Feature

Living with endometriosis forced me to slow down

Despite being diagnosed with a debilitating disease with no end in sight, for the first time in my life I found peace in presence.

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Kelly (in white) marking six months post-surgery in the snow with partner Ally. Source: Supplied

It had been nine months since I’d been diagnosed with stage four Endometriosis.

Four hours of surgery was all it took to kill a business I’d spent four years growing. This was no small thing.
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Kelly Myers. Source: Supplied
Endometriosis is a disease which causes tissue that normally lines the uterus to grow on the outside. It impacts one in nine women and there’s no cure.

For 20 years I’d suffered in silence with agonising period pain because I was told it was normal.

Deep down I knew it wasn’t normal to spend a third of every month bed-ridden, to plan my life around my cycle and take up to eight Panadeine Forte a day, only to throw up violently on the cold lino floor at night.

But the weight of indoctrination had buried my intuition.

Growing up as a Jehovah’s Witness, I was sold the belief that painful periods were women’s collective burden. Something we must endure because of Eve’s original sin. The subtext was clear, knowledge of your body was forbidden.

And so, I endured acute pain until my body could no longer support the weight of the narrative.
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Me at age three, preferring balls over dolls. Source: Supplied
In October 2019, an ultrasound revealed it was likely I had endometriosis.

Typically, it doesn’t show up on an ultrasound, but this was the 4K version of endometriosis. I went in for a laparoscopy, a word I still prefer to write than say, just like oophorectomy: the surgical removal of an ovary.

Unfortunately, my right ovary resembled a California raisin and it too was removed, along with the "nasty endo disease" (my gyno’s words not mine).

I don’t remember much post-surgery, apart from eating what I believed to be the best meal ever made: a bean chilli and boiled potato, which I was devouring like there was no tomorrow, when my surgeon came in to officially share the news.

We removed your right ovary, but your left one is working fine, so you still have an 89 per cent chance of conceiving.

Her statistical reassurance washed over me.

This was a gyno who knew I was a lesbian with no intention of getting pregnant, but before I could even process how irrelevant her little speech was, she’d vanished behind the curtain like a ghost.
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Emerging from bed three months after surgery in June 2020, with my bunny nurse Lindti. Source: Supplied
As I sat up in the hospital bed stirring my tea with a plastic spoon, I felt invisible in a world where women are treated like mediums that carry the waves of life, rather than the wave of life itself.

A chill radiates down my spine.

I buzz the nurse and ask for another blanket.

She places it over me gently and turns out the light.

After a horrendous night of feeling like my face was a fireball, I managed to make it through to the morning.

The same nurse who brought the blanket also brought breakfast and some news: Australia had officially declared COVID-19 a national pandemic. As we became transported into the collective unknown, I felt less alone in my grief.
I felt invisible in a world where women are treated like mediums that carry the waves of life, rather than the wave of life itself.
As the pandemic advanced, I was in bed learning how to plant new seeds inside stillness.

Prior to birthing my business in 2016, I’d spent almost a decade rising through the ranks of corporate technology.

Growing up mixed race and poor I always felt I had something to prove.

And so I fashioned a shield out of academic excellence, to protect myself from the suffering poverty and being non-white can bring.

I was always striving to be better. By the time I was 32, I'd become the youngest team member of a Silicon Valley start-up, flying back and forth between Australia and North America.

Being on the move was all I knew, so learning to be still, meant letting go of the lifelong held belief that hard work is the key to a successful life.

Endometriosis didn't care about my plans or how many clients I had or how much money I made.

I grieved the death of my health and my business and over time, I grieved the death of someone who was always running towards change without ever really grieving what she’d left behind.
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Riding a bike for the first time since surgery in January 2021. Source: Supplied
Despite being diagnosed with a debilitating disease with no tunnel end in sight, for the first time in my life I found peace in presence.

Now, on particularly bad days when my pain flares up, there’s joy to be found in pulling up the blinds and seeing the birds chirping in the trees. There’s joy in savouring a nice hot cup of tea and listening to hip hop on a cool spring morning. There's joy in being in the now, even when it hurts.

From the vantage point of my bed, I built empathy for those still clinging to a world which was now in the rear view. I wrote as a means of survival, and slowly but surely, I learned to warm my face on the flames which burn our fantasies of “normal”.

It’s easy to see why we shy away from change: it’s not that we don’t want it, we just want the nice packaged up version we see on the internet, the one minus the messy middle of mixed emotions and uncertainty.

Instead, emotions like guilt, shame, despair, and anger are stigmatised and trivialised. Feelings become annoying things to get over rather than be reckoned with.

In a culture which likes to cut its losses, perhaps tending to them would be more appropriate?

Intuitively, I knew my inner coordinates were precisely where they needed to be in the heart of this reckoning.

Despite being a particularly painful and dark time; I knew I couldn’t afford to break out of the chrysalis of change too soon.

That’s the paradox of change: without the winter of our lives, spring can never arrive.

Kelly is a writer interested in digital culture. She enjoys hip hop, philosophy, tea and taking naps. She lives with her partner and two rescue bunnies in Ballarat, Victoria. 

This article is an edited extract of an entry chosen from the 2021 SBS Emerging Writers' Competition. 

Endometriosis Awareness week runs from March 3 to 9.


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6 min read
Published 2 March 2022 8:38am
Updated 24 March 2022 10:13am
By Kelly Myers

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