Settling in for the long haul

A couple of tweets flicked across my screen in the past week or so from people I don’t know asking how, perhaps a year or two in, the knowledge settles across your shoulders that you’re not recovering from long covid and may not ever fully recover, you, well, deal? No surprise; I have thoughts and feelings about this. But, surprise (to me anyway); the series of moments when it seeps into your bones that no one and nothing is coming to rescue you are emotionally just really fucking hard, and I’ve shied away from thinking too much about this period of my life. Partly because I read the tweets from these people who may have this and far worse ahead of them, and I don’t want to make any of it the tiniest, least perceptible bit harder. But also because that time for me was a long interstitial of brain fog and denial, hopes raised and dashed, chasing after a doctor or a programme or sure fire cure of some kind and just being repeatedly floored by disappointment while slowly realising I was no longer, really, a person in the world, a person with friends and fun and any kind of over-arching telos in my life, and partly because I HATE stories that resolve with ‘I just had to get used to it and when I did, things didn’t get better but I felt slightly better about them.’

Reader, I just had to get used to it.

This will be a digressive piece. I come at these things and flit away, a bit like the tweets that flash up from people saying stuff like ‘my parents are starting to believe the doctors and are telling me it’s psychological, I just don’t want to be well, I have literally nowhere else to go.’ I mean, what do you do with that? You can say, well, this is a mass disabling event, there are so many more of you now that even doctors are staying sick and occasionally even saying ‘ok it’s real now even I get it’, so there’s more chance you’ll be believed and hundreds of times more money going into real research than did for the last couple of decades. But that’s not going to help the college student who’s returned home to a stalled life and a support system that seemed encompassing at first, but which is now coldly, methodically, pulling its arms away when the kid doesn’t recover in a socially acceptable period of time. (And that scenario, to be fair, is still the Cadillac of long covid support systems.)

I hid for two years in graduate school, the first year in a wonderful and academically undemanding programme with a tiny, lovely class. I wrote an essay about Walter Benjamin and interactive media that winter, and I remember pulling each sentence rather brutally from the morass of my former abilities and piling them on top of each other. Let’s just say the angel of history made sense to me in a way she had not, before. Minute on minute, I could barely make the letters settle into words, forget about forming sentences or ideas, but day on day it turned out I could do it. It just took a higher threshold of discomfort than I’d previously believed manageable, and about eight times longer. I’m so glad I learnt this. The knowledge that impossibly difficult intellectual tasks can be worked through piecemeal – not in darts and dashes of caffeinated brilliance – was not natural to my temperament, and it’s why I can still do things.

It’s a very bourgeois thing to be able to hide out in grad school. I’m always embarrassed when people remark on how many degrees I have. It put me into financial penury for quite a few years, but it felt worth it to still outwardly look like a person who was moving forward in life, not someone whose clock had stopped in August 1998 when I failed to heal from glandular fever. All that is harder now in Britain, as Tories systematically steam open the institutional creases people like me could fold ourselves into, and dismantle the social welfare that would have held many others as they waited to be well. I started off with moderate M.E. and now, much of the time, I would say it is mild.

(To imagine what that’s like, remember a time you had real, proper flu – not just a heavy cold – and bring yourself back to the first couple of days you were well enough to get out of bed but not to leave your home. How do I conduct what superficially looks like a normal life while counting the sometimes quite vicious opportunity cost of walking the dogs or buying groceries? Peaks, troughs and, especially, habituation. You’d be surprised what you can get used to, until you do.)

So what’s below comes from someone who’s never had severe ME/CFS – the kind where you need to lie in bed with no sensory stimulation at all – and had a decade or less of persistently moderate ME/CFS. It’s about how I habituated, or; how I learnt to lie not with my words but my deeds.

What worked for me was sick-hacks, the ultimate operation of neo-liberalism at the individual level. I’ve written about his before; stuff like only taking stairs when no one I knew would see, always commuting and travelling alone so I could build in sit-downs, turning up half way through group activities so I could stay on the sideline and not move around too much, bathing less frequently and never, ever showering in the morning. But basically the answer is I was sick all the time, sick in a way that’s unimaginable to a well person, because if they felt that bad they’d take time off. When you’re not ever recovering, you don’t take time off. (And you can’t – if I’d confided in employers early on, I’d have been unemployable and would have defaulted on my education loan. Many years in I did confide, and went part-time, and the lifting of that burden of secrecy and expectation was life-changing.) ME/CFS is defined by fatigue that isn’t cured by rest. A bone-deep resistance to rest sets in when you know how much time it demands and how it will never, ever be satisfied. The ultimate sick-hack is just pretending to be well, whatever the personal cost.

I managed from my mid-twenties onward by mercilessly slashing any discretionary activities– namely, hobbies, fitness or a social or romantic life – that took an ounce of energy away from work. By year three I could routinely cosplay a well person for 8 hours of gainful employment a day. There was simply no other way to make it, financially. I found in-between places and ways to live. I’m endlessly fascinated by how, in a massive pinball machine of infinite-seeming possible decisions, we stumble on marginally favourable social affordances. What worked for me was living in a succession of foreign countries where my only role was to work and the only people I knew were through work. It seemed normal to only have work friends, seeing them as little as possible and always leaving after the second drink. What worked was going home on Friday night and literally not seeing another person till I went back to work on Monday morning. Compartmentalising life so each set of people I knew assumed the others I referred to were the ones I was more frequently seeing, in my normal, normal life. Oddly enough, flying constantly and working weird, time zone inappropriate hours for international organisations where it was normal to be mind-altered by exhaustion and occasionally just go dark for a couple of days. That was my pattern by about ten years into it. It’s surprisingly easy to act like a well person and be believed, if you hide literally everything else.

Even now in its third decade, when I think my ME/CFS is objectively milder – though my husband disagrees, and he bears much of its weight – I unconsciously build long periods of nothing into my days and months. I’m self-employed and typically deliver writing work for clients in other countries, who I rarely see in person. I don’t use up energy commuting or participating in the socialising and the administrative and political busy-work of a normal workplace. I charge a day-rate because that’s what’s normal in my industry, but I almost never work a full day, not as most people understand it, anyway. (I recently had a project that required 10-hour days of hard concentration for about six weeks, and it made me sicker than I’ve been in years. This is why I rarely take on new clients with unknown expectations around tempo.) I’m lucky that I have a difficult to replicate skill – writing – and a solid and unusual body of knowledge – technology policy – which mean I can sell my time at a premium and live on part-time earnings. I don’t have a recipe for achieving this that’s not ‘spend a decade and a half pretending to be well while acquiring high-value knowledge, skills and networks’. I’m also married, for a decade now, and if the wheels ever come permanently off my bus, my partner’s income can support us both. (In fact, he wishes I would do a lot less, partly because he loves me and sees the daily distress, and also because it makes me hard to live with. You could say he went into this with his eyes open, but nobody does who doesn’t already have a decade or so of experience with life-changing chronic illness under their belt, either their own or someone else’s.)

I think it’s important to spell this financial and support stuff out, because making enough money to manage, day to day, while working a small number of billable hours is a lot of what helped me drive down my ME/CFS till it was just ‘mild’. And it’s what’s finally made room for me to write longer-form work, albeit that also takes a stupidly long time. With all the luck and privilege I’ve had, I still manage only by ruthlessly organising my life around the constantly shifting lacunae this illness makes as it morphs insidiously each decade I’ve had it.

I swerve most thickening friendships because they come with a requirement to show up. People who live more or less normally get hurt when the thing I managed once or twice – by cutting out something else – turns out not to be something I can or will do regularly. I cut and hack and simplify, and in this way I reduce people’s social expectations of me to be someone who shows up. I sneak off-stage and just let people assume the hours and days they fill with activity are the same for me, but are spent with other people. In fact, I’ll be lying in a darkened room, recovering and trying to find the energy for the next normie cosplay activity. And I love normie cosplay activities! I commit to them wholeheartedly, not least because this illness is fickle and nasty and you may as well be hung for a sheep as a lamb. After or sometimes during, I quietly withdraw and go back and lie down in the dark again. I absolutely cannot live with other people, both because my resistance to rest makes much needed sleep so fragile, but also because I am rigidly protective of the knowledge of my limits. I can write this in an essay on the Internet but if you stay in my house for three nights you could easily never guess. It manifests unexpectedly. I currently look quite a bit younger than my age, likely down to spending a couple of decades living in this way. Or, to be more accurate, not-living. That’s an awful lot of festivals and sun holidays and late nights I’ve skipped. I bring it up not as a stealth-boast but as a weird little data-point – living like someone on their late eighties from when you’re twenty-six can make you look ever so slightly different to others your age.

I’m sharing this slightly orthogonal stuff not to request sympathy – poor me! I look younger! – but to illustrate the differences of we who also walk among the well. I have a very good deal. It’s easily fine in many important ways. (See privilege, above.) It’s just another variant of being human, and probably an increasingly common one. For most people who suddenly and then gradually adapt their lives to strange conditions – be it living in the Arctic or under autocracy or just being indeterminately unwell – the smaller, tougher spaces can actually feel ok, much of the time. They have their own rewards. But let’s be clear, we’d all rather just live fully and well, earning each wrinkle and cautionary tale.

I don’t recommend sick-hacks per se, not to the newly chronically ill. They’re a lonely and unreconstructed way to live. So many millennials are ill with long covid and they just wouldn’t even think of hiding it, like it would never occur to them to accept accommodatory BS like the 2nd wave feminism my generation believed would somehow incrementally fix things. Good for them. I’m glad to see them making connections on social media and puzzling it through together. The fact of them and many others doing this means I’m now much more ‘out’ about my limits, something that feels weird and vulnerable and obscurely shaming, but which I have to think is healthier overall.

There’s no steady state. Covid is coming for all of us and each time it’s a roll of the dice. I’ve had it twice now. The first time knocked me out for about six months, and the second time did sharply alien and unpleasant things to my brain. I’m so scared that collectively all our brains are getting fucked, and we won’t be able to sustain concentration in the immersive and demanding story-webs I believe are necessary to keep imagining our large and interlinked society into existence. I worry people like me will succumb to premature dementias as a result of the brain damage we’ve incurred, and there’s nothing we can do about it. And there are so many of us. And all of it just as our institutions are self-destructing and we need amplified and deep-form subjectivity to solve planetary-level hard problems.

When I was nineteen or twenty I had three great, secret fears. One, that I would not be able to have children. That evil thought terrified me and just scoured my heart, because in what felt like a bottomless absence of usable self-knowledge, the only thing I truly knew about myself was I wanted to be a mother. The second fear, after I saw Todd Haynes’ film, Safe, was that I would get some undefinable illness and become socially and psychologically marooned. I kept these fears to myself because as any writer knows you don’t write these things or you write them into existence, but they happened anyway. The third is that my brain will clog with plaque and broken memory, and while I hesitate in the dilemma of needing to end this beautiful life before I’m ready but while I still can, I’ll miss my chance.

I saw a tweet today from a Northern Irish woman, Rebecca Logan, an NHS nurse who got covid in the first wave:

“So this happened yesterday…I had to buy an electric wheelchair. My heart is breaking & I’ve cried for days but I’m suffocated by my lack of control & independence so here I am bravely trying to embrace my new wheels & hopefully getting a bit of that back ???? #TreatLongCovid”

The picture that goes with it shows Rebecca sitting in her new wheelchair in her back garden, wearing a lovely teal-coloured top and leopard print leggings, her arms raised in the V for victory symbol, and her face a Mona Lisa layering of jubilance, resignation, determination and, maybe I’m projecting here, subliminal grief.

Flash-flood of feeling when I saw her. Much of it the joy that spurts unexpectedly from a hard, tiny crack in something once supple, green and whole? I’m so glad Rebecca has her wheelchair and will get outside again. There’ll be stuff she can do that she hasn’t been able, and it will feel fabulous. And in each of those new excursions a mourning and disbelief for the life that went before and that still flows around her in the form of people with shopping bags and evening plans untouched and untroubled by the bony finger of fate.

You know when you’re mourning someone deeply and at some point, perhaps, you have the intuition that you could let some of that pain self-encapsulate and just burp it out in a bubble to float off into the world, carried on winds with names like Sirocco or Chinook that you’ll never feel warming your skin, and you’d be happy for it to see the world, but you can’t let the pain go because then it will be gone? Gone the pain, gone the person. Incurable, stupid, shitty illnesses – ones that lack all the narrative structure and stepping stones of, say, cancer, with its treatments and outcomes, or neurological decline with its zooming towards the inevitable – they both demand and deny the necessary mourning for the person you once were and could have been. There are no protocols and next steps, no month’s mind and anniversaries. You mourn alone as you’re told it’s nothing, you’re just imagining it.

You can’t rush this, and anyway, you don’t always want to. You become a different person, both smaller and bigger. The life you still feel you can almost reach out and touch gradually becomes less vivid, less immediate, until it really does seem like it belongs to someone else, someone who’s gone. You would care about her but she’s no longer here, just by the simple operation of time.

There’s no one moment when you realise what you had was gone and will not be restored. Or, there are many such moments but you go back and forth. (So much of this is both metaphor and heightened instance of other, more general human experiences; that there’s no going back before September 11 or the election of a fascist, that we blew past the exits to the climate and food and inequality crisis decades ago, that at every stage of life we’re mourning what’s no longer possible and trying to accommodate ourselves with all the grace we can muster to what is.)

We sense the other timelines running parallel in the semi-darkness, even if we can’t jump the tracks, the other people we could have been. They never really go away. It’s a punctuated equilibrium of acceptance and denial. I know we’re all supposed to agree that denial is unhealthy (and not, as they say, a river in Egypt), but truly? I think it has its place. Denial gets you through the first few years. Denial lets you believe that kale and ginger smoothie might be the answer, or acupuncture, or the doctor whose waiting list you might just finaigle your way onto, in a world where there aren’t yet answers, therapies or doctors who can do more – and this is the rare and absolute limit – than say ‘I’m sorry. We don’t understand it yet. I believe you. You might recover, or you might not, and I don’t know why. In the meantime, this may help some symptoms.’ Yes, I’m all for denial.

A friend of mine died last Saturday night. A really good friend and neighbour. One of those friendships you’re so grateful for and – one of the joys of middle age – recognise immediately and tend to as something precious and unasked for. I visited twice before I left on a months-long trip, knowing I might not see him again. We talked about that freely, and when I said I hoped he would be there when I come back in three months, he said he sort of hoped so, but also didn’t want to be so sick for so long. He had suffered a lot in the past few years, his world getting smaller in sharp stutters – first walking places went, then public transport, then going somewhere with disabled access in a car, then in the last year walking to the end of the road, leaving the house, leaving his bed. He was grumpy but essentially habituated to that, but when he stopped being able to read and be incredibly well-informed to discuss politics and geo-politics, that’s when he started to feel enough was enough. He still didn’t want to die, though. When I left, the last time, I put my head back around the door to fix his face in my mind. He knew why, of course. I knew that demanded something of him but I took it anyway. As I walked home I realised I’d always carried into his room the unconscious idea that he could still get back what he’d lost, and we could still recreate a very simple but special outing we’d enjoyed three years ago. It wasn’t something I ever said, but it was always in my mind when we talked – the sense of possibility and fun we would yet have. Even as he was less and less able to do anything he loved, our visits (of three of us actually, including his wife) always carried both the memory and hope of enjoyable and stimulating things we did together. And, that’s not a bad thing? To hold contradictory and untested feelings and ideas about things being better than they objectively are, and to bring those into a sickroom and have them inflect our last few conversations. We laughed so much, even that last day. I mean, I didn’t think he would get well, but I always held out hope he could temporarily get better. And in the meantime, until the next outing, we would have the fun we’d always had. But we were still able to say goodbye, and for it to be goodbye.

Now, thousands of miles away, I both believe he is dead and know I will not believe it till I go back to their house in September and he’s not there. I think we manage losses by both believing and not believing them, letting them sink in to varying degrees of acceptance over time, and in between, holding their non-existence near but not inside, like speech bubbles hovering in a cartoon panel. I don’t think there’s anything wrong with any of that.

The same get-to-the-happy-ending drive that causes well people to be impatient with the unwell is perhaps present in our own expectations that we will accept our limitations and lost lives and move on, quickly and for good. But for most people it’s not like that. There are false hopes and false dawns, short remissions and other countervailing forces. And that’s alright, even, I think, necessary.

When I was doing what turned out to be five unsuccessful rounds of IVF (and many more failed embryo transfers) I learnt that the dreaded two-week-wait after transfer and before the pregnancy test could also feel like going on an emotional holiday from my life. It was the indeterminate between-time, when I was both pregnant and not-pregnant. Nothing I did or wanted or said had any bearing on what the result would be – the universe is spectacularly uninterested in my feelings about the fission of certain human cells. So I would count forward the months, imagine the birth, indulge my fantasy of success in any way I wanted. Twins! Why not? It didn’t matter either way, whether I dreamed or not, and the moments were rare when it was possible to do it when the dream just might turn out to be true, so why not enjoy it? As time went on and it became clear the prospects of success had all but vanished, and my health and our finances were being obliterated by it all, those two-week-waits became a silent, one-person festival for me. (In fairness, Ed was deployed for several rounds.) They were the only time I permitted myself unfettered hope. I will always be glad I had them. I still have them, inside. I always will.

So, don’t rush toward acceptance. It’ll come, or it won’t. And maybe you will be one of the ones who gets well. I hope so hard for that. Sit with it. Lie down with it. Or float away on warm, imagined breezes. What else are you going to do with this time, anyway?