The Boy with the Topknot

by Sathnam Sanghera

  I wasn’t, at that stage, entirely ignorant about mental illness. I knew, for instance, that people who have depression are often sad, not because of their circumstances, but because of a chemical imbalance in the brain. Mum took antidepressants. But that, I’m ashamed to admit, was the extent of my insights. Like many young and healthy men I regarded the mentally ill as a distant, difficult and sometimes even amusing aspect of other people’s lives. I would occasionally remark, in a way to highlight my urban streetfighter credentials, that Brixton, the area of London I lived in, hosted 1 per cent of the UK’s mental health patients – a fact gleaned from a Sunday newspaper feature. I could regularly be heard referring to difficult colleagues and ex-girlfriends as demented, maniacal, hysterical, psycho, deranged, mentalist, whacko and bipolar (though in one case the person concerned did actually turn out to be bipolar). I didn’t really understand the difference between ‘psychotic’ and ‘neurotic’, though again I used the words to describe ex-girlfriends and colleagues, and while I thought Puli had had one, the phrase ‘nervous breakdown’ confused me. As far as I could tell, it seemed to refer to everything from a bad hair day to a full-on catastrophic mental breakdown.

  As for ‘schizophrenia’ … Well, I’d watched A Beautiful Mind, the biopic of John Forbes Nash Jr, the maths prodigy who overcame schizophrenia to win the Nobel Prize. I knew it was the title of a bad album by JC Chasez, a former member of ’N Sync. I occasionally used the word as an adjective – to describe ex-girlfriends and colleagues, and also, ironically, my split life between Wolverhampton and London. And, of course, media coverage had given the word certain connotations of terror, violence, and of sufferers sitting hooting and tooting in the secure wings of prisons and hospitals around the country.

  In other words, I probably knew as much about the disease as Punjabis know about landscape gardening. So when I returned to London after that visit – Bindi and I actually spent a nice afternoon flicking through old family photographs and old copies of Smash Hits (she’d kept everything) – I did something I should have done years earlier. I logged on to a database of newspapers and looked up recent articles that mentioned the term. It’s hard to imagine another phrase in the English language that could have elicited a more depressing set of headlines.

  CITY MAN GETS LIFE FOR HACKING NEIGHBOUR TO DEATH

  (Allentown Morning Call)

  NUDE WOMAN ARRESTED NEAR MALL

  (Brownsville Herald, Texas)

  ARREST MY SON BEFORE HE KILLS SOMEONE

  (Daily Mirror)

  EYE-GOUGING MAY LEAVE MUM, 73, BLIND

  (Dominion Post)

  Once again I struggled to tally the apparent violent reality of schizophrenia with my sensitive sister and my always-gentle father, but, keen not to lose momentum, I continued the research by consulting a medical dictionary. Unfortunately, though I didn’t realize it at the time, the one nearest to hand in the London library I sometimes worked in – Encyclopaedia of Aberrations: a psychiatric handbook (1953) – was also woefully out of date. Somewhere between entries on ‘sadism and masochism’ and ‘sexual activity. Relation of olfaction to’, I found several entries related to schizophrenia, and settled on one headed ‘schizophrenia latent’. It mentioned something called the ‘Rorschach test’ (which I now know is a controversial and possibly unreliable method of psychological evaluation), and an outline of fifteen features ‘generally indicative of latent schizophrenia’. That was exactly what I needed, I thought – a list of symptoms. I ran through the list, putting mental ticks against the symptoms I thought might be exhibited by Dad:

  Minimal loss of reality contact (maybe, not sure what this means though)

  Deviations from the common ways of thinking, expressed by bizarre associations or looking at the cards from unusual angles (yes)

  Lack of mental energy, with reduction of intellectual initiative (yes)

  Anxiety, often based on awareness of mental borderline state (maybe, he does sometimes look anxious)

  Fantasy living (maybe, but not sure what this means)

  Estrangement from reality (yes, probably)

  Hypochondriasis (I had to consult another dictionary to find out this meant ‘hypochondria’. No. Dad never complains of being ill)

  The tendency to attribute reality to the cards (maybe, but not sure what this means)

  Ideas of reference, often expressed jokingly (no – don’t think so)

  Projections of inner hostility (no – the most passive man I know)

  Projections of asymmetry (maybe, no idea what this means)

  Religious themes, or interest in related fields (no – he goes to the temple a lot but seems more interested in the social aspect)

  Chaotic sexuality, with preoccupation with sex and loss of social sense (really hope not)

  Homosexuality (no)

  Withdrawal from people (no)

  Putting the book down, it seemed to me that Dad was hardly conclusively schizophrenic – seven ‘nos’; three ‘yeses’ and five ‘maybes’. If anything, I seemed to exhibit more of the symptoms than he did: I lacked mental energy, had anxiety, was a hypochondriac, had inner (and outer) hostility, was interested in religious themes, was as preoccupied with sex as any other man, was often mistakenly thought to be gay, and had, since the breakup with Alison and the subsequent realization that I had to confront my mother, withdrawn from people. Meanwhile, the second point – ‘Deviations from the common ways of thinking, expressed by bizarre associations or looking at the cards from unusual angles’ – could have been my job description.

  I’d only pursued this line of thought to amuse myself, but a scary possibility became lodged in my mind. If both my father and my sister had been struck with schizophrenia, did it mean I was at risk from mental illness too? Come to think of it, was I already halfway there? Didn’t friends and family often accuse me of being neurotic? Wasn’t I too quick to anger with my family, too quick to tears in confrontations? I felt guilty for letting such selfish concerns overshadow the more pressing matter of finding out about my father’s and sister’s respective sanity or insanity, but from that point, the quest to find out about schizophrenia became, at least in part, a personal hypochondriacal one. I ordered a set of books about schizophrenia on the internet.

  Opening the parcels was a depressing business. Lord knows why publishers feel the need to decorate the covers of books like Recovered, Not Cured: A Journey Through Schizophrenia and The Quiet Room: A Journey Out of the Torment of Madness with pictures of faceless women sitting bleakly on bare floors, of distorted faces staring distractedly at each other. The subject matter is bleak enough. A few waving bears or lolloping kittens really wouldn’t go amiss. But if the covers made me want to self-mutilate, what lay between them made me feel worse. Time after time I would launch into a new title with enthusiasm, only to hit a phrase so bleak – such as ‘each of us lives a life of quiet desperation’ or ‘Jonathan died of a drug overdose when he was twenty-four’ – that I would have to stop and immerse myself in Fur Fighters on my Sony PlayStation to get over it. The task was made additionally difficult by the invariable turgidity of the writing (it seems a psychiatrist will always use twelve words when three would do), the arbitrary and impenetrable classifications (talk of ‘paranoid’/‘hebephrenic’/‘catatonic’/‘simple’/‘type 1’/‘type 2’ schizophrenia was of little help), and the lack of consensus. I’d think I’d finally got my finger on an aspect of schizophrenia, only for it to be contradicted by another psychiatrist in another book.

  It was a comfort and delight, therefore, to come across E. Fuller Torrey’s Surviving Schizophrenia: A Manual for Families, Patients, and Providers. The book didn’t appear promising. There was the uninspiring title, for a start. And the author’s name, too: how much can you trust a man who initializes his first name? Also, like so many writers on the subject, Torrey, a clinical and research psychiatrist specializing in schizophrenia and bipolar disorder, laid on the misery with a trowel: ‘Schizophrenia is to psychiatry what canc
er is to medicine: a sentence as well as a diagnosis …’; ‘Schizophrenia is the modern day equivalent of leprosy …’; ‘Schizophrenia is a cruel disease. The lives of those affected are often chronicles of constricted experiences, muted emotions, missed opportunities, unfulfilled expectations. It leads to a twilight existence, a twentieth-century underground man …’ Stop now. I’ve got the point.

  But after a little more reading, it became clear that Torrey was unlike other psychiatrist-writers. He was capable of writing sentences of less than fifty-seven words. He was authoritative and opinionated but still managed to frame debates fairly. The science bits were detailed and clear. And, maybe because his sister was afflicted with the disease, he didn’t give the impression that he was only gracing the subject with his time and attention because he considered it a diverting intellectual exercise. The discussion was imbued with sensitivity and warmth, the acknowledgement that schizophrenia is not only an interesting disease, but is also one that devastates the lives of sufferers and their families.

  It was particularly interesting to read his thoughts on the effect the illness can have on siblings or children of schizophrenics. ‘[They] often try to compensate for their ill family member by being as perfect as possible. In a study of the children of mentally ill parents, Kauffman et al. labelled the extremely competent offspring as superkids …’ I’m not (quite) vain enough to call myself a superkid, and I didn’t have the word ‘schizophrenia’ until the age of twenty-four, but I recognized the desperate urge to be as trouble-free as possible, to compensate for trauma elsewhere. It was also a comfort to read Torrey acknowledging that ‘most siblings and children of individuals with schizophrenia are themselves haunted by a fear that they too will develop the disease …’

  Most unexpectedly Torrey managed the almost impossible task, in a field where people seem almost to wallow in misery, of writing about schizophrenia with humour. A chapter on ‘Fifty of the best and fifteen of the worst books on schizophrenia’, which mercilessly skewered some of the books I’d wasted my time on, was a particular treat. All in all, reading Surviving Schizophrenia was like being told painful news by an insightful, sympathetic and humorous archbishop. It gave me a targeted reading list and with that a realization that most of my preconceptions about the illness had been wrong. It turns out, for instance, that:

  Schizophrenics do not have a ‘split personality’ in the Dr Jekyll and Mr Hyde sense. The word actually derives from the Greek for ‘split’ and ‘mind’, refers specifically to disordered thought, and was coined in 1911 by Swiss psychiatrist Eugen Bleuler, who observed that sufferers had difficulties in sorting, interpreting and responding appropriately to stimuli. For example, when told that a relative had just been promoted at work, a person with schizophrenia might cry. Or they might laugh when told a friend’s house had burnt down. There is a condition which results in something resembling a split personality, but, as Torrey explains, this is called a ‘dissociative disorder’, is much less common than schizophrenia, occurs almost exclusively in women, and is thought in most cases to be a reaction to sexual or physical abuse in childhood. Dr John Cutting and Anne Charlish also dismantle the common misconception in Schizophrenia: Understanding and Coping with the Illness, explaining that in schizophrenia, ‘moods, ideas and actions may change dramatically from moment to moment, but it is very rare that there are distinct personality types to be recognized. It is better to regard the result as a shattered rather than as a split personality.’

  Schizophrenia is a complicated disease, with no definitive diagnostic test and no single defining symptom. Unfortunately, you can’t just get someone to sit a test for it to be diagnosed. The experience of the illness differs greatly from person to person. Having said this, there are certain common symptoms, many of which were laid out by German psychiatrist Kurt Schneider after the Second World War. These so-called ‘first rank symptoms’ include: hearing voices arguing; hearing voices commenting on your actions; feeling that your thoughts are being broadcast to the outside world; believing that your thoughts are being removed from your mind; believing that someone else’s thoughts are being inserted into your own mind; experiencing somatic hallucinations (such as feeling that insects are crawling beneath the skin); thinking that your feelings are not your own; believing an alien force is directing your will and actions; and drawing illogical conclusions from perceptual experiences – concluding from the fact that Chris Rea is playing on the radio, for instance, that the Martians are landing in Dudley.

  Recovery rates vary. Predictors of a good outcome apparently include: having a relatively normal childhood; being female; having no family history of schizophrenia; having an older age at the onset; having a sudden onset; having a good awareness of the illness; and having a good initial response to medication. Conversely, predictors of a poor outcome include: having major problems in childhood; being male; having a family history of schizophrenia; having a younger age at onset; having a slow onset; having poor awareness of the illness; having a poor initial response to medication. This seems to tally with my family’s experience of schizophrenia: my father, who exhibits many of the bad signs, is visibly not as well as my sister, who exhibits many of the positive indicators. But such precursors do nothing to mask the fact that schizophrenia is a life-long condition with no cure. Only a small number of people have only one episode and can then live their lives without medication.

  Schizophrenics do not necessarily want to kill you. The link between mental illness and violent crime is complex. As Torrey explained in a recent article for the Wall Street Journal, ‘to be precise, mentally ill individuals who are taking medication to control the symptoms of their illness are not more dangerous. But on any given day, approximately half of severely mentally ill individuals are not taking medication. The evidence is clear that a portion of these individuals are significantly more dangerous.’ However, in addition to this, it should be stressed that people with schizophrenia are as much a risk to themselves as to others. Between 10 and 15 per cent of people with the illness take their own lives.*

  Statistically speaking, I might be out of the woods. Over the course of my reading I stumbled across many terrifying statistics, including claims that siblings of schizophrenics are on average ten times more likely to develop the condition themselves than members of the general population, and that children of schizophrenics are nearly fifteen times more likely to develop the condition. However, it is some comfort, I suppose, that schizophrenia is one of those chronic brain diseases, like multiple sclerosis and Alzheimer’s, that has a particular age range of onset, and having an initial onset before the age of fourteen or after the age of thirty is not common.

  I felt odd sifting through these revelations while killing time waiting to interview celebrities in London, and even odder sifting through them in Wolverhampton, while my father watched BBC Parliament across the room and my mother, resisting Western notions of comfort and furniture, snoozed under a shawl on the carpet nearby.

  As someone who reads constantly, who starts scanning the washing instructions on the inside of his blazer if there isn’t anything else at hand, I’ve long despaired at the consequences of my father’s illiteracy and my Mum’s lack of English … it means not being able to work out the best-before date on groceries, not being able to complain when you receive bad customer service, not being able to call the emergency services, not understanding the bus driver when he explains that the bus is terminating short of its destination, not daring to travel anywhere you haven’t travelled before, in case you get lost, not being able to help your grandchildren with homework, staring into the distance in waiting rooms because there is nothing else to do, sending your son a ‘for my husband’ birthday card because the newsagent misunderstands your request, having to walk all the way to the doctor’s surgery to make an appointment because you can’t make yourself understood to the secretary, and then struggling to make yourself understood with basic words and hand signals, learning about 9/11 on 12/11, not being
able to read what your son writes in a newspaper, being suspicious of strangers because you can never be sure what they mean or intend or want from you … But it struck me that not being able to read about a condition that has defined and restricted your entire adult life was the worst consequence of them all. I’d learnt more about the science and incidence of schizophrenia in a few hours of reading than my parents had picked up in more than thirty years of living with the disease. It was bewildering to think that even the word ‘schizophrenia’ remained foreign to them.

  But something in another of Torrey’s recommended titles – Mad House: Growing Up in the Shadow of Mentally Ill Siblings – subsequently moderated this unease. In one section, the author, Clea Simon, discusses something called the ‘clasp-knife reaction’, a term which describes how, in certain situations, mechanical joints will not move at all but then suddenly give way. The term is apparently used by some neurologists to describe a common family reaction to the diagnosis of schizophrenia. ‘[The clasp-knife reaction] is characterized by a slow build-up of rationalization that – when it starts to go – completely collapses … We go from thinking, “This is a person, this is my brother. He’s just being a little strange …” Then all of a sudden, “He’s schizophrenic.” You’ve lost the person/brother part …’

  I was guilty of this. If my father watched BBC Parliament obsessively, it must be because he thought his thoughts were being broadcast, I’d concluded. If my sister had a tendency to take things literally it was because Torrey said that people with schizophrenia sometimes struggled with taking a metaphorical approach to language. Among the other things that I ascribed to the disease were: Dad’s slow and considered movements (apparently, the minds of sufferers sometimes get flooded with a rush of thoughts); Puli’s indecisiveness (ambivalence is apparently a common symptom of thinking in schizophrenia); Dad’s comments about the rising sun (grandiose delusions, such as the power to control the weather, are quite common); Dad’s quietness (he was evidently exhibiting a range of ‘negative symptoms’ such as a flattening of emotions, apathy, slowness of movement and under-activity); Dad’s unprompted smiles (the ‘schizophrenic smile’, which appears without obvious external cause, is apparently a response to an internal hallucinatory stimulus), and Dad’s unwillingness to visit the doctor (paranoia).