Science  Write  Now

The circular movement of Bird Box, a Netflix Original based on the novel of the same name by Josh Malerman, begins with the protagonists’ final journey along a river to find a place of refuge during an apocalypse. Reversing into the pre-apocalyptic past, the movie shows how society broke down before cycling back to the present. A group of survivors has banded together in a house. The action moves between extended moments in this ‘present’ and the future boat journey the remaining survivors take to what they hope is a safe colony. In the present, the group battles against the outside threat until it eventually breaches the walls, propelling Malorie’s family to search for new dwellings.

An ominous, flickering disruption of the surroundings is how the threat is visually represented. People must avoid looking at these creatures or face certain death. Seeing the Bird Box creatures compels people to kill themselves. Shortly after being introduced to Malorie’s sister when the violence erupts, we witness the effect seeing them has on her. While driving away from an area overrun with infected people, a pregnant Malorie in the passenger seat, she suddenly speeds up and drives the car wildly until it overturns. On getting out of the vehicle, she walks straight into the path of a moving bus.

Looking away is a survival mechanism in this dystopic world.

Before I went to see Never Look Away at the Sydney Film Festival in 2019, I wasn’t anticipating that the theme of psychosocial disability would subtend this movie in nuanced ways. Never Look Away follows the life of a German artist who escapes East Berlin just before the Berlin Wall is built. His aunt is murdered in a Nazi gas chamber, among those people doctors deemed to be unfit for procreation and expendable because of psychosocial, physical or intellectual disability; about two hundred thousand people were killed in pursuit of this eugenics agenda during World War II.

This version of events strays somewhat from the early life of Gerhard Richter, which inspired the film. His aunt, Marianne Schönfelder, was institutionalised after being diagnosed with schizophrenia and forcibly sterilised. In 1945 she became a victim of the decentralised patient killing campaign Aktion Brandt, which used methods including drug overdoses and deliberate starvation.

During a scene that frames the movie’s conceit, Elisabeth says to her nephew: ‘Don’t look away. Never look away, Kurt. Everything that’s true is beautiful.’ Hence, Never Look Away’s English title. Kurt holds to her advice, giving it expression through his painting.

After experiencing my first psychotic episode at the age of 19 my psychiatrist prescribed a dose of an antipsychotic medication, risperidone, requiring him to seek prior Pharmaceutical Benefits Scheme approval citing schizophrenia as the medical condition. Even though he never gave me this diagnosis, I’ve been formally initiated into its orbit. When the word schizophrenia slipped out of my mouth during an unrelated hospital admission, the alarm in the nurse’s reaction warned me against repeating the encounter. Yet even confessing to the use of antipsychotics, and so implicitly to a condition on the schizophrenia spectrum, keys to stigmatising cultural beliefs.

I had a pain in my heart. Although it was located somewhere on the left-hand side of my chest, I enjoyed the pathos surrounding the idea of a heart pain. The pain became quite intense at times. I ignored it, assuming it was nothing diagnosable. Following some weeks of this sensation I consulted a GP at the urging of my mother and friends. I chose to be truthful in answer to his question about medications …

His face twitched. The atmosphere thickened. He asked how many doctors I’d seen about the ‘pain’. When I said he was the only one, his look was disbelieving. I visualised myself doctor-shopping, wandering the streets from practice to practice, desperate to be cured of an imagined crisis.

Doctor: I suspect it’s just anxiety.

Patient: I’ve never had anxiety.

Doctor: We’ll do the tests, don’t worry.

His tone implied there was no need for testing. He was going through the motions to placate a neurotic patient. I was angry, disappointed, brimming with micro-counteragressions that probably confirmed his suspicions. I didn’t use the cardiology referral because I dreaded being subjected to more of the same. The feeling evoked by his accusation outlived the pain in my heart. Heart attack symptoms are often linked to anxiety. But this doctor made a snap judgment based on the medication I named, with no further enquiry. His dismissive approach to anxiety was also concerning.

Around 2012 I told my psychiatrist I felt I was receiving messages through social media posts and images. We sat in silence for a few moments before he gave an unexpected reply: Well, in a way, you are receiving messages from social media. His response had a profound effect on how I decided to live through, and have come to understand, my psychosis. Most psychiatrists would assess the happenings I described to be purely delusions. My psychiatrist made room for a different way of thinking about them. While I continue to talk about ‘my psychosis’ sporadically, I now prefer to describe what has happened to me in cycles since my first university year as ‘unusual experiences’.

Early in my interaction with mental health services I acted consistent with the understanding that my ‘delusions’ amounted to dangerous fictions I was obliged to counter in order to reconnect to reality. I took (and continue to take) medication. For me, this approach numbs and deadens sensation and ability. It has also brought some relief. Another strategy I used to deal with what I named ‘noisy thoughts’ was an attempt to train them away, because they persisted through the medication. Over a period of about six months after being diagnosed with schizoaffective disorder, I practised daily ‘thinking against’ these thoughts.

In one sense, then, I looked away.

I wonder about differences in the trajectory of my madness had I been guided by someone who encouraged me to look at, and engage with, my experiences.

On her site The blog that shouldn’t be written (2019) Indigo Daya has outlined a visit from a mental health worker with lived experience who gave her the strength to keep going at a time when she was working on a suicide plan. Together they explored creative ways of mapping and engaging with different parts of her, a process that helped her to resist the tormenting voices she was hearing. This took place while she was admitted to a psychiatric ward.

Some of my unusual experiences have been painful. Noisy thoughts telling me I’m worthless, ugly or incompetent. Internet images jolting fear through my body, some of which continue to summon a visceral reaction when I remember them.

The river journey in Bird Box presents Malorie with an excruciating choice. Travelling in the boat with her children, Boy and Girl, she says that one of them must do a vital job when they reach the rapids: somebody must look to help her steer. All of them know what taking off their blindfold means. When Girl offers to look for them, Malorie makes a bold decision. Nobody will look. They’ll face the rapids without their eyes to guide them.

After the boat capsizes, they make their way to shore and start navigating the woods surrounding the colony. It’s revealed that the creatures can assume the voices of people you love, voices recalling the noisy thoughts of my madness. Malorie falls down a steep slope and is separated from the children. When Boy and Girl hear what sounds like Malorie’s voice urging them to open their eyes, they call her name, unsure whether it’s safe to take off their blindfolds. They ring the bells she gave them so she can always find them. Malorie tells them to keep their blindfolds on, that the voices aren’t her.

This scene said something specific and comforting to me, against the historical backdrop of frightening aspects of my unusual experiences:

It’s okay to turn away from distressing things when they’re too much to bear. To turn them off, walk away. In fact, this movement away from the action might save your life.

‘Phenomenophilia’ is a concept Rei Terada develops in Looking Away: Phenomenality and Dissatisfaction, Kant to Adorno (2009), referring to brief acts of looking at ephemeral phenomena, such as shadows, double visions and optical illusions—called ‘spectra’ by Samuel Taylor Coleridge. Immersing oneself in this world of ‘mere appearance’ may be contrasted to how we perceive facts, which compel us to accept their reality. Experiencing spectra involves engaging with images that ‘ask for nothing’. You dip in and out of fleeting glimpses of spectra; knowing they’re chimeric, you can choose whether to indulge them. The counterpoint to spectra are spectres: obsessional images that plague the mind.

The deluded, writes Terada, are those who believe in spectra, who equate them with the given world and act on this mistaken belief; engaging with spectra while aware of their illusory nature, on the other hand, happens in a realm of experimentation that anticipates art. These explanations imply a sharp distinction between madness and delusion versus art and creativity.

Although turning to the Diagnostic and Statistical Manual of Mental Disorders (DSM-5-TR, 2022), the delusions and hallucinations psychiatry ascribes to people diagnosed with schizophrenia spectrum conditions appear to share more in common with spectres than spectra: delusions are ‘fixed beliefs that are not amenable to change in light of conflicting evidence’; hallucinations are ‘perception-like experiences that occur without an external stimulus … with the full force and impact of normal perceptions, … not under voluntary control.’ These definitions align with the notion of spectres, put forward by Terada, as involuntary and unshakeable.

Living through unusual experiences in my late teens, twenties and later resurgences has often been challenging. With hindsight, these episodes have also brought illuminating moments that compelled me to submit to them instead of denying them agency. Moments alternatingly beautiful and terrifying, frequently confounding, sometimes soothing.

There have been times when my unusual experiences connected to digital landscapes, including online publications, social media and emails, have grown overwhelming—when I’ve been unable to get beyond a sense of being intimidated by online discourse and semiosis. A physical feeling of fear. When this feeling has sharpened to the point of fierce psychic pain, relief has only come by disconnecting completely: deactivating the account, unsubscribing from the email list. When I permanently deleted my first Facebook account the peace and calm that coursed through me after just a week was stunning in its precision, rendering palpable the materiality of online communications. 

Initially I continued to sense a threat (whether real or imagined), even though I wasn’t looking.

For the doctor, psychiatrist and healer Lewis Mehl-Madrona, responses to psychosis and mental distress are informed by Native American cultures and longstanding healing traditions. In Healing the Mind Through the Power of Story: The Promise of Narrative Psychiatry (2010) he advocates for clinical approaches based on the idea that ‘many of the truths we hold about ourselves are merely stories, learned through our experiences in a social network, and changeable.’ Social intervention is privileged over chemical intervention. 

Telling stories to unfold meanings that crowd out distress and build upon beneficial aspects of a person’s experience: Mehl-Madrona suggests that narrative building in this way is possible in partnership with a clinician, or as an act of community. Working with their story, including psychotic phenomena, through deep listening—rather than imposing a story upon them—is crucial. The narratives ultimately created, however, should quell the terror of frightening parts.

Exploring, lingering in, making meaning out of unique individual experiences is a self-consciously creative practice that, as Mehl-Madrona writes, is ‘more compatible with the evolving narrative movement and with indigenous knowledge systems.’ The emphasis is on regenerating people’s capacity to navigate and narrate their own life story. 

In Living While Black: The essential guide to overcoming racial trauma (2021) Guilaine Kinouani speaks of ‘emerging from the silence’ as central to the healing journeys of people who have experienced racial trauma, through ‘conscientisation’, a process whereby an individual or group becomes critically aware of oppressive forces that act on them and develops strategies to counter them. A movement from individual to collective distress, to collective political demands, is positioned by Dian Million within practices of Indigenous self-determination grounded in personal narratives, or the felt experience, of Indigenous women as community knowledge (Therapeutic Nations: Healing in an Age of Indigenous Human Rights, 2013).

Treating distressing or unusual experiences as real within a restorying process or contextualising them in socio-political relations—approaches used in narrative psychiatry, narrative therapy and peer work—envisages the crisscrossing of boundaries between truth/delusion, fact/story, creativity/madness. 

Spectres turning into spectra? 

Speaking one’s truth is often central to healing. Yet this can be a fraught path for people whose perspectives are prejudged as pathological or deviant. For some, surviving, or thriving, might only be possible by resisting attempts to be restoried. Dwelling in thoughts, feelings and attitudes considered abnormal, as an act of self-care and self-expression, can become a means of speaking—and looking—back.

Tracy Westerman, a psychologist who is a Nyamal woman, recently published research emphasising the difference between ‘delusions’ and ‘culturally appropriate beliefs’ for Aboriginal people (Clinical Psychologist, 2021). Comparing clinically recognised disorders with Aboriginal cultural practices in Western Australia, she calls for clinical responses to be guided by community norms. 

What would it mean to take seriously the assertion of a person diagnosed with schizophrenia that they’re a shape shifter having a spiritual experience? To bridge the divide between psychiatry’s interpretation that this person is having delusions or hallucinations and the understanding of some cultures that they’re having visions? To consider cultural contexts but also tailor a response to an individual’s experience on their own terms?

While reducing my medication dosage in the wake of my early encounter with unusual experiences, I believed I was communicating with various people using my mind for some time. I felt the communications tugging in my body. Because my psychiatrist viewed this as a relapse, the dose was increased before I could start tapering off again. These experiences were translated into further evidence of illness, requiring a pharmacological response. But they were not painful or frightening, except that I’d been socialised to perceive them as abnormal. I stopped taking risperidone five years after first ingesting it and remained drug-free for nine years. I haven’t seen a psychiatrist for around six years.

Biomedical psychiatry’s tendency to situate psychosis and unusual experiences in the realm of the spectre can have harmful impacts on people’s bodies and minds through facilitating confinement in institutions, chemical straitjackets and narratives of pain. Communities and approaches that assist people to mould pathologised perceptions into new spaces, or live with them in ways that defy medical classifications have, however, been slowly growing. This transformation dovetails with the radical reimagining of forms of care proposed by Vanamali Hermans writing in Overland in 2020, supported by an awareness of the political agendas of health institutions and their historical and ongoing complicity with colonial, carceral and eugenic practices.

Letting people tell, rather than telling them.