Isolation.

This article is a messy account not of the COVID-19 pandemic but one written during the pandemic. Although written over several successive evenings it is not a linear narrative that builds on a chain of passing moments teleologically to an end. It is not a diary, just a collection of scattered thoughts about living during COVID-19, the (lack of) care that many elderly people receive and how we, or perhaps only I, struggle to cope in these exceptional times. This is not a typical autoethnography, it is not reflexive writing and there is no conclusion albeit that the article ends.

What follows is a scattered narrative that recounts some isolated experiences and thoughts of mine during the COVID‐19 pandemic. I make little attempt to suggest any coherence that might frame this narrative, there is no conclusion, no central point that the narrative reveals. This is atypical of academic writing, it is messy writing, thoughts that do not build towards an argument but merely recount some experiences and where the relationship between them is restricted to them having occurred in the same pandemic event. This is not an autoethnography recounting my life during the pandemic but accounts tied to it. Nothing more.

I watch her from a distance in silence. She does not know that I do this, it is my secret, a habit or perhaps a ritual that I do in secret. I’ve been doing this every evening for six weeks. I remain in the background, silent, waiting, watching, unbeknown to her. My heart in my mouth, the temptation to reach out and touch her nearly overwhelming but I don’t, I can’t, she can’t know that I do this. I must remain content to watch and wait for now.

And then she rewards my patience and makes the long still moments worthwhile. All of my attention acutely focused on her movement. Will she do it again, will she reward my wait? She does and then once more. I untense, muscles relaxing, my spine no longer locked rigid, I breathe in and my tension starts to unfold and dissipate.

I have been watching my elderly mum, silently waiting, waiting for evidence that she is sleeping not dead. My reward comes when she takes long, shuddering breaths and slowly stirs to life. She is alive and has not departed her mortal coil in her sleep.

She sits up in a groggy way, reaching out to balance herself, not yet fully awake, not yet fully aware of where she is. Is this what it means to be really old where in quiet moments the veil between life and death draws thin? Six weeks of isolation during the COVID‐19 pandemic in the UK has drawn it yet thinner.

She is awake now, aware of herself and her surroundings, her breath wheezing in and out of her body. ‘Mum, I need to go now.’ Quietly but loud enough to get her attention. I repeat the words once, twice, three times.

‘So soon?’ Her response. She looks towards her mantelpiece clock, looks surprised at how late in the evening it is. She isn’t aware of how long she has slept; she may not even be aware that she has been sleeping.

‘I’m sorry but I need to. I still have work to finish.’ And I leave to return to my own flat promising her as I do that yes, I will come again to see her tomorrow afternoon once I have completed my official 9–5 work. And I return to that work in the evening after seeing her since my official work far exceeds those allocated hours. This is my account of my life during the pandemic.

A letter arrived that states that I am at risk and must shield myself from others. That letter, sent days after others had been sent out, arrived at a point where I no longer thought I was at specific risk. My letter was sent as part of a second batch of 600,000 letters to people forgotten or missed in the first tranche of 900,000 letters. I have been told to shield just when I thought I did not need to, just when I thought I was not at risk. Reading the letter feels like reading my own obituary. I have an underlying respiratory illness that makes me susceptible to the virus. Twenty years ago a pulmonary disease specialist told me, ‘You have inherited emphysema. It will kill you unless you get hit by a bus first.’ Prophetic, perhaps.

The letter gives me a telephone number that I can use to get food and medicine delivered to my door. I must remain isolated from others for at least 12 weeks. Except of course I don’t. Every day I leave the shield of my single bedroom flat to visit my mum to make sure that she is still alive and breathing. Every day I pause my official work to care for my elderly mum because that is what we do as humans.

The care I show my mum is not official work. At least it doesn’t seem to be in all the official university statements regarding adjustments for caring responsibilities both prior to COVID‐19 and during the pandemic. Those adjustments relate to wives, husbands and children and if my position were reversed so my mother worked instead of me she could ask for an adjustment to look after me, her child. My university doesn’t merely recognize a nuclear family but a specific version when it considers adjustments. It recognizes a family based on hierarchy where parents care for children in an implicitly patriarchal and heteronormative way.

In the UK we increasingly separate our elderly parents from our nuclear families to leave them to care for themselves or to be cared for by care homes. Looking after and caring for our elderly parents has become the work that others do. In the early days of the pandemic the UK press suggested that the high death rates in Italy and Spain were because the elderly in those countries were still cared for by their families. That now no longer seems true, thousands of elderly people may have died in UK care homes and their families may be traumatized by the isolation of social distancing. In the UK care is not the work we do but has become the work that other, often poorly paid, people do to allow us to work and have lives. Care, as work, is devalued but all too often it is considered to be an other to work.

Some universities have terminated the contracts of their precarious staff during the pandemic. Some have furloughed staff. My university writes a weekly letter thanking us all for our hard work, saying how we are in this together and that we need to continue to work together for the foreseeable future. Fine words but they still furloughed staff who cannot work from home and who will most likely be on low incomes. Are we really all in this together equally?

My department in the university has established a Teams group to talk about work and social stuff, to support each other, to acknowledge the work we do and to care for one another. People talk about how they are coping working at home surrounded by their nuclear families. I have nothing to say or contribute to these chats about children, wives and husbands. And so I stay silent.

I work alone in my flat shielded from everyone. The days blur into one and I no longer pay attention to one day or another. They are all the same day divided rhythmically into work, time to see my mum, work, sleep. ABACABACABAC, chorus, verse, chorus stretching back, reaching forward, drumming its pattern inside my head, establishing routine. This is meaningful to me. It appeals to me as someone who is on the autism spectrum disorder (ASD). I need a routine and this is simple; endless to a point where I do not know where it started or where it will end. I do not need to worry if this upsets anyone else, it just is and it keeps me isolated, distanced from other people in a time where everyone is isolated. For once my isolation is not exceptional.

Others miss their social contact. Being alone is too much for them, they crave contact. I however do not. Isolation provides me space and time to plan how to respond, how to behave and how to understand other people. In normal times past I would worry about and plan what to say to people. Even trivial conversations have the potential to me for being a fraught social exchange where I may get confused, respond in the wrong manner, behave in a way that others would not see as normal. Isolation means that I do not have to work quite so hard to hide my ASD from others. Isolation makes my exceptionality less visible.

But it hasn’t been negated. In the pattern that I crave, the habits that I form and the isolation I find myself in I have started to scratch. I do this without thinking, my body testament to this coping mechanism even whilst I am not consciously aware that I do this. This is qualitatively different to self‐harming; the scars of my self harming have more purpose and intent. Those cuts are deeper and scar me indefinitely but where the scars are restricted to specific parts of my body that I am dysphoric about these scratches are everywhere, random, shallow marks on my body, arms, face and legs. A tracery of the pandemic but too ephemeral to outlast the pandemic.

That the pandemic will end is an almost certain truth. The scratches will be gone but COVID‐19 may well have unintended lasting effects. I worry that my mum will not survive the pandemic should it persist for months longer. I watch, waiting silently to see that she has taken another breath and this watching has become a habit that will almost certainly persist long past the pandemic. I can only watch as her mortal coil runs down and takes my care with it. The grinding reality of her impending death etches on my soul how little I can do, how my care for her is not enough, could never be enough. My work is not enough.

I stand at her front door. ‘Will you come tomorrow?’ She asks.

‘Yes of course. Same time. Have a nice evening and sleep well.’ I turn and start to walk away but pause and turn to wave back. She’s still standing there, waiting; so frail in the doorway. She waves and then closes her door. I go and call the lift, careful to stand as far back from the lift doors as possible just in case someone is in it. A wreath hangs from a nail on the front door opposite the lift. I can feel my tears well up and I’m on the verge of crying. Again.

The lift is empty. A notice is stuck on one wall advising people not to take the lift unless alone or with a member of direct family. I travel down to the second floor and then take the fire escape stairs to the first floor and my flat. There are two lifts in the block, one for even numbered floors and one for odd. My neighbour exits the lift carrying some shopping. He says hello to me and closes the distance between us. He has special needs and possibly doesn’t understand the need for social distancing. I ask him how he is and how he is coping. He replies that he’s well and doing fine and asks if I want a TV. I say that I don’t and he tells me that he collects them and if I ever should want one I can choose one from his collection. He’s told me this many times before. I thank him and politely decline. He wishes me a good evening and goes into his own flat.

I’ve spent three hours caring for my mum today. Three hours every day that all blur into a single relentless day. Three hours with virtually the only person whom I’ve seen in six weeks. Three hours where I break my shielding to care for someone who cannot care for themself. I’m on the verge of tears and emotionally drained but I still have paid work to do, the 9–5 that I’d already worked earlier today is not enough.

Cup of coffee made, laptop on, I stare at the work emails: students asking for help, support and guidance; colleagues asking for information — will we award a prize for student performance, fill in this spreadsheet, check these records, can I moderate these assignments, attend this virtual meeting, that academic misconduct. On and on and on relentlessly without end. And in all of this the university tells me to do what I can, that it is sufficient, that it is more than enough. But it very clearly isn’t given the seemingly never‐ending requests for information.

10:00 p.m. and my partner messages me for a chat and to say good night. They are caught in France in lockdown. Hundreds of miles apart and our method of communication is Messenger. I keep my Facebook account open through the day in case they message me. It’s the first thing I check when I wake and the last thing I look at when I go to sleep. They send me photos of the flowers and plants in their garden because they know that the photos cheer me up. I have no garden or outside space for my flat. Outside is the concrete and tarmac of an inner city.

I deal with those emails that are important that have arrived in the three hours whilst I looked after my mum. The others will have to wait until tomorrow and by tomorrow more will have arrived through the night. And then I open my research on the lived experiences of marginalized people in prison. These vulnerable people write letters to me telling me their stories and I reply asking for clarification, asking more questions, answering theirs. I’ve been doing this for months and continue to do so during this pandemic. In many cases these letters are the only contact that these vulnerable people have with the world outside. It seems that we are not all in this together, some have the luxury of gardens, outside space and being able to take their daily exercise outside, some do not. I write one reply but can’t continue. I feel empty, hope spent by our inhumanity to others even in the midst of a pandemic.

COVID‐19 means that prisoners in England and Wales are locked up for 23 hours a day in a cell. I at least have the luxury of a small flat and a daily three hour visit to see my mum. The Press write stories of how prisoners may be released on early licence because of COVID‐19. Social media fills up with comments demanding that prisoners are left locked up to rot. Some of those commentators describe themselves as ‘gender critical feminists’ but their feminism is carceral.

It’s gone 1 a.m. Where has the time gone? Why am I so ineffectual at the moment? Why can’t I settle down and work? Stuff that would normally take me an hour I now only manage to part complete after three hours. I need to go to bed and get some sleep before all of this starts again in six hours.

I hear my neighbour talking quietly to himself. Months ago an upstairs neighbour came down late at night and threatened to hurt my neighbour if he disturbed his sleep any more. And so I found myself all those months ago standing in my dressing gown in the corridor telling an angry man to shut up and go back to bed whilst asking my neighbour if he was ok. It’s now 3 a.m. and I lie in the dark listening to the man in a flat above mine screaming and swearing. I glance at my watch. I sigh and go to sleep. I wake at 7 to hear him screaming and swearing abuse. He is still screaming abuse at something when I turn my laptop on and start work. Still screaming abuse when I pause for a coffee at 11.

I have ASD and a manifestation of which for me is that whilst I struggle to understand and ‘read’ people and their intent I have few problems with numbers. The daily bombardment of news related to the pandemic fascinates me as most of it is pattern recognition where I can see various scenarios that develop from the numbers. I see in my mind how a death rate will develop if R = 1 or R is 2.4. Weeks ago I calculated for myself what I think is the most likely pattern and how many vulnerable people might die depending on evolving scenarios. I start each day by listening to the radio news, reading the news, checking numbers and adjusting patterns as information builds up. My OCD has gone into overdrive.

Over the weeks the numbers quoted as the total number of deaths have started to reflect my estimate. I am ashamed that my pattern seems to be solidifying. It feels like I have willed this pattern.

I hate myself for doing this. It’s a mark of my isolation from other people; numbers and patterns before people and solutions. If I fixate on numbers I do not have to worry about the people. It’s what I do and it leaves me at a distance, distant, isolated. But even knowing this I still do it compulsively. Marking time, spending it wastefully; this time that I wish was over, never to repeat.

On Facebook I see others who also follow the news to gather numbers and make sense of them. Their understanding is often different to mine and they shout their truth at others. Many posts are not about numbers but about how people are socially distancing themselves. Arguments develop and Facebook friends fall out with Facebook friends over trivia. More and more people defend their right to be outside in the open. They demand that others stay away from them rather than ensure that they stay away from those others. People claiming ownership of the space between them; people demanding a right that they deny to others.

On Thursday evenings people stand in the street and in their gardens at 8 p.m. cheering, clapping, making noise for the NHS to show their support. I stand at my flat window and clap. I have no outside space where I can go to clap and show my support. I cannot lean out of the window to scream and shout my support.

My window is on a brake that stops it opening wide. All the flat windows in the block are restricted by these brakes that stop us squeezing through the gap to fall to the concrete below. Flats above the third floor are hot even on a cold day, even with the windows open as far as they will go. In my mum’s flat eight floors up the sun streams in relentlessly. In the daytime on a sunny spring day her flat is in the mid‐20s but in the winter it’s difficult to heat these flats. My flat is in shadow however except on very sunny days when the sun is directly above. It is cold on all but the hottest days. My flat is expensive to heat and I wear a coat whilst I work. Working from home during the pandemic has driven my heating bill up considerably.

The next day my mum asks me what the noise was about and I explain it to her. She asks about the news stories of how people have helped others in isolation with their shopping. In the six weeks that have passed by no one has pushed a card under her door offering help. When she has gone outside for a walk passengers in cars shout at her. They leave a frail, old woman afraid in their wake. When she has been to a shop, other customers push past her and grab items before she can pick them up, one takes stuff out of her basket. Others laugh when she slipped and fell in the road. Do they see a frail old woman in her 90s who needs support, or an elderly Chinese woman to accost, abuse and blame for the pandemic? My mum worked for the NHS for over 30 years.

I turn my back towards her and wipe my eyes. Crying again. I cry a lot, too much, I can’t stop myself.

My phone rings. It’s a doctor from my GP practice. This is the first time I have spoken with a doctor in all the years I’ve been registered at the practice. ‘You’re due a blood test soon. We’re not doing tests for the foreseeable future. Please don’t come to the Practice for the test we are not open for tests.’

Five years of silence broken only to tell me to stay away.

I rang my surgeon two weeks before lockdown as I expected to have my gender affirmation surgery in the spring. Postponed indefinitely due to the pandemic. Don’t ring us, we’ll ring you. I have been on the waiting list for surgery since January 2019 and in medical transition in the UK since early 2015. So near, yet so far.

And then five weeks into the lockdown a Government Minister makes a speech in which she states that the Government will row back on the few rights that transgender people in this country have. She appears to see the pandemic as an opportune time whilst people are distracted and whilst one cannot demonstrate in public against this. She is not alone in this, trans folk have had their rights attacked by the governments of Hungry, Poland and the United States. In the United States Trump tells doctors that they can refuse any form of medical treatment to transgender people. Those who call themselves gender critical feminists cheer the English Minister on. When lockdown ends, when this pandemic is over, I may be allowed outside but I may not be able to use a toilet. The patterns that I see are not only numerical, this one is redolent of fascism, not feminism. For once I feel more disgust at other people than I feel for myself.

What will the world be like when this pandemic is over and I no longer am expected to shield myself? At times I wonder what I am shielded from, it certainly isn’t the risk of abuse, victimization and potential poverty and unemployment. At times it seems that the virus is used to shield those from questioning where they seek to isolate and victimize the vulnerable. People say that we cannot return to what was normalized in society before but what will the new ‘normal’ be? Will I come out of isolation into a society where I am legally required to use specific toilets and where I will have to carry legal documents about my name and gender? A world where my much delayed surgery may be cancelled indefinitely? A world that is intolerant of difference? Will it be a world where care does not extend to the elderly and weak? A world where prison becomes a site not of rehabilitation but punishment? If that is the shape of our future world I would rather remain in isolation.

The research work that I continue to do during this pandemic leaves me feeling distraught. The inhumane way that we treat others devastates me and leaves me feeling raw. All too often the stories told, the experiences recounted, bear similarities to my own life: stories of isolation and confinement. My university says that there is insufficient evidence that my research is sustainable and is not important enough to warrant interest. They do not care for it; I feel compelled to carry on in isolation.

‘Have the Government ended the lockdown?’ My mum asks. Her TV has the evening news on.

‘That’s the New Zealand PM mum. That story is about New Zealand and how they are ending their lockdown. It’s not about here. Sorry, it’s not about here.’ She looks defeated and I don’t know what to say to comfort her.

So often now I do not know what to say or what to do. Friends ask me online if I am ok, am I coping? And the answer increasingly is ‘no, not really’. But cope I must as my mum needs me to care for her. In those moments when I’m alone I find myself crying uncontrollably. With each passing week those times occur more frequently. Things fall apart.

DECLARATION OF CONFLICTING INTERESTS

The author declared no potential conflicts of interests with respect to the authorship and/or publication of this article.