A slog of a book but thought provoking

The-Lives-They-Left-Behind-Penney-Darby-9781934137147So after reading that this new-to-me blogger read it, I picked up The Lives They Left Behind: Suitcases From a State Hospital Attic from my library. (Note, if you click the title it takes you to the NYT review and I pretty much agree with the review.)

While the authors spend a lot of time arguing that mental illness doesn’t exist — at least in the patients they’re writing about — they didn’t convince me. Still you don’t have to deny mental illness to understand intuitively that the way we treat (and treated) those who struggle with mental health issues is (and most decidedly was) wrong wrong wrong. I finished the book last night and it was a nice segue from the lecture I attended last night about crisis care. The people on the panel all work for Netcare, which is basically Central Ohio’s emergency room for people having a mental health crisis. People who are suicidal, homicidal or actively psychotic end up there and Netcare acts as a sort of triage to help them get back on their feet. It’s true crisis care and from what I can tell the counselors there act more like social workers. As they talked about their jobs and the (lack of) resources for their clients it was a reminder of what we faced at shelter in the mid-90s. Clearly things haven’t improved since then. There just aren’t enough services for people with mental illness and while I agree that tearing down the old mental health “hospitals” was a good decision on humanitarian grounds, sending the people who need help out into the community without support systems in place was a recipe for disaster.

(It would have been nice if the hospitals had been revamped to go back to their Quaker roots.)

When we were at shelter we’d lament that there was no place to send our mentally ill clients that would just protect them and nurture them and let them be as crazy as they wanted to be. Obviously active suicidal or homicidal ideation needs intervention but many of the clients we kicked out of shelter were no danger to themselves or others. They weren’t mean or scary or dangerous; they just heard voices or struggled with paranoid delusions. They didn’t want medication but they also weren’t able to function (i.e., get a job, secure housing) without it. Some of them were lovely, kind people who just couldn’t follow a case plan. That made them wrong for our short-term, solutions-focused shelter but it would have been lovely if there was more housing for them. There was a very little but no where near enough and the wait list was impossible.

I was thinking of that especially when I got to this passage in the book:

Hearing voices in itself is not a symptom of an illness, but is apparent in 2-3% of the population. One in three becomes a psychiatric patient — but two in three can cope well,” according to Marius Romme, emeritus professor at the University of Maastricht in The Netherlands, and one of the key researchers in this area. “The difference between patients hearing voices, and non-patients hearing voices, is their relationship with the voices. Those who never became patients accepted their voices and used them as advisor. … When you identify hearing voices with illness and try to kill the voices with neuroleptic medication, you just miss the personal problems that lay at the roots of hearing voices — and you will not help the person solving those problems. You just make a chronic patient.”

p. 53 of The Lives They Left Behind: Suitcases From a State Hospital Attic

The text goes on to say that most people who hear voices do so after a traumatic event — a triggering event — and that drugs are only effective in about 1/3 of the patients who receive them. It makes me wonder about helping people manage the voices differently and I’m going to look further into Dr. Romme to see if there is more about this. The text argues that if therapists address the underlying emotional event that triggered the voices that medication will not be needed at all and this may be true for some (if not all) so I’m going to look Dr. Romme up for that, too.

I’ve been mildly surprised by how many counseling theories deny that organic mental illness exists. I’m not talking like a philosophical discussion about how culture defines illness; I’m talking about how some theorists think mental illness is always an emotional disorder. I don’t buy that. I think cultural discussions are interesting (and necessary) but I think it’s pretty dang clear that some people have brains that make them unhappily mentally ill and that for those people the drugs that work effectively are a god send. There is a murky area though when we’re talking about patients’ rights and individual experience. When I think about some of our shelter clients and whether or not it was reasonable to expect them to conform in order to get food and shelter.

Also if you want to see the exhibit that the book is based on, here it is: The Willard Suitcase Exhibition

Comments 6

  1. cool post, again! My second cousin worked for a “mental institution” in Wales> At the time, thatcher was following Reagan’s lead and dumping all the “inmates.” My cousin is a lovely physician, this was an old aristocratic sprwaling home with gardens that the residents tended. They sold their produce and crafts at the local market and were part of the community. Many had lived there for decades. My cousin was distraught, as it seemed to be just one of those places. Nurturing, supportive, safe… An 80 year old woman who was a staff favorite was dumped. So sad. Another case of extremes, rather than finding workable solutions. Reminded me of a recent article about Alzheimer’s and how “radical” it was to let residents of memory facilities eat, bathe when they wanted to, or eat chocolate, or care for a doll if it made them happy. Their falls and restraint use both physical and chemical were really low… We need to be respectful, nurturing, creative and willing to pay for it. In my dreams, eh?

  2. That was one depressing website. I don’t think I’ll read the book. The idea that there is no organic mental illness makes me, upset (I was going to write crazy, ha!). I believe things are way more complicated than that.

    That said, I have a relative who hears voices and had a breakdown after something really terrible happened. (His prom date murdered her mother and he was first on the scene. This was five years ago or so.) The anti-psychotic meds made it impossible for him to stay awake so he went off them and he’s working cognitively on the voices. The whole thing breaks my heart. Now that I think about it, I can think of two other people I’ve known who became problematically schizophrenic after a traumatic event. Hmm…I’m sure it’s true that people with good support, love, and therapy do better.

  3. I am walking out the door so don’t have time to say as much as I want, but on the topic of helping people live with voices – rather than silencing them – there’s some really cool research going on looking at using cognitive therapy for psychotic disorders. And that’s the basic idea – change people’s relationships to delusions/hallucinations, rather than fight the symptoms themselves. When Beck introduced cognitive therapy he used to say that schizophrenia was one of the only disorders it wouldn’t be useful for. Now he’s helping run some of the studies looking at CT for schizophrenia.

  4. Have not read the book but would also agree with the NY Times review about the subject matter. Having known severe mental illness in my husband’s family (two sisters who were suicides due to psychosis) and the children of some close friends, I know it is all too real, and de-institutionalization is not the answer. Yes we all know about and some of us feared the snake pit mental hospitals of the 19th and 20th centuries. Infamous Greystone, where Allen Ginzberg’s mother and Woodie Guthrie were patients is several miles from where I live. But we have not yet come up with a satisfactory way to deal with the mentally sick who used to be institutionalized and now live in the streets, a danger to themselves and in some cases others.

    So-called “patient advocates” are often advocates against desperate families trying to get their delusional loved ones some kind of help and safety. Would you like to have a delusional and also physically ill 22 year old in the hospital and nobody will tell you anything or let you in because they are protecting their “privacy”?

    I do not have a lot a patience with those purveying a romantic and wrong view of serious mental illness, especially schizophrenia which is hell to live with for the patient and the family. No, these people are not just “eccentric” or “artistic” or “misunderstood by society. The fact that in the past well people who did not speak English, or were in some kind of temporary distress were shut up for years in mental hospitals is indeed a disgrace, but that does not mean nobody needs longterm hospitalization or that mental illness is a myth.

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