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From the start the
authors acknowledge that this is really a book they have compiled, or rather
edited, mostly from the writings of their patients at the Hillside facility in
For most of us who work
in such surrounds, the stories are either comfortingly or tragically familiar.
As they write of their first experiences or hospitalisations with this
condition, those with psychosis present and past document the sudden
realisation that their lives have changed for ever. Although some write with
clarity, and the compilers appear to largely have left their syntax alone, most
have the dullness and sad weight-bearing properties of the mentally challenged.
The challenge of the
condition plays itself out in the usual ways: the initial strain of their
lives, then the symptoms and strangeness, at first tolerated, then denied, then
capitulated to, then the trap of hospital, the medication and the side effects,
the interaction with society taking hold of their freedom, and the overall
burden of psychosocial loss.
With most, it seems the
losses drag them down for periods of up to five years, until they come to some
stability. They get fat on olanzepine, drool on clozapine, tremble on risperidone,
get stiff and impotent on typicals, and can't make up their minds on quetiapine.
They get depressed, they deny, they resist, they capitulate.
They struggle in most human
ways with telling or not telling partners in sex and society, business and
family. They feel the guilt of any action that may have led to their being one
of the chosen, and struggle with the fact they were. One writes "why me"
and then "why not me" when told she has been touched forever by this
For anyone far down the
line as a treater, or carer, or patient, this is a nothing-new book.
For those family or patients who are only just coming to realise that something
is wrong and will be forever, this book is full of the new and the sad, bad and
mad side to schizophrenia.
Some of it is only
vaguely contentious, such as the mooted fact that schizophrenia is a "chemical
imbalance" or that the drugs "regulate neurotransmitters" or
other platitudes that violate the idea of brain systems in interaction, or the
unidirectional antagonists, or of the Goldilocks drugs, or of the rich
interactions between genotype and phenotype. The experts lurk in the
background, but don't really put themselves on the line: this is a book by the
people and for the people. It treads softly politically.
It still follows the
party line, you have an illness, we have pills, we cannot cure it, you go to
hospital, you will be sick forever: all true enough. But some stories, such as
Zelda's, are told in more detail, and plague the mind. Some of these stories
are made more effective by the banality of tone:
Eating and drinking caused ... trips to
the public, dormlike bathroom ... torturous for me. The first time I went into
one, a lady, maybe in her mid-thirties, looked at me and let out a low-volume Hi
... Her hair was up in a sloppy, curly ponytail; her face was lacking in makeup
and happiness. I vocalised nothing in return, but my face said to her, "Please
just ignore me. I'm only here because I couldn't hold it in anymore. My first
choice would be to pee all over the floor in my room, but then I would have to
associate with that man with the mop." Maybe she didn't hear all that with
my expression. Probably she just quickly go the notion that I was as hopeless
as she looked.
As a book, it avoids,
like the plague, the news of the fomenting militancy surfacing amongst
patients, some of whom turn on their medical carers with violence: patients who
default on medication are understood, but misguided. DSM-IV is deity, and its
subdivisions are fact: everyone goes to Level III in hospital. Rehab and
recovery models are not offered up as viable alternatives to hospital, and
stigma is accepted, not challenged, one merely has to lie and deny. This book
is after all a breathy attempt to present this damning illness from the damaged
goods consumers themselves in an attempt to humanise the patients and mitigate
the stigma; the Who am I now? Chapter is uninspiring.
The concern is that this
book will only be read by the converted, or the families who are informed a
little now, but not yet there. The vast Joe Q Public average person in the
bookstore will simply not buy it at all. Schizophrenia happens to someone
else, means split personality, is not our problem. Overall the book is
depressing. The drab, passive ordinariness of the patients themselves would
scare the hell out of the lay reader, who would perhaps not discriminate so
much, but certainly would be terrified. There is here only the offer of
hospital care: there is no reflection from the patients that assertive
community care is being applied to their cases as they leave acute services.
Rehab appears to be hospital based, expensive, the stories collated by
Recently, a colleague of
mine became psychotic and very disorderly in a large city. He was taken by his
mother by the GP, who sent him immediately to the psychiatrist. He spent an
hour with him, sending him home with 400mg of quetiapine on board, increasing
every day. Two hours after they got home, a community team consisting of a
nurse, medical student and social worker arrived. They came once a day for a
week, helping him and the family sort out the medication. After two weeks he
felt better, and was less sedated. The family began to attend evening sessions
at a local information group to find out about this illness. He is well, and
despite some minor relapses in the year that followed, has yet to set foot in a
hospital. Or write about seclusion, hierarchical wards and rule-driven
systems. Not confined to a hospital despite being at risk, he never lost who
he was, never used the dormlike bathroom, he went home to bid, like most sick
In most other cities,
including my own, he would be writing his story from a hospital ward, spending
months there, with people being rude to him, learning to adapt to the society
of the damned.
His story is different.
So the book sets out to
tell the story from the horse's mouth in a traditional psychiatric setting, and
does so, in comic book style and with comic book charm. Charming line drawings
of each writer head their paragraphs, and each character ekes through, rather
like a caricature of someone we have known or locked up in our time, or jumped
on five at a time, or stuck with needles loaded with oily parkinsonian agents.
Its hard to imagine the
market for this book. Perhaps each new patient entering a ward with the threat
of diagnosis, each family in tow, needs to be issued with such a book. 1% of
the American market will need to see this, about 2 million people, a huge
market, all needing to know what others like them have gone through.
Although subtitled a 'comprehensive
resource' work, there is not much. It is more like a survivors journal, allowing
only a tiny bit of the phenomenology of being nuts to come through. Many of my
own patients have done a better job, are more colourful, and give their carers
a much richer tableau of what the experience was like in retrospect. It seems
the patients of Hillside give a more sanitised, mellowed or toned-down
view. They have had to discard their rich experiences so they could leave the
locked ward, seem tentative in trotting out their feelings and experiences when
doom struck. In this way, their stories are drearily tragic, and fail to
inspire. Contributions from the experts are given from the doorway, not
upfront, sure done deliberately so as not to intrude, but lacking the richness
of tapestry that Art Brut can provide, and denying the sick creativity produced
by the illness. Oliver Sacks of course has done this so well in behavioural
neurology, so much so that it is a pity to see such a chance in psychiatry slip
through the fingers of the authors/compilers of this minor paperback.
So for those hospital
wards who need to give out a cheap and comprehensive brochure on schizophrenia,
for those families and patients who are embarking on a journey they did not
choose, and would love to abandon, this is the work, easily read and absorbed,
of those who have drifted through, and are trying to find meaning, positively,
negatively, and cognitively. For this purpose, it is just fine, and takes a
mild look at horror, decline, and despair, all with the spin of the patient
I don't think that
students in the mental health professions would find this book that
interesting, unless their training never fleshed out this arena at all, or they
had no contact with such sufferers. It does inform though, banal and trite.
The internet has become a powerful resource for most, but for those who do not
have such luxuries, perhaps the drug companies could buy a few thousand of
these and distribute them to the families who need to be comforted, but not
aroused. Helpful, in the end, it is, but only for those in the USA.
What is missing is the
concept of recovery: not from the illness, but from the loss of social
position, of social capital. The book sets out to inform, and it does, but not
in any revolutionary way. The experiences of those in this diary are left spun
and sanitised, but without champion. Until affirmative action is used to
address the seriously skewed playing ground, the stories of the damned are sad
and tragic: those with serious mental disorders are facing society in an
unequal relationships with their culture, and they are therein disadvantaged.
© 2003 Roy Sugarman
PhD, Clinical Lecturer in Psychiatry, Adelaide University, Senior Cinical
Neuropsychologist, Royal Adelaide Hospital Glenside Campus Extended Care