The Daily Telegraph - Saturday - The Telegraph Magazine
Does this family hold the key to understanding a mental illness?
Robert Kolker reports
One afternoon in 1970, an eight-yearold American girl named Margaret Galvin came home from school in Colorado Springs to find her eldest brother, 25-year-old Donald, naked and shrieking. Everything about Donald horrified Margaret, starting with his shaved head and continuing with what he liked most to wear: a reddish-brown bed sheet, sported in the style of a monk. Sometimes he completed the outfit with a plastic bow and arrow. In any weather, he would walk around the neighbourhood dressed this way, mile after mile, all day and into the night.
There were 12 Galvin children in all. Margaret and her little sister, Mary, were the youngest and the only girls. The family lived on Hidden Valley Road in an expanse of forest and farmland nestled in the steep hills of the American West. This was a peaceful middle-class neighbourhood, and for many years the Galvins seemed to be an exemplary family. The father, also named Don, taught at the Air Force Academy; the mother, Mimi, volunteered for the local opera company.
But on this day, Margaret looked around and saw that the house was completely empty. Donald had carried out every single piece of furniture and stashed it all in their backyard. Donald – along, ultimately, with five of his brothers – suffered from schizophrenia.
Schizophrenia affects an estimated one in 100 people – about three million in America alone. One in 20 cases ends in suicide. But the essential question about the illness – whether it ran in families or emerged fully formed out of nowhere – had consumed therapists, biologists and geneticists for generations. The precise genetic pattern of schizophrenia had long defied detection. For a century,
researchers have understood that one of the biggest risk factors is heritability. The paradox is that it does not appear to be passed directly from parent to child. Psychiatrists, neurobiologists and geneticists believed that a code for the condition had to be there somewhere, but had never been able to locate it.
So when Lynn Delisi, an American psychiatrist specialising in schizophrenia, walked into the house on Hidden Valley Road in 1985, she realised she had found a perfect sample, which could provide the answer that she and her peers had long been looking for. The odds of a family like this one existing at all, let alone one that remained intact long enough to be discovered, were impossible to calculate. This, she thought to herself, might be the most mentally ill family in America.
Delisi, who was the first in a vanguard of researchers using new technologies and knowledge to trace the genetics of schizophrenia, has spent decades gathering data on families with a large presence of illness. The Galvins are the largest in her collection.
The six affected brothers – Donald, Jim, Brian, Joseph, Matthew and Peter – had spent their teenage and adult lives in and out of institutions, but mostly at home, cared for by Mimi. Once discovered, they became the subject of research by the National Institute of Mental Health. As with all such subjects, their participation was confidential. Only now can the family’s contribution be seen clearly for what it is: an ideal genetic sample set that, with time and further study, could point the way to how schizophrenia develops for everyone with the illness.
But theirs is also a tale of extraordinary survival in the face of terrible odds.
It was in early 2016 that a friend introduced me to the youngest siblings, Margaret Galvin Johnson and Lindsay (previously Mary) Galvin Rauch, both now in their 50s. The more I learned about the family, the more I couldn’t believe their story. It was horrifying, encompassing not just mental illness but sexual abuse and neglect, and even a murder-suicide. I wondered how a family could even pretend to stay together under such horrible circumstances – why these sisters wouldn’t have run away the first chance they got.
But Margaret and Lindsay, when I spoke with them, showed that they still had a reservoir of hope. They told me how they each found a way through their traumatic childhoods. And they told me about the family’s scientific legacy as part of the search for the genetic origins of schizophrenia. Margaret
and Lindsay hoped a non-fiction author like me might get to the bottom of what became of that research and hopefully bring the family’s story some semblance of a happy ending.
They also needed an outsider to help make sense of their childhoods and to investigate many mysteries that remained unsolved over the decades. The girls had been so young when so much of this happened; many of the major events were concealed from them and never spoken of within the family again. There was a taboo surrounding mental illness and, at the time, even a theory that it could be caused by environment or upbringing. The sisters wanted the story told as a work of independent journalism, and they believed that every member of the family, sick and well, would participate. I had free rein to follow it wherever it led.
Publishing the true story of a heretofore unknown family felt like a big gamble to me. Their history was so very specific, and so complex, that I wondered how many people would connect with it. But I’ve been overwhelmed by the reception to my book, Hidden Valley Road – not just the reviews, but the letters from readers whose families have been touched by mental illness, and Oprah Winfrey’s decision to make it a selection in her famous book club. The fact that Oprah wanted to help the world see what this family endured was affirming to me and to the Galvins. At last, the terrible stigma of mental illness might be lifted.
As soon as she left for boarding school in the late 1970s, Mary changed her name to Lindsay, in an attempt to become someone new. She is now married and owns her own business, staging corporate events – and criss-crosses Colorado to tend to her surviving siblings.
Lindsay grew up weathering the storm of having six acutely mentally ill brothers, and now devotes much of her life to looking after the three who remain – Donald, Matthew and Peter – sorting out their welfare cheques, finding suitable housing and overseeing their medical care, advocating for different medications when the current ones seem to be failing. Despite everything she has endured, she is still the one who holds what remains of the family together. ‘I was so afraid of becoming mentally ill myself,’ Lindsay says. ‘But I came back with a very clear intention of helping my family.’
For Lindsay, Margaret and their brothers, being a Galvin had been about either going insane yourself or watching your family go insane – growing up in a climate of perpetual mental illness. Even the siblings who weren’t suffering from delusions, hallucinations or paranoia – thinking that the house was under attack, or that the CIA was searching for them, or that the devil was under their bed
– felt as if they were carrying an unstable element inside themselves. And wondered how much longer it would be before it overtook them too. ‘In all of my recovery work,’ Lindsay says, ‘the therapists
I’ve had have said, “You’ve got to be kidding me. You survived that?”’
The dozen Galvin children spanned the baby boom, born between 1945 and 1965. Their parents, Mimi and Don, were born just after the Great War, met during the Great Depression, married during the Second World War, and raised their children during the Cold War. In the best of times, Mimi and Don seemed to embody everything that was great and good about their generation: a sense of adventure, industriousness, responsibility and optimism.
Don and Mimi’s early years together seemed ideal – blessed, as they saw it. Don started his military career in the Navy, went on to join the Air Force, and in the late 1950s became an instructor at the Air Force Academy. By then, the Galvins were drawing attention for their ever-expanding brood.
Donald was born in 1945, and within 15 years he had nine brothers. For Mimi especially, there was a distinction in having so many children, and being known as a mother who could easily accomplish such a thing. In 1962, the Galvins had their 11th child – a girl, finally, named Margaret. Before the birth of their 12th – Lindsay – the family moved off the Air Force Academy grounds and into a split-level house on Hidden Valley Road. ‘Everything was well pressed, and the shoes were shined and we went to church and we looked like the perfect family,’ Lindsay says.
At home, Don was a subdued presence, while Mimi was the disciplinarian. The Metropolitan Opera blared on the radio every Saturday morning, when the children did all their chores. Their neighbours saw the Galvins as a model of excellence. But privately, the home was an unstable place. Donald exercised supreme authority over his younger brothers – first as a sort of substitute parent, and then as a bully and an instigator of chaos.
After he went to college in 1963, his behaviour became more and more erratic. He ran through a bonfire at a rally, suffering minor burns. He killed a stray cat. In 1966 he was sent to a psychiatrist, who diagnosed ‘possible schizophrenia’.
Cycling between denial and panic, his mother struggled to look after him at home, wanting to avoid the shame of ending his college education and a stain on the family’s position in the community. Donald had periods of being fine, and he got a girlfriend, Jean, whom he married, but after he nearly killed her during an argument, aged 24, he became the first Galvin son to be sent to the Colorado State Hospital for the mentally ill in Pueblo.
He didn’t stay long. The cost of a private institution was too high to consider, and so Donald moved back home and terrorised the younger children, including the girls. Jim, the second son, offered his home as another refuge. Both girls took him up on it, only to be sexually abused by Jim on a regular basis, for many years.
They didn’t know that Jim also was experiencing hallucinations, descending into schizophrenia. Once, walking in downtown Colorado Springs as a teenager, he rammed his head into a brick wall. Another time, he dived into a lake, fully clothed.
The older boys, Michael, John, Richard and Brian, all left home as soon as they could. Michael had moved to Florida, and later took up residence at The Farm in Tennessee, America’s largest commune. John married and moved away – his wife was convinced what was happening to the Galvin boys was contagious. Richard tried to build
a career in business, keeping away from the family as much as possible so as not to harm his reputation.
Mimi would sometimes try to minimise what was happening, but she couldn’t cover up what happened to Brian.
The best musician in a family full of them, Brian played guitar, piano and the flute. When he was 16, he formed a band with some friends; three years later they opened for Jethro Tull at Red Rocks, the famous amphitheatre 10 miles west of Denver. After high school, he moved to Sacramento, joined another band, and fell in love with a young woman named Lorelei Smith.
On the afternoon of 7 September 1973, a police officer in Lodi, California, arrived at Lorelei’s apartment to find the door open. He walked inside and found Lorelei and Brian on the floor, a .22-calibre rifle beside them. Her face was covered in blood – she had been shot and killed. Brian had a gunshot wound to his head – a wound that the police on the scene determined to be self-inflicted.
Nobody had any idea why this had happened, but some time before his death, it transpired, he had been prescribed Navane, an antipsychotic used to treat schizophrenia. Although Don and Mimi knew Brian had the family illness, they had told no one. ‘I was not even aware that it was a suicide as a child,’ says Lindsay, who was only seven when it happened. ‘I had been told it was a bike accident, and then a boating accident. My other understanding was that they were both on LSD at the time, but honestly, that could be hearsay. I had no idea about the murder.’
Then, in 1975, Don had a massive stroke. Within weeks, Peter, then just 14, had his first breakdown. This may well have been the nadir of the Galvin family’s story: Brian dead, Don incapacitated, and Mimi trapped at home with two sick and violently schizophrenic young men. Most of the other boys, including Mark and Joseph, had left home. Matthew and the girls were left to watch helplessly as their family imploded. ‘Whenever I got hysterical my mom would freak out,’ Lindsay remembers. So she kept quiet.
But it wasn’t over. Matthew was next. The first sign was when, at 18, he suddenly took off all his clothes at a friend’s house. Joseph’s psychotic break took place a few years later, at 26, when he was fired from a job in Chicago and started writing threatening letters to the White House.
In the years to come, the sisters would work hard to suppress everything about their family of origin, and both struggled to cope with what was going on. ‘There were a lot of secrets,’ Lindsay says. ‘Lots and lots of secrets in our family. As a child and for the years into my young adulthood, I deeply wished that my brothers with mental illness would just die. But that was a gut-wrenching wish – it tore at me.’
When Lynn Delisi paid her first visit to Hidden Valley Road in 1985, she saw at once the burden that Mimi Galvin had been bearing all those years. Lindsay was 20, a student at a university a few hours away. After meeting Delisi, both she and Margaret came away feeling hopeful that the research might lead, someday, to a breakthrough.
Mimi was 60 by then, and the sole caretaker of a large and unmistakably helpless family. Her husband was home with her, but he was frail, and his short-term memory never fully recovered from his stroke. Donald was about to turn 40, but he was also living at home more or less all the time now, his temper and delusional behaviour muted by a regimen of medications.
The second brother, Jim, would wander by from time to time, too, and three other sons, Joseph, Peter and Matthew, roamed in and out of the house, between the hospital and home and their own apartments, which they’d inevitably leave or get tossed out of once they stopped taking their medication. It was up to Mimi to keep them all active, manage their care, shuttle them to appointments, dispense their meds. Given all that, Delisi was amazed by the good cheer she displayed. ‘You can’t be heartbroken every day,’ Mimi liked to say.
Delisi visited fairly regularly for 30 years. It took her longer than she’d ever expected, but in 2016, she had some news for them: based on data from their DNA, Delisi was confident that she had isolated the family’s marker – the genetic characteristics shared by many members that were related to the mentally ill brothers’ schizophrenia.
The marker, a mutation of the SHANK2 gene (a communications assistant for brain cells), came from Mimi’s side of the family. That was a surprise to everyone – especially Mimi, who had long accused Don’s family of being the source. ‘I think that was humbling,’ Lindsay says. ‘But it gave us a little glint of hope.’
Until recently, the Galvins were completely unaware of how they might be helping others – oblivious to how studying their situation had, among some researchers, created a feeling of promise. But now samples of their genetic material have formed the cornerstone of research that has helped unlock new understanding of schizophrenia. And will hopefully, one day, contribute towards finding better treatment.
Donald is 74, and lives in an assistedliving facility in Colorado Springs. He is on psychotropic drugs, which are effective in controlling his behaviour but also have some extreme side effects, including heart inflammation and seizures. One of the consequences of surviving schizophrenia for 50 years is that sooner or later the cure becomes as damaging as the disease.
Matthew is 61, and in and out of the hospital with heart trouble – quite likely the effect of taking his antipsychotic drugs. Jim and Joseph each died several years ago, their deaths related to their medications. Peter is 59 and in assisted living not far from the mental-health institute in Pueblo, where he regularly undergoes electroconvulsive therapy (ECT), once known as shock treatment.
Don died from cancer in 2003. Mimi died in 2017, at 92, a year after learning that her family’s illness was, most likely, genetic. She was the last member of the family to live in the house on Hidden Valley Road.
Her real legacy, the children now see, is not schizophrenia, but the obligation felt, despite everything, by those who aren’t sick to care for those who are.
‘At the heart of everything,’ Lindsay says, ‘you discover it is only by loving and helping that you find peace from your own trauma.’ Hidden Valley Road: Inside the Mind of an American Family, by Robert Kolker, is published by Quercus Books at £20