On becoming phosphorescent
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On becoming phosphorescent
The novelist John Green recently published a collection of essays called The Anthropocene Reviewed: Essays on a Human-Centered Planet. During a particularly bad flare-up of my Crohn’s disease in the early summer of 2021, I lay in bed staring at the ceiling for hours and hours on end, listening to the audiobook of the collection, narrated by the author. Green writes about a time near the beginning of the COVID-19 pandemic when he was suddenly struck down with a strange and terrifying illness called labyrinthitis. Caused by inflammation of the inner ear, the condition causes intense dizziness, falling, vertigo, nausea, vomiting, light-headedness and blurred vision. Reflecting on his diagnosis, Green writes:
‘It’s tempting to make labyrinthitis a metaphor: my life lacked balance and so I was devastated by a balance disorder. But the symbolisation of disease is what I’ve always tried to write against in my novels, where, I hope, cancer and mental illness are portrayed not as battles to be won, or as symbolic manifestations of character flaws, but as illnesses – to be lived through as well as one can.’
Green’s conclusion: ‘I did not get labyrinthitis because the world wanted to teach me a lesson about balance.’
I am sitting in a doctor’s office, and I am crying. The doctor is impatient with me. I tell him something is wrong.
‘The pain is much worse,’ I say. ‘It’s worse than it’s ever been.’
I hate hearing myself say things like this, as though I am exaggerating, being self-indulgent. But I am not. What I am saying is true.
‘Something is wrong. I know something is wrong.’
I’ve been treated for Crohn’s disease and endometriosis for the past several years, with varying degrees of success. The result is near constant abdominal pain, fevers, vomiting, sometimes collapsing. I have learned not to be alarmed by this. I want to tell him that. I want him to understand that I know that what I am expected to do is to tolerate pain. And that means that when I say something is wrong, something really is wrong.
But he does not believe me.
‘I think your stomach is just blocked up from taking too many painkillers,’ he says.
I pause, wondering if he will notice or correct the profound logical problem at play in this sentence.
‘But …’ I say, and trail off.
‘But you’ve got things the wrong way round there,’ I say, when I recover the words from my throat. ‘The painkillers can’t be the cause of the pain. The pain came before the painkillers. I wouldn’t have needed to take painkillers if there wasn’t pain.’
He pauses, considers.
‘It’s a bit of a chicken and egg situation,’ he says.
‘No,’ I say. ‘It’s not at all like that. The causal link only goes in one direction. I was in pain: I took painkillers. Why would I have taken painkillers before there was pain?’
The unspoken answer hangs in the room.
Some weeks later, I am seeing him again. Again, I am crying. Again, he is impatient.
But this time I have proof. I explain to him that I have recently undergone a calprotectin test, the widely accepted gold-standard test to identify any inflammation of the bowel, which is to say, active Crohn’s disease.
The test says that any number above 200 µg/g is a positive result for inflammation. My test came back with a figure of 1,391 µg/g. ‘Off the charts,’ they had told me in the hospital. ‘Stonkingly high,’ were the words the resident gastroenterologist used.
But this is a different doctor sitting here now, and he doesn’t agree.
‘It could be a red herring,’ he says.
I pause, waiting for him to explain, but he does not.
‘What do you mean?’
‘A red herring,’ he says again, as if this will clear things up.
‘A red herring for what?’
‘I’m not sure,’ he says. The test could be an indication that some one-off infective event has taken place.
He really used those words: ‘one-off infective event’. I think about what my copy editor in my staff journalism job would say. ‘That is a meaningless phrase, intended only to obfuscate. Say what you mean. Or at least admit that you don’t know what you mean, or that you don’t know what to say.’
He said red herring again.
‘But that’s a metaphor,’ I said. ‘There’s not a literal red fish in my stomach causing me pain. I don’t come to you for metaphors. That’s what I write books for.’
Say what you mean.
It occurs to me later that this interaction is exactly what Susan Sontag was describing in her work Illness as Metaphor. She writes, ‘death is the obscene mystery, the ultimate affront, the thing that cannot be controlled. It can only be denied.’ As a result, she says, we force illness to become metaphor because we cannot look squarely at it. We cannot bear it. She writes, ‘my subject is not physical illness itself but the uses of illness as a figure or metaphor. My point is that illness is not a metaphor, and that the most truthful way of regarding illness – and the healthiest way of being ill – is one most purified of, most resistant to, metaphoric thinking.’
It’s my doctor’s job to look squarely at illness, to call it what it is. And yet he can’t bring himself to do it. All he can say is ‘red herring’, over and over and over again until I give up on myself and leave.
But this time was different. I didn’t give up on myself. I just kept hearing myself thinking, but I know that something is wrong. And I did.
I go to see another doctor. I cry again. I say, ‘Something’s wrong.’
He says, ‘Is this right? Did you have a calprotectin test come back with a score of 1,391?’
‘Yes,’ I say.
‘That’s very alarming,’ he says.
‘I thought so too,’ I say, ‘but my other doctor said it was a red herring.’
‘A red herring.’
He looks like he might cry now, too.
We do more tests. We chase up the results of a procedure I’d had done three months earlier that no one had looked at.
The procedure is what’s called a capsule endoscopy. It’s where you swallow a giant tablet with a camera inside, and it takes video and images of your digestive tract.
I’d emailed the first doctor so many times to get the results of that test, but he never replied. Now, the new doctor and I have the results in front of us.
Here’s what they show: lesions all through my stomach and bowel, probably from Crohn’s disease. Blood. Erosions. Then, when the camera gets to the part of my small bowel where the new, worsening pain is, it gets stuck. A section of the bowel is collapsed.
The report says: ‘At this juncture, camera suffers severe trauma.’
Yep, I think to the camera. Same.
Something was different this time. In years gone by, I would have accepted that first doctor’s explanation. I would have thought, he’s probably right. It is a red herring. I probably did cause it by taking too many painkillers. I’m over-egging it.
But for the first time in my life, I didn’t do that. I insisted on the version of reality that I perceived, even though I knew I wasn’t being believed.
Reflecting on this, I wondered what had changed. And here’s what I think the answer is: I am lucky enough to be living through a moment in which we are finally starting to understand the degree of gaslighting that goes on when it comes to the bodies of women and people of all marginalised genders, classes and ethnicities. There is finally a chorus of voices saying, ‘Believe me.’ But more importantly, saying, ‘Even if you don’t believe me, I believe me, and that’s more powerful than your doubt. Watch me prove it.’
The chorus of voices is growing stronger by the minute. It’s a chorus made up of the owners of bodies that have been historically, chronically, desperately overlooked and disbelieved. Bodies that have never been trusted.
The bodies of women and marginalised genders have forever been dismissed as malingering, indulgent, weak. But now we are insisting on our pain, bringing it out into the light, into the open. Together we are speaking up, and speaking up, I have learned, can change everything.
I recently came across a diary entry I made as a teenager in which my frustrated younger self, reeling from a poorly written and poorly graded essay, had written, ‘Sometimes words don’t work.’
I feel for the girl who wrote in that diary because I know what it’s like to have moments in which you lose faith in the thing you love the most. But I want to show her the future and say, ‘Sometimes, they do.’
I recently discovered the philosopher Miranda Fricker’s new theory of epistemology – the study of knowledge, and how we know what we know – that relates to the idea of shared concepts. In her new book, Epistemic Injustice: Power and the Ethics of Knowing, Fricker describes two new and exciting concepts in the study of knowledge. The first is the idea of testimonial injustice. This refers to the way in which our society attributes a lower level of credibility to some peoples’ knowledge compared to others and as a result attributes lower levels of meaning to those experiences.
Testimonial injustice is something women and people of marginalised genders grow up with: it’s the knowledge that if we speak about certain things, we will not be believed. Fricker also writes about what she terms ‘hermeneutical injustice’: structural prejudices that arise as a result of marginalised communities’ lived experiences being excluded from our society’s shared concepts and shared understanding of the polity. Shared concepts are how we interpret the world and how we understand each other.
I recently wrote about how Fricker’s concepts can help us explain why #MeToo and the chorus of voices speaking up about sexual assault has fundamentally and permanently altered our shared concepts about abuse. I think the exact same can be said about illness and pain in the bodies of those who have historically not been believed.
One of the most profound and moving books I have read in recent years is Ill Feelings by Alice Hattrick (Fitzcarraldo Editions, August 2021). It is a truly exquisite account of Hattrick’s own illness, belittled and disbelieved for much of her life, and an account of the effect that has on a person. When it comes to illness, she writes, it seems there is no way out of shame.
Hattrick suffers with myalgic encephalomyelitis, or ME, formerly known as chronic fatigue syndrome, and has done for as long as she can remember. Her mother suffers from the same ill feelings, the same condition, and their symptoms mimic and speak to one another.
ME is a debilitating condition with no known cause. One theory behind what causes it is that when patients get infected with a virus or other illness, cells in their brains called microglial cells, which control inflammation, can become permanently changed by the process of trying to fight the illness. Interestingly, some otherwise-healthy patients who became ill with COVID-19 during the outbreak have found themselves suffering with what is becoming known as “Long Covid” – a disease that looks to doctors like a very similar condition to ME – a long-term and intractable condition resulting from an acute infection from which the body never fully recovers.
ME is the perfect example of an invisible illness because it is invisible in both its physical manifestations – flare-ups often leave sufferers totally bed-bound, meaning that they are hidden away when at their worst – and in its dismissal from the status of real disability by the medical establishment for so long.
But not anymore. What I realised reading Hattrick’s book is this: our own insistence on the truth of our lives and our illnesses is now so strong, so clear-eyed and lucid, captured by Hattrick’s prose and poise, that the historically prejudiced systems that have excluded this truth will have no choice but to change in its wake. I really think we are at the portal of a new world. We have, together, created new shared concepts that can no longer be ignored.
‘My mother and I have symptoms of illness without any known cause – according them the status of feelings, confined to our bodies, or our sense of them as ill. Ill – bad, sick, wrong – is also how I learned to feel about my diagnosis. Those ill feelings were not really my own, but reflections of societal ones, which deemed people with ME/CFS as fakers, scroungers, lazy and privileged, and indeed all chronically ill people are less-than-human, deserving of fewer rights, less pay, and less security and care.’
‘I always knew my illness was a form of love.’
Those words brought home to me a new truth that has been crystallising in my heart for some time. Writing about illness is a form of love. Creating these new concepts is how we care for one another, perhaps the most important form of care there is. How beautiful is that?
Another book that fundamentally shifted my perspective in this last month – and another that I read while bed-bound with an intractable Crohn’s flare-up – is Julia Baird’s Phosphorescence: On Awe, Wonder and Things that Sustain You when the World Goes Dark. It’s a book unlike any other, a survey of all the ways in which the planet produces its own light amid the darkness, a phenomenon known in natural sciences as phosphorescence, which Baird calls ‘the light within’ or ‘living light’. It describes the beauty of cuttlefish, sea fireflies that provided a natural way of lighting up maps during the Second World War II, the sunset, the ocean.
Here’s what connects all ways of becoming phosphorescent, at least in my reading of the book: finding stillness and silence in suffering. Finding a place of acceptance, a place to exist. Drawing inspiration from all the ways that the universe teaches us to hold on to awe, and wonder, and having your breath taken away, even when things feel unbearable. Finding a light within.
Baird connects this to her own terrifying experience of illness. A hugely successful and much-loved writer and broadcast journalist in Australia, and the host of the country’s nightly news programme, Baird suddenly found herself bloated and beset by fatigue and ill feelings. Doctors put it down to exhaustion and overwork. But then, one day in June, she was struck by unbearable pain and rushed to hospital, only to discover she had advanced-stage ovarian cancer. She didn’t know if she would live to see the end of that year, she writes. ‘There’s something about writing a will in which small children are the main beneficiaries that makes the world stop.’
This feeling of the world stopping is at the heart of illness, for me, and also at the heart of the new community we are creating. That immobility is almost indescribable, which makes the act of describing it one of the purest forms of love, I think: describing it, as hard as it is, is a way to care for those who also feel adrift. A way to reach out, across the void, into the stopped lives of others, and say you are not alone. This act of distilling the feeling of stasis and silence is desperately hard-won. It comes from hours and months and years of being confined to the frozen continent of ill feelings, which can be the loneliest place imaginable.
‘What you do is think, and watch. You sit or lie in a bed, on a couch, on a hospital trolley and think. As the formidable English social theorist Harriet Martineau wrote in 1844 in her book Life in the Sick-Room, ‘Nothing is more impossible to represent in words … than what it is to lie on the verge of life and watch, with nothing to do but think, and learn from what we behold’.’
‘We need to learn how to regard and pay attention, to mine our inner strength, and accept the possibility that we can emerge from pain and grow by moonlight – in times of darkness. It is in this way, I believe, that we can become phosphorescent.’
‘What I found,’ she writes, ‘is much like what Greek philosophers called ataraxia, a suspended kind of calm in which you can find a surprising strength. One that can be developed quietly, in a world of dark, lit faintly by the moon.’
In my most recent protracted period of stillness, I also read Gargoyles by Harriet Mercer, another stunning memoir about illness and recovery. Mercer was struck down by pain just after her fortieth birthday and was rushed to hospital, where she was diagnosed with a ruptured angiomyolipoma on her kidney – a rare and very dangerous condition that threatened her life. After months of intensive care and recovery, Mercer limped back towards a version of normal life. But the stillness changed her, too, and she writes about it beautifully.
‘Yet when I returned home, it was as if I had been speaking another language while away. I was shocked to find giant holes in my vocabulary, and even found myself stuttering. I spent the recuperative period reading: replenishing my stash of words, and constantly checking them in the dictionary. Our language may be interrupted in pain; the words, though, are always there.’
The words, though, are always there.
The title of Mercer’s memoir is a reference to the terrifying visions of gargoyles that haunted her while in hospital. The visions kept her awake for six weeks. But, she concludes in her book, in her own version of becoming phosphorescent, in a paraphrased version of the famous line from the medieval poet Rumi, ‘The wound is the place where the light enters you … I’m grateful my illness happened, gargoyles and all. It was the richest of life lessons.’
Hattrick’s book showed me something else about the idea of stillness that I have been trying to grapple with for a long time: those periods in which we are forced by illness to be motionless, to take leave of our lives, the times we have always been taught to feel ashamed of, are when we learn to become phosphorescent. It is in these hours that we learn to cultivate the light within, and it is excruciatingly hard work. I have always been embarrassed about my need for rest, but I am starting to understand, thanks to Hattrick and Baird, that my enforced rest is productive. In a society that wants you to feel weak for stopping, embracing stillness is revolutionary. It’s what has allowed us to stand on the cusp of the new era, ushered in by writing about illness that is only possible through the excruciating act of living through it, regarding it, allowing it just to be.
‘Chronic illnesses are bound to time; the time of being sick, most probably without end. You might not feel acutely ill every day. You might feel well-enough for a few months or years, and later relapse back into being severely unwell – as if you had never got any better. It will make you think that sometimes you have never been well, even if, at times, you believed you were well-enough. Sometimes it will make you think that you are too well to be sick, and too sick to be well.’
Then, in perhaps my favourite sentence written in recent years: ‘I live in sick time, inside my loop of pain. And in that time, I gather.’ And in this, perhaps, is the most important point of all: insisting on the truth of our bodies is a form of insisting on the validity of liminality. That still space, the space in which we gather. It is writing against the idea of a dichotomy between being ‘sick’ and being ‘cured’, with the latter being the default and the former a shameful deviation. It is writing, instead, into the truth that once we accept the in-between space, we can properly acknowledge all the complex truths of our bodies and our health – physical, emotional, psychological – and in having this regard for ourselves, we can use that stillness to insist on the best version of our own lives, whatever that may look like to others.
About the author
Lucia Osborne-Crowley is a writer and journalist. Her news reporting and literary work has appeared in Granta, the Sunday Times, HuffPost UK, the Guardian, ABC News, Meanjin, The Lifted Brow and others. Lucia works as a staff reporter for Law360.
I Choose Elena is her first book. Her second book, My Body Keeps Your Secrets: Dispatches on Shame and Reclamation, is published 2 September 2021.
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