The Mean Well
on having cancer in late capitalism, moral vanity, useful fictions, and the myth of The Good Person
Susan Sontag has two cars parked in an underground garage across the street from the entrance to The Afterlife. Adhered to each vehicle is a black and white bumper sticker. On the rear fender of the metallic beige - let's call this colour: champignon - 1978 Saab 99 Turbo sedan:
SIMILES MAKE US SICK!
NO METAPHORS 4 ILLNESS!
And on the back window of the dark blue 2001 Chevy Silverado 1500 pick up:
ILLNESS AS METAPHOR IS A SOCIAL DISEASE
Attempts have been made to tear the stickers off. The impulsive clawing patterns across the edges of the texts suggest their failed removal was inspired by frantic sanctimony. The censor seemingly ablaze with conviction that they are a vessel for the righteous; that they are without doubt: A Good Person.
I am sitting in a hospital waiting room wondering what happened to Susan Sontag's famous bear suit.
I am in the waiting room toilet staring myself down in the mirror.
I have spent the last year trying not to die.
My 4 year old believes there has been a small crustacean living uninvited in my right breast, snapping at my lymph nodes with its mean little pincers, and unleashing havoc in a sideways scuttling motion as it summoned horror upon my body. The German noun ‘Krebs’ offers a concrete creaturely image. A crab is a tangible totem to pray to, or devil to cast out, infinitely preferable to the edgeless abyss of menace conjured by the English: ‘cancer’, the word I grew up with.
People are terrified of cancer. Rightfully so. It is a thief of life whether it kills you or not. It’s a rigged structural lottery. So much existentially depends on where you get it in the body, under which insurance system, if any, and who will listen to what you say about it if you are ever asked. This could be a metaphor for the racialised capitalism in which the prevalence of the disease is metastasising at increasing speed: more people, earlier, repeatedly. In 2019, there were 3.26 million new cancer diagnoses among under-50s, this was a 79% increase of the 1990 figure. From the global population, the largest number of cases and associated deaths in this age group were breast cancer. Cancer might move like a metaphor for the violent system we try to live in, but it is more usefully understood as one of its symptoms. Where the limits of the metaphor are reached, the blindspots in political imagination begin. There is, afterall, no cure for cancer.
The Crab is a useful fiction for a child, and its lack of sentimentality is my favourite part. It rendered my illness and its treatment comprehensible to a four year old who loves me and who has also been hosted in my body.
“Is the krebs weg, mama?”
I am asked repeatedly in Denglish.
“Yes, as far as we know, The Crab is gone. The medicine made it weak and the surgeries took it out. The radiation will hopefully make it feel like it can't come back.”
A useful fiction for a child is not the same thing as a conspiracy of metaphors by adults. Who scramble to costume the facts of living and dying in pathos pantomime.
I am terrified of cancer.
I am terrified of suffocating under the sentimentality of the storytelling that surrounds it; stories that move in a lateral creepy crawl. I cannot stomach the countless disingenuous narratives built to avoid looking death in the eye. Beloved Patients are hijacked with perverse metaphors of going to war as the market for bombs that rain down to kill and mutilate other people’s 4 year old children booms. Pink coded bereavements for a femininity that I’m not convinced I am mourning are everywhere I look.
“You’re a fighter.”
Write multiple social media followers sliding unsolicited into my DMs.
“Be positive.”
Command people who clearly don't know me at all.
“It could be worse!”
Sing the grinning chorus who have never had a cancer diagnosis.
I recognise this dissociative relativism as a bad faith tactic against desire and dreaming, political and otherwise. I’ve heard it all my life. It is one of the many casual muzzles of good intentions.
I am required to make an announcement.
I am clearing my throat.
I am tapping the mic.
“Is this thing on?”
Feedback pierces the atmosphere.
I am wincing.
“It is my obligation to pledge allegiance to the following caveat.”
More feedback.
“What I am describing is not the case for every one, all the time. I am - of course - immensely grateful to the people who cared for me during my recent illness of a grave and serious nature. In which I inhabited the role of The Beloved Patient. Especially the ones who did so genuinely and with great stamina, and it ain’t over yet!”
High hat.
A lone cough.
A bottle rattles under a seat.
“I know this gratitude may help you stay with me, dear reader. It has come to my attention that many need to know I am an at least cursory subscriber to being A Good Person, and therefore deserving. To appear ungrateful is to go too far; outside the city gates to a criminal place. Like a land acknowledgement or a condemnation of a terrorist group - I must perform the rite, no matter how rote, how hollowed of meaning, how monotone in delivery. I must say the words or fall out of favour, voiding the contract of your benevolent tolerance. The catechism of supplication to transactional generosity must be performed.”
Mic drop made to look like an accident.
Much like The Perfect Victim, to become The Beloved Patient is to risk becoming a surface upon which close friends and the most tenuous of acquaintances alike might play out their moral vanity. Cancer is an open audition for lovers of the role of Being Good. Mistaking my tumour for a truce, enemies get in touch with saccharine salvos. People I barely know, or find unbearable, let it be known that they would like to come to my house with flowers.
“Absolutely fucking not.”
I snarl, shooting the messenger.
“Slay.”
Snaps The Crab.
“Let’s isolate!”
We high five, laughing, then weeping. For hours.
Back at the underground parking lot, A Good Person with sticky fingers has popped the trunk on Susan's champignon Saab and is holding a gun to The Beloved Patient’s head.
“If you don’t like this gesture I’m making that you explicitly said you didn’t want anyone to make, then fuck off and die after all you ungrateful fucking bitch. die die die of your fucking fucking cancer afterfuckingall die die die suffer suffer and die. I was only trying to help. After all, I was only trying to help. After all.”
I was only trying to help
is a sleight of hand that invests in a perverse economy with two vectors: The Burden of Grace and The Burden of Grief. Who carries who and what happens when they get too heavy? How long can one carry without a witness? What is the value of a thankless task? Ask any one of the billions of people raising a child, or caring for a dying parent, lover, or friend as A Good Person reminds them she has social services on speed dial.
The burden of grief is to not be monstrous when you feel most like an animal.
In a culture of pathological individualism there is an insistence that all pain, all grief, is contained to an impossibly brief palette of words and behaviours. Everything else, you better do alone and out of sight. There is no container for the viscous fluids flinging out of my face as I howl and stagger and punch the mattress and stub my toe. There is no container for my angry ache. It is too disruptive. It is too much too much too much. Recently added to the list of respectability requirements for The Individual - next to advocating for yourself and managing your symptoms - is to learning to regulate your emotions. Even when you are starving. Even when you are witnessing blatant genocidal injustice of a shocking magnitude. Even when alienation brings the ache. Like arbitrary sleep training for infants: get a handle on yourself kid, I need to get back to work.
“It is no measure of health to be well adjusted to a profoundly sick society.”
Said Sinead O’Connor right before she died of a broken heart following the death of her youngest son.
The burden of grace is gratitude for a gift that maims you.
I am horrified by the callous administration of hormone interventions in breast cancer treatment.
Zoladex. Tamoxifen. Letrozole. Yes, they save lives. They can also viciously erode the quality of living - thinking, fucking, moving. I cry whenever I say this to the doctors. They tell me not to be ashamed of my feelings. I tell them I'm not ashamed, I don't doubt how I feel, I am justifiably furious. I’m told not to worry, rage is a common symptom. Of what exactly, I wonder.
Eventually, a doctor admits:
"I see what we do to people here."
Prior to this confession, we have literally been screaming at each other.
“Thank you.”
I am truly grateful.
I am fascinated by the importance of that qualifier, truly.
I am fascinated by cancer.
In the same way I was fascinated by giving birth. Death comes into the room meaning business and no one says a word about her. Like a villain, you cannot say her name. A similarly profound tacit agreement in the social contract is no tears in shared spaces with other breast cancer patients. I never saw a drop in the Brustzentrum waiting room. I never spilt a drop there either. Nor in the chemo lounge. And then I met Frau Falke.
I am in the hospital bed after my first lumpectomy.
I insist on wearing an open backed surgical gown rather than pajamas because it feels more method. I am re-reading Sick Woman Theory and the kookaburra hand puppet my child has loaned me as a friend for the occasion floats around the bed. I mistakenly believe the surgeon has taken out all the cancer and I am luxuriating in a kind of surrender to what I falsely understand as the arrival of a longed-for threshold of renewal.
Shortly after lunch on the second afternoon, a new patient is wheeled into the room. A postoperative bird of prey. Stunned but coming round. Quietly indignant through a sharp but lowered gaze. She is taking the temperature of the room through her peripheral vision. Pronounced beak nose already conducting the direction of everyone’s attention. Feedback pierces the atmosphere. I’ve been in enough fights to know that psychic warfare is on its way to room 2 of ward 731B.
By the time dinner has been brought in, Frau Falke is throwing language into the centre of the room. She talks and talks. She wants us to mean well enough to catch all of her words. To make them as important to us as they are to her. She does not feel important. She picks up the corner of my robe from the floor and puts it on the bed because she is tidying up because she is A Good Person. Cleanliness is next to godliness and so she has a licence to endlessly fidget with the slightly out of place.
Since Frau Falke arrived I have gone from twirling a pencil above my reading with a fluffy hand puppet tucked under my arm, to furiously transcribing my experience in real time with my headphones on. I have gone from languidly lazing on my bed, to sitting upright and angling my laptop on my knees to defend myself from eye contact.
Frau Falke cannot leave the room without producing language. She is taking her own tray out because it is a life raft. Ordnung. Because she cannot rest and she wants to unrest the rest of us so she doesn’t have to be with herself. I want to be with myself. Oh lord how I want to be with myself. To write and move my body and learn the secrets of this time.
I am trying not to look up. I write. I type. I write. I type.
She marauders (she is back in the room). Her drains clacking. Her slippers shuffling. She is back in the room and she wants to throw more language, wants to re-straighten the objects she re-straightened just a few short moments ago. I know that the only way to bear her presence is through the universal lube of compassion. I have to lube the stiffened joint. I must be the lube. I cannot bare to be the lube.
She speaks so loudly I can hear her through my headphones with the music up. Up she gets suddenly and hits her head on the TV. I pretend I haven’t seen. I don’t know how else to conjure dignity for either of us. She is making sharp gestures with her hands. She is calling herself an idiot.
I recognise the impulse.
I know where it comes from. Spewing language into the corners. Spraying it across surfaces. Unwieldy. Desperate. Throwing it up against the wall to see if it sticks. To see if it stains. To see what it does. What it does is make a mess no one wants to look at. I am typing furiously now. I want to write furtive but I don't know what it means with any certainty. She is muttering. She is prowling around. Prowler. Creepy crawler. She is crying at the window but wrestling with the tears. She knows it breaks the no crying covenant. But come on, girl, let it out. Come on. Set us all free. But Frau Falke is not a comrade. Frau Falke understands domination as the best strategy to orient oneself in space. Even when she sleeps, she snores like a portal to the underworld, filling the room with herself.
Meanwhile, I am busy in the shambolic core of my own oncological vision quest directing language to a different purpose. Or is it the same? I would be lying if I said I didn’t see myself in Frau Falke. Frau Falke and I are both desperately trying not to die.
I am told repeatedly that I am strong.
I have a secret to tell you.
People come sniffing around cancer. They drape their morbid fascination on the back of their chair and ask their tactless questions. They want to get the measure, the temperature, the taste of it. They’re trying to understand if they could do it themselves. The answer, inevitably, is: yes. You show up at the treatment center, you receive the treatments.
Cancer treatments happen to you whether you are ‘strong’ or not. You show up, you receive the chemical intervention. You go home. Debased and going insane to varying degrees, but fundamentally signed up to a methodology that the only way out is through. Many people go to work. Most because they have no choice.
“You are so strong” is a folly of exceptionalism. It is adjacent to the capitalist canon of pulling oneself up by the bootstraps. Another deadly metaphor, which insists that adversity can be overcome through sheer force of will. That you can hard work your way out of any hell hole. Politically nauseating to me, politically fatal for every body.
Two hard things to do in life are learning how to mourn and learning how to not be a liability in an emergency. Both are about knowing how not to get in the way. There’s a time for sucking it up. There’s a time for letting it all the way out. Both are critical. Wisdom is knowing the difference. You learn by doing. You learn through the grace of others.
When people check in to see how you are, you mostly edit. Because you feel monstrous and too much and the grip on reality is loose.
I find it easier to lie.
If you are told
“Your feelings are valid.”
one more time - as though being spoken to by an AI therapy bot - you might hurt someone.
“I hear you.”
Is rote language against the real. Is a thing you can say. Is a lie between friends. Is as comforting as being told to calm down.
I don’t have shame around my feelings, but you do.
Pauline Oliveros tells me she has a rule.
“Listen to everything all the time, and remind yourself when you are not listening.”
We fail to be helpful by failing to listen. We fail to listen when we are more concerned with how we will seem than how we will be of service. We fail to listen lest we hear a break in the seal of our self concept.
The urge to produce language
The urge to fix
The urge to save
The urge to make small
The urge to test the manageability of the situation
The urge to tidy up
The urge to do so as fast as possible
The urge to know better
The urge to squirm about mortality
The urge to know if its really that bad
The urge to say that everything is going to be ok
(It’s not)
The urge to ignore clearly articulated requests
The urge to overthink as an urge to center oneself because you grew up learning to hide in plain sight
The urge to write to a relative stranger and tell them that your mum had breast cancer 3 times and you are sure she would be open to talking to you, a relative stranger
The urge to offer the world and then ghost away after two months
The urge to be reckless with the desperate vulnerability of a friend
The urge to sublimate the urgent question of death under capitalism into ordering flower delivery on an app on your phone
The temple of the subreddit
The sanctity of the friends who know how to cut the shit
The salvation of the senders of actually magic gifts
The safe space of other people with cancer
The transcendence of the contract between you and your kid, between you and your lover, between you and the people who can really see you
The revelation of what chemo is
The revelation of the edge of life
The revelation of how badly doctors insert cannulas compared to nurses
The revelation of the relative brief brush with this shit compared to the stage 4 homies
The revelation of the tragic limits we have imposed on ourselves
The revelation of the shapes of fear
“How are you today babe?”
“Well hon, Chemotherapy and Zoladex are a kind of abject durational psychedelia that have pushed me to the absolute limit of my will to live. Radical hormonal intervention with scant mental health support. Crying and screaming at doctors. Crying and screaming at people’s dumb ideas and fumbled gestures. Crying and screaming. Crying and screaming and nodding off at the dinner table because I have been abandoned by red blood cells. Panic attacks at the Emergency waiting room. Panic attacks in the cab on the way to the Emergency waiting room. Panic attacks because they want to use my port. A simple infection can turn to sepsis within hours did you know that? Posting in the subreddit to get the real talk on how high to push a fever before you call an ambulance. Vampyric neutropenic slumbers. Flat on my back with my hands folded over my heart at 3 in the afternoon. Drifting off. Sailing close to death. Hi Death. Tanking estrogen. Contempt. Episodes of ecstatic gratitude for being alive. Crying and laughing because my child is divine. Crying and laughing because I married a real one. Crying and laughing on the phone to other people who grew up around bad dads and other desperados, because they know that fantasies of violence are a psychic balm to the formerly abused. So this is what it is. So this is treatment - to be brought as close to dying as possible within an institutional framework. Where the apparent ‘systemic approach’ is improvisation with the medical technologies available. The tumour conference has spoken. I praise god I spent 2 decades taking heroic amounts of drugs, and really feeling for Karen in the suburbs, or the puritanical in general, who are just like: WHAT THE FUCK IS HAPPENING TO ME!!?! A walk with a friend round the lake is like edging a k-hole. Nudging at the place where I used to entertain shame. The nausea. The nausea. Get ahead of the nausea. The dexamethasone and listening to one Lost Girls track on repeat for 7 hours. Convinced once again standing at the kitchen bench with my laptop that I would be an incredible DJ. Amphetamine Conviction. I get nostalgic. Addict Alert. I am feeling ripped off. And heavily medicated. And when I catch myself in the bathroom mirror I am shocked by my full body baldness and my bloated face and glad I lied to the eyebrow microblading lady about the start date of my treatment. And this morning I had to snap on a glove to physically remove the diabolically constipated shit from my ass and it took 2 hours and I legitimately whimpered several times and it shocked me and I have developed some kind of tweaking agoraphobia and I am extremely extremely irritable and on the first week after months of chemo where I felt some semblance of return to a self I recognise multiple cancer themed gifts arrived in the post suggesting scientifically sketchy solutions to my ‘situation’ in apparent denial of the fact that I have a medical team who I am in incredibly close consultation with and have been having treatment for months and with language that I have made clear I loathe and I am perpetually bothered by the burden of grace and grief in real time because of these things. How are you babe?”
I pull a card on New Year’s Day, 2024.
The card is Death.
“It’s not what it looks like! It's a metaphor for renewal!”
I look on my phone to distract myself.
The internet is Death.
It is exactly what it looks like.
This past year I have remembered that the best thing to say when you don’t know what to say is: ‘I don’t know what to say’. Trust floods right in like some divine balm.
I cannot imagine what you are going through.
The Mean Well was originally commissioned for Delfi Magazin where it appeared in German translation by Maxi Wallenhorst.
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