Sylvia Frumkin’s Place

by JC Schildbach, LMHC

I’d venture a guess that many who enter the mental health field, as with any potentially dramatic profession all the way from police to executives, do so with visions informed by Hollywood. One of the main Hollywood portrayals of the mental health worker is is that of the therapist/psychiatrist as a well-compensated genius, ensconced in a plush office, treating the worried well or other “eccentric” or “neurotic” types, while constantly being admired by clients for one’s observational skill and ability to call forth ‘breakthrough’ moments. The other end of the spectrum is the heroic social worker who, through sheer tenacity, overcomes all the problems an impoverished neighborhood can throw at her, overcoming multi-generational patterns, and very recent traumas, to really, really make a difference in the lives of an entire community.

Many in the field are drawn to books by Yalom, or Rogers, or perhaps even some acolytes of Oprah, who tell us that just by listening and accepting our clients, or by throwing the right bit of tough-love advice a client’s way, true transformation will take place, and clients will make huge leaps forward, forever changing their lives for the better.

Susan Sheehan’s “Is There No Place on Earth for Me?” is perhaps the perfect antidote to the pie-in-the-sky visions of one’s brilliance and dedication making all the clinical difference in the world. It balances out the ideas about the wondrous gift of therapy with the reality of chronic and severe mental illness, and its resistance to ‘ah-ha moments’ and dramatic progress. It pushes past that “we don’t need no medications” mantra, which can, in fairness, apply to a lot of mental health issues.

“Is There No Place on Earth for Me?” was first published as a four part series in The New Yorker in 1981, then published as a book in 1982. For it, Sheehan won the Pulitzer Prize for General Non-Fiction in 1983. A new edition of the book was released roughly a year ago, including a new afterword by Sheehan. On reading about the re-issue in the online version of the New York Times in January of 2014, and having never read it before, I put it on my ‘to read’ list, and eventually checked out an old edition from the library.

Frumkin cover

The book, written from the perspective of a journalist, and not of a therapist trying to convince the readers of the efficacy of particular approaches to treatment, is involved in ways that few case studies can be. Sheehan spent over two years with Sylvia Frumkin (not her real name), a woman diagnosed with schizophrenia. Sheehan had a great deal of access not only to the information on Frumkin’s treatment and behavior during the period when Sheehan shadowed Frumkin, but also to family members and others, getting a great deal of background on Frumkin’s life prior to her diagnosis, and the progress and setbacks that took place before Sheehan had ever met her.

Having had numerous contacts with clients diagnosed with schizophrenia, or suffering from other forms of psychosis, most often from a distance, it took me a while to get through the book. That is, the kinds of delusions, rants, and flights from treatment that plague Frumkin and those trying to help her, and which Sheehan documents in detail, were familiar to me—of course, with Frumkin’s behaviors being particular to her own case. Still, it was like trying to read about many of the most frustrating aspects of work during one’s down time.

For the uninitiated, I imagine the book is much more compelling, rather than overly familiar, and thus, somewhat draining. In discussing “Is There No Place on Earth for Me?” with colleagues, I’ve most often likened it to Kafka’s “The Trial”—a book that is deliberately tedious in its depiction of a bureaucracy more intent on sustaining itself than serving any clear purpose—although, that comparison probably has much more to do with what I bring to the reading of Sheehan’s book than to what she has documented in such depth of detail. Also, I don’t think the mental health system—either now or at the time—is deliberately set up to be frustrating…it just frequently is, particularly for those most in need of help.

In addition to capturing the daily details of the behavior of a (this) client with schizophrenia, Sheehan also does a masterful job of explaining, simply and concisely, some fairly complicated legal, medical, and treatment-related concepts. For instance, Sheehan outlines the concept of “least restrictive” forms of treatment, both the bane and the beauty of our mental health system, which has been around since well before the current lack of options made it so completely mandatory.  In doing so, she answers that most familiar of questions about why we can’t “just lock up” people suffering from chronic forms of mental illness who can become rather taxing to a variety of public and private resources.

The most fascinating elements of Frumkin’s story to me, though, were the ‘side treatments’—pointless, and sometimes dangerous, programs that Sylvia was subjected to. Without going into a great deal of detail, the treatments ranged from moving in with a relative and his family who believed that all Frumkin needed was a good dose of Jesus and discipline to overcome her laziness and wicked ways, to a doctor who felt that manipulating the insulin levels of patients to extreme degrees could cure them of schizophrenia.

Ultimately, what works for Frumkin (or worked back around 1980) is what still works for clients today: a small number of medications that prove effective in treating schizophrenia, as well as (to greatly simplify things) a structured environment and supportive professionals. Unfortunately, said medications can lose their effectiveness over time, or the side effects can become increasingly detrimental to the clients. It is also quite common for clients to simply quit taking their medications, feeling them unnecessary or viewing them as the root cause of various forms of discomfort or other troubles in their lives. In addition, the structured environments can only be maintained for as long as clients are compliant with treatment, and as long as the treatment remains effective, and as long as funding and various programs allow. On top of that, anything from the restructuring of institutions, to changes in law and other policy, to the career changes of providers, to differences of opinion between providers and family members, can lead to new doctors and other providers making changes, sometimes rather arbitrarily, to a client’s medication regimen or support systems. In Frumkin’s case, alterations to her treatment and medications were made numerous times, in the most haphazard of fashions, often by doctors and other providers who seemed ignorant of her case history, or of how the medications work.

One might also note that this book was written back before the U.S., under President Ronald Reagan, decided that people with chronic mental illness enjoy the freedom that homelessness brings. So, Frumkin’s movements within the system are relatively easy in terms of her various forays into decompensation leading to fairly quick, and relatively long-term inpatient placements, with step-downs to semi-independent housing, and other supports that are much rarer today (and for most of the last three decades).

Ideally, Sheehan’s book would be taught in graduate schools, or maybe at earlier levels, by instructors who are familiar with the clinical aspects of schizophrenia; the current and historical treatments for it; and the current and historical state of affairs with regard to mental health facilities, available inpatient beds for clients with mental health issues, and legal and systemic complications to accessing those beds or other program options.

To be clear, it is necessary, as therapists, or in other capacities in the mental health field, to come equipped with a belief that we can make a difference. Without a bit of the dreamer in us, we would never head down this path to begin with.

But it is also necessary for providers at all levels to understand just what they are up against, particularly given that almost all providers in the mental health field will end up doing at least a round or two in the public mental health system–from practicums/internships to early jobs to entire careers–where the most challenging of clients often end up by default—frequently after being abandoned by families and other support systems, including insurance companies.

Frumkin’s family, as dysfunctional as they are, and as frequently detrimental to her treatment as they can be, at least hang in there to the extent that they can—which I imagine was at least somewhat less difficult when hospital beds and supported living options weren’t at such a premium as they are today. In the end, though, this isn’t a story of a family hanging together and triumphing over a terrible disease. It’s the story of a debilitating mental illness, and the toll it takes on the client, as well as those around her, and the wildly inconsistent efforts by a variety of people and systems to help her cope.

Welcome to Sylvia’s Place.

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How About We All Stop Using “Schizophrenic” as an Insult?

by J.C. Schildbach, LMHC, ASOTP

One night about two years ago, I challenged a friend for describing his behavior as “schizophrenic.” In an admittedly snide tone, I asked a quick barrage of questions referencing various types and symptoms of schizophrenia: Are you catatonic? Paranoid? Suffering from delusions? Auditory hallucinations? Visual hallucinations? And so on…

Somewhat unexpectedly, my friend responded with an apology for his use of the term, and didn’t engage in any kind of defensive posturing or attempts to justify his word choice. He clarified that he meant he had changed his mind back and forth several times in relation to a particular situation.

I was a little surprised that I had reacted in such a way to what was supposed to be a self-deprecating comment from a friend. But there were a number of things weighing on me at the time, not the least of which was that my friend was seeking advice on a matter that was best kept between him and his partner, and maybe a good couples counselor. As with most of the times he sought advice, he had already made up his mind about what he intended to do, and was looking to have his intentions validated, or to have them challenged with an argument so compelling that he would have no choice but to turn from that position.

Aside from my irritation with the immediate situation that evening, I had been in contact earlier in the week with a young man diagnosed with schizophrenia. He was in some pretty serious legal trouble, and did not appear to comprehend all that much about it except in the most concrete of terms. That is, he knew what law he had broken and why it was problematic. That information had been drilled into him during his time in court and a stay in jail. But his sense of what the crime meant, and how it was going to impact him, his connection to others, and the choices he was going to have to make, both short- and long-term, was murky at best. It struck me that he was so used to being marginalized that his current situation involved just one more bureaucratic system to interact with—as if this latest set of restrictions was little more than an additional cluster of tasks to occupy his time.

Working in crisis intervention, I also have fairly frequent (phone) contact with people coping with schizophrenia and other mental illnesses that involve psychotic symptoms of varying levels of severity, and which often fluctuate over time. There are few, if any, blanket statements that would accurately cover them all, or make a nice, tidy explanation of what they are dealing with. But, unlike the popular usage of the term “schizophrenic,” the way my friend had engaged it, the behavior, thoughts, and challenges of those dealing with schizophrenia are not simply a matter of being indecisive or changing their approach to an issue.

In the time since I first barked at that friend about his use of the word “schizophrenic,” I have seen it become more and more commonly used (or, perhaps, it was used a great deal before that, and I just hadn’t noticed). Currently, in addition to the way my friend used it, to describe his somewhat erratic decision-making behavior, it is used quite often in relation to politics, and often by writers and other figures I respect or at least tend to agree with. Such uses, though, are potentially offensive, and even insulting in a way that is beneath anyone attempting to make a serious point.

For example, in recent weeks it has been relatively easy to find articles, or to come across people on television news/opinion shows, complaining of politicians behaving in a “schizophrenic” fashion toward immigration policies. Generally, what the use of the term “schizophrenic” means in such a context is that the politicians are saying one thing and doing another, or that they have changed their position on an issue multiple times. It is basically used to mean that a politician or group of politicians have been inconsistent on an issue.

A quick Internet search can find all manner of uses of "schizophrenic" as a derogatory label--frequently in political discourse.

A quick Internet search can find all manner of uses of “schizophrenic” as a derogatory label–frequently in political discourse.

But the problem with using “schizophrenic” to describe contradictory political positions is that it suggests the politicians are suffering from a diagnosable mental illness that is beyond their immediate control, and which can interfere with their perceptions of reality, rather than that said politicians are making rational decisions based on what they think will get the most traction with their “base” or constituents. Politicians shifting their political positions is something that is done with the assistance of political strategists in an attempt to get a message out to voters in a way that might provoke support of a carefully crafted message, even if that message is inconsistent over time.

Schizophrenia, on the other hand, is not volitional. It is not deliberate. People who are living with schizophrenia are not choosing one day to deal with only minimal or well-managed psychotic symptoms, and the next day to pursue the exact opposite. People coping with schizophrenia do not, for example, determine that they will change the content and intensity of their auditory hallucinations based on political polling and messaging strategies. They are not thinking of the gains to be made by crafting an elaborate delusion wherein their friends and family are colluding with various government agencies to monitor and control them.

In short, saying that one’s political opponents are “schizophrenic” is just a different way of labeling one’s political opponents with the big, sloppy label of “crazy”—of indicating that their ideas do not merit any consideration because the people presenting those ideas are not grounded in reality. But, because “schizophrenic” is being used as an insult, as a way of accusing somebody of being worthy of ridicule and dismissal, by extension, it implies that people with schizophrenia are also worthy of ridicule and disrespect. Using “schizophrenic” as an insult encourages ongoing stigma towards those with mental illness. It encourages a lack of understanding of mental illness, and of how to address the needs of those struggling with it. It is dehumanizing in the way that all insults aimed at one’s “enemies” are intended to dehumanize.

And people with schizophrenia are not our enemies. They are people struggling with something that we only barely understand. They are people who, at the very least, do not deserve to be lumped in with politicians who are fine-tuning messages of anger and outrage to try and get votes.

Now, lest anyone think I’m engaging in “word policing,” let me say that I am. As much as language is a dynamic thing, there are still right and wrong ways to use words, or rather, more and less accurate ways of using them. We still make daily decisions about whether we are going to use words to clarify or to obscure, to increase understanding or to confuse. The word “schizophrenia,” unlike a number of other words used in mental health diagnoses (anxiety, narcissistic, etc.) was coined, by Eugen Bleuler around 1908, specifically to refer to the mental illness. It literally means “split mind.”

Arguably, the literal definition of schizophrenia could easily be applied to various other situations such as the one’s already described, and it would not be inaccurate. And, arguably, the mental illness or cluster of illnesses known as schizophrenia involves a broad enough range of symptoms and presentations that the diagnosis requires specifiers for clarification in individual cases. Still, rather than taking a word created to refer to a mental illness, one that will always have ties to that mental illness regardless of how one claims to be using it, and expanding the use of that word to include any behaviors one perceives as inconsistent or otherwise in opposition to one’s own beliefs about appropriate behavior, why not pursue more accurate understanding of the word, and a greater understanding of what the mental illness means, and does not mean?

It seems to me that, rather than calling politicians “schizophrenic,” it would be much more damning to say that one’s political opponents are completely inconsistent in their approach to an issue because they feel that they can achieve greater political gains by changing their position and their message, instead of sticking with real principles or working hard to find real solutions to complicated problems.

And instead of labeling our own actions, or the actions of others as “schizophrenic,” simply because they are inconsistent, appear contradictory, or we disagree with them, why not just acknowledge that most of us are not as steadfast and true as we like to imagine, and that we often don’t make decisions unless and until we have to? Why insult people with schizophrenia by suggesting our poor decision-making skills are the result of a serious mental illness, one that involves much deeper struggles than indecisiveness or occasional mild impulsivity?

How about we all stop using “schizophrenic” as an insult?