THIS TIME LAST YEAR
April 7th, 2020
Words by El Hardwick & Artwork by Alia Wilhelm
It took slowing down and reaching a full halt to feel like I could just exist as me and not the things I do.
In January last year, I got the flu. I went back to work too soon after and got the flu again less than two weeks later. Now, a year on, my body has still not fully recovered, and I am going through the process of getting a diagnosis for Myalgic Encephalomyelitis. Notoriously hard to diagnose, M.E. is a long-term illness characterised by chronic fatigue and pain, made worse by mental and physical overexertion (also known as post-exertional malaise). There’s no definitive cause, but many sufferers note that their symptoms occurred following viral or bacterial infections. I also believe that my M.E. was the result of spending most of my life overworked, burnt out, and never understanding how or when to rest.
During the first three months of being sick, I was essentially housebound and slept more hours than I was awake each day. When I was able to leave the house, I didn’t have the energy to do activities for more than an hour or two. As I could barely walk, I had to travel everywhere door-to-door, mostly by car. When I was at home, I was in so much pain, was so exhausted, and had such intensive brain fog, that I couldn’t do much, other than lie down and listen to music or podcasts. Talking with friends on the phone would quickly lead to me losing my voice, and socialising would leave me with a migraine and body aches. I couldn’t even use the computer for more than 30 minutes at a time.
When the symptoms came on, it would feel like suddenly hitting a wall. The easiest way to describe it is that it felt like being permanently jetlagged; it was the mental confusion and aches of the flu, but without the cold and fever. Falling asleep was a constant challenge, but when I succeeded, no amount of sleep ever felt refreshing. When I tried to engage with the outside world, I had to learn to set clear boundaries. One minute of too much activity could push me back over the edge and into bed again for two or three days. Other than taking an unhealthy amount of painkillers, the only way to manage the symptoms was to do what is referred to as “pacing” - a technique where you take regular rest breaks during activities, before the expected “breaking point.” When doing this, I spent my time either in the bath, or laying on the ground in my garden, staring up at the sky, listening to ambient music, until the symptoms would subside.
While sick, I started to write journal entries in the notes app on my phone about how it felt to be cut off whilst the world carried on at a speed too fast for me, and how it felt to not even be able to do much with all this free time stuck at home. It was a complex but ultimately transformative process of learning to rest, embrace slowness, sit in my (painful) body and (physically and metaphorically) wake up.
Reading the entries back now, I think there's a lot of common ground between how I felt last year, and many peoples' experiences of self-isolating now. Without my period of sickness last year, I wouldn't feel so incredibly grateful for the fact that I can now spend my time at home doing more than just lying in bed. I can go for walks, read with concentration, garden, cook, spend time on the computer, make music, apply for grants and projects, send emails and video call friends.
The fact that many able-bodied people are now self-isolating and forced not to work means that they have the time and incentive to reinvent their activities in a way that, as a bi-product, grants chronically ill and disabled people access to so many things that we didn’t have before, such as live-streamed events we can attend from our bedrooms and regular check-ins from friends on video calls. This is not to mention the dramatic governmental changes in the UK to the painstakingly brutal and precarious application process for benefits such as PIP (Personal Independent Payments) and Universal Credit. The status quo of 24/7 work culture leaves many of us without the precious time to connect with loved ones, which is starkly contradicted by the irony that in the last ten years, we have access to 24/7 connectivity that should technically allow us to increase nearness, not move away from it.
This pandemic will unfairly take so many lives too soon, and has also become a financial and mental health crisis for many individuals, particularly those who were already on the margins: women, sex workers, migrants, the LGBTQIA+ community, gig economy workers, freelancers and small businesses. But for those of us in quarantine, seeing the capitalist system grind to a halt can at least be a small and rare opportunity to reflect with gratitude. This period may provide us with a much-needed time of rest not on offer in the usual landscape of 24/7 work culture.
For now, we have a moment to think: What are we grateful for? How do we find happiness in our own backyards, rather than hopping on a plane somewhere else, or buying that thing someone told us would complete us? How do we build community and solidarity in non-physical spaces? Last year I spent a lot of time thinking about the online communities that I engaged with in the early millennium, and how much of that sense of belonging was lost when social media became a platform for branding individualism, over the mutual support networks that existed in forums and blogs. The past few weeks have shown me the possibility that the world wide web can still be a space for grassroots projects. This collective change of life as we know it, in order to protect the most vulnerable, has become fertile ground for solidarity, care and mutual aid in our communities.
While I must add a disclaimer that my journal entries from last year were made purely as an in-the-moment stream of consciousness, I hope that they may highlight some ways to give yourself and others space to rest, nourish, care and engage — online and offline.
I was only really sick for two or three days, but when you’re that sick, your body quarantines itself off from everything.
I shut out the outside world, I shut the door and the windows. I shut out the light when I pulled down the blinds and drew the curtains. A small hair crack of light broke through the place where the blind and the window frame meet. I closed the windows on my computer, and then I closed the lid. My phone lay on the mattress engulfed in rolls of quilt upon blanket upon throw upon duvet, and at more frequent intervals throughout the day than I realised I received them, texts would enter my closed-off space with a vibrating announcement that shattered through the mattress, as if catapulting through its springs. If flip phones were still a thing, I’d have closed the phone too.
In my self-organised quarantine, the sound was dampened like when it snows. I couldn’t tell, but outside it began to snow, too; the world outside was also trying to dampen the stress of sound and stimulation. White, soft physical barrier to cars, noise and shivering people; it says “stay inside.”
And I stayed inside as the outside world continued to orbit. My fever was a stewing magma inside of me, my blankets were the crust, and my gravitational pull brought any and all necessary objects within reaching vicinity: a roll of tissue, a bottle of juice, a box of painkillers. In the most intense days of the sickness, even reaching was a pain. In my cocoon, my conscious and subconscious thoughts became entangled, with fragments of text messages weaving themselves into the cacophonous nonsense. Attempts to watch TV shows only blended into the strange fiction of this new heterotopian non-place.
When I’d gotten through the worst of the sickness, I felt like something in me must certainly have changed, must have learned something. Instead, it felt like I was awakening to all the things that had been there before that I hadn’t realised I wanted to shut out: the intrusiveness of text messages from well-meaning friends, and the obligation to reply to them via a mode of communication that felt so... un-present; the impatient footsteps of people behind me in the supermarket when I ventured outside again for the first time to buy some food, where I was moving too slowly for the pace of anyone else; logging back into Facebook and remembering that in fact I had missed essentially nothing on there in the meantime apart from more public diary entries from people that I may never really get to know. Were some of these cryptic SOS whistles, lost in a sea of voices, struggling to reach out too? How many people internally feel and have felt the same as I do now, and will I ever know?
A few years ago, my friend turned to me and said “Do you ever think... What if I just stopped replying to the to-do-list of messages? What if I stopped doing any of the things I was supposed to do, and just waited for things to happen?” Now, I feel an affinity with this problem of trying to stay on top of it all, of giving away my energy unwisely, of burning out. What would happen if I stopped putting myself and my energy out there, and stopped to take things in?
I am relieved to no longer feel like my virus’s voodoo doll, where the target was every joint in my body, yet there is something about the quarantine that I now miss. But I don’t feel like I can go back to that behaviour without being ill; lying in bed in the dark under an aquarium of subdued lava lamp light and sleeping for 48 hours straight would be a symptom of some other kind of non-physical illness — one I don't want to admit not being immune to.
It’s funny to think that the seasons have changed while I’ve stayed in stasis. The illness started whilst it snowed and three weeks later the sun came out beating all hot and spring-like whilst I was still where I’d left myself, inside the house, mostly in bed.
There was a small vignette where I opened the front door, eyes wincing from the light of a moving world outside. And then (for the sake of a blood test) I found myself outside with it all, walking as if slowly swimming against a current. I made the journey down the road like a scene from Koyaanisqatsi where the subject of the shot is still and their surroundings speed by in fast motion. A city of streaming lights that move so fast, you see only the traces of movements already made; ghosts leaving tombstones of dropped chip shop boxes and tissues on a pavement.
The world continues on, moving moving moving. I stay still, but my mind is moving moving moving more than I’ve ever felt it move before. Sometimes it takes stopping still to actually look out ahead of you rather than at your own feet (to make sure you don’t trip) to actually see the full picture, and work out which direction you want to go in. To scan your eyes over all the possible directions, to reflect and evaluate fully and with care.
It’s easy to think that being out in motion, creating proof of your actions and existence, is the most tangible symbol of your purpose and achievements. And yet it took being slowed down until I reached a full halt to feel like all that could melt away and just wash over me, so I could just exist as me and not the things I do.
Some days I wonder if the universe made me sick to teach me a lesson. Or, let’s start with less self-deprecation: I wonder if a way to get through this paralysis is to think about what I could learn from it. A week, a month, nearly five weeks now, and it may continue much longer still.
Learning how to take time off. Learning when to let go. How to be alone. How to be patient. How to stop caring. How to truly define The Fear Of Missing Out. How to rest. And how to be true to what I want and not to a projection of what others say would be a good thing to want. Learning who your truest friends are. And who you can feel you can call when you’re crying again from the frustration of feeling static whilst the world continues on. Learning that if you thought you were unhappy and trapped before, well that is just starters for the actual definition of having so many of the freedoms you took for granted taken away for you (yet for a shorter time than so many other people have to live with).
Maybe I’ll learn when to really savour and appreciate what is happening, when it is happening, once I am better. Climbing a mountain and not being scared about how far the top is from the bottom. Driving through the desert in the dark and not knowing where you’re going and not being afraid of death. The energy to dance and the catharsis it brings. Meeting strangers, brief exchanges of words with acquaintances, familiar faces appearing in old haunts.
Maybe I’ll learn something about wallowing in self-pity. And I’ll learn when to reach out to others who feel closed off from the outside and need someone to show that they want to come in.
Lately I’ve been thinking a lot about the difference between visibility and being invisible, and about presence versus being present. (If a tree falls in a forest, and no one took a picture, did it ever even happen? But what does it mean to privately witness the trees, to feel actually present, go on your own transcendental journey whilst your presence meanwhile becomes invisible to everyone else?) Our bodies communicate their limits to us through sickness, and sickness eradicates our ability to constantly make our lives visible. This is not only because a life in bed may feel less Instagram-worthy, but because our pain forces us to feel present. [Addition: Much to the dismay of Descartes, or the US Defense Department, our bodies are not limitless machines that can continue to run off the mains, even when their batteries are otherwise exhausted. When something happens that forces us to unplug (such as my illness, or a worldwide pandemic), we find a fried battery that needs charging several times a day; a metaphor I’ve used many times to communicate my need to stop and recharge. It’s hard to feel present when our mind is constantly engaging in activities that take us out of our bodies, like working 24/7, being distracted by the attention economy, or pouring energy into how we represent ourselves online - rather than using that same energy to engage with how our physical selves feel in this present moment.]
I remember how the early communities of visual expression online were less about production of content and more a sharing of experience. Many of these communities that I engaged in during the early days of cyberspace, like Flickr, DeviantArt, Tumblr, LiveJournal, Dollzine, Blogspot, Oekaki, Gaia Online, felt like a carving out of a space that didn’t exist for lonely or marginalised voices IRL. These spaces supported the sharing of knowledge and experience in a way that gave its users an environment where they could explore who they were without the pressure of fast production. The migration of desktop websites into newsfeed-style apps as a main means of communication and image-sharing erased the free sense of time we had on the aforementioned social media platforms in favour of 24/7 accessibility and the accompanying desire for 24/7 content.
To me, the pressure to constantly produce content, to constantly show up, to constantly be visible, is a bi-product of the widening spread of capitalism and neoliberalism that puts pressure on us to all individually produce and be production houses. What does it mean instead, to show up to the spaces where “showing up” is less centred on individual visibility and more focussed around ideas of savouring experience, sharing knowledge and building community?
The limitations of my body and its health have forced me to take a time out these last three months, and during this I’ve thought a lot about how I can feel present in this world without being physically present with other human beings. Through this, I’ve learned that by experiencing time outside of the pressure to produce, I feel less like taking a tunnel vision view towards the importance of my own individuality and visibility, and more interested in how we can work on building more sustainable communities online — particularly keeping in mind that many cannot be present in IRL communities due to health reasons. And yet cyberspace currently offers fewer alternatives for the building of communities outside of a pyramid of specifically powerful social media corporations.
Not to say that I think I deserve sickness, but maybe I had another lesson to learn. To find happiness in success and upon travels is so easy (but even then, I didn’t always feel it; I felt anxiety). But to find happiness in the backyard, in my mind, in something simple and quotidian, we’ve been told is hard. And yet when I allowed myself to, it felt so easy.
To lay and stare at the clouds moving and swallowing themselves up in the wind, like an ever-changing image that is never twice the same. Feeling a breeze lap over me like waves, the warmth of the sun on me, a single chord of music vibrating viscerally through me — I feel more present in my body than I ever have before. I feel a profound awareness of not being alone in my garden, because I’m surrounded by so many non-human living beings: insects, birds, squirrels and foxes. And then, my curiosity grows in how their lives and personalities are beyond my gaze. In this newfound state, it seems there’s so much more going on in my own home now than there was on a holiday somewhere far flung, when my mind was where it was before. I’ve begun to feel, look and listen with a new level of gratitude, intrigue and magic. I’ve started to notice the routines of creatures whose volume is usually too low to be heard above all the rest of the noise of a busier life. Even the sound of migrating geese heard through a closed window at 5am wakes me up and reassures me with a sense of ritual and the passing of seasonal time.
When the sun is out, I drink up every minute of it as if it may be my last. The warmth of it on my skin is like some kind of elixir, and I savour the sensation as an activity in itself. The rays’ touch is a temporary substitute for the loss of physical contact; one of few other pastimes that similarly helps me in losing all sense of temporality. When the sun returns after a long winter, I’m lovestruck and giddy much like the honeymoon period of romance. By the end of summer, the relationship between me and the sun is one of nurture, codependency, comfort and commitment, like a marriage of some kind. The next winter, we divorce, and I resist endlessly in coming to terms with welcoming in any new love, particularly one that everyone else tells me should be a season of quiet reflection and hibernation. For me, doing less comes hand-in-hand with the hot sun and I being outside together for all of our waking hours and the surrounding nature providing enough additional company and entertainment to keep me busy. When we retreat inside, into our nests, behind the clouds and below the horizons, we are alone again, and that is the time when I allow myself to contemplate.
El Hardwick is a multidisciplinary artist based in London, UK. Working in the mediums of photography, video, music and writing, their artistic practice explores themes of cyberspace, epistemologies, the relationship between the human body and its surroundings, queer world making practices, and how we can heal on a damaged planet. You can find more of their work at www.elhardwick.com
Alia Wilhelm is a Nearness co-founder. She works as a multimedia artist and director's assistant in London. You can follow her @aliiiiia and check out her work at www.aliawilhelm.com