The Ghost Garden: Inside the Lives of Schizophrenia's Feared and Forgottenby Published 14 May 2019
|The Ghost Garden: Inside the Lives of Schizophrenia's Feared and Forgotten.pdf|
|Publisher||Random House Canada|
A rare work of narrative non-fiction that illuminates a world most of us try not to see: the daily lives of the severely mentally ill, who are medicated, marginalized, locked away and shunned.
Susan Doherty's groundbreaking book brings us a population of lost souls, ill-served by society, feared, shunted from locked wards to rooming houses to the streets to jail and back again. For the past ten years, some of the people who cycle in and out of the severely ill wards of the Douglas Institute in Montreal, have found a friend in Susan, who volunteers on the ward, and then follows her friends out into the world as they struggle to get through their days.
With their full cooperation, she brings us their stories, which challenge the ways we think about people with mental illness on every page. The spine of the book is the life of Caroline Evans (not her real name), a woman in her early sixties whom Susan has known since she was a bright and sunny school girl. Caroline has given Susan complete access to her medical files and her court records; through her, we experience what living with schizophrenia over time is really like. She has been through it all, including the way the justice system treats the severely mentally ill: at one point, she believed that she could save her roommate from the devil by pouring boiling water into her ear...
Susan interleaves Caroline's story with vignettes about her other friends, human stories that reveal their hopes, their circumstances, their personalities, their humanity. She's found that if she can hang in through the first ten to fifteen minutes of every coffee date with someone in the grip of psychosis, then true communication results. Their "madness" is not otherworldly: instead it tells us something about how they're surviving their lives and what they've been through. The Ghost Garden is not only touching, but carries a cargo of compassion and empathy.
The Ghost Garden: Inside the Lives of Schizophrenia's Feared and Forgotten Reviews
What an extraordinary book. Susan's compassion, generosity and warmth for these tortured souls and their families is evident throughout. The stories are sad, at best, and nightmarish at worst. Yet, Susan's insistence on hope and human touch save the book from utter despair. Very glad I read this.
Life-changing, heart-breaking, important.
The mentally ill are so often seen by the society as walking diagnoses. Doherty's book, the stories of real people behind the diagnosis of schizophrenia, is extremely unusual in its approach: she talks about those diagnoses as if they were human. It doesn't sound like a lot...but it is.
Doherty tells a story of Caroline, a schizophrenic woman, Caroline's family, children, life. The dirty, the raw, the beautiful, the heart-breaking parts are all there, as Doherty does her utmost best to avoid judging those who were, let's say, less kind towards Caroline than others. But that's not all. The author has been volunteering working with the mentally ill since 2009. She met a lot of people, each of whom had – has – a story. All of those lives share one characteristic: loneliness.
Andrea: "Being heard was usually all it took to bring her back to safety." Aleks: "Somerset Maugham once wrote that tolerance is nothing but indifference. Aleks has been tolerated for far too long." Thomas: "I realised every person in that room just wanted to be seen as a human being, that their hearts were no different than any human heart." Sounds so simple. Why isn't it, then?
It's so difficult for me to avoid the phrase "those people", which so neatly divides Us from Them, Normals from Schizos. But most mentally ill people know that they are ill. They, too, have dreams, urges, needs, the biggest of which is the same one that we all share: to love and be loved. "It's a bitter pill to swallow," writes Doherty, "especially for those who had lofty dreams: the pre-med students and engineers, the writers and musicians and athletes who left adolescence with aspirations." Some of us want to look really good, to become a pop star or Instagram influencer, some dream of being able to eat a warm meal every day. The illness robs people of all of those dreams. A lot of people with schizophrenia have nobody to take care of them and nothing left, ending up homeless. Alcohol and drugs are their only escape from their own mind, the gulag in which they are permanently locked, where the "guards" – their own thoughts – are sometimes polite and distant, only to attack violently for no reason the next day.
The topic of medication is approached very carefully as Doherty struggles not to let her personal views affect her writing, which is both warm and impartial, filled with sympathy for the people on both sides of the hospital door. She cites an anecdote about a psychiatrist who used to prescribe antipsychotics until she, too, found herself in the middle of a psychotic episode, and her colleagues prescribed the very same drugs to her. For the first time, the doctor found out how the patients actually feel, both when medicated and not. Mental illness is not a simple cold or a broken leg. You can't see it, touch it, x-ray it. Psychiatrists do not know how or why the meds work (or even whether they do or not). That particular doctor's approach to drugs had changed radically once she had tried her own medicine (sorry). Experiencing a drug is a very different thing from reading about it.
It's not the doctor's fault. It's not even Big Pharma's fault, although the author does remark that Eli Lilly produces both a medication the side effect of which is diabetes AND the insulin that diabetics need, cashing in twice. Psychiatry is in its Bronze Age, and I am being extremely polite here. We don't understand why the right level of antidepressants in the brain is reached within hours, yet they take weeks to work (or not). Antipsychotics, to a large degree, are simply sedatives that allow both the sufferer and their family to wait out the episode in relative safety. But hugs, phone calls, text messages, visits are not only invented, tested, available, even popular among "normal people". The need to be seen and loved unconditionally applies to those with schizophrenia and other mental illnesses as well. Them. Me. You. Us.
The author emphasises many times how difficult it is to be on both sides of this equation. Both those who need care and who provide it often suffer terribly, if in different ways. Caroline's sisters are in terrible pain when they see how their sister's life has unfolded and how much she is forced to rely on kindness of strangers. (Her brothers decide Caroline is not their problem.) Sometimes her mind tells her that she has been sexually abused by more or less everyone she had ever met. Sometimes it just reminds her about her horrible weight gain – side effect of medication; the fact that she is almost always alone; that the voices she hears will go away, but they will always return. Her sisters can clean up the apartment, wash her clothes, but at the end of the day they go home. Caroline remains locked inside her brain. Whether she's physically located in a hospital or in a hotel, her feelings, dreams, needs have no "home" to go to, to escape the broken mind that torments her.
I firmly believe that people with mental illness are the toughest of warriors, because their battle never ends. You can escape an abusive partner, mobbing, etc., no matter how difficult it sometimes is. People whose own mind is their own enemy have nowhere to go. Even if physically they are being taken care of, at the end of the day they will always have to deal with the thoughts, voices, inabilities that so many of us take for granted. It's easy to despise or laugh at someone who believes FBI are watching them through the TV, treat those beliefs as a funny anecdote. It's harder to imagine ourselves in the shoes of Caroline, Aleks, Andrea, and so many others Doherty writes about.
One of the acts of kindness that Doherty provides to people she is writing about is simply her presence and a listening ear. It's not easy, especially when there are twenty or thirty people relying on her, calling at the strangest times of day or night. If there were more people like her, the world would be a better place. But the world is what it is, and people are who they are, both those whose biggest problem is what to wear tomorrow and those who are being watched by FBI through their television sets. We are all human. We share similar struggles and needs. Unfortunately, unconditional love, hugs, kindness, even basic politeness are not available from pharmacies.
A heartbreaking, closeup look at the, at times bleak, realities of living with mental health problems in general and schizophrenia particular.
Doherty tells the story of Caroline, a woman now in het sixties, who lived a life of severe mental health problems. Provided access to complete medical records and with full cooperation from Caroline and her sisters, Doherty's book gives us a rare and almost uncomfortably personal insight into a life with schizophrenia.
It's emotional and tough read. It's hard to imagine having the strength to deal with a life like Caroline's. Doherty does an amazing job of telling it us straight, from Caroline's, as well as from her sisters' perspective. There's much more to this book though which i find hard to put in words. The review by Bjorn, down here below on Goodreads, does a much better job than i ever could. Doherty will definitely leave you mulling things over for a while.
I read this book in one sitting, which I rarely do. Aside from the fact that it's compelling, gripping and absolutely 'unputdownable', it also stirred emotions that have stayed with me long after I finished it. In both my work and my personal life, I spend a lot of time with people with severe mental health challenges; Susan's perspective has made me look beyond their illnesses to their "selves". I also applaud the Evans family for their courage in telling their story. This is a Tour de Force, do not miss it.
I didn't set out to do this, but I have inadvertently created a forum that allowed the psychologically afflicted, medicated or self-medicated, the walking wounded, to voice their truths. Those who are ignored and stepped around on the streets, the homeless who cycle in and out of wards and through rooming houses, are hardly seen as human, and are left to wander in a ghost garden – an interior haven where emotional pain can be suppressed.
In 2009, after author Susan Doherty spent months researching the history of mental illness treatment in the archives of Montreal's Douglas Institute, she decided to give back to the facility by volunteering her time. Doherty assumed she would be given some clerical duties and was surprised when she was asked to simply spend time with one of the residents, a woman with schizophrenia whom Doherty calls “Camilla” (all of the patients and their families in The Ghost Garden have had their names changed for privacy). Doherty writes that she and Camilla became friends that day, and in the ten years since, the author has become friends with many other of the Douglas Institute's severely mentally ill patients; taking their calls at all hours of the day and night; keeping in touch with those who return to the community; giving physical human contact to the feared and marginalised – many of whom with no one else who will take those calls or hold their hands. Meanwhile, a woman that the author grew up with contacted Doherty and, after explaining that her own sister has struggled with schizophrenia for over thirty years, offered the author access to “Caroline's” medical files, interviews with the family, and time with Caroline herself in order to trace one person's entire history of the disease's onset, efforts at management, its effects on social and domestic relationships, etc. The book that resulted is mainly Caroline's story – and it is thorough and honest and affecting – interspersed with what Doherty calls eighteen “vignettes”: brief sketches of some of the other troubled friends she has made in the past decade of her volunteer work. This book is kind of amazing – forcing us to look closely at the kind of people that we usually avert our eyes from; forcing us to recognise the people behind the illness. There's nothing prettified in this narrative – there are body fluids and violence and families pushed to the brink – but it's also not a gratuitous freak show: schizophrenia is an aspect of the human story and Doherty is simply asking us to recognise that fact. Amazing. (Note: I read an ARC and passages quoted may not be in their final forms.)
Psychosis does not discriminate. The worldwide prevalence of schizophrenia is one percent, across all nationalities, professions, income brackets. Schizophrenia is not the domain of the needy, neglected poor, the marginalized lower classes, but its sufferers can quickly descend to rungs reserved for the downgraded.
I don't want to go over all of Caroline's story, but I will note that she was from a well off family in Montreal's Westmount neighbourhood, one of ten siblings born to a respected doctor and his homemaking wife. When she began to exhibit signs of mental illness, Caroline's parents reacted with shame and denial (her father's sister had been institutionalised, but neither that fact nor his medical expertise garnered Caroline any understanding from him), and ultimately, Caroline became so abusive and embarrassing that she drove away all of her family except for a couple of sisters. Throughout all of Caroline's story (and the vignettes) Doherty is never judgmental about how families deal with a mentally ill member; always stressing that schizophrenia is a series of never-ending and all-consuming tidal waves that some people, understandably, eventually need to shield themselves from. There are stories of parents who cut off contact with their schizophrenic children, parents desperately searching for the schizophrenic children who cut them off, and stories of those who have been left with no one. Caroline herself has a huge heart and a desire to care for everyone around her, but when she's suffering a psychotic episode, she hurls accusations of neglect and imagined sexual abuse at family members – which has left her isolated from everyone she wants to pour her love into. The book's title comes from one of Doherty's friends, Aleks, who is essentially alone in the world but who often reports that he has spent the night with his girlfriend, Jennifer Love Hewitt. When Doherty teasingly asked Aleks where the two of them meet, he replied, “Susie, I met her in the Ghost Garden. It's where I meet all the souls of people I love.”
I had to marvel. Aleks had just given me another gift: access to the hidden realms of mental illness. With that gentle correction, he'd shown me that a place of comfort exists for many who suffer from schizophrenia, an alternate world as real as Dorothy's Oz. So often we see the severely mentally ill as less than fully formed human beings, as ghosts of their “normal” selves. As ghosts, they can appear to be inanimate, unreachable, and frightening, but they, like all of us, tend an interior garden that is lushly alive.
With the knowledge that Doherty has gleaned from her encounters with Caroline and others who are afflicted with schizophrenia, she has come to some (perhaps) controversial opinions about overmedicating the disorder. Caroline has never found a perfect pharmaceutical cocktail – and the brain-numbing side-effects of what she has been prescribed prompted every one of her relapses when she has decided to stop her meds – and as Doherty sees it, the main goal of an institution at the moment of admitting someone who is displaying a violent psychotic break is to immediately subdue and sedate to prevent harm to the self and others. Although Caroline has admittedly had many caring and hands-on teams working with her in institutions over the years, Doherty notes the ineffectiveness of the drugs to keep her safe and stable after her eventual release into the community. Doherty takes a couple of swipes at “Big Pharma” (specifically calling out one company that markets both an antipsychotic and a drug to manage the diabetes that that antipsychotic causes), and quotes one of Caroline's sons when he recalls his disbelief that Caroline, in a diminished mental state, was ever able to consent to shock therapy, and ultimately, Doherty concludes that even today, not enough is known about schizophrenia or how to control it (and in the case of creative geniuses, questions the necessity of suppressing it).
A crisis reveals the mind's need to fix something that has been damaged. Psychosis is a sign of that need for repair, just as a fractured bone can be a signal of insufficient calcium. Without a psychotic break, there is no indication of the problem, and so no opportunity to address the issue. But when the breakdown is treated only with medication, the person suffering has no chance to dig into what's going wrong.
(Despite calling for alternatives, Doherty does ultimately conclude, “Clearly there are times when the drugs are beneficial.”) At the margins of every one of these stories is Doherty herself: someone who was initially scared to death to be asked to visit a ward for the severely mentally ill; someone who eventually befriended, emotionally supported, and held the hands of suffering humans who had no one else. I find that to be an impressive and inspirational transformation, and the book she made out of this experience has educated and changed me. Kind of amazing. I'll end on a favourite quote (attributed to the therapist of a schizophrenic's parents) that I couldn't fit in anywhere:
Living with a child with schizophrenia who isn't capable of accepting treatment is like eating a hippopotamus. The solution lies in the number of people at the table willing to take one bite at a time.