When I first got sick I kept on saying, this will be gone by summer, I will overcome this as I did my last illness, it will be tough, but I have grit and can beat anything my body throws at me. Before I got sick I had read Dr. Gabor Maté’s When the Body Says No, where he describes the mechanisms by which stress and trauma can carve disease into the body, not in an abstract karmic way, but the effect each emotion has in the release of certain hormones and how when this happens repeatedly and is not discharged properly it sets the scene and can light the spark for the fire of illness. I thought, thank god I’ve had so much therapy, that I’ve dealt with my trauma, that I’m living an authentic life, that I won’t get sick again, and then, I got sick again.
This is the tightrope I’m currently walking on, what I’m trying to understand: how much is my illness a result of my genetic predisposition (autoimmunity runs in my family), my personal trauma (junkie Dad), ancestral trauma (my family’s flight from the holocaust), and how much is it due to my incredible neuroticism and smoking since I was seventeen. At the heart of my questions about why I am ill are the themes of control, responsibility and blame. How much control do I have over my health, from a medical perspective it seems to be very little, from other perspectives it seems absolute. I love wellness culture, I love to bathe in the illusion that chia seeds will somehow make me live years longer and drinking Oatly will keep my skin clear, I even trained as an Ashtanga teacher where we don’t practice on a full moon lest we risk losing the precious balance between our masculine and feminine energies. But I also love the takedowns of wellness culture, the hit pieces, the Gwyneth character assassinations, and the unveiling of the socio-economic causes of ill health, that it’s poverty, trauma and discrimination that often leads to sickness not a lack of adaptogens in the diet.
When I first got sick I went on a low histamine diet, but because I try not to eat animals very much, and a low histamine diet is essentially fresh meat and five vetted vegetables, this was deeply unpleasant for me. My beautiful partner bought delicious dover soles and roasted chickens, he made me meals filled with love, carefully structured to exclude dairy, grains, fermented products, and most fruits and vegetables. But I need chocolate, it is the stage of intuitive eating that worked for me, if I eat chocolate every day I can have a balanced diet, if I withhold it from myself everything goes out of the window, I start to finish family-sized packets of crisps and eat huge volumes of weird substitute foods to try and fill the void. So when my partner, after having cooked us offensively expensive pork chops, heard the rustling in the kitchen and found me halfway through a Waitrose own brand wagon wheel, I knew I was in trouble, I watched as he threw out all the chocolate and sweet treats in the house and a part of me wailed inside. This was an act of love, it’s what I couldn’t do myself. I struggled on and off with the histamine diet for about a month, I even tried to do it on Christmas day, but I broke with the Stilton, there was no Stilton, I needed it, it was Christmas, and I began scanning all the food delivery apps to see if somehow Stilton could be delivered to our house. The fact that I eat cheese so regularly despite the fact that my stomach really doesn’t like dairy was proof that my resolve to help manage my symptoms with diet was probably doomed from the start.
After I got sick, especially after reading Dr. Maté’s book, I thought, this is my fault, I got really stressed putting on my exhibition, I over-exercised, I obsessively cleaned, I grew distant from my partner over lockdown, and I started living in this exhausted, panicked state. I forgot what I had learnt from my previous illness which was essentially an extreme form of Zen, don’t give a fuck about anything, any outcome, anyone’s feelings, any obsessive thoughts, don’t be attached to anything. I had become attached, attached to my art, to its sales, to my job, to my boss's opinions, to my partner, to his love for me, to my body, to how it looked, to the things it could do. I had gotten sick, and it was my fault. I started to meditate every morning obsessively. Meditation has been a tool which I have picked up and put down at points in my life. But when I was sick I became obsessed that it was the only way I could re-regulate my system, to communicate to the part of me that was making me sick, to make myself calm down and feel safe. But I didn’t get better, I got worse.
I started painfully excavating the last year in therapy, hoping that if I could examine it in detail I could somehow make my body feel safe, and stop it from attacking itself. I came to the conclusion that my body’s response to feeling not cared for is to make itself very sick. It has happened roughly every ten years since I was born. At twelve years old I’d suffered from Chronic Urticaria and Angioedema, I’d basically had an allergic reaction to my own body every day for two years, my face would swell up, I looked like the elephant man, and I had to carry an EpiPen and take antihistamines every four hours. This, I believe, was the result of my parents splitting up, my mum starting a new job and I a new school, and feeling desperately alone and vulnerable, I became sick, and my body was saying ‘Help me, somebody take care of me!’. At Oxford, my grandfather died, I felt huge imposter syndrome, I felt alone and incapable, and my body, by attacking my brain, was essentially making it impossible for me to stay there. And now again, after lockdown, my body had been overstretched, my anxiety and neuroticism had started to eat away at me, I didn’t feel confident in my choices, in my art, in myself. Once again, my immune system stepped in and said, ‘I will make it okay, I will make everyone take care of you, I will make you take care of yourself’. When I had been sick at Oxford there had been so much doubt about whether I was truly physically sick from doctors and family, but now I speculated that my body had decided to take that question off the table, it made me sick in a purely physical way, a way that was unquestionable. All this illness, I honestly believe, stems from the same root that most people's pain and coping mechanisms come from: please can somebody take care of me? Why don’t I feel loved? Why is the love I have not firm and solid, why is it insecure, sometimes drowning, sometimes ephemeral?
But all these realisations didn’t cure me, I kept waiting for the day I would get better, but it didn’t come. So I tried other things, I tried acupuncture and Chinese herbs, I tried eating this way and that way. I tried Wim Hoff breathing. Visualisations. Vitamin D and Omega 3. Nothing has made me better. Only Prednisone, horrible, wonderful Prednisone made any true difference. Prednisone and my family. Long Saturdays spent eating and talking, playing with my niece and nephew, cackling with my sisters, these didn’t help my symptoms, but they made me feel safe and that everything would be okay, even if I never got better, even if I had to be on Prednisone forever. The only thing I wanted to do on my weekends was lie down on the daybed in our dining room and nap surrounded by the soft conversations of my family.
Looking back now, I think if anything once again the feeling that it was my fault for being sick, the shame, the feeling of impatience from myself and others for me to get better, didn’t help. I really want to believe in Dr. Maté, I want to believe in wellness culture, but at the same time I’m the product of a generation fuelled by instant gratification and I know deep down in my heart, that I probably will go into remission at some point, and things like yoga, therapy, acupuncture, a healthy diet, kindness to myself and others will speed up that process, but no change will instantly cure me. I picture my life ahead of me as something like Sisyphus’s, my Sisyphian body, which slowly, slowly pushes me up the hill of my desires, that tires each day under the stresses of my mind and life, that pushes inch by inch, day by day, slowly and surely, but which inevitably when the weight becomes too much, the incline too steep, is flattened by these attachments and desires, and the speed and force of the boulder can’t be stopped, the slow push can’t just begin again, you have to wait for the momentum to slow, follow it back down and begin again. One of the texts I have returned to when I feel lost is Camus’s Myth of Sisyphus which is about how to live in a world that doesn't make sense, in a universe with no god, no higher power and no meaning. The last line of that text will do for the ending of this one: ‘The struggle itself toward the heights is enough to fill a man’s heart. One must imagine Sisyphus happy.’