By Kylie MaslenNon-fictionText Publishing

Show Me Where It Hurts

My body dictates who I am. I work the way I do because of my body, I vote the way I do because of my body and I live the way I do because of my body. It is not my body that is at fault, but society’s failure to deal with bodies like mine. I might be in pain, but I am whole. I refuse to have the difficult parts cropped out. 

Kylie Maslen has been living with invisible illness for twenty years—more than half her life. Its impact is felt in every aspect of her day-to-day existence: from work to dating; from her fears for what the future holds to her difficulty getting out of bed some mornings. 

Through pop music, art, literature, TV, film and online culture, Maslen explores the lived experience of invisible illness with sensitivity and wit, drawing back the veil on a reality many struggle—or refuse—to recognise. Show Me Where it Hurts is a powerful collection of essays that speak to those who have encountered the brush-off from doctors, faced endless tests and treatments, and endured chronic pain and suffering. But it is also a bridge reaching out to partners, families, friends, colleagues, doctors: all those who want to better understand what life looks like when you cannot simply show others where it hurts.

Portrait of Kylie Maslen

Kylie Maslen

Kylie Maslen is a writer and critic. Her work has appeared in the GuardianMeanjinKill Your DarlingsAdelaide ReviewCrikey and Junkee, among other outlets. In 2018 she was the recipient of the Kill Your Darlings New Critics Award, and her essay ‘I’m Trying to Tell You I’m Not Okay’ was longlisted for the Lifted Brow & RMIT non/fictionLab Prize for Experimental Non-fiction. She lives in Adelaide on Kaurna Country.

Judges’ report

In her author’s note to Show Me Where it Hurts, Kylie Maslen expresses the hope that her personal account of chronic physical and mental illness, including endometriosis and bipolar disorder, will provide some kinship to those undergoing similar experiences. Mindful of the book’s potential to retraumatise readers for whom this subject matter is all too close to home, she includes content warnings at various points for topics including mental health treatment, discussion of drug and alcohol addiction, and reproductive coercion. 

While Show Me Where it Hurts succeeds in providing this sense of kinship, it should not be judged only in terms of its usefulness as a handbook to chronic illness and disability. It’s also a compelling memoir in its own right, with interesting reflections on topics such as pop culture, insecure housing, and the quest to experience physical pleasure in a body that has become habituated to pain but still harbours ‘the longing to be touched by someone not performing a medical examination’. 

Maslen describes a culture and medical system that routinely dismisses female pain as either non-existent, exaggerated, or simply an unfortunate aspect of life that women should just learn to tolerate. Like many others denied appropriate treatment and support, Maslen resorts to self-medicating with alcohol and excessive over-the-counter painkillers before coming to accept that while ‘it will always be storm season in this body I inhabit’, there is nonetheless ‘beauty to be found’.

Covid-19 has made social isolation a near-universal experience during 2020. Maslen’s description of both its impact and the measures that she and others confined to their homes by illness and disability use to overcome it now resonate far more widely than they did only a few months ago.

Extract

I’m Trying to Tell You I’m Not Okay

People ask, ‘How are you?’

What I want to say:

Do you ever feel like this? Because I don’t think this should be happening.

Do you ever start to cross the road too late to make it to the other side without running, knowing that you’re not going to run?

Do you ever have days when you’re not in pain? What does that feel like?

What I actually say:

‘I’m okay.’

‘I’m tired, but okay.’

‘I’m tired.’

Doctors ask, ‘When did the pain start?’

What I want to say:

I don’t remember a time without it.

What I actually say:

‘Twenty years ago.’

Doctors then ask, ‘What about this level of pain?’

What I want to say:

Twenty years ago.

Fuck, I’m tired.

What I actually say:

‘It’s been this acute for four days.’

Doctors ask, ‘How have you been feeling since I saw you last?’

What I want to say:

I’m running out of words.

What I actually say:

‘About the same.’

Doctors: ‘Give that to me as a number from one to ten.’

My life of chronic illness and chronic pain is one of resting for hours and hours.

I feel guilty for all the times I’m forced to cancel plans because I don’t have the energy to socialise after work, or it’s raining and humidity increases my pain, or the pain has been so intense for days on end that I can’t get rid of the dark cloud above my head.

It’s not just that I feel bad for missing the parties, dinners, dates and coffees. It’s also that I second-guess my relationships because of all of the special occasions I wasn’t part of.

Does she believe me?

Do they think I don’t like them?

Is he angry I missed his wedding?

I think of all the children in my life whose growth I track only in pictures, the precious hours not spent with ageing relatives, the quality time that passes me by that could see acquaintances become close friends.

Some days the pain leaves me without the energy to do anything but eat, stay upright and think clearly about the meds I need to take. Then my need to rest becomes unavoidable. My body is a car trying to run on empty.

Other days I find myself with a quarter of a tank. I feel the pain always, but I have been granted the freedom—albeit a temporary one—to rejoin my friends and loved ones.

Though, inevitably, that freedom is taken away.

 

I can picture the two of us in Mum’s living room. That house, that couch, means I was seventeen and my brother fifteen. We had recently been uprooted by our parents’ difficult separation. That house, that couch, signified a physical settling-down. Emotionally, however, we were still shaken. We were arguably too old for cartoons, but considered ourselves connoisseurs of them anyway. We needed comfort, we needed simplicity and we needed to laugh. So whenever my brother and I could, we sat down and watched cartoons together for an hour or two, relaxing into the silly but heartwarming stories that wrapped up neatly in twenty-two minutes—the inverse of the family drama still playing out in the shadows.

The ’90s felt like a golden age of animation: technology leapt ahead and, suddenly, what had looked like jolting sketches across a screen seemed warm and flowing. Blue’s Clues and Rugrats were made for small children, but we loved them all the same. Arthur was pitched slightly older, but its earnest sincerity kept it wholesome. Pinky and the Brain and Daria were our favourites, taking their audiences to darker and more sarcastic places. Rocko’s Modern Life and SpongeBob SquarePants made us laugh out loud. The Simpsons, Futurama and South Park would screen later in the evening, but our time together was cemented in the hours between coming home from school and dinner. That was our chance to laugh and relax before homework inevitably took us to our separate rooms. The memory of those hours spent with my brother is a precious part of my life: here we were laughing and being juvenile, unintentionally making up for lost time.

 

Things people say:

‘You must be so on top of all the good shows!’

‘I wish I had that much time to watch TV!’

‘So do you have book recommendations for me? I would love to read more.’

There are times when I can concentrate enough to read. Other times I’m not able to focus on the page, and all I have the energy for is binge-watching an entire television series.

But when I can’t sleep, or I’m numb from meds, or I’m doubled over in pain and need a distraction, I find myself looking to Nickelodeon or Cartoon Network for comfort. During daytime hours the channels program contemporary cartoons, with slicker graphics and less familiar storylines. I enjoy some of them, but it’s the evening programming of the cartoons from my teenage years that takes me back to that warm and cosy place. Arthur is still on earlier than Futurama, but now SpongeBob seems to run reliably in those long dark hours after 10 p.m.

When I tell people that I watch SpongeBob a lot, the response is generally something along the lines of ‘they had to be really high to make that show’, or ‘that’s so fun to watch when you’re stoned’. I cringe a little: the effects of a couple of Endone might not be that far from smoking a joint, but I bristle at the association with stoner culture. I am not the American college student with the munchies, covered in fluorescent yellow dust and laughing hysterically. I am not actively seeking this high. Cartoons, specifically SpongeBob, are a refuge amid a longing for a life without drugs and pain. Again I am unwittingly trying to wind back the clock.

The Victorian Premier’s Literary Awards shortlist