For I have known them all already, known them all:

Have known the evenings, mornings, afternoons,

I have measured out my life with coffee spoons;

 

I have not read a huge amount of poetry, but there are some poems, as there are paintings and places, that have become motifs for me and drift across my mind when needed. I have written about some others, but Prufrock, Prufrock is an anthem in my life, with its beauty, vastness and complexity, each year a different line has become slightly more weighted or a little more relevant. I remember first reading it in at seventeen, my friend’s mum was responsible for the Eliot estate and I finished my first essay about Eliot at his chair in her house, this situation has the sort of romanticism that my friend has always been able to cultivate, something that can seem forced or synthetic when others approach it, but has a sense of easy art when she does it. And perhaps it was the romantic quality of that first interaction with this poem that made it such an enduring force in my life.

 

When my grandfather, the painter Lucian Freud, was in his last years we would recite the poem together weekly, it was a sort of spell that brought him back from fear and distraction, his mind had become frayed and these words would always calm him, I have recited Prufrock in countless taxis traveling through London with him. The last time I read it it was at his funeral, I could almost hear his breathy refrain as he would echo the lines he loved the most as I read. This poem will always bind his memory to me. The image of a man becoming fragile in his later years were the ones that used to hurt when I read the poem:

 

I grow old ... I grow old ...

I shall wear the bottoms of my trousers rolled.

 

Shall I part my hair behind?   Do I dare to eat a peach?

I shall wear white flannel trousers, and walk upon the beach.

I have heard the mermaids singing, each to each.

 

I do not think that they will sing to me.

 

But always it was the one line that cut me most:

 

 I have measured out my life with coffee spoons

 

That line finds a place in my shadow, it pokes at a place where shame lives, Prufrock may be an anthem in my life, but that line, it comes back to me, it matches a deep feeling and belief that I have wasted the privileges I have been given, it is the voice of my superego. I’m from a unique type of family, a family where you hear your ancestor’s name on tv, radio, adverts, in classes, on pages, the name Freud, mostly as it refers to my grandfather’s grandfather, Sigmund Freud, is a cultural touchstone, and I am not unaware of the irony that it has taken a lot of therapy to understand and recognise the damage that bearing the weight of that mantle has done. 

 

Since a young age I have always felt the weight of my superego, that I should be doing more, should have done more. It’s a relief almost that the cadence of my own personal mantra has matched that of my generation’s own difficulties with “hustle culture” and “toxic productivity”. Burnout is something people refer to a lot at this age, but burnout has been something that has been a constant force in my life, the frequency of my life is modelled on small highs of productivity and creativity succeeded by deep lows of depression and tiredness. I am somebody that needs what I feel to be an enormous amount of rest, countless hours re-watching comforting shows, re-reading my favourite books, napping. It feels as if I should always be doing more, I should have written a book, I should have had more solo shows, I should have more money, I should have a nicer flat, I should volunteer, I should go out more,  I should have beautifully curated rooms, a beautifully curated wardrobe. I am abused by the tyranny of the should. Yet whenever I feel I gain some momentum on a good path, I go too far, I work countless hours, I will over exercise, manically clean, I will get high off of exhaustion, and when the deadline passes I will retreat to the covers. I think enviously of Proust writing in bed, when I take to bed I snack and re-read fantasy fiction and watch Grey’s Anatomy, and then, just to tuck me in nicely, I add a nice warm blanket of guilt so that I never truly rest, I am constantly resisting my fatigue and so these periods stretch out and I see my life, in coffee spoons, being measured out and poured down the drain, unsavoured.

 

And I have seen the eternal Footman hold my coat, and snicker,

And in short, I was afraid.

 

I don’t know if this fatigue stems from my autoimmunity, the reality is since the age of twelve I have been battling one strange illness after another and in the poetic version of my life, the fatigue that comes after any excursion is my body’s way of keeping me in line, and when I do not listen something will rise from the depths and drag me back down. When I became ill last year I had spent the year stretching myself thin, I had spent days locked up with an extrovert who does not need long stretches of shielding from the world, and I had tried to echo him and it had failed miserably. When I first got sick I didn’t have chronic fatigue, I had it acutely, that is, most of the time I felt fine, and then a few days here and there I would wake up feeling as if I was made of lead, magnetised to the sofa or bed, my life force draining with every step I took away from them. I remember one day when I bargained with myself that all I had to do was put away the laundry, so I folded the trousers, then read for an hour, then the tops, then napped for an hour, then the socks and pants, then had lunch and a lie down, then hung up the dresses, then a nap. But this wasn’t every day, those days charged me up for others filled with dynamism and action. 

 

I have been on varying doses of Prednisone for nearly a year now, and as I have said, at high doses Prednisone turns you into a zombie, you can’t sleep for more than a few hours at a time, the drug is artificial cortisol, it makes you the definition of one of my generation’s favourite states “tired but wired”. But at smaller doses, Prednisone is just a pleasant kick of energy in the morning, but because it’s a synthetic energy your body moves and your mind races but your bones become tired. Yet with Prednisone I rarely have days of exhaustion and Moon Face is a testament to the fact that I have been able to work all week then write and paint at the weekends, see my family, see my friends and not fully retreat to the covers. 

 

In my last essay I wrote how I had been diagnosed with a rare genetic auto-inflammatory disease, this diagnosis has changed to a question mark, my symptoms span many different autoimmune diseases, they can’t pen me into one. At the last appointment, after quite a lot of devastating news, most terrifying perhaps being the fact that my parlour trick of purple thumbs and veins was due to tiny blood clots caused by my body attacking the cells that regulate this process, the doctor asked me what bothered me more, my rashes and fevers or my joint pain? I don’t really think I was in the state to answer but I said the pain, running had become a balm to me, and anything that allowed me a few extra minutes would be a wonder, not to speak of the agonising typing in the week at work, and the feeling of frustration at being unable to open or lift things. So I was put on Methotrexate, originally and still today used as a chemotherapy agent, it is now used more often for autoimmune conditions to suppress and cure them, though this last part I am skeptical about. 

 

As with all of the many medicines I have taken over the last year I instantly took to the Mayo Clinic website (if it’s good enough for Yang, it’s good enough for me), to the NHS one and to Web MD, but also Facebook and TikTok. I watched countless videos of people, mostly with severe Rheumatoid Arthritis, talking about the Methotrexate hangover, how I could expect to lose 1-2 days a week recovering from the medicine, fatigue and nausea would now be on a weekly schedule. With the first dose, I followed someone on TikTok’s advice to take it at night so that the nausea would be lessened as the side effects would be most potent while I slept. I woke up with the worst hangover of my life, a New Year’s Day sort of hangover, like you’ve mixed every drink in a bar into a bottle and drunk it then carried on all night dancing without water. I felt exhausted and sick to my stomach, retching and wretched. Over two days I recovered but I started to dread the next week’s dose. For someone who feels they need rest from just the act of living, who feels time ticking by, who watches mournfully as each coffee spoon is wasted, is tipped out into nothingness, I was overwhelmed by a huge sense of loss and grief. 

 

There will be time to murder and create,

And time for all the works and days of hands

 

Prufrock tries to reassure me, but I am not ready to accept this, there is so much I want to do with my life. It’s only after writing out this essay that I see the irony of the coffee spoons. I have been warned to stay off autoimmune TikTok by others who have tread this path before me, but it’s a siren song, it calls to me, I scroll through other people with similar disorders and I feel a deep sense of comfort. This is “spoonie” TikTok, a moniker based on the “spoon theory” that suggests those with chronic illnesses have limited “spoons” and have to spend them on activities like a currency while others supposedly have limitless spoons and can go on and on without flagging. Though apparently coined by a Lupus sufferer to communicate to her friends what it’s like to live with a chronic illness, it’s an idea that I do understand but I resist. I was raised in a fairly stoic family and my mind instead wonders to the scene from the Matrix of Neo in the waiting room to meet the Oracle, to the declaration, “there is no spoon”,  I am drawn, however foolish it may be, to the impulse to put mind over matter. That is to say once again that I resist my fatigue, I resist my illness. There is a bleak fatalism in spoonie TikTok, I am so grateful to them, but also it leaves a bad taste in my mouth, despite Moon Face I am unbelievably reluctant to make this illness my identity, for it to be the only thing I see the world through. I see it instead more as a uniform, something I have to wear every day but it’s just something superficial, it may change how people treat me or how I see myself, but it’s only a fragment of my identity, a part, it shouldn’t stand for the whole. 

 

I’m not sure why I feel so ambivalent about the spoonies, a part of me says it’s because I’m terrified of being vulnerable and I’m jealous of these people who can just say “I hurt every day, and that’s not okay".  Another part says that in spoonie culture is the call of the abyss, that to accept this pain would open a fissure through which an ocean of more pain and discontent could flood through, this pain may have been organised and pacified by years of therapy but it’s still there, like lava just below the surface. Perhaps the loudest voice, the voice that despises the spoonies, says: “God, stop moaning, nobody cares, there’s people with it far worse than you, you’re tired, we’re all tired”, that responds to all this pain with my family’s favourite motto: “Worse things have happened at sea”. This voice says it is just so self-indulgent to document this, to publicise it. This is the voice that would have never have let me start Moon Face. But then I think of the work of art that threaded itself through my Art History education, the Laocoön, a Greek sculpture of a priest and his sons being devoured by a sea monster, a sculpture that was at times held up as the pinnacle of ancient art, a work that examines the idea of what it is to suffer. Art has the power to transform pain into something close to beauty, and though Moon Face isn’t in the same realm as the Laocoön, I think what separates it from most of the spoonie TikToks is that hopefully my writing doesn’t just dump my pain onto you and say, “this is awful, I’m going to share it with you.” It says let’s look at this, what is it like to experience doubt, pain, and suffering, what can I learn from this experience, about how I live in the world, about how we live our lives, is there something to be gained from it. It’s not about overcoming, but it's about the fact that in the extremes of life, in the bleak moments, the shape of what’s valuable in the rest of life takes form, is sifted out, and this process is only possible through examination, through excavating the experience.