And when I think of my efforts then, I think of them in the present tense, because pain is a present-tense business. Illness involves such busywork! – Hilary Mantel
The downside of being young is that there’s so much time ahead for things to go wrong, and if things go wrong early, there’s a whole life to live with the ramifications. Life is unfair, your parents say. You nod, because it’s obvious. You might know people who have had some bad luck. You may have even had a few things go wrong yourself. Then something goes wrong with you. You alone. You get sick. It becomes apparent that you’re just a machine with working parts and those parts can break down at any minute. The experience of living becomes entirely a paranoid obsession of listening to your body run, and understanding nothing about what the gurgles, groans and murmurs mean; like when you tune anxious ears to the mechanical cracks and creaks of a plane taking off. All the things you thought were priorities – work, university, travel, relationships – are pushed to the side.
When I was twenty-one, I developed an autoimmune disease that tore through my digestive system and left me in need of multiple surgeries. The details are a story for another time, but after a few months in and out of hospital, and around a year of recovery, I returned to my life. But it wasn’t there waiting for me. Some of my friends had moved, others had changed friendship circles and my relationship broke down; I wasn’t interested in the same university courses and I lost my job. In fact, I wasn’t even interested in the same interests. I didn’t like the same movies. I had new favourite actors. In order to make it through my lengthy illness I had to become a new person. The doctors rebuilt my body; I rebuilt everything else.
Today, seven years on, I have enough distance from it all to feel a sense of stability. I’m also lucky enough to have been cured through three major operations (and a few minor). There are no real cures for what I had, they just cut all the disease out and sewed me up. It’s a bit like when I lost a few pieces for my Lego X-Wing Starfighter. Sure, it still holds itself together, but it’s just not the same. Nowadays there are newer, better fighters.
Whenever my story comes out among colleagues – usually after a few Friday night drinks – I’m astonished at how many people have stories of serious illness. If you work in a place where there’s a wide age range, like I do, then you’re bound to meet a few people traumatised from cancer. There’s always someone to sink a few wines and trade stories with. However, even in my relatively young friendship circle there are people with significant histories of illness.
One of my close friends developed a brain tumour in her pituitary gland when she was eighteen. She’s had multiple surgeries and describes her chronic pain as ‘one long headache from then to now’. Then to now being a decade in length. Even though she’s a natural sceptic she’s still tried everything from botox injections to meditation to acupuncture – each with little to no effect. She used to cup her hand over her right eye to create a vacuum, placing pressure there to relieve the pain.
My partner was in the passenger seat one day when the car stopped suddenly. The deceleration detached her retina. The car didn’t even hit anything. She needed three to four eye surgeries, after which she had to lay in a dark room on her back so as to not disturb the healing of the internal stitches. There is a black spot in the center of her vision and she scans around things to see them. She needs me to walk on her right side so she doesn’t bump into objects.
When I was in hospital I heard about someone with a comparable illness to me. Our diseases mirrored one another’s. I only saw him once but I was so drugged up I didn’t know if he was real. We both had autoimmune diseases, we were both around twenty years old, we both lost thirty kilograms, and we both went through emergency surgery. Somehow, I’m a teacher now. I don’t know what happened to him. But I hope he’s built a new life.
Common to all these stories is the fact that we were young and then suddenly our lives were made a lot more difficult. We all, for a time, probably stopped planning for the future, stopped thinking about disagreements or embarrassing things in our past and concentrated on our illnesses. There’s no present tense like a migraine, or waiting for stitches to heal in your eye, or slowly starving to death because the cells in your body are attacking themselves. Discomfort focuses your awareness of now.
But then – if you’re lucky – you get to work again. Make plans, see people, improve yourself. The hardest part to reconcile for me was the fact that I actually (very briefly) enjoyed being ill. It was an excuse for why I wasn’t successful. Finally I had something external to blame for why I wasn’t already famous, or doing a PhD. When the disease became hell, that feeling was buried. But it was, shamefully, there once.
Some have argued that one in ten suicides may be linked to chronic illness. It’s not hard to understand why. Pain makes the very act of existing exhausting. At least when you’re young you might be well-supported, but you also have the shame of being reduced in your prime. The desire to hide the illness for fear of being seen as weak or a downer can be overwhelming. The future seems very uncertain. It is uncertain. You may even find yourself asking, If I’m in pain now, what will it be like at forty, or fifty? Or how can I be someone’s parent? Who will look after me?
The thing worth remembering is that people really do get on with it. My old friend has, despite her headaches; my partner does even though she’s half-blind; I do, even though I’ve been dissected by doctors. If you saw us you probably wouldn’t know anything was wrong. This invisibility can be a privilege. Not always, but sometimes.
The problem with illness is that it robs you of pleasure. Young people are supposed to live in the moment, take risks, be spontaneous. But life in a hospital is a boring and cruel simulacra of life, with the minutiae of your body ticking like a machine being the best and only thing to focus on. In other words, you become self-obsessed, but not with gaining pleasure, more in avoiding pain. Even simple things like reading and watching TV become exhausting. You realise that there is actually an active part of imagination involved in both of those exercises, a part that pain and pills smother in fog. In Hilary Mantel’s devastating onomatopoeic Ink in the Blood: A Hospital Diary she demarcates the experience between visitor and patient:
For the visitor everything points outwards, to the release at the end of the visiting hour, and to the patient everything points inwards, and the furthest extension of her consciousness is not the rattle of car keys, the road home, the first drink of the evening, but the beep and plip-plop of monitors and drips, the flashing of figures on screens; these are how you register your existence, these are the way you matter.
And those are the good present-tense moments in hospital – boring but comfortable. Sometimes I had pain so bad it felt like someone had started a fire inside my pelvis. It was like being turned inside out and submerged in sulphuric acid. It was a quasi-spiritual experience. There were visions. A rebirth. I forgot myself. But mostly it just hurt for a long time. Hours actually. The doctors gave me Ketamine. I obeyed. I would have agreed to anything they asked: sold my family, clucked like a chicken, signed ‘fuck you’ on a baby’s forehead. But they took away my pain for free. We’re lucky our doctors are so kind.
Part of the difficulty of healing is re-adapting to future tense. When you’re well, events loom on the horizon, come past, and drift on by; but when you’re sick it’s like you fall out of your own time. Nothing really matters. Even six years after being sick I struggled with planning. My best friend’s wedding came up and all of a sudden I was there, and speaking in front of a crowd, and then it was over. The dilation of time sounds hyperbolic – I suppose it is. But sickness asserts itself as the only thing to care about. You become horribly obsessed with your own condition. Solipsistic; at worst, self-congratulatory and onanistic.
I’m in a very strange position now where I know what it felt like to be very sick but also to recover almost completely. I don’t take medications any longer. I’ve adapted to my post-op body. But there are so many people neck-deep in suffering, unable to plan for the future; a stranger to their past, living entirely in an eternal and painful present.
In the same account on her sickness, Mantel decries Virginia Woolf’s assertion in On Being Ill of the ‘poverty of language’ we have to accurately describe illness. ‘Pain’, Mantel says ‘may pass beyond language, but it doesn’t start beyond it. The torture chamber is where people “speak”.’ Mantel has a point: for some of us the pain can be manageable, describable; for a time anyway, before it passes into the abstract. I’ll leave you with a passage from Mantel on pain, and let you decide whether you believe the description of pain passes beyond her use of language:
For the sufferer, [Woolf] says, there is ‘nothing ready made’. Then what of the whole vocabulary of singing aches, of spasms, of strictures and cramps; the gouging pain, the drilling pain, the pricking and pinching, the throbbing, burning, stinging, smarting, flaying? All good words. All old words. No one’s pain is so special that the devil’s dictionary of anguish has not anticipated it.