Lobotomy

Another look backwards - this time about one person's experience of getting a lobotomy when he was 12. Yes, 12. The book is called My Lobotomy and it is by Howard Dully and Charles Fleming. The ISBN for the edition I read is 9780091922191. You can find it through the usual book channels.

This is what the publisher says about it:

Howard Dully was 12 years old when he was given a lobotomy. He was 56 years old when he found out why. The four decades in between tell a story of profound love and compassion.
In 1960 Howard’s father and stepmother delivered him into the hands of the man who had invented the 'ice pick' lobotomy. Expelled from the mainstream medical community, his once-popular procedure now a grisly medical relic, Dr Walter Freeman was eager to turn this temperamental 12-year-old into a submissive boy – especially after hearing the terrible lies his stepmother told about him. Howard, told he was going into the hospital for tests, was instead given electro-shock treatments and a transorbital lobotomy. It took him 40 years to recover.
Howard Dully’s escape from that dark place is a voyage of enormous hope and universal appeal.

I read this book very quickly. It is a plainly told story - which can often lead to a very dull read - but something of Howard Dully shines through. He seems to be always trying to understand his step-mother, his father and Freeman. It is not a "they were bastards and I am a poor victim" story.

From what I can make out, the lobotomy wasn't the worst thing that happened him or the most damaging - it was the lack of love and protection - which led to him being lobotomised and then shuttled around various places until he was in his 20s. There were adults who cared about him but they were pretty powerless overall. I wonder how things would have turned out for Howard if he hadn't had those adults.

Lobotomies are not performed anymore and psychosurgery is pretty rare. However, what happens kids who are perceived as difficult can often be as harrowing as what Howard experienced. Instead of surgery, they are usually given medication, medication which may not have

The NPR site which gives you a brief outline and you can download an mp3 of the radio programme which Howard made and which started him finding the answers to many questions.
The US publisher's website allows you to read the start of the book.
A review of the book from the NY Times and the Observer.

More information the lobotomy here and at www.psychosurgery.org

The Past and the Present

I haven't been blogging here much - this is a very personal topic and sometimes I have no stomach for it.

However, following some interesting recent conversations, I have decided to post about three different ways in which the past has been commemorated:

• a series of photos called Library of Dust which document 'decaying copper canisters filled with ashes of mental patients who lived, and died, at the Oregon State Hospital between 1880s and the 1970s'
  
• an exhibition of photos called The Lives They Left Behind: Suitcases From a State Hospital Attic of 'the forgotten trunks and suitcases found in an attic at the abandoned Willard Psychiatric Center' in New York State.
• Testimony: Inside Stories of mental health care - a collection of articles, essays, film clips, other artwork and links on all things related to the history of mental health care in the UK.
  

Please visit the sites I've linked to. They are very moving and thought-provoking. Well, I've got a lot of thoughts and questions in my head having read about them, both on the relevant websites and on mainstream media sites.

How do we think about these people? Do we see them as passive victims of an uncaring system or as active agents in their own lives?

And how does the present differ from the past? That question is asked on the website for The Lives They Left Behind.

One positive difference is that we are better able to see what is happening in other countries and areas so we are less isolated than our predecessors were. It is easier (not the same as easy) for us to share experiences and ideas, and to work for positive change.

"drink a glass of warm milk"

First thing I remember from this morning was hearing this on the news.

A Perth man has criticised the out-of-hours service provided to psychiatric patients after he was told to "drink a glass of warm milk".

It cheered me for a couple of reasons. Mostly because being told to drink warm milk seems such an inadequate response to someone who is suicidal. But it is not unknown for people in a lot of distress to be given such inane advice as "have a hot bath" or if it's really serious, "have a hot bath with lavender in it". So it is good to have this publicised.

But another reason is that someone with a mental health problem is using this to argue for improved services and is talking about it himself. When I first got into all this mental health stuff, it was always "experts" and "carers" talking on our behalf, or so they claimed. And hearing this guy this morning made me realise things have changed. A bit. Hope he helps things change a little bit better.

Filthy lucre

I don't know how I missed this article - Patient groups special: Swallowing the best advice? - but the issue of patient organisations receiving funding from pharmaceutical companies, has been on my mind for a while. I recently heard a mental health service user talk about 'screwing the drug companies' by taking money from them. My 'conflict of interests' alarm was triggered and ever since, it has been mulling around in my mind.

I was diagnosed with a physical health problem a couple of years ago, and I did my research online about it. I was a bit confused and unsettled by the lack of clarity about the links some patient organisations had with pharmaceutical companies. There seemed to be no discussion or awareness of the problematic nature of such links, unlike within the mental health service user movement. Although I suspect that it is less of an issue than it used to be and that worries me greatly.

Doing a bit of browsing on another subject entirely, I found that article in the New Scientist from October 2006. I think it says things better than I can. I like the phrase 'poor but virtuous' but would hesitate to use it about any group I am associated with - it would invite all sorts of criticisms on all sorts of levels.

Where else can user groups get funding? The state? Charitable trusts and foundations? The lottery? All bring potential conflicts of interest and I don't hear much discussion about it.

depression: a mild neurodegenerative disorder?

"The best way to think about depression is as a mild neurodegenerative disorder," says Ronald Duman, a professor of psychiatry and pharmacology at Yale. "Your brain cells atrophy, just like in other diseases [such as Alzheimer's and Parkinson's]. The only difference with depression is that it's reversible. The brain can recover."

Came across this article in the Boston Globe - Head fake: How Prozac sent the science of depression in the wrong direction which is interesting for a couple of reasons:

1. it shows how the belief in the serotonin theory is a bit unfounded. I am learning to be wary of theories offering to explain everything conclusively. I expect this new hypothesis to be challenged by a new one, sooner or later.
2. I have often entertained the idea that I had a neurological condition with psychological aspects - psychiatry never seemed to explain my experience that well. Thinking in terms of having brain damage helps me somehow make sense of things. How odd. Well, what would you expect of someone with brain damage?

Where does this leave me with my suspicion of the medical model? I seem to arguing in favour of neurology over psychiatry - but both are about the physical brain. I don't know. It just strikes me as interesting - and it offers hope - brains can repair damage. It seems less ominous than brain chemicals going awry...

"We used to think there was only one kind of anemia," says Arturas Petronis, a scientist at the University of Toronto who investigates the underlying causes of schizophrenia. "But now we know there are at least 15 different kinds. We'll likely learn the same thing about many mental illnesses."