Twenty-three years after Caroline died I’m shocked that so little has changed for people living with schizophrenia
Writer and broadcaster Christina Patterson recalls her sister Caroline’s bravery living with schizophrenia and how the illness affected her family.
Christina pays tribute to her elder sibling, parents and brother, and also reflects on dealing with loss and her own struggles in a poignant family memoir, Outside, the Sky is Blue.
Writing for SANE, Christina decries society’s treatment of people with severe mental illness and how more needs to be done to break down the stigma and taboo surrounding debilitating conditions such as schizophrenia.
When my sister, Caroline, was fourteen, she suddenly disappeared. She had, said my mother, gone to a “unit” because she had had something called a “nervous breakdown”.
I was nine. My brother, Tom, was eleven. It was some time before we understood that “the unit” was, in fact, the adolescent unit of a psychiatric hospital. For six weeks, we weren’t allowed to see her.
Christina, second from left, with her family in 1979 Courtesy Christina Patterson
When Caroline finally came home, initially for just for weekends, we were shocked by how much she had changed. Her shoulders were hunched. Her speech was slurred.
Her face was peppered with pustules and her swollen stomach made her matchstick arms and legs look even thinner. It was, said my mother, “the pills” that had changed her. She was on “the pills” for the rest of her life.
I can’t remember how old I was when I first heard the word “schizophrenia”. Even for my mother, it was a process of gradually piecing things together until the truth, or at least some kind of explanation for Caroline’s symptoms, dawned.
It had started when Caroline had spent a month in Norway with some friends of my parents.
“The family were very nice to me,” she wrote in a letter home, “but Mummy and Daddy I must tell you that I was terribly homesick there.” It was only when my mother showed me her diary, many years later, that I understood what actually happened.
“Caroline,” wrote my mother a few days after Caroline got back, “says everything is her fault and mixes up bombs and security agents and hears children crying in the streets.” Once she was in “the unit”, she thought “the girls… were going to cut her up and make her into sausage meat”.
She had, in other words, developed psychotic symptoms that turned her daily life into something from Hieronymus Bosch.
No wonder my mother wrote, in her notes for a talk she gave many years later, “What does it feel like to care for someone with a mental illness, in our case schizophrenia? My first answer would be that your life is never the same again.”
Christina in 1969 with Caroline, left, Tom and mum, Anne Courtesy Christina Patterson
After Caroline’s breakdown, none of our lives were the same again. The Largactil Caroline was given mostly did control her psychosis, but it made her slow and drowsy and made even basic schoolwork hard.
She struggled to scrape through any exams and had to watch Tom and me scoop straight As. She had to watch us both go off to university after failing her elementary test in typing twice. When she finally got a job, as a typist at Cornhill Insurance, we all went out for a Thai meal. On the day she was sacked for being too slow, my father cried.
‘Very shabby treatment’
It took Caroline 18 months to get another job, this time in a shoe shop. Once again, she was “let go”. Among my mother’s papers, I found a red file labelled “Caroline employment”. It’s jam-packed with applications. Caroline, it’s clear, was willing to do anything.
Six and a half years after she left Cornhill Insurance, she finally got another job, as a part-time cleaner at the University of Surrey. She was told she was too slow and asked to resign. My father wrote a letter to the personnel officer. “We shall go on thinking,” he wrote, “that this was very shabby treatment of a vulnerable member of society.”
Caroline died, of heart failure, in July 2000 at the age of 41. My father died in 2002. My mother died in 2016. My brother died, very suddenly, in 2019. He didn’t have a partner or children, so I was the one to clear his house and go through all the family albums and papers he had stored in his garage.
Those albums and papers tell the story of a family rocked by one person’s mental illness, but also determined to offer that person every possible ounce of care, support – and love. Those were the papers I drew on, together with my memories, to write my family memoir, Outside, the Sky is Blue.
I wanted to show the reality of mental illness, both for those who experience it and for the family members who live with it and whose lives are turned upside down. I wanted to honour my family and I wanted to honour Caroline.
Once she accepted she would not be able to keep a job she had, in many ways, a happy life. She had a wide circle of friends. She had a boyfriend. She volunteered at Oxfam. And for the last three years of her life, she had a tiny housing association flat 10 minutes’ walk from my parents’ house.
Several times a week she went to a community centre run by the National Schizophrenia Fellowship (now called Rethink Mental Illness). It was there, while she was washing up after lunch one day, that she suddenly collapsed and died.
No one can be brave all the time
There were more than 200 people at her funeral. My parents got more than 200 cards. The cards talked about Caroline’s gift for friendship, her kindness and, most of all, her courage. One mentioned “the exceptional cheerfulness and philosophy with which she put up with her ongoing disability”. Caroline was certainly brave, but no one can be brave all the time.
Twenty-three years after Caroline died, I am shocked that so little has changed. Yes, people talk about “mental health” much more, but they generally mean anxiety or stress. They don’t mean schizophrenia, which remains a taboo.
Employers are still reluctant to take on anyone with a history of mental illness. It leaves an ocean of untapped talent. How will we know what people have to offer if we don’t even let them near the door?
That’s why the work of SANE, Rethink and all the charities that campaign to improve the lives of people of mental illness is so vital. No one is just an illness. We are all frail in our different ways.
I’ve had lupus, cancer, twice and have at times experienced suicidal despair. I’m also in love with life. In whatever’s left of mine, I hope to enrich other people’s lives, as Caroline enriched ours.
Outside, the Sky is Blue is published by Tinder Press.
Christina Patterson is a writer and broadcaster. A former columnist at The Independent and Director of the Poetry Society, she writes for The Sunday Times and The Guardian about society, culture, politics, books and the arts.