Some thoughts about living with mental illness and a few books that, in my experience, address the matter well

May is Mental Health Awareness Month, at least in Canada and the US, and this morning I awoke to find an essay in my inbox titled “The Last Great Stigma” by Pernille Yilmam. This Aeon article addresses the workplace discrimination that workers with mental illness experience  claiming that it “would be unthinkable for other health issues,” and asking if it can change. As the piece demonstrates, this issue is widespread and can take many forms. The author explores ways in which misconceptions and concerns might be addressed. For me it is far too late. Next year I will have been out of the workplace for ten years—more than ten years earlier than I ever anticipated—because even if you are open about your diagnosis, a serious breakdown on the job (no matter if dysfunction at the job itself was a significant factor) is something your career might never recover from.

I’ve been thinking about this a lot lately. And about how mental illness has shaped my life—as someone with bipolar, as the parent of an adult child living with serious anxiety and addiction, and as a former professional in the disability and mental health field. Yet, like so much in my many decades on this planet, I still don’t know how to make sense of it all. When I was first diagnosed back in my thirties I read all kinds of books about my condition (against the advice of the psychiatrist I saw just once after discharge who told me not to read anything or go to any support groups), but after a while I moved beyond books. Life was busy. I had two children and, before long, I was a single parent facing major personal changes. By the time I finally sought out peer support, I attended one group and by the next month I was co-facilitating! I ended up finding most of my real support through volunteering and in my professional positions.

Then it was suddenly over. With no closure. The subsequent years have been marked by great trauma, loss, and unexpected adventures. Also, lots of reading and, here and there, a little writing. But, truth be told, mental illness can be very isolating. It skews one’s ability to gauge social interaction—Did I say too much? Too little? Why am I so nervous?—and often makes it seem easier to avoid meeting up with others or trying to cultivate friendships. Alone is safer. And the longer one’s life becomes, the more entangled the varied threads that make us who we are become, and the more difficult it is to trace back through years and attempt to untie knots that have formed and reconnect fibres that have fallen loose along the way.

My first major episode of mania occurred in my mid-thirties. It was not disconnected from other things happening in my life at the time, so it crept up on me, gradually intensifying existing tensions and distorting my sense of reality. I was, by the time I was admitted to hospital, in full-blown psychosis. Oddly, I sensed that what I was experiencing was psychological in nature, but in true manic-depressive style I figured I could ride it out. And, of course, those around you also sense something is wrong but don’t know what to do. From the inside, your thought processes are so accelerated and obsessive that perspective is lost; it becomes a matter of survival and it can get ugly. When it’s over, some say that a kind of amnesia clears your memory, but that’s not exactly true. You are left with fragments, some very vivid, a great deal of shame, and no way of knowing how others saw you when you were at your very worst.

It’s a difficult thing to articulate, but this where we come to books. More than any fictionalized account of madness and psychosis, Hospital by Bengali-Australian writer Sanya Rushdi (translated by Arunava Sinha) manages to recount the experience of psychosis from the inside with a remarkable sense of self-awareness, arising, I can only imagine, from the author’s own multiple experiences with the condition. This critically acclaimed novel captures the strange internal boundaries that the protagonist (also named Sanya) tries to negotiate in a manner that resonated with me. As I noted in my review:

Sanya’s narrative is restrained and oddly lacking in affect, even when she describes her tears and outbursts. She is continually trying to observe herself and logically reason her way through whatever arises. However, her reasoning is often disjointed and confused. She is constantly seeking symbols of significance, spends a lot of time trying to figure out the secrets behind the thoughts and actions of others, questions why certain song lyrics keep coming to mind, and fitfully attempts to draw strength from her faith.

I recognize this well. The thing is, whether one is manic or depressed, psychotic or not, the tendency is to assume that whatever is happening to you is you, not a physical illness that is directly affecting your mood and your perceptions of the world.

When it comes to poetry, it is well-known that many famous poets have, over the years, struggled with mental illness, often writing from within the depths of madness and, sadly, frequently ending their own lives. I am drawn to such poetry but admit to finding much of it painfully difficult to read. Too close, too unfiltered at times, it must be read slowly. And then there is the genius of madness question that comforts some of us and angers others, but in the interest of understanding mental illness I wanted to call attention to a poetry collection I read several years ago that I think of often.

Shahr-E-Jaanaan: The City of the Beloved by Pakistani-American poet, translator and ghazal singer Adeeba Shahid Talukder was a book that came to my attention in the early months of the pandemic, a background that coloured my reading. I was intrigued by this young woman who draws inspiration from the greats of Persian and Urdu poetry and the late Kashmiri-American poet Agha Shahid Ali to explore traditional and contemporary themes alike, from the conflicts between an American raised daughter and her immigrant family to the poignant drama of Laila and Manjoon. Yet, in spite of a clear reference to a hospital in an earlier poem, it was not until I hit the title sequence, that I began to sense something more might be at play. In my review I report that the sequence begins:

At December’s end Benazir died
in a suicide attack.

.                              Men burned

tires, cars, banks,
petrol pumps and factories

Perhaps in grief.

The nights in New York
were clear, cold

and I read Faiz
in a way I never would

again. In Washington Square,
the benches were empty.

What follows is a harrowing account of the speaker’s descent into madness, accompanied in her mania, by God and her poetic saints, culminating eventually in hospitalization and echoing back to the poem I quoted above. It’s devastating, horrifying and strangely familiar, but on my first encounter I did not recognize it for what it really is.

Although I was unaware of Talukder’s own bipolar history when I first read her collection, I did have the feeling that she knew an experience I had also had. An interview with the poet confirmed it, along with her desire to address some of the misunderstanding and stigma she has faced. My response to learning this and a link to said interview can be found in my review of this excellent collection.

Finally, when it comes to mental health memoirs I am perhaps even more cautious than I am about fictional or poetic works. However, within Stephen Johnson’s How Shostakovich Changed My Mind, I found moments that spoke to me so clearly in relation to my own experience of mental illness before and in the long years following diagnosis. That is possibly because it is not your standard mental illness memoir. A blend of musical biography, memoir, psychology and philosophy, this fascinating book-length essay draws its greatest strength from the author’s passionate affection for and deep connection to the music of Dimitri Shostakovich. As I note in my review:

As one might imagine, given the unusual title, How Shostakovich Changed My Mind is an intimate account of the intersection of music with the personal drama, and trauma, of life lived. Johnson draws on literary, philosophical, neurological and psychological resources as he explores the connection between music and the brain, an area of growing interest and investigation, but he anchors his inquiry in the story of Shostakovich’s life and work during some of the most tumultuous events of the twentieth century—a thoroughly fascinating account in its own right—while tracing out his own particular relationship to this music and the role it played, not only in adolescence, but in his own adult challenges with bipolar disorder.

As such, Johnson’s work is not only a powerful exploration of the ability of music to provide expression and meaning in times of joy and sorrow, but a moving personal memoir of how music can serve as a means to navigate madness, especially in those times when, from inside, all one knows is that something is not right, even if one does not know why.

So, three books for Mental Health Awareness Month, or any time, because it is important to continue to work towards increasing understanding and reducing stigma around mental illness year round—and around the world.

Hospital by Sanya Rushdi is translated from the Bengali by Arunava Sinha and published by Giramondo in Australia and Seagull Books everywhere else.

Shahr-E-Jaanaan: The City of the Beloved by Adeeba Shahid Talukder is published by Tupelo Press.

How Shostakovich Changed My Mind by Stephen Johnson is published by Nottinghill Editions in the UK and distributed by NYRB in North America.

The boundary between the psychiatric ward and the real world: Hospital by Sanya Rushdi

But why have we turned to the right? That’s where the psychiatric ward is. Of course, there must be examples in history of those who, in an effort to protect their non-mainstream alternative thinking, pretended to be who they were not in order to shield themselves from politics. This may be a similar arrangement. Even as I’m wondering about this, a wheelchair emerges from somewhere and I am told to sit in it. I refuse, saying I’d rather walk. They say if I don’t sit in it on my own, they will make me. So I sit.

Books and movies about mental illness and psychiatric wards frequently play to either the horror or mystique of madness, while language related to psychiatric conditions—bipolar, psychotic, schizophrenic—is often applied carelessly to describe a range of circumstances that have nothing to do with actual diagnoses. Around the world, the stigma of mental illness is difficult to shake. A heart attack will bring friends and family to your hospital bedside; a serious breakdown can leave you isolated and alone, at home or if you are sick enough, confined to a psychiatric unit. From the outside, a worse fate cannot be imagined but, in reality, once the shock of finding oneself hospitalized subsides, the world behind the locked doors tends to contain a community, at once strange and familiar, within which one can recover. Days pass with a certain routine that gradually returns structure to a life that has been temporarily, or periodically, upended, distorted, weighed down or wired up. Hospital, by Bangladeshi-Australian author Sanya Rushdi, takes you into that environment as seen through the eyes of a patient experiencing psychosis.

Based on real-life events, this debut novel is set in Melbourne, originally written in Bangla and translated by Arunava Sinha. Rushdi’s protagonist, is, like the author, a Muslim woman named Sanya. Years earlier, psychosis interrupted her PhD studies in Psychology. Now, with her third episode pointing to a diagnosis of schizophrenia, she finds herself at odds with her family, a community mental health team, and everyone who seems to be conspiring to force her to comply with the medical model of treatment that she distrusts. She acknowledges her past psychosis, but is unable understand that the curious coincidences, obsessive behaviour, and lurking paranoia might signal that she is sick again. That is the cruel nature of serious mental illness—what one experiences from the inside is increasingly at odds with what others observe from the outside. As her psychosis progresses, the world is simultaneously terrifying and brilliant, but Sanya resists all efforts to encourage her to access care willingly, so ultimately she arrives at the hospital under police escort.

Sanya’s narrative is restrained and oddly lacking in affect, even when she describes her tears and outbursts. She is continually trying to observe herself and logically reason her way through whatever arises. However, her reasoning is often disjointed and confused. She is constantly seeking symbols of significance, spends a lot of time trying to figure out the secrets behind the thoughts and actions of others, questions why certain song lyrics keep coming to mind, and fitfully attempts to draw strength from her faith. Rushdi’s ability to present this state of fractured association and allow her protagonist’s processing to slowly become more coherent as the story progresses is very impressive. Madness has a logic of its own as anyone who has experienced depression, mania or psychosis knows well.

Rushdi captures this shifting state of awareness by combining Sanya’s internal monologue, readings, and diary entries with the use of a dramatic format to capture external dialogue. This allows a record of what is said apart from what Sanya hears or wants to hear. It is also especially effective for reflecting the banter between the residents on the ward. On her first day in the hospital, one of the patients, an older man that Sanya describes as “so handsome,” exposes himself to her as she passes his room. Her self-appointed tour guides try to explain:

Michael: Please don’t be upset. He does these crazy things, but he has a beautiful heart. Give him a day or two and you’ll see what a lovely person he is.

Me: I’ve seen it already.

Glen and Michael laugh.

Glen: Yes, many of the girls are crazy about him.

Me: They need a reason to be here, after all.

Glen and Michael laugh again.

Initially, most of the men Sanya meets seem exceptionally attractive to her—a charged energy between the sexes is not uncommon on the unit. She becomes obsessed with a few of the male patients during her early weeks in the hospital, while other women barely register unless she senses that there might be something between one of them and a man she fancies. At such moments, jealous and conspiratorial thoughts immediately engulf her. At one point, when a doctor suggests she seems to be spending too much time following the male patients around, she becomes defensive. She will leave that session with another drug, lithium, added to her regime as a mood stabilizer and eventually these persistent passions will start to subside.

With her education in psychology and her prior experience with psychosis, Sanya feels she is in a good position to determine whether or not she is sick this time. She blames her family for sending her to the hospital and is resistant to drugs.  She argues that a particular type of language-focused talk therapy would be preferable, but, if she wants to be released, she knows that medication is part of the game. Convinced of the value of language, she pours her thoughts into her diary, filling pages with arguments that are, at the height of her psychosis, bound by incoherent and tenuous  connections. Reasoning and recognition are slow to return.

I read this book very slowly, although it is neither long nor difficult. But as someone who has been hospitalized for manic psychosis, I was impressed and sometimes shaken by Rushdi’s ability to draw on her own experience to craft such an uncanny portrait of psychosis from the inside. Her protagonist appears very logical and rational, and within her own inner construct she is, but from the outside, it is clear to her family and the medical personnel that she is unaware or unwilling to believe that she is ill. She lacks insight. It is almost like being separated from the rest of the world by a one way mirror. On her side, are her fellow patients who form among themselves a community, an island.  She remains convinced that language is the answer to her survival and recovery. And perhaps she has a point there, as Rushdi has demonstrated through her own use of language to create a work that is masterful, moving and tightly controlled.

Hospital by Sanya Rushdi is translated from the Bangla by Aruava Sinha and published by Seagull Books. In Australia, Hospital is published by Giramondo.