Grieving for an imaginary baby – the loneliness of psychosis

@MiserySquid’s #MadCovidDiaries 23.01.2021

                     

Trigger warning: psychosis, suicidal ideation, self-injury, miscarriage, infanticide.

I was 21 years old when I had my first psychosis. I was picked up by the police in the middle of the night, wandering the streets barefoot, clicking and whistling, tapping and clapping imaginary codes at the cameras in the streetlights. I sat crayoning wedding invitations from psychiatric hospital, delighted, euphoric, using clumsy sign language to talk to celebrities in the television, planning a wedding to a friend that had casually kissed me on a night out. It took a year for the codes to pass, I was not getting married, I had a lifelong illness that every few years would see me stumbling into alternate realities, misreading the map of my life, losing jobs, friends, partners as I chased messages into locked, neon lit rooms.

Before this I thought a psychosis and a psychopath were the same. These words made me think of Hollywood serial killer clichés- pinboards covered in menacing hand scrawled notes and torn newspaper clippings connected by a web of taut red wool. A ‘psycho’ was a casual slur for erratic behaviour. I learned in hand-outs and support groups about delusions and ideas of reference. I learned that for some people, reality is a term that flexes, there are layers for us that other people don’t see. Messages and codes and metaphors, a thin film that sits across day-to-day life. I press down the layers at the edges, slowly pushing out these extra meanings, like covering a schoolbook in sticky back plastic, ease out the air bubbles so reality lies transparent against the surface.

*

I’m so tired and the A&E is so noisy, there is a fraying at the edges, a beeping machine distracts me. I haven’t slept in days. Through a curtain I can hear a baby crying. A nurse walks past pushing a monitor, beige wires tangle around the wheels, plastic jellyfish tendrils.

‘Whose is that baby? Can you hear that?’ I ask the passing nurse.

‘Sorry?’ he says, confused.

‘The baby, whose is the baby?’

‘I think they’re watching a video’ he shrugs and continues on, the wires dragging along the floor behind him.

I sit on the edge of the high metal bed, listening to the ragged crying and my quickening heartbeat. The new-born howling seems to get louder, punctuated by the incessant high-pitched beeping. Something about this crying causes a sharp-edged panic in my chest. Why are they leaving this baby to cry? The desperation of its repetitive shrieks feels terrifying. The messages are confusing. I pace up and down the corridor, trying to find the source of the crying.

A nurse comes out from behind the desk.

‘Please sit back in your bay,’ she says.

‘I haven’t had a baby’ I say to the nurse, wide eyed,

‘Please sit back in your bay’, she repeats walking with me down the windowless corridor, past a woman curled up on a bed, the curtain only partially pulled across. I have to trust the project, there is no baby, I need to sleep.

*

I’m in the shared garden of our flat, overlooked by the block behind, a large man is leaning out of his window smoking a cigarette in the spring morning. I spent the last two nights cataloguing codes, making piles of belongings by their colour, writing tiny pencil notes in paperback books to mark the subtext, the secret messages that the project has left for me. I can’t work out what the point is, what the crux of this unravelling mystery is. My tablets are sugar pills, I know I don’t need them. The power of placebo. There’s a gnawing anxious dread that has sat across my stomach for days now, I can’t eat. What are they trying to tell me? What would be too difficult to know?

What would be the worst-case scenario? I remember a story an old acquaintance told me about a toddler who drowned in a pond, it was a boy and he drowned. I think I’m going to be sick. What have I done? I never wanted a boy, I have a flash back, it feels like a memory. I drowned him in the bath, I remember, I left him unattended and when I came back, he was dead. I remember an old episode of Black Mirror- a woman is trapped in a virtual reality as punishment for killing a child. They’ve been filming me for years; spectating my anguish as reality television.  My punishment is to continually relive the memory of my baby, realise my terrible crime, then they call Derren Brown to hypnotise me to forget, and it all starts over again. I fall on the grass and begin to scream. It’s an hour before the crisis team arrive, I’ve torn up handfuls of earth, pulled at my hair, there are angry red bite marks along both my arms. When the crisis team arrive, they approach me warily holding out medication at arms-length, gently repeating my name. I lay in a ball on the grass sobbing, exhausted. They put the small blue pills in my hand, and I wipe the snot and tears from my face and push the tablets into my mouth one after the other, hollowed out by grief and ready to forget again.

*

I’ve been in the hospital for three months now, we sit in the side room for my one to one. My allocated staff member today is a student nurse called Emily. She has her hair tied back; her glasses sit on top of her mask. The afternoon sun casts a rich light across the colourful padded chairs. Today, I’m nearly too sad to speak.

‘I think I had a baby who died’ I say, staring at the floor; tears spill down my face, I feel them slide down my pale cheeks one by one. I wait for her to ‘thought challenge’, to tell me what many other family members, professionals, and friends have tried to tell me over the past weeks. That I’m not a mother and I have no children, alive or dead. She reaches for the box of tissues.

‘I imagine that must be very difficult’ she says,

I nod

‘I don’t know what’s real’ I say quietly.

She moves forward in her chair, adjusts her posture to sit upright, looking as if she’s deciding whether to say something.

‘I can see that what you’re experiencing is real for you,’ she says so gently. I raise my head to look at her. There’s such warmth and compassion in her eyes. We sit in silence for a while as I try to concentrate on my breathing. There is a wailing in me, that pulls at the edges and threatens to overwhelm me. On bad days the staff have to intervene to stop me banging my head against floors and walls, pulling at cables, desperate for an ending. I try to gain control of the well of grief, focusing on my breath, the rising and falling of my chest.

‘I feel like I had a baby who died, but no one believes me’ I start to cry again, balling up tissues in my hands, shoulders hunched forwards.

The nurse pauses for a minute. She moves the wastepaper basket towards me. I drop in the used tissues and pull fresh ones from the box slowly, one after the other. She sits in silence. She seems to be thinking about what she’s going to say,

‘They say we should be careful what we tell patients, but I want to share this with you. I have a son, but before he was born, I had a miscarriage.’ I look up at her and there is a rawness to her, a vulnerability I haven’t seen before. I wait for her to continue.   

‘It was devasting. No one really wanted to talk about it. I wasn’t very far along, but to me that was a baby. And we lost her.’ She turns her face away, towards the window. We sit in silence, both looking at the sun on the long grass, the white daisies scattered across the green. ‘I had to find a way to mark the fact she had died. It helped me, to say goodbye to her.’ I sit staring at her for a moment. Suddenly she is more than her badge, she’s a young woman, who has experienced a terrible loss. Aside from the codes and the messages and the cameras, this feels real.

‘Perhaps that’s something that might be helpful, to find a way to mark what’s happened, and to properly say goodbye. We could do that together if you wanted to.’ She says gently, turning to face me again. 

‘I’m sorry you lost your baby.’ I say, holding the crumpled tissues in my hands, seeing the sadness in her eyes. She pauses for a moment and then looks me in the eyes and says,

‘I’m sorry you lost yours.’ This is the first time anyone has acknowledged my loss instead of my illness. I break down and sob, desperate with loss. She puts her hand gently on my arm as I cry and sits with me until the wave of grief passes.  

*

The worst thing for me, is not the horrors of the delusions, the terrifying worst-case scenarios, dead children and lost limbs and acid attacks, that I’m dead, that I’m in a coma, in a virtual reality dimension. The worst thing is not the nightmarish hours that grip and twist, the waves of confusion that follow, the lack of stability, the isolation, the desperation of friends and family watching you travel between parallel universes of chaos and despair, shrieking at the sky, inconsolable, disbelieving, accusing. The worst thing for me, about having long term psychosis is a more complicated and deeper grief. When you’ve taken the tablets, when you’re back at home, in the weeks and months that follow an acute episode, when the volume of the codes reduces so you can follow a conversation. That grief is for my sanity, for the fact I will never 100% be able to trust my own judgement. Once you’ve had a psychosis, once you’ve lost your mind, you can never really trust yourself again. I live with a level of unknowing, that at times feels intolerable.  Regularly at the moment, I’m not sure, what my own name is, what year it is, if my friends are actors paid to talk to me; I don’t know which experiences are mine, where I fit, what horrors exactly I have lived through. It’s impossible to describe what it feels like to not be able to trust your own memory. I get lost weeping, remembering things that never happened. There are no support groups for imaginary delusional grief, I carry that alone, and it is so lonely. I rely on other people to simply and without shame, without pity, answer questions about reality again and again – what year is it, how did we meet and most often at the moment – ‘No Jen, you have never had any children’.

Even if it’s a one-off psychosis you’re forever a discredited witness. I went mad. Society labels me unstable, unreliable and not to be trusted. I’m a woman who doesn’t know what’s real. At any point someone can call my judgement into question, invalidating me. This fear of being called out made me smaller for years, afraid to speak up, folded in on myself, frightened to say how I felt, knowing how easily I could be dismissed.

What keeps me tethered to reality at the moment is the crisis line who pick up the phone and talk me through why stepping in front of a car is not the way to end the filming project. My care-coordinator who calls me up every Wednesday morning to take long deep breaths with me down the phone, to settle me back in my own skin, in the sensations I can see and feel, the sound of next door’s radio through the wall, the feel of the fabric of the sofa under my legs. What keeps me anchored day to day is the kindness in my friend’s voice as I sob down the phone. They gently repeat the facts, a memory only we would know, the night we drove to the seaside wearing our swimming costumes under our clothes, delighted to have arrived just as the sun was setting at the edge of the horizon, the feel of surprising wide patches of water that were still warm from the heat of the August afternoon. I write these out in detail as evidence. My friends patiently and without judgement, talk with me late into the night, gently laying out private memories that stand strong as tender landmarks of how we know each other, using our shared histories as breadcrumbs to guide me back to them again and again.

Each day I try to remind myself that the intensity of this episode will pass and with time, the psychosis will tuck itself under layers of medication and the emotions will lessen. I’m holding on that at some point the cameras will be turned off, the curfews will be lifted, and we’ll drive down to the sea, singing along to the radio with no masks, to music with no secret messages and we’ll go night swimming again. I’ll float under the wideness of an enormous black sky, looking up at the stars, held by an ocean still warm from the heat of a burning star 93 million miles away, and it won’t matter what’s real and what’s not real. That will feel real enough.  

This work is licensed under a Creative Commons Attribution-NonCommercial-NoDerivatives 4.0 International License. We ask that you seek our permission before you use any of our material – this includes researchers who want to harvest our data for analysis!