the editor’s preface:

No common theme to the book should readily emerge. To again borrow a phrase of Roger Cardinal’s, we are exploring an archipelago of ideas, rather than a continent.
[…]
These writings are not presented as clues to someone’s “illness”: they are published for their intrinsic worth.

This approach is problematic.  Writings of genuinely insane people are chaotic at best.  Without a common theme or at least an attempt to classify these writings, the reader is confronted with a wall of illness-influenced words that become amorphous and meaningless without context.  The only divisions in the book are institutional and chronological, which is sort of helpful because one can almost see how anti-psychotic medications changed how mentally ill people interacted with their disease, but even that is not enough to give this work the sort of focus that prevents these works from becoming an assault on even readers who seek out this sort of literature.

Finally, I find the notion that “they are published for their intrinsic worth” to be utterly specious.  Much of the work in this book is not good, and failure to link the work to the illness that may have fueled its creation, in my opinion, strips the works of their worth.  To say that all of these pieces from the insane have intrinsic worth just because they were written by insane people is akin to saying that all diary entries from teenagers have intrinsic worth because they are from teenagers, or that all poems written by people in wheelchairs have intrinsic value because they were written by people in wheelchairs.  It is disingenuous to compile  a book of writings selected not because they were well-written but because they are the works of the “insane” and then tell the reader that one should not look at these works using a framework of insanity.

What other framework can the reader use to determine value?  Most of this book is not genius borne from madness.  It’s just madness.  With the exception of a handful of writers, including Darger and Mary MacLane, these are not the works of natural writers.   These are the works of people with a specific story to tell – the story of being mentally ill.  There is no way to evaluate these writings without discussing the illness and experience of illness that inspired the writing in the first place.  I think culturally we need to understand that 20 years ago, the liberal idea of colorblindness and being “handicapable” were in full swing.  One was not supposed to see color, race, religion, disability or illness.  One was just supposed to see people (leading to the now derided and utterly ridiculous insistence that black, white, pink, or purple, liberals don’t see color, just people).  It’s easy to understand this approach to egalitarianism but such an approach denies the experiences of specific people as we deliberately refuse to see the things that define another person’s experience in this world.

So now that you know that this is an unorganized collection of works from people that may be insane or may not be insane, that the works are not necessarily going to be good, and that I plan to completely ignore the exhortation that we overlook the insanity that may have fueled these writings, let’s discuss the individual components that made this book worth reading. 

Continue Reading “In the Realms of the Unreal, edited by John G. H. Oakes”

The Lives They Left Behind by Darby Penney and Peter Stastny

This post originally appeared on I Read Everything

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.