I didn’t believe in it, the Methotrexate, over the last year I have tried medicine after medicine, been worn down by side effect after side effect, nothing has worked, nothing but Prednisone. Prednisone is taking a loan out on your health, you’re rich in the moment, you’re not in pain, you have energy, you can run, your skin glows, but each day you’re on it you’re stealing the health of a future you, you’re destroying your bones and teeth, you’re damaging your heart and gut, you’re thinning your skin, wasting your muscle. But you’re cash rich, so you don’t care, when the doctors make a hoo-hah over every milligram you’re taking, you want to say this works just leave me alone, it’s another me that has to deal with the consequences. I think this isn’t unique to Prednisone, it’s why we all fall into damaging cycles and behaviours, when something’s easy and feels good it’s hard to admit to yourself that you deserve better, and I have deserved better, I shouldn’t still be on Prednisone, at least at the dose I’m still on after a year of being sick. I should have advocated for myself, I should have called the hospital every day, but I didn’t, I just wanted to get on with my life.
But it’s worked, the Methotrexate. I feel like me. I didn’t believe them, I’d had my hopes dashed too many times. All along I have had the voice of the doctor I saw the first week I took the steroids, when we thought this was just hives, just superficial. I’d had hives everyday for two years until I was twelve years old and they’d just gone away one day, and when I asked the doctor if they would just go away again she said, what I feel to be quite callously, that I had just been lucky, I would have this for life. And so at some level, I didn’t believe I would ever have relief. But I do. I feel like me, I wake up and my bones don’t hurt, my head is clear, I take a bath and wonder at my skin, flat and uniform, no longer the terrain of some terrible country, the pink and black islands and archipelagos have been tamed, have faded into nothing. More than anything a sort of heaviness has receded, I no longer feel this deep sense of wrongness at my core. It doesn’t really match but the lines that come to me are by Walter Benjamin on the Hasidim’s idea of the world that will take form after the messiah comes:
“Everything there will be just as it is here. Just as our room is now, so it will be in the world to come; where our baby sleeps now, there too it will sleep in the other world. And the clothes we wear in this world, those too we will wear there. Everything will be as it is now, just a little different.”
The idea that between a mortal world and paradise there is just a little difference is something I find incredibly compelling. My days are the same now, just a little different. Being sick is like a weight that stops your mind from wandering, you can’t daydream when your body keeps on calling you back, pain and discomfort, they ground you in your body. So though the matter of your days is the same, get up, shower, eat, work, see family and friends, often somewhat protracted by tiredness and the leadeness that comes from being chronically ill, when you are healthy it’s the same life but you’re just doing these things not enduring them. Everything is the same but just a little different.
But this side of paradise there is something else to be reckoned with. When you’re chronically ill you live with uncertainty, you never know when the next flare will come, you’re constantly watching, jumping at the smallest sign that the tide may be rising, that whatever level of comfort you’ve become accustomed too will be snatched away, you brace yourself before the rug is pulled out from underneath you once more. But what about when you’re in remission, it may be a remission induced by a weekly medicine but it’s still a form of health, how do you go about living your life without constantly waiting for the other shoe to drop? How do you live life as a healthy person with a chronic illness?
At the start of this month we went to Amsterdam, in the Rijksmuseum we looked at the still lifes. When I studied art history at Oxford Dutch Golden Age painting was a key part of the course thanks to a Dutch professor and the Ashmolean’s wealth of Dutch paintings. What I was taught then was that the focus on still life at this time was an attempt by the Dutch to reconcile a conflict between the recent wealth the nation had amassed after freeing itself from Spanish rule and the rising Protestant belief that this wealth was an impediment to salvation. So these still lifes show flowers whose bloom will soon fade, bubbles about to burst, fruit about to rot, they represent the ephemerality of material wealth, they are what is called Memento Mori, literally meaning remember death. In my own painting I have stolen some references from Dutch still lifes, particularly from Clara Peeters, who was one of the few celebrated female artists from this time, her work often included pretzels and I’ve stolen this as a motif as a nod to this artist.
But I think there’s something here, in the still lifes, in the Memento Mori, at the paradox they hold. They are meant to remind the viewer and owner of their own mortality, that material wealth is fleeting and may lead to damnation, but they are also in themselves boasts about possessions and valuable objects in their own right. They point to a feeling of uncertainty and at an uneasy solution to a problem. But how does this help us with the problem of the shoe that may drop at any time? With no certainty of salvation ahead and paradise being perhaps just this life but a little different, I find myself compelled by the idea of Memento Vivere, to remember life, to live despite the fact everything may go to shit at some point, to point myself forward, to be present and enjoy life not waste it cowering under the fear it may be taken away. When you’re sick you’re able to distract yourself by obsessing over your own health, it stops you truly grieving all of the time you’ve lost, but in recovering I can see it will be all too easy to protect myself to within an inch of life for fear of sparking a flare. So I need to remember to live, though remission may be fleeting, may be ephemeral, it must be remembered, must be savoured. This is the uneasy bargain I’ve made with myself, the solution I’ve found. On this I’m led to a poem that was essential for me during lockdown, to these lines by the Persian poet Hafez:
Don't surrender your loneliness so quickly. Let it cut you more deep. Let it ferment and season you as few humans and even divine ingredients can.
I like this play between the Dutch still lifes and Hafez’s idea of the fermented life, the life seasoned by pain, a life that has rotted into something new, has been preserved, still the same but just a little different. A life to be savoured, that has been changed, and may still spoil, so must be enjoyed, feasted upon, now. One day the other shoe may drop but you must gobble up what you can now.