For this year’s International Day of People with Disability, Write-ability is featuring two very different storytellers, memoirist and 2019 Write-ability Fellow MJ McArthur and graphic artist Matt Robertson, one of the winners of this year’s Dulcie Stone Writing Awards.
“Invisible” chronicles MJ McArthur’s quest to recover her mental and physical health after a series of devastating diagnoses of chronic illnesses. These illnesses are invisible to others and are often suffered in secret due to their deeply personal and sometimes shameful effects. The subject matter below is confronting: McArthur’s writing is honest and unflinching, and covers matters that few people talk about openly.
Content warning: this piece includes descriptions of medical procedures and references anxiety and depression.
Extract from Invisible.
At my first follow-up appointment after surgery, Dr Bond recaps the findings.
“It was a four-hour operation. We removed endometriosis from your bladder, ovaries, belly-button, and your abdominal wall. But you’ve still got disease in three sites: it’s all through your rectum and your appendix. And your left fallopian tube is worrisome - it’s wrapped around a nodule of endometriosis; too close to major blood vessels to remove without possibly doing damage.”
“How come you didn’t just take the appendix out?” I ask. “I mean, I don’t need it, do I?” This disease feels like an intruder, and I want it gone.
Dr Bond draws me a diagram with a black pen.
“Ordinarily the appendix would hang neatly off the end of the intestine, like this, where it could be easily be lopped off. But the endometriosis has deformed your appendix—it has curled around on itself and formed a hard lump, meaning it would need a bowel re-section to remove.”
He explains things to me patiently and with respect. So different to the first doctor, the one who I’ve nicknamed The Dragon.
He goes on. “It’s possible—but not probable—that you could conceive without medical intervention.” He shrugs, palms facing up. “Wonderful things can happen…but your fertility will drop dramatically from the age of 35, so if your social circumstances permit you to do so, I would advise you to get on with it.”
At least he puts it more sensitively than the Dragon did.
As far as my pain levels go, he tells me the future is unclear. The disease could remain quite static, or, depending on how my symptoms evolve, I could need more surgery, maybe with a temporary colostomy for three to six months while the bowel heals up.
“Let’s monitor your symptoms for the next three months or so before we consider next steps,” he says. “Up until now, the bowel has essentially been asymptomatic.”
“I’ve had a few stabbing pains,” I say.
“At the moment, the risks of more surgery don’t outweigh the risks to your quality of life. I recommend a ‘wait and see’ approach.”
I shift uncomfortably in my seat. “I just don’t like the thought of it being in there.”
“Remember,” he says, “It’s not like cancer where you have to get it all out.”
I sigh. I still have trouble wrapping my head around that concept. “I just hate to think of leaving it in there to do more damage,” I tell him.
“It’s already a mess in there!” Dr Bond says matter-of-factly.
I like how Dr Bond doesn’t beat around the bush. But sometimes what he has to say is hard to hear.
I pay the bill and leave his rooms. I walk down the yellow brick path flanked by roses. My head is like a centrifuge, thoughts spinning at high speed.
At home, I email the endometriosis support group: “I'll be 34 in September, so I feel like a biological time bomb is ticking over my head. I'd like to get married and have children right now more than anything, but no potential husbands in sight. I don't want to have kids without being in a secure relationship. And I'm currently feeling down in the dumps, which is not an ideal position from which to start looking for a new man!”
Would anyone want to marry me? I wonder. I mean, can you imagine my dating profile?
Single female, 33. Depressed, anxious, with a severe, agonising, incurable disease that adversely impacts sex, toileting, mood, energy levels, and pretty much everything else. Prognosis uncertain. No career direction. No children. And needs to reproduce soon. Like, REALLY soon. (But WARNING: probably infertile).
I flick through a stack of library books I have borrowed on endometriosis. They contain quotes from sufferers about the difficulty of getting a diagnosis. The terrible pain. The struggle. The difficulties getting pregnant. The heartache. But none of these books tell me what I really want to know: where did all these women end up? Did they get better? Could they work? How did they manage? Did they go on to lead meaningful lives?
My eldest brother and his wife visit. They tell me to have faith in the universe. But the world as I knew it has changed and the ground feels unstable.
I dig out an inspirational book that belonged to my Dad. I remember him encouraging me to read it. I sit in the sun on mum’s verandah, leafing through the pages.
“Oh no,” I think. “It’s one of those books.” About someone who defied all obstacles with their overwhelmingly positive attitude, discovered life's true purpose, found true love, got married, had hordes of kids, lived happily ever after, is adored by everyone, blah blah blah.
I feel like chucking the book in the bin. Because I am not this person. I am the opposite of positive. I am a seething, bottomless cesspool of cynicism and worry. I have an anxiety disorder.
Now that I’ve laid that on the table, what the fuck do I do next?
I sit in bed at night, pondering. I may not be able to fix this disease. But—at least—perhaps I can start fixing other stuff. Would healing my mind heal my body? Some people seem to think so. I am not sure. I have tried to heal my mind before, but the problem is still not solved. Maybe now it’s time to try again.
Nobody else knows that I feel I have separate selves. I wrap my arms across my body. Right hand on left shoulder. Left hand on right shoulder. I hug myself tight (can I squeeze all these shattered pieces back together?) and promise, "We're going to get to know each other."
MJ McArthur was born in the back of a 1967 Holden HR outside an East Melbourne hospital. Her favourite (and most lucrative) writing prize was a trip for four to the 2004 Australian Idol final at the Sydney Opera House. A graduate of RMIT’s Professional Writing and Editing course, she lives in inner suburban Melbourne with her favourite companions. She went through an early mid-life crisis after being diagnosed with a serious illness at the age of 33. She is now writing about this experience, and what happened next, in her memoir, Invisible, with the support of a 2019 Write-ability fellowship from Writers Victoria, with mentor Lee Kofman.