heaven in a grain of sand

i recently died and am becoming a new person. Here is my grave site. You definitely want to rot to this view.

This place is my only home on earth and where i’m going to join the bushman after i die. i don’t dare make a grave site as beautiful and moving as her’s. i just want my ashes spread across the surface, to become the sand. i can’t wait for the day…

i found out at that i’m not an oak, i am grass. i grew up in the highveld and my floods and droughts follow those rhythms of the climate i grew in. i burn to nothing every year and regrow in a new place. i’m icy cold wintery air on frosty crisp grass. i’m wind in August. i’m thunderstorms towering in the sky. i’m lightning striking the dry ground burning like dragons. i’m bright blue skies, the high pressure cell dragging your eyes up and up and up. i’m tiny soft green shoots in blackened crunchy crushed ashy

i don’t have solid roots like an oak. i have roots like grass. Apparently weak but growing back after every burning.

 

Just like the grass at the bushman grave. The storm uncovered the grave to reveal grass growing strong within a couple of days. One day nothing, the next day powerful grasses that look much older than the few days old they are. Old roots hidden beneath the sand. i will bend like the grass and challenge every windmill.

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Let’s see what I’ve discovered…

This is the story of the delay in endometriosis diagnosis, the immediate close friends in my life,  and what I’ve learned since my oophorectomy on 19 June 2017.

First up my university friends. We all went to the same doctors in the same town who misdiagnosed, mismanaged, mistreated, and even abused us all and how many other women?

One friend was told to “stop swinging from the chandeliers, sweetheart” as though that is even remotely an acceptable response to someone in pain.

I lived on a farm while doing my masters. There were other houses on the farm filled with fellow students who happened to be my friends. My house had three women and one man. Of the three women, two have endometriosis and one has PSOS. Our then neighbour has endometriosis. Our then other neighbour (technically a neighbour even if over a cliff and past a dam) also has endometriosis.

My husband lived with his friend N who ended up being his best man at our civil ceremony at Home Affairs. I recently discovered that she has endometriosis. I’m mentioning that she is a Xhosa lesbian only to draw attention to the challenges facing disadvantaged women in South Africa. It was difficult enough as a middle class white woman to find someone to take me seriously. It is even worse for more marginalised women.

One of my best friend who I met while teaching in the Middle East is a fiery redhead in her fifties. She has endometriosis and had a cyst the size of a mandarin on her ovary when she was 35 years old.

WHAT THE ACTUAL FUCK!!!

After my cyst burst 6 months ago, I saw a doctor who told me I was stressed. If she did her job properly, I’d have both my ovaries right now.

If any of the doctors in Grahamstown had done their jobs properly, I’d probably have both my ovaries right now.

If my symptoms had been taken seriously by any of the doctors I’ve seen, I’d probably have both my ovaries right now.

What has your experience been? Have you found medical practitioners who journey with you to find the best palliative, medical, and surgical options? Or have you had a string of Dr Bozozz (extra Z’s for sleeping on the job)?

Menarche

Her chocolate brown eyes, so unlike my own blue, were dark and terrified, betrayed by the body rebelling against her. Suddenly, certainty fled my world as the person I’d always relied on to be there for me needed help, and I couldn’t do anything.

My mom had an emergency hysterectomy when I was young. Fibroids and endometriosis. A delightful cocktail. I should have known then what was in store for me considering the genetic component to the disease. But at the time, I remember being sick with fear, not knowing what was wrong with my mother, aware that it had something to do with her period, even though this was the first time she had ever mentioned hers to me.

I’ve always been secretive about my period, not wanting to let anyone know when my most private monthly time was happening. It’s a weird side effect of my upbringing, I guess, to be be very private about bodily functions.
My mother and sister can barely wee in a strange loo because of their shyness. But this reticence to open up about my period became increasingly difficult to hide.

Without me noticing, I’d reached the point when I only had one good week in a month when I felt good, when I could be my self, uninhibited by pain.

Two weeks had varying levels of nausea and cramping. That right ovary, especially, became my warden and parole officer. Unexpected movements, dancing, being too happy and laughing too deeply, resulted in a hook and pull from several opposing directions tightening around that ovary like a chain and reigning in my natural joyful movement.

I move slowly, rigidly, ready to grasp and poke and massage the pelvis, the thighs, the ovaries, wherever the next pull comes from. That one week of pain to the point of passing out can be avoided with my arsenal of defence: anti-inflammatories, a heat pad, ginger, and a hot bath.

The emotional strain, the irritability, the stress, the fatigue from pain, the foggy feeling due to devouring anti-inflammatories, the toll on relationships with friends and family, how many signs did I ignore? It was the over thirty day period, with thick chocolate brown blood continuously and seemingly unendingly drip drip dripping that ended my willful blindness.

The gynaecologist saw a clear picture of cysts, especially on the right ovary. He wants to do a lap, and suspects that he’ll have to cut out the right ovary during the procedure. In the mean time, I’ve started Visanne as a way to halt the growth of the diseased cells. Perhaps once I’ve dealt with the shock of this hormone therapy the recovery after the lap will be smoother and the regrowth prevented for as long as possible.

Endometriosis. It’s a bitch.