Robert Kolker didn’t find the Galvins: they found him. They wanted him – journalist, friend of a friend – to write a book about their family because they ‘believed their story had something that could be of comfort to other people who are suffering’. I can’t quite work out why. If your child starts hearing voices and seeing things that aren’t there, or believes they’re dead, or you’re dead, replaced by an impostor, and nothing can persuade them otherwise, the book you want is Elyn Saks’s autobiography, The Centre Cannot Hold: My Journey through Madness (2007). Saks was diagnosed with schizophrenia as a young woman, and still has degrees from Vanderbilt (first in her class), Oxford and Yale, is a tenured law professor at the University of Southern California and has won a MacArthur genius grant. She ends the book with an account of her wedding, full of gratitude for her ‘wonderful … rich life’. Now that’s comforting. Or if the years pass, and the psychiatrists, psychologists, psychoanalysts, healers and psychopharmacologists have failed to keep your child alive, there’s W.J.T. Mitchell’s Mental Traveller: A Father, a Son and a Journey through Schizophrenia, with its emphasis on journey, discovery, finding strength in what remains. Mitchell is fond of quoting Leonard Cohen – ‘there is a crack in everything/that’s how the light gets in’ – and he writes movingly of what his son taught him about creativity and compassion before his death by suicide. Hidden Valley Road is something else: a horror story, expertly told, about a family in which everyone suffers, and no one improves because of their suffering. A doctor once suggested that the Galvins of Colorado Springs might be ‘the most mentally ill family in America’. If their biography offers any comfort, it’s of the bleakest – almost un-American – kind.
For twenty years, the only remarkable thing about the Galvins seemed to be how many of them there were: twelve children born to Don and Mimi between 1945 and 1965. Don worked in public relations for the military, specialising in the missile detection radar that promised North Americans they’d have a good fifteen minutes of warning before any nuclear attack. He took sick leave for depression and had panic attacks; he had been hospitalised, and reported regularly for electroshock therapy years after his release. His mother also had depression, and one of his nephews had schizophrenia. But for mid-century American psychologists investigating the mental health of Don’s children, nothing was as salient as Mimi’s perfectionism. Everyone knew that she’d had a dozen children just to show up Don’s Catholic relatives. Her passion was falconry, and this too seemed to say something about her character: the method of training a young goshawk was to sew its eyelids shut, so that it would rely on its trainer, and her garage was full of leather hoods. To her neighbours she was cool and haughty, ‘doing battle with mediocrity morning, noon and night’. The children – ten boys, two girls – had paper rounds, lessons in music and speed-reading, and were superb athletes. All the boys were altar boys. The eldest, Donald, was a football star, wrestling star, track star, a good-looking boy who dated a cheerleader. In 1965, as a student at Colorado State, he jumped into a bonfire – he couldn’t say why – and needed treatment for burns. A few months later, he went back to the campus health centre because he’d killed a cat, ‘slowly and painfully’, and was frightened. He thought that he might have murdered a professor, and was worried that the CIA was after him.
Don and Mimi persuaded themselves that Donald was just going through a rough patch – he’d recently broken up with his girlfriend. Then their second son, Jim, started spending entire nights in front of the stove, turning it on and off. ‘They’re talking to me again,’ he would say. Joe, their seventh child, sent threatening letters to the White House, and thought he was being chased by wolves: he heard voices too, but considered them bothersome rather than dangerous. Matt, their ninth child, announced that he was Paul McCartney and that his moods controlled the weather. Peter, their tenth child, said that he was a secret agent who worked for Queen Elizabeth. Brian, their fourth child, seemed well enough until, aged 22, he shot and killed his girlfriend, then himself. None of the Galvin siblings knew that Brian had been prescribed Navane, an antipsychotic. Mimi told her youngest children that he’d died in a cycling accident.
One Galvin after another was sent for treatment to the Colorado State Hospital, formerly the Colorado State Insane Asylum. Donald, Jim, Joe, Matt and Peter were all diagnosed with schizophrenia. Brian died without a diagnosis (or his records have been lost). The root schizo – split – seemed to refer to multiple personalities, but what the Swiss psychiatrist Eugen Bleuler had intended by the word, when he first proposed it during a lecture in 1908, was a reference to the ‘clear-cut splitting of the psychic functions’, a divide between what his patients experienced and what they perceived. Bleuler argued that schizophrenia was an organic illness, and that it could be inherited. Then, as now, there was no blood test, no biological or genetic marker that would definitively announce that ‘this person is schizophrenic.’ Symptoms were all a psychiatrist had to go on, but these shifted with every iteration of the Diagnostic and Statistical Manual of Mental Disorders. For some psychiatrists, the distinction was that patients with other conditions, such as manic depression (later bipolar disorder), often got better, while schizophrenics only got worse. Or they considered manic depression to be mostly a ‘mood disorder’, and schizophrenia mostly a ‘thought disorder’. One study found that, half the time, two psychiatrists evaluating the same patient, minutes apart, came to different conclusions. The most recent DSM entry for schizophrenia, published in 2013, waffles: ‘The characteristic symptoms of schizophrenia involve a range of cognitive, behavioural and emotional dysfunction, but no single symptom is pathognomonic of the disorder.’ It lists ‘key features’ – (1) delusions (2) hallucinations (3) disorganised speech (e.g. frequent derailment or incoherence) (4) grossly disorganised or catatonic behaviour (5) negative symptoms (i.e. diminished emotional expression or avolition) – but none of them has to be present for a diagnosis to be made. Instead, a clinician is supposed to recognise the ‘constellation of signs and symptoms associated with impaired occupational or social functioning’.
Some of the Galvins’ psychologists were in thrall to the work of Frieda Fromm-Reichmann, a colleague of Freud’s who rejected the possibility that schizophrenia might have a biological cause: according to her, it resulted entirely from the ‘severe early warp and rejection’ a schizophrenic ‘encountered in important people of his infancy and childhood, as a rule, mainly in a schizophrenogenic mother’. Such a woman was ‘prim, proper, but totally lacking in genuine affection’. According to the ‘double bind’ theory, as formulated by Margaret Mead’s husband, the anthropologist Gregory Bateson, the schizophrenogenic mother was always setting impossible traps for her child, for example, saying ‘Come here’ or ‘Give me a kiss’ and then stiffening or flinching at his touch. ‘He is punished if he indicates love and affection and punished if he does not.’ Mimi was told that she had tormented her children into madness. ‘And so I was crushed,’ she told Kolker. ‘Because I thought I was such a good mother. I baked a cake and a pie every night. Or at least had Jell-O with whipped cream.’
In Mind Fixers: Psychiatry’s Troubled Search for the Biology of Mental Illness, the historian Anne Harrington shows how much of Fromm-Reichmann’s renown came from her ‘willingness to do whatever it took to make an emotional connection with her severely disturbed patients. She would sit in their urine to show them she was no better than they were. She would accept a gift of faeces from them to show that she was not rejecting them.’ But for all her diligence, few patients treated with Fromm-Reichmann’s methods improved. And even if the Galvins hadn’t been doubtful about psychoanalysis, they couldn’t afford it anyway. The Colorado State Hospital would have to do. Once it had been home to thousands of patients, who were put to work (the hospital needed the money) farming and in the hospital’s own factories, producing textiles. Schizophrenics were subjected to ‘insulin coma therapy’, which was supposed to shock them out of their delusions; female patients were sterilised. Enter Chlorpromazine, called Thorazine in the US. The French navy surgeon Henri Laborit realised that a new class of antihistamines made even his most anxious patients ‘indifferent’ about going into surgery. They became ‘calm and somnolent, with a relaxed and detached expression’, as good as lobotomised, but without the brain damage. Between 1954 and 1964, fifty million prescriptions of Thorazine were filled in America. The largest psychiatric institutions downsized or were shuttered. John F. Kennedy announced that the ‘reliance on the cold mercy of custodial isolation’ could now be ‘supplanted by the open warmth of community concern and capability’. It didn’t work out like that.
Mimi thought that as long as her boys took their meds, she’d be able to care for them at home. But who could take Thorazine for ever? It made the Galvins throw up and marked them out as mental patients: drooling, rocking, jerky, only able to walk with a ‘Thorazine shuffle’. But once you start taking it, not taking it can make the psychotic breaks worse – more frequent, more intense – than before. And so the Galvins were always in and out of hospital. Schizophrenic symptoms are usually divided between ‘positive’ – not meaning desirable, just ‘added on’ – and ‘negative’, what the disorder takes away. Although later drugs were sometimes better at reducing positive symptoms, such as delusions and hallucinations, they rarely did much for the negative symptoms: apathy, lethargy, withdrawal, ‘not caring about not caring’. Elyn Saks, the law professor, had delusions and hallucinations aplenty, but she was ‘fortunate largely to escape the negative symptoms’ – otherwise, no memoir. But the Galvins won the whole pot. Despite Kolker’s best efforts, the negative symptoms of schizophrenia plus the ‘emotional flattening’ of antipsychotic drugs often has the effect of blurring all the sick Galvin men into a single character. One doctor described them to Kolker as uniformly ‘stiff and unresponsive … they kind of sat there like hunks.’ The younger Galvin daughter told Kolker in 2017 that ‘just looking at them – overweight, with tremors, stuck in their habits, unable to think of anyone other than themselves – you could tell they were no closer to cured than they were when they each had their first psychotic breaks.’
What is it like to have psychosis? Kolker has spent hundreds of hours with the Galvins, but they can’t tell him. So I turn to Saks. She says it’s like a waking nightmare: ‘all the bizarre images, impossible things happening, and utter, utter terror’. Her first experience, aged seven or eight, of ‘disorganisation’, occurred in the living room of her family’s house in Miami. She asked her father if they could go for a swim, and he snapped at her to leave him alone:
My awareness (of myself, of him, of the room, of the physical reality around and beyond us) instantly grows fuzzy. Or wobbly. I think I am dissolving. I feel – my mind feels – like a sandcastle with all the sand slicing away in the receding surf … The ‘me’ becomes a haze, and the solid centre from which one experiences reality breaks up like a bad radio signal. There is no longer a sturdy vantage point from which to look out, take things in, assess what’s happening. No core holds things together, providing the lens through which to see the world, to make judgments and comprehend risk. Random moments of time follow one another. Sights, sounds, thoughts and feelings don’t go together. No organising principle takes successive moments in time and puts them together in a coherent way from which sense can be made. And it’s all taking place in slow motion.
When she hears houses talking to her – ‘Look closely. You are special. You are especially bad. Look closely and ye shall find’ – she doesn’t hear ‘literal sounds’. The words just come into her head, but she knows that the words belong to the houses; the houses have put the words inside her head.
Much of Hidden Valley Road is from the perspective of the two Galvin sisters, now middle-aged, who approached Kolker about writing the book in the first place, and – I’m guessing – talked to him the most. They remember watching Donald naked and shrieking in the living room: he ‘carried every single piece of furniture out of the house and stashed them in the hills’. He was so sure that his younger sister, Mary, was the mother of God that he would prostrate himself before her, which she found unbearable. (She changed her name to Lindsay.) They grew up frightened of showing anger or strong emotions: they didn’t want to be put on psychiatric drugs too. To get out of the house, they would stay with their brother Jim, who sexually abused them. They didn’t report it. Margaret, the older sister, married young; she’d send her brothers money, but rarely visited them. ‘It’s like pouring a glass of water with no bottom in it. You can’t ever fill it up … It’s not like they don’t want to be better, but they just never got better.’ When Mimi became too frail to care for her grown sons herself, Lindsay took over, which made her proud (she’s good at it), and ‘sad and frustrated and angry that I feel like I’m left with this whole bag’. She assumes that, otherwise, her brothers would have become homeless, like other schizophrenics after the state mental hospitals closed. Kennedy had promised that more than a thousand ‘community facilities’ would offer a ‘co-ordinated range of timely diagnostic, health, educational, training, rehabilitation, employment, welfare and legal protection services’. But he was assassinated three weeks later, and no one saw the programme through. It’s estimated that a third of street people in America have schizophrenia; Lindsay saw them yelling, gesticulating, sometimes getting arrested. A million American prisoners have a severe mental illness.
Once she had been diagnosed with schizophrenia, Elyn Saks ceased to be a reliable narrator. Doctors dismissed her complaints about migraines and memory loss; she nearly died of a brain haemorrhage. On the morning of 9/11, her therapist assumed that she was psychotic when she started talking about planes flying into towers. Donald told Mimi that a few years before his first psychotic break, he’d been molested by the local priest. Donald ‘always said so much, almost all of it nonsense’ – for instance that he’s ‘the offspring of an octopus’ – but she believed him. The priest had often visited the house. She decided that childhood sexual abuse had made Donald schizophrenic, and that the same priest had probably abused Jim as well, causing him to abuse the younger siblings, which made some of them schizophrenic too. She gave up her faith.
Schizophrenia runs in families, but not predictably, parent to child: it meanders through family trees. Among psychiatrists, it is assumed that between 0.3 and 0.7 per cent of children will eventually show signs of schizophrenia, usually in late adolescence. The odds jump to 10 per cent if a sibling has it, and to almost 50 per cent if that sibling is an identical twin. That’s higher than the ‘concordance rate’ with fraternal twins, which suggests that whatever causes schizophrenia, it’s at least partly inherited. But if schizophrenia were strictly inheritable, how could one identical twin get it but not the other? In vogue, for now, is the epigenetic theory: a person is born with a genetic susceptibility to psychosis, but might only develop schizophrenic symptoms once their genes are triggered, in a way we don’t yet understand, by some external event. A short list of suspects includes trauma, psychoactive drugs, bacteria, parasites, autoimmune disease and vitamin deficiency in utero. My favourite clue to the origins of schizophrenia is that there has never been a reported case in anyone blind from birth. Runner-up: some studies suggest that at least 90 per cent of American schizophrenics smoke, which wouldn’t surprise anyone who has spent time on a psychiatric ward. Bring on the nicotine research.
For researchers interested in schizophrenia, the Galvins seemed like a bonanza: figure out why six of the twelve children got sick, but not the other six, and maybe you could get somewhere. A pharmaceutical company took an interest in them, as did the University of Colorado Health Sciences Centre and the National Institute of Mental Health. Blood was drawn; brainwaves were studied. Kolker hopes that the Galvins’ genetic material will ‘one day contribute towards finding better treatment’, while acknowledging that it’s unlikely. In 2014, a study was published in Nature: the genes of nearly 37,000 people with schizophrenia across 35 countries had been compared with those of ‘controls’. The study indicated particular regions of the genome that might be implicated in schizophrenia, which was exciting, and then less so, as the researchers turned up far too many regions to be meaningful. About a third of people born with a particular chromosomal deletion, usually associated with heart defects, ultimately develop schizophrenia, but they account for only a small proportion of overall cases. This may be because ‘schizophrenia’ isn’t actually a single disease, but many different disorders that have been looped together; or because, as the epidemiologist John McGrath has argued, it’s better thought of as a symptom of something else: ‘Clinicians used to look at “fever” as one disease. Then they split it into different types of fevers. And then they realised that it’s just a non-specific reaction to various illnesses.’
Antipsychotic drugs have barely changed in a generation. The newest drugs are less likely to make patients twitch, but they do cause diabetes, heart attacks and seizures. Jim and Joe Galvin died in middle age of heart disease almost certainly brought on by their medication; Kolker says that Matt Galvin now has serious heart trouble too. Nearly three quarters of people prescribed drugs for schizophrenia stop taking them within a year and a half, and not because they’re cured. The drugs are however phenomenally profitable: American doctors alone prescribe $10 billion worth of antipsychotic drugs each year. But despite the need for better ones, in recent years the research that the largest pharmaceutical companies have been willing to sponsor tends only to weigh the effectiveness of an established antipsychotic drug against its competitors. In 2006, the psychiatrist John Davis published a study of these studies in the American Journal of Psychiatry: ‘It appears that whichever company sponsors the trial produces the better antipsychotic drug.’ Companies weren’t fabricating their results, but they were spinning them, and designing trials to play to the strengths of their own pill. Inventing a new drug, or finding a new use for an old drug, is risky – for the company and also for test subjects. Rats don’t get the symptoms associated with schizophrenia; you need humans. Charitable funding for research on severe mental illnesses is negligible. Patients aren’t able to lobby for government support the way people with other health conditions do. Their families are overwhelmed, or ashamed. And researchers are exasperated. One psychiatrist told Kolker that she was advised that studying schizophrenia was a professional dead end: ‘Better to spend your career working on depression or eating or anxiety disorders or bipolar illness – something with even a glimmer of hope.’ Kolker points optimistically to an experiment now underway on the effect of giving pregnant women high doses of choline, a nutrient found in eggs which is essential to foetal ‘brain scaffolding’. We should know the results in about twenty years.