@MiserySquid’s #MadCovidDiaries 09.12.2020
Trigger warning: contains references to self-injury and ligature, detainment and coercive practice.
There is a purple handprint on my left shoulder blade. I twist my neck in the mirror to get a good look at it. Four clear fingers, a thumb and a round violet palm mark. It’s possible that it is paint, or pen. I’ve been drawing on my face and body in felt tip, codes and symbols, wide illuminati eyes with long lashes on my forearms and ankles, tiger stripes across my cheeks, hearts and peace signs, dots and dashes, invented hieroglyphics. Sometimes I use pens and sometimes I take the chalk from the pool table in the television lounge, rub my forefinger into the indent of the pale blue cube and smear it across my face, a long straight line of war paint down the length of my nose. There are no mirrors in the communal areas of the ward. Often, when I go back to my room at night, I’m surprised by the carnival face that looks back in the mirror.
Pulling my pyjama top over my head, I lick my finger and rub at the handprint. Pressing the skin makes it fade, then it blossoms red where I’ve poked it. Like a steamed-up mirror in a horror film with anonymous writing on; someone has pressed themselves against me with such force, my flesh remembers their shape, but I don’t. I close my eyes and think about the chaos of yesterday’s incident. I pushed past the staff member holding the door open and she ran after me, as her hand gripped my shoulder I twisted out of her reach. I think this is her handprint but I’m not sure. It took five staff to bring me back to the ward.
*
It’s a patient’s birthday next week. She spent her last birthday detained in an acute ward. A few of us decide to buy some presents off Amazon. After she takes her night meds, we casually say goodnight and watch eagerly as she disappears down the corridor to her room. Once we’re certain she’s gone, we excitedly scroll through Amazon, selecting hair accessories and nail polishes, staying up until the main lights are turned off and the nurses doing room checks walk by with torches. We order a pageant style sash that says ‘BIRTHDAY GIRL’ on it in bold metallic writing. Two days later the Health Care Assistant brings over a slim package and we ask to go to a side room to open it up, to keep it a surprise. Ripping open the thin cardboard, the shiny sash lies at the bottom of the box, wrapped in clear cellophane. It’s silver and pink and sparkly – she will love it. The Health Care Assistant who gave us the package, smiles widely,
‘How thoughtful’ she says and asks to look at the sash. She coos and admires it with a level of enthusiasm that doesn’t feel proportionate to the flimsy piece of silver she’s holding. Suddenly her expression changes,
‘Ahhh’ the Health Care Assistant says, ‘I’m not sure about this’.
There’s a single safety pin tucked at the bottom of the plastic wrapper. It’s used to pin the two ends of the sash together.
‘I don’t think we can have safety pins on the ward’. She says ‘safety pins’ plural, as if we’ve purchased a surplus of safety pins, a pile of pointy silver metal to poke and prod at ourselves or each other. We all stand around in a circle in the side room, looking at the tiny silver safety pin. No one says anything for a moment,
‘Can you check?’ someone asks. The Health Care Assistant has arranged her face to an expression I’m familiar with from the staff here, it’s a ‘solution focused, delivering conflict in a manageable fashion’ facial expression.
‘I will check but, I’m sorry girls, I don’t think this will be allowed’. She’s focusing on stating what she is able to do, whilst also managing expectations of difficult outcomes. She pauses, ‘perhaps you could use Sellotape to fasten it?’ We’re not allowed access to Sellotape unattended; you have to ask the activities coordinator for it. She doesn’t work on Tuesday or Sundays. If you need some, she asks how much you want, then disappears through the door to the staff area and after some time comes back with single pieces stuck to her fingertips. Once she did bring the whole roll out. I watched fixated, as she pulled extravagantly at it, stretching out long shiny strips. I remember enjoying the high-pitched tearing noise it made as it came free from the roll.
*
I sit on top of my wardrobe as two members of staff go through my belongings, my shoelaces are removed, handbags, two hooded jumpers that have cords round the neck. The Health Care Assistant opens the second drawer of my desk and holds up a bra, pulling at the elastic straps. She turns to place it with the pile of things on my bed, then pauses to look up at me,
‘Please don’t take my underwear’ I say. She looks conflicted.
‘Do you think you’ll use it to hurt yourself?’
‘No,’ I start to cry, ‘Please don’t take my underwear’.
She says, ‘I won’t today, but if you use it to hurt yourself, we’ll have to think again’. She folds the bra and puts it back in the drawer and places the pile of belongings on my bed into a plastic bag. I cry quietly pulling my knees up, linking my arms underneath as she leaves the room. The next morning when I get dressed, I think of her holding up my bra, inspecting it for intent, and I feel a hot flush of shame.
*
On escorted leave we walk past the building I used to have senior managers meetings in, as part of my role as a Strategic Expert by Experience for the Trust. I was appointed for a two-year term. After six months I became unwell and ended up detained on the same site that I used to discuss caseloads and pathways of care in large, brightly lit rooms where what was said was deemed so important someone typed minutes to send around via email afterwards. It was a reimbursed role, so I have no sick pay, no HR support and no income. I haven’t heard from my colleagues. I dread bumping into someone from my old life while I’m out on escorted leave. I have bruises on my face where I hit my head repeatedly against a desk. I cut my own hair with a pair of nail scissors. I’ve stopped changing my clothes. I wonder if anyone would recognise me.
At breakfast, over plastic bowls of Rice Crispies, a patient whispers to me that there’s a vending machine in the main hospital building. She shares conspiratorially that it has Nik-Naks and fizzy drinks. I don’t tell her that I’ve been there in a different life, in a different role, where I wore lipstick and earrings. The place where I used to work is now a tip for a covert snack. She asks if I go out on leave can I bring her back a can of coke. She warns me that not all the staff will let you use the vending machine; it depends which staff member is accompanying you. Before I ask to go on leave, I try to sneak a look at the shift rota on the white board in the nurse’s office, to see who’s on. The Nurse doing observations sees me trying to look through the window and asks if I need something. I say no and go out into the garden instead. I sit on the wooden bench nearest to the fence, sometimes, if you’re there for long enough someone walking past will wave at you and say hello.
*
At the weekly community meeting for patients someone asks why they haven’t been allowed to weigh themselves this week. The nurses face changes, she looks across, pointedly, at a patient who sits on her left. –
‘We know why we can’t use the scales don’t we?’ She says in a disapproving tone. She stares at the patient. The patient looks down at the floor.
‘Yes’ the patient says quietly, nodding her head.
‘Yes, exactly’ The nurse tuts and turns to the rest of us, ‘we had a problem with the lead so now if you want to use the scales, we have to borrow a lead from one of the other wards,’ she pauses. ‘That’s why you can’t weigh yourself whenever you would like to.’ There is a shocked silence. No one says anything. The nurse continues,
‘We’ve ordered another lead; we’re waiting for it to arrive.’ The nurse looks down at the agenda and then back up at us.
‘Anything else?’ she says briskly, her colleague starts to tidy away the tea things. The patient who was reprimanded continues to look at the floor. I’m relieved to be able to leave the meeting.
*
Growing agitated and anxious at being cooped up, I measure the space in strides. The garden is twenty-two and a half strides by sixteen strides. My bedroom is five strides by three strides. My bathroom is two strides by two strides. Sometimes when I’m sure I won’t be allowed escorted leave, I ask out of boredom, and they say yes. I’m excited, delighted. I run quickly to my room before they can check the time since my last ‘incident’ and change their mind, before they can go into handover, before the alarm goes off and they don’t have staff available to escort me. I’m so excited to be allowed out I forget that minutes ago I wasn’t. I run to my room to change my shoes, find a bag. The bag that I want to wear was cut up during a ligature attempt. I pause flushed as I remember the incident, then find a small tote bag with short handles that I was allowed to keep. I run back to the main desk, slowing to a walk so as not to appear too keen. As the Health Care Assistant puts away the folder that documents what I’m wearing, and finds the key to open the door, I talk animatedly at him, babbling as he turns the key, trying to distract him until we get outside. As the heavy metal door swings shut behind us, I breath out excitedly. I’m not convinced we’ll definitely be going until that door is shut and locked and we’re stood in the car park.
The afternoon sun casts long shadows. Slim concrete paths meander through carefully planted trees and grass, this hospital has the prettiest grounds of any I’ve been in. There is a tiny greenhouse for doing Occupational Therapy, colourful plant pots are scattered around the door. Squirrels run about picking at the nuts and pinecones that have fallen between the trees. It’s hotter outside than on the ward. The sun feels amazing on my skin. Half an hour of escorted leave equals two loops around the hospital grounds, but if you walk quickly sometimes you can fit in three. We start at a leisurely pace; only two loops today. As we walk past the men’s ward, we have to step around a large lavender bush that spills across the pavement in front of us, thick with tiny purple flowers. The Health Care Assistant stops to break off the violet ends and crunch the buds between his fingers. He suggests I do the same, telling me that it makes the smell more vivid. I don’t tell him that I already know this, I want him to know I can be well-behaved, so I nod and thank him and roll the small round beads of lavender between my palms, sniffing my fingers and smiling gratefully. I want him to be impressed that I can sniff lavender and narrate the smell, then he’ll write down in my notes that I engaged with him and it’ll be more likely that I’ll be allowed out tomorrow.
*
A nurse sits at the main desk furiously scribbling on the observations sheet in scrawled initials that I can’t read upside down. Someone asks for a sandwich and she says short-tempered, without looking up,
‘Did you eat dinner? You should have had some dinner’ and continues writing. I was going to ask her for a sandwich. I didn’t eat dinner; I haven’t eaten anything all day. I stand with my knees presses against the edge of the nurse’s station. After a while she looks up to see what I’m waiting for and I say,
‘Sometimes I’m frightened of you’ She looks confused, staring at me, slightly shocked. I take a deep breath ‘sometimes you raise your voice’. She looks angry for a moment and then rearranges her face. ‘Everyone’s perception is different. I can’t change your perception’. She glances down at the clip board, and keeps writing whilst I stand there, feeling my face going red. She looks up again, ‘You’re welcome to put in a complaint if you feel like that.’ I stand very still, feeling the wood of the desk against my knees, pressing my palms down on to the flat surface.
‘I’m not the only one that thinks that you’re frightening’ I say. I look around at the other patients, one is focused on eating crisps, another sits looking very hard at a puzzle book in front of her. The nurse says. ‘you perceive that I’m firm if I need to be, but I never shout.’ I think to myself about all the times I’ve heard her raise her voice. What is the definition of shouting? When people ask for food in the night and she’s playing cards with her colleague she looks irritated and sighs. Often, she makes people wait until the end of the game before she talks with them. I say again,
‘Sometimes I find you frightening.’ She holds my stare, glaring now,
‘You don’t find me frightening,’ she says. I feel tears welling up, and she says more softly, ‘don’t be silly, you don’t find me frightening’ and continues on with her notes. I go to my room and cry. I think of when you’re frightened how difficult it is to tell someone you’re frightened. I think about how confusing it is when someone says, ‘you’re not frightened of me’. The next day I see her, and she smiles as if nothing has happened. She asks how I am, and I tell her I had a good day because I have learned that mostly this is what people are pleased to hear. I’m confused. Sometimes I’m frightened of her, but sometimes she is kind. She asks if I want to play cards and I say no thank you and go to my room.
*
I sit in the admin office of a women’s homeless hostel. I’ve been granted leave with my Care Co-ordinator to visit. If the visit goes well, I’ll be discharged from the hospital next week. My Care Co-ordinator is talking with the support worker about the artwork on the wall. I am concentrating on the pattern of the carpet. It’s worn in places and the carpet tiles don’t quite match. Another support worker enters the office, she wears a leopard print cardigan and has a small silver nose piercing. She smiles at me and says,
‘Would you like a drink? Tea, coffee?’ My Care Co-ordinator stops talking and they all look at me, waiting for a response.
‘Can I have some water, please?’ I ask
‘Sure’ She leaves the room and comes back with a glass of tap water. I stare at the glass in her hand then stand up and take it from her carefully. She joins in the conversation with her colleague. I slowly sit back down, clasping the glass carefully, fingers wrapped around it. There is no glass allowed on the ward. I haven’t held a glass in months. I pass it between each hand, feel the weight of it, precarious, the coolness of it against my skin. I’m shocked by how heavy it feels. For one delicious moment I think of smashing it against the wall and nearly laugh out loud. My care-coordinator asked me a question and I nod, not listening. The support worker says.
‘Do you have any questions Jenny?’
I pause ‘Am I allowed to go outside?’
They look at me, confused, ‘Yes, you can come and go as you please, there’s an intercom to gain entry to the building, someone is on reception all the time.’ I pause and think about this. That’s the only thing I can think of to ask. I sit looking at the glass in my hand, then lift it to my mouth and drink it quickly, just in case someone notices and takes it away.
*
For any mental health professionals reading this – I imagine people in a caring profession want to think they are mostly always kind and compassionate, free of discrimination and judgement, but kindness can be coercive. Professionals often seem confused that patients don’t trust them, but you’re a stranger wearing a badge, I’ve met hundreds of you, exposed my most vulnerable self, shared my personal horrors, turned up to appointments, accepted different diagnoses, attended support groups, read books and leaflets, painstakingly filled out handouts and mood charts, logged apps and counted breaths, and still every few years I end up lying on a hospital floor screaming at imaginary cameras in the walls.
When a patient makes a request and you feel you have to say no, please take some time to think about why. If there’s a policy in place, that says something can’t be done, be curious. If you can, find out why those rules exist, who wrote the policy, how long ago was it, was it in response to a single incident? Question things, ask colleagues, reflect on not just what you say, but how you say it. Support your colleagues by feeding back to them about their interactions. Be open. Listen to patients but don’t expect us to tell you the truth straight away. When I’m in hospital I’m dependent on you for access to food and medication. If I want to cut my nails, I have to ask you for nail clippers. If the toilet roll runs out, I come to the nurse’s station and ask you for more. You decide if I can go outside, you decide if I can see my family. I may not feel safe enough to tell you how I feel, I may not want to upset you, I may be worried that I won’t be listened to or worse, that I will be labelled ‘difficult’ and dismissed. In detaining me, you take away my freedom, but you have a choice whether you also take away my dignity, my sense of agency and my self-confidence. That power rests in your own approach as a professional, your own choices in the way that you treat me, moment by moment, while I live out my life in these rooms, trying to work out how to tell you what I’m frightened of in a way that you will understand.
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Mad Covid 