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For six years now, I have been writing down three good things that have happened in my day, every day. It doesn’t matter how big or small they are. It could be having pastries in bed. Spotting a fox in the garden. Successfully descaling a kettle. I do not call this my gratitude journal, because I am not a motivational wellness blogger. But I have found it vital, in order to rewire my brain to focus on the things that have gone right. Left unattended, my thoughts have a tendency to slip into a downward spiral, to somewhere much darker.
I grew up in Italy, where there is a saying: “Non c’è due senza tre”, which roughly means “Good (or bad) things come in threes”. For most of my adult life, there have been three main issues that have preoccupied my thoughts when I’m lying in bed at night. I have guarded them preciously: I barely mention them, even to my closest friends. But, sometimes, repressing thoughts takes more effort than confronting them.
The first of the three has always been there. I was born with a malformation in my left forearm: it is several inches shorter than the right and bends at the elbow; my left hand has four fingers. I had several rounds of corrective surgery as a child, travelling around to meet doctors and specialists (one told my mother: “Of course, she’ll never be Cindy Crawford,” as I sat next to her and burst into tears). For six months, aged 13, I wore an Ilizarov frame: the bones in my arm were broken and attached to metal screws, which were gradually lengthened to stimulate a couple of inches of growth. Somewhat comically, I wore a cardigan over it, pretending people wouldn’t notice me walking around with a sharp metal frame attached to my body.
Unsurprisingly, added to the usual pressures placed on young women to look a certain way, my arm did not help my self-esteem growing up. It certainly made dating… interesting, though, in retrospect, it did at least keep away anyone closed-minded enough to be wary of difference. I was never bullied, exactly, but the odd comment and glance has stuck in my mind with a peculiar persistence. The cashier who, out of the blue, confronted me with a barrage of questions, including how I ate. The inquisitive looks from children who have not yet learned how to discreetly ignore. The friend of a friend who caught a glimpse of it and cried out: “What is that?” before quickly realising her mistake.
Perhaps you would not notice it immediately if you met me. I prefer long sleeves, and am keenly aware, especially around new people, of ways of concealing it. Maybe once a year, thinking about it will overwhelm me to the point of tears; normally it is simply whirring in the back of my mind, a constant murmur of background noise. Day to day, it’s not so much the things I can’t physically do that bother me – although not being able to play a musical instrument is the thing I most regret – as the everyday activities I avoid because I know they will cause me distress: group exercise classes, swimming, manicures. People are usually too polite to bring it up in conversation – which works perfectly for me, so please don’t start now (if I want to discuss it, I’ll broach the subject myself, though I probably won’t).
The second thing that keeps me up at night was revealed when I was 15. My periods hadn’t started, so I visited a gynaecologist to check whether everything was in order. For the months leading up to the visit I remember feeling low-level anxiety about it: what if something else was wrong with me? But what were the odds – I had already had such bad luck. It turned out everything was not in order: I was diagnosed with another rare syndrome, Mayer-Rokitansky-Küster-Hauser (MRKH), meaning I had been born with an underdeveloped uterus, and would never be able to have children.
The following month passed in a blur. I cried on the sofa; I went to school; I went to the cinema, feeling numb. I more or less stopped eating for a year. I cut my hair short, dyed it black and made some angsty art. I listened to a lot of PJ Harvey and read existentialist Russian novels whose intense emotions matched my own. Seeing as the traditional womanly accomplishments of beauty and fertility were now out of reach, I threw myself into studying, finishing school with the highest results in my year. I discovered alcohol.
At 15, I had never thought about children: I had imagined any broodiness would start after my periods, which never came. Now, aged 32, I need to confront the realities of what the diagnosis will mean for me in the long term. Whatever my partner and I decide to do will come with its own set of complications. If we don’t have children, which considering the state of the world feels like an increasingly attractive option, there will be the inevitable questions and sad looks. If we were to try surrogacy – via an ethical, safe and non-exploitative route – people would judge us for using the woman as a vessel. Adoption can be extremely complicated. At the moment, all options are on the table.
The third issue was a one-off event: aged 18, I was sexually assaulted at university after having my drink spiked. I will be brief about this, mainly to spare my parents the pain (the only thing they need to know is that it was not their fault and it wasn’t mine; the blame lies entirely with the man involved). Survivors do not owe you their story. I repressed thinking about the assault, sometimes more successfully and sometimes less so, for years, until I finally admitted to myself what had happened. Memory is an incredible thing. Michaela Coel’s TV drama I May Destroy You is remarkably accurate on the subject.
This completed the trio: I’m not superstitious, but there was a circularity to it. Surely the worst was behind me. The following decade or so passed in relative calm. I found I could just about cope with the low hum of depression through exercise, wine, denial and sheer stubbornness; I displaced my anxiety on to smaller, more manageable things. As the political situation took a turn for the worse four years ago, coping became more difficult. While my personal life had never been better – engaged, in a job I love, with a strong circle of friends – everything outside that felt frantic, unmoored. Escapist entertainment became more valuable than the dark, challenging culture I had grown up consuming. I went on marches, I went door-knocking, I signed petitions. But mainly I tried to cocoon myself, safe in my bubble.
And then, a fourth thing arrived. On 20 March, my partner started to feel ill with Covid-19. We tried to isolate from each other in our one-bedroom flat, but it was no use: three days later, my skin turned cold and I started to shiver, feeling something new and alien move around my body. The following few weeks were frightening, though not particularly painful; we were young and healthy, we thought, we’d shake it off in no time. A number of our friends were ill too: it seemed as if everyone was going through the same thing.
Our friends got better. We got worse. The week of my partner’s birthday in April, he lay in bed with shooting pains in his chest and left arm, as I sat in the next room silently reading news stories about 30-year-olds in the US dying from Covid-related strokes. When we were meant to be getting married in Italy in June, we took the week off work but were barely able to leave the house. In August, a year after we climbed the Inca Trail in Peru to Machu Picchu, a walk around the local park brought on a week of excruciating chest pain. Despite having exercised every precaution (masks, gloves, hand sanitiser, staying home), we went from the fittest we had ever been to essentially bed-bound. We don’t know for sure, but the fact we were both affected in the same way suggests that the issue may have been down to a high viral load, which is why the virus can wreak such havoc on young bodies.
For my partner, who has never had a medical issue in his life, the challenge was finding himself suddenly ill. For me, the thought of having yet another thing wrong with my body felt unfair to the point of being unbearable. Of course, that’s a ridiculous thing to think: having a prior medical condition does not grant you immunity from future illness, and there is no one keeping score of the way injustice is meted out. But something about the disease feels personal. It has attacked the parts of my body that hadn’t been affected by the other conditions: my heart, my lungs, my muscles. My nervous system – the thing my career and livelihood depend on – feels damaged, somehow: there are headaches, brain fog, forgotten words.
The list of things I can’t do has got significantly longer. Oddly, it is exercise I miss the most. Used to being the last picked in PE, I have never liked team sports or gyms, but I’ve always been active. For the first three months of this year I was exercising five times a week or more: yoga, running, cycling, YouTube fitness videos. Now, anything more arduous than a short walk brings on flare-ups of debilitating pain. The one thing shown to improve physical and mental health is, for now at least, out of reach.
The terrifying thing about the virus, and its aftermath of chronic pain and post-viral fatigue, is that it is unknown and incurable. You can hear the hesitation in your doctor’s voice when you ask how long it’s likely to affect your body; you both know there is no answer. We have tried everything: paracetamol, rest, kale smoothies, breathing exercises, postural drainage, decongestants, turmeric, zinc, vitamins (B12, C, D, K), probiotics, weighted blankets, meditation apps, CBD oil, restorative yoga aimed at people recovering from lung cancer.
Nearly eight months on, the symptoms are slowly improving; doctors tentatively suggest it is likely we will fully recover. But one of the most difficult things to deal with has been the unpredictable and shifting nature of the symptoms, the fact that recovery is non-linear. One day it might feel like it has completely vanished. Then, one morning, you wake up with the same awful feeling in your lungs, as if they are being constricted and have collapsed in on themselves. Each recurrence feels worse than the last: it should have gone by now, you think; what if I never get better?
What do you do when your worst fear – or a fear you didn’t even know you had – comes true? Two months into the illness, I started speaking to a therapist, who is helping me find a way back to being kind to myself. For the first time in my life, I went on antidepressants: they didn’t solve everything, but they did mean I stopped crying several times a day, until I had to stop taking them because they were giving me heart palpitations. I played The Sims 4 and watched episode after episode of the reality show Selling Sunset (then felt annoyed at myself for wasting time). I tried to work on my dystopian sci-fi novel (but then again who hasn’t). I bought a lot of lipsticks.
Make yourself vulnerable and people will love you for it, goes the mantra, from Oprah to RuPaul. But what if you bare your deepest secrets and it makes people recoil? What if it’s too much, too depressing, and people look away? In an age where relatability is prized above all else, what do you do when your issues are so rare and so specific?
This is normally the point in the piece in which the subject talks about how the adversity they overcame was the best thing that ever happened to them. How it changed their worldview and made them the person they are today, that they wouldn’t change it for the world, that their disability is their superpower. For some people this is the case, but it isn’t particularly helpful to expect that everyone will have this same reaction. I waited and waited for the eureka moment when I would accept all the things that had happened to me, the realisation that they were what made me special.
But what if that moment never came? My experiences have shaped my personality, in some ways for the better, and in some ways for the worse. I would change it all in an instant if I could. What I can say is that I am proud of the things I have got through, any one of which could have been enough to derail the course of someone’s life. At the same time, I want to reassure others with similar conditions or experiences that you don’t need to berate yourself for feeling upset, which can in turn feel like an additional burden. If something causes you to suffer, those thoughts are valid too.
I never thought I’d write about any of this, let alone share it with anyone. I have felt no desire to expose my darkest secrets to internet trolls, or for people to skim-read over their morning coffee; I have no interest in being seen as a tragic figure, a victim. I have long been wary of personal essays, and the expectation that young writers (especially women) mine their trauma for clicks. With everything that’s going on in the world, listing the ways the universe has wronged me felt like a petty endeavour; as a cis, white, middle-class woman, I felt like my voice was not what was needed at the moment. With regard to my disability, I wanted to lead by example: not being pigeonholed, showing that you did not need to write about the things that made you different but about anything you liked – music, film, TV, art, comedy, cats.
But, at the same time, I have known for a long time that I needed to write this. As has become increasingly evident, representation matters, and who you are is important. Until now, I have been careful to ensure that there were no indications of my medical conditions online. Partly, this was self-preservation. Partly, it was down to vanity: the fantasy internet version of me was whole, perfect. Representation, however, only works if the difference is visible. Growing up, I never saw anyone like me in the media; disability is still one of the least represented groups across journalism, film and TV. I can’t speak on behalf of anyone else, especially considering how widely experiences vary across disabilities. But if reading this helps another confused, anxious little girl, it will have been worth it.
Popular culture has a lot to answer for. It’s not just the Bond villains with the inevitable facial scars and hooks for hands. It’s Werner Herzog, David Lynch, Ari Aster, Jonathan Glazer – directors I love – who turn to actors with disabilities to create a sense of the uncanny. I recently had to switch off a seemingly inoffensive mid-2010s romcom (which has been described as a “light, delightful movie” with a “hip indie twist”) after its fourth joke at the expense of disabled people in under an hour. As a child, I loved Disney’s The Hunchback of Notre Dame: I wanted to be Esmeralda, but I knew deep down that some people would always see me as Quasimodo (there is no archetype in which monster and beauty are combined; it is one or the other).
There is still a long way to go, but some progress has been made. Tyrion Lannister in Game of Thrones was one of the first characters I felt I could identify with: angry, flawed, lusty, likes a drink; turned to books to find self-worth. And in Naked Attraction of all places, I was pleased to see that a gorgeous man with a prosthetic leg and a tattoo of an elephant around his penis was one of the first to be picked for a date. Generally, we need to see all kinds of bodies in all kinds of programmes, not just relegating certain groups to separate shows that are by their very nature often patronising and infantilising.
I have been very fortunate in many ways, less so in others. My life is not one of misery: even in lockdown, I have filled my days with friends, love and moments of happiness. I don’t want to be forever associated with the things that cause me pain. My worst nightmare would be having my life experience reduced to a headline such as “My disability does not define me”. After all, I never chose any of this, so why should it shape the way people think about me? In a way, having had all these four things happen to me means I am not defined by any one of them. Just picking one as my distinguishing characteristic would feel arbitrary, reductive: they have all had an important impact on me in different ways.
I don’t want to be seen as impressive despite the setbacks I’ve experienced, I want to be seen as impressive, full stop. I don’t want to be described as “brave” or “inspirational” simply for existing; it’s not as if I have much choice. Just like everybody else, I would like to be thought of as smart, and attractive, and witty, with impeccable taste in music.
All over the world, political movements are being formed around the fear of difference. People who fall under protected characteristics – race, creed, sexuality, disability – are under a greater threat than ever. The question of not wanting to be judged for something out of your control is one that is intimate and personal to each of us, so it is vital that we stand together and support one another. Identity politics is too vast a topic to cover here, but I would just like to remind anyone who finds the concept problematic that none of us choose who we are. No one is asking for preferential treatment, just a recognition that certain things are more difficult for some people than others.
I have spent a long time thinking about identity: a funny, slippery thing. Mine has always been in flux: I was born in Italy to an English father and an Italian mother, and lived in Vienna for most of my teenage years. In Italy, I was seen as English, in Austria I was seen as Italian; over here my accent confuses people (it has been described as “home counties with the odd continental twang”). Given my diagnosis at 15, much of the discourse around trans rights and what constitutes a “real woman” is personally painful. Excluding certain individuals because of anatomical difference feels regressive, cruel, fearful of the other. Growing up, I could not join in with my friends’ conversations about periods, birth control, the morning-after pill – something that caused me a great deal of shame, suffering and confusion. But is that all being a woman is? If trans women are not women, according to these rules, I’m not either; though if I’m not a woman, what exactly am I?
One thing I have firmly believed for a long time is that, in the words of an album title by one of my favourite bands, Dirty Three: Whatever You Love, You Are. So this is what I love. The beach in Italy. Falling asleep cuddled up to my cats. Courgette flowers fried in tempura batter, cooked by my mum. A pint of Neck Oil at my favourite pub. Kanye West and Taylor Swift. Afrobeat-inflected jazz. Puns (the more puerile the better). Doing karaoke (badly). Singing along to Hamilton (whitely). Audrey Horne’s cherry trick in Twin Peaks. Films about men slowly losing their minds in jungles. Videos of animals on trampolines.
I don’t think there will ever come a point when I will be fully at peace with everything that has happened to me; at least, it won’t be any time soon. But, if nothing else, the process of writing this has felt beneficial: while I can’t change reality, I can reshape the narrative. I started watching The Sopranos in lockdown (finally – I know), and if we’ve learned anything about mental health – a key theme of the show – over these past decades, it’s that suffering in silence is neither healthy nor helpful.
There’s another saying, “Mal comune, mezzo gaudio” (“A trouble shared is a trouble halved”). No one is going to have gone through the exact same experiences I have. But whatever challenges you face, I have found that there is value in reading about how others handle the obstacles life has put in their way; no one, after all, gets through life unscathed. At a moment when the world is filled with so much suffering, the best we can hope for is to scramble to find some kind of meaning in it.
Who knows: perhaps one day I’ll look back on this time and conclude that Covid-19 marked an important turning point in my life. For now, though, I just need to get through it, three-good-things-a-day at a time.
Kathryn Bromwich is a commissioning editor on the Guardian
Source: The Guardian
Keyword: How long Covid forced me to confront my past and my identity | World news