I believe that to get through this life you have to have some form of philosophy. It doesn’t have to be the philosophy of dead men or cultish self-help, but you need something. This is even more important when you are chronically ill. I realised recently that I had made no plans for how to live with my illness because I had convinced myself it would be gone by now, that it would be over by summer so there was no need to plan for how to live my life with a chronic illness. As I see the anniversary of the start of my illness looming I’ve lost hope that this will be over soon. I need a philosophy for how to deal with it because I can’t be bothered to despair at this anniversary, I also can’t be bothered to fight right now, to embark on another detox or meditation regime. This mindset has been reinforced by my recent diagnosis, one that I believe may change, but which at this moment is a genetic auto-inflammatory condition that no amount of ashwagandha or therapy will scrub from my genes. Whatever the case, as I have said in my previous essays, I believe I recovered from my last illness by accepting it, by learning to live with it, by learning to see my health like the tides, the flares and recovery as something natural to be worked with not something foreign and invasive to be unpicked and meticulously examined. So I have started to accept it, but this acceptance doesn’t make it any easier to live with right now, for that I need something more. One of the reasons it has felt urgent that I start to define my philosophy of living with a chronic illness is because I have been floored by a recent flare. Not a small bump, but a back to the beginning, what if even Prednisone doesn’t work and we have to call in the even bigger guns and I lose my fingers or nose, what if I don’t wake up tomorrow anxiety-inducing sort of flare.
It started with a PET scan. After several months of relatively good health, I was asked to reduce my Prednisone to have a PET scan, and I thought, sure I can handle that, I’ll have a bit of a flare but it will be fine. The PET scan was a strange experience. A 30 degree day in London, a blue sundress, arriving at UCH, navigating the corridors and lifts, into a cold room with miniature green saloon doors like a child’s playhouse. Then being injected with radioactive sugar, the cold tingling as it’s transferred from what looks like a very expensive photocopier into my body. The technician tries to be friendly and asks about my art, about exhibitions I recommend, I feel vulnerable, covered in bruises, freezing, discombobulated by this strange room and experience. After the small talk it’s silence until I'm disconnected from the photocopier and told to lie down for an hour. I listen to food podcasts and drift off, shivering on the plastic bed. The technician wakes me up, I’m told I have to pee before the scan, the door to the toilet is a strange sort of concertina and I can see the nurses through the cracks. Once I’m out I’m placed on a bed in the centre of a grey plastic doughnut. I don’t know what to do with my arms, the technician arranges them on my bent knees, she straps me into the bed and tells me quite emphatically not to move. But my arms are outstretched, unsupported, I think of the granny behind me in the queue, is she also supposed to hold her arms out for an hour? I feel like I’m back in a Kundalini class I took and then left halfway through, where we were told to shake our arms above our heads for twenty minutes, perhaps I should have stayed, I would have been prepared for this moment. I close my eyes as the doughnut begins to whir, not the staccato chant of an MRI, but a soft rhythmic hum, I think back to the previous week, and I feel my head resting on my love's shoulder as we sail back from Zogeria beach on a small sea bus, I hear the whirring engine sound, I try to convince myself I’m back on that boat, except it’s now cold and I have to do Kundalini exercises. In my head I see the Saronic sea, I see my family, sun-blushed and tired from swimming and lounging all day, I commit myself to hold the position for the next hour, telling myself I’m not in a cold sterile room in London but instead drifting at sea with all the people I love.
After the PET scan the flare begins, it starts to rage, I take more and more Prednisone but it doesn’t want to quiet down, I’m covered from head to toe in bruises, I wear long sleeves on hot days, my fingers ache and shake as I paint. I feel deformed, red raw, punctured, I think why didn’t I appreciate how stable I was, how did I forget what this was like, just as I forgot what it was to be sick all those years living well in Barcelona after Oxford, drinking, smoking, living off bread and tortilla, inhaling resin fumes all day, healthy and happy? I know why, Joni Mitchell knows why, you don’t know what you’ve got till it’s gone. But how then am I meant to fill my days, should I just be grateful every day I’m not more ill? Am I supposed to be happy that only my toes are purple today not my fingers, that there’s only a small bruise on my face, not a big one, that my left wrist hurts but not my right? I don’t think I can live with that sort of internal relativism, this is not the philosophy for me, for no other reason than that it doesn’t make me feel any bloody better. As I struggle to come to terms with days far more painful and difficult than I had become used to a stanza from a poem keeps returning to me:
honour the past
but welcome the future
(and dance your death
away at this wedding)
At first I think, I will dance when this recedes, I won’t waste my good health reorganising the bathroom cupboards or rewatching Grey’s Anatomy. I will suck the marrow out of life as Thoreau instructs, I won’t take for granted how good it is not to be in pain. . . but I know I will. You can’t always be aware of how lucky you have it, it would tie you into knots. But I have to grab hold of something. So I decide to embrace the flare as much as I can, I don’t say to myself it’s not that bad you’ve felt worse, I say, what can I do to make today mean something, even if it is only one small moment in the day? And so I go for a jog, the only form of exercise my body seems to accept at this moment, my legs don’t hurt that much so I jog around Clissold Park, after ten minutes I’m exhausted, but I carry on, at twenty-five minutes I’m nearly done, but a voice inside me says sprint, run as fast as you can! Fifteen minutes earlier I had nearly given up, but I dig down and find what seem to be limitless reserves of energy, I run like a child, as fast as I can, marvelling that however bleak the day will be, whatever happens, I can face it, that there is a part of me that can continue, even when I’m exhausted, even when my feet are bleeding, the soles thinned from the steroids, I can find joy in the spaces between my illness, joy in pure will, in subverting the voice inside my head that says I hurt, that says I’m tired, that says give up. And so I begin to build a philosophy of small wins. These acts are not about my health, they aren’t about being good, about recovery, they are about finding some small space of autonomy in my body and mind, planting a flag that says I was here today, even if it's only for myself to see. It's about creating one small thing when your life feels as if it's all about destruction, when your dreams and hopes are being torn down around you, and instead of mourning it all at once, instead of saying I can’t change that, you say, I can change this, do this, make this. Some days it won’t be possible, some days I stop the run halfway through the park, I abandon the painting, the writing, the plans with friends, I turn my face away from a beautiful sunset or vista. But what matters is that the small wins build on themselves, they start some sort of forward momentum, so that despite this in many ways being a very bleak time, the sadness and pain cannot penetrate these moments I create, and the burst of pure vitality I feel on this run, of agency, of power, creates a halo of light that stops the darkness of tomorrow's pain consuming me.
Another moment happens a week later, I go for blood tests, tube after tube, and when I leave the hospital the sky is ominous. I feel tired and nauseous, I can’t afford another taxi home and I want to be back at work as soon as possible. It’s another warm day, I rent a bike and as soon as I’m on it the rain starts to pour down, the air is thick with water, in seconds I’m soaked through as I begin my cycle home. At first, it's grim, terrifying, my tired little body propelling itself through the storm alone on the streets in the downpour. My birkenstocks have filled with water, I grip the handlebars to keep the rubber dry so my hands don’t slip off. But in the space between terror and despair I find a strange sort of ecstasy, in the streets of North London rivers have formed and I ride through them alone laughing like a maniac, I go through calf-deep puddles at speed. As I ride the last stretch through the park lightning begins to flash around me, but I’m grinning, amazed by the force of the sensations in my body. Not all the moments I have are like this one, but I begin to understand that hidden in the mundane living of a life, a life where daily tasks are made even more joyless by being accompanied by pain and discomfort, there are spaces where you can be fully present in your body and mind, spaces where the experience of pure existence is enough to power through the rest of the week, where the sublime lives, and that once you learn how to excavate them, manufacture them and embrace them, you can feast on these little moments of exhilaration for days, snacking on their memory.
I think I have only sketched out the rough edges of one part of a philosophy of how to endure the grief of losing a life free from daily pain and daily worry. I’m not preaching it, I’m not saying this will work for you, I’m just saying that there may be something else for you, some way to carry on, some way to turn your life on its side and say at this angle it looks much better, some way you can endure whatever it is you are going through. I don’t think life is about sucking the marrow out of it every day all day, we’ve got bills to pay, family to see, houses to clean, and more than that, a pursuit of a life of pure will and joy would be exhausting, I think my philosophy for now is about thinking back on the past day or week and having some reason to smile and to looking forward to what will do the same for me the next one. It’s a small win, but it’s something.