On October 20 2016, the One Woman Project had the privilege of having Emma Di Bernardo in to speak about ‘What To Do When Your Uterus is Not Cuterus’ – covering everything from reproductive health, to pelvic and menstrual conditions for people of all genders!
This fantastic video is a concise, summarised version of the presentation that Emma gave.
I am writing this as I am stoned to high heaven – legally – during an in-hospital pain treatment. It seemed an apt mindset in which to write this post. Excuse any errors on the ketamine, dear readers.
It’s not hyperbole to say that we have very few characters in young adult fiction who are a ‘spoonie’. For those of you who don’t know, the term spoonie is an umbrella term for an ever increasing large group of people who live with chronic illness and/or disability or difficulty that is largely invisible to society. If you want to know more about the theory, mosey on over to this great post at But You Don’t Look Sick.
People like me are not represented in fiction – and the way I see it, it’s down to two reasons.
Reason #1 – We’re Unicorns
I am writing this, as I mentioned at the beginning of this post, while I am in hospital for a treatment for my pain. I am surrounded by women in their 50’s and then mostly elderly people. Young spoonies are living with conditions every day that often are more likely to afflict older people. So we’re a minority. Right now, I am a violet-haired unicorn in a sea of purple-rinsed elderly people. Medical professionals and random people I meet are always concerned and confused that someone as young as me (for reference: I’m in my early twenties) is so ill. And like, I know! I’m concerned too. I’ve got 60+ years of dealing with this stuff and the odds are not in my favour.
So if we’re rare majestic unicorns in real life, it makes sense that we are yet to become unicorns in books too. From what I see in the young spoonie community on tumblr, pinterest and goodreads, I am confident that writers like myself will slowly begin to create and publish our stories with characters like us in the future.
Reason #2 – We’re Saaaaaaaaaad
A couple of months ago a friend said to me, in all seriousness, “I don’t know how you haven’t killed yourself.” And more recently I have had two friends say to me sometimes they feel so sad and helpless for me because they can’t help me when I am ill or in pain.
I completely understand these sentiments. Living with daily illness and pain is depressing in the truest sense. Some days, it is hard to get out bed or feel hopeful for the future. It’s frustrating when nothing works or when there is no one to blame.
But it doesn’t mean that a story about living with chronic illness, or a story featuring a character who just happens to be a spoonie (option B would be the optimal one, potential authors out there!!) has to be a Nicholas Sparks movie.
I am very lucky in my life in that I am still functional. I work full time, I have friends, I have hobbies, I exercise, and I attempt to have some kind of love life. Being this functional is exhausting and there are definitely days where I flop on my bed or eat cereal for dinner because life is too much to handle.
Being chronically ill hasn’t dulled my sarcastic tongue, or made me lose my sense of humour. It hasn’t robbed me of friends – although it has made me realise who my true friends are. I, like many spoonies are out there, have tried my hardest to make sure my illness does not stop my life or give it a soundtrack consisting of Mad World on an eternal melancholy loop.
So guess what? That means your character doesn’t have to have a depressing, bleak life too. Their illness may be your characters’ main struggle, but it doesn’t have to be the fatal blow in your dystopian YA love triangle novel. Young spoonie characters, just like young spoonie people, can have lives that fit around their illness.
So why do we need spoonie characters?
Because everyone deserves to see themselves reflected in art and in society, plain and simple.
I want to put a mission out to any YA authors wanting to write a spoonie into their story. Your challenge is to create a complex, engaging character that reflects the lives of real spoonies out there. They might have pelvic pain, but they might also love reading fantasy books. They might be a pastel goth. They might run an etsy store. They might be studying to be a doctor. They might love the beach. They might foster rescue kittens.
A short science fiction comedy full of cuteness, chronic pain, and netflix.
White light radiated from the sun on this summer’s day like an incandescent orb. The clearest blue coated the sky, perfectly pale, never revealing the sparkling galaxy and unknown worlds that lay beyond. Beneath it all, Evie practically ran off the bus as it finally pulled up to its stop. Her feet pounded the pavement as she jogged as well as her #cripplepunk ass could towards her gynaecologist’s office. She was fifteen minutes late. She just prayed that he was late as usual, too.
Out of breath, the twenty year old flew through the office’s glass doors and abused the ‘up’ elevator button until it lit up. Evie ran her fingers through her messy turquoise blue pixie cut as she tried to catch her breath. She tried, as always, in vain to ignore the pain that ran up her sides and radiated through her pelvic region. The elevator doors opened with a soft ‘ding!’, and Evie stepped in. With a big whoosh!, the lift travelled upwards to Evie’s destination.
Evie checked in with the sour faced receptionist and found a seat in the waiting area of Isis Gynaecology. She’d been informed by the receptionist that her gyno would be another ten or so minutes, and Evie thanked the stars, or God, or whatever heavenly bodies reigned supreme.
It was her bimonthly check up to check her chronic pelvic and vaginal pain – something she totally looked forward to! Not. It was the low light of her spoonie life. She would be needing some serious chocolate therapy after this appointment.
The mermaid-haired woman settled into a navy blue lounge in the waiting area as a soft jazz number played overhead. Evie finally caught her breath, and reached in her tote bag for her water bottle. Bugger, she thought to herself as she realised she’d left it at home.
Luckily, there was complimentary free coffee, tea, and Isis Gyneacology water bottles for patients on a little bench near the front of the circular waiting area. Evie heaved herself up, ignoring the painful pressure moving applied to her pelvic and genital regions, and grabbed a water bottle. She sat back down, unsuccessfully ignoring the shooting and stinging aches this time. Evie was about to twist open the lid when her Kim Possible ringtone sounded from inside her bag.
Evie swiped across her iPhone 22 and saw there was a new text from an unknown number. It was in some weird language Evie thought was maybe Mandarin or Chinese or whatever. (She guilty couldn’t tell many Asian language characters apart. She’d done French in high school, for crying out loud!) Probably some scam thing. Evie rolled her eyes, deleted the text, and grabbed the water bottle again. She observed the design. It was annoyingly pink and white, with a picture of an open flower behind the Isis text. Evie wasn’t sure how they could further symbolise a vajayjay, really.
Her long fingers were about to twist open the water bottle cap when she heard a voice inside her head. Inside her head. That was not hers. Nǐ néng lǐjiě wǒ ma? it asked her.
The voice was a sound unlike anything Evie had ever heard. It was flowing, neutral – a metallic whisper, a ghost embodied.
Evie could feel her eyes growing large. Someone had texted her in that language, and now the voice was in her heard. She knew awesome spoonie friends on tumblr that had schizophrenia – this was not how those symptoms started.
Evie stared at the awful pink water bottle. It was the only factor that was different in this life equation. Evie ran to the bathroom, water bottle in hand. She locked herself in a bathroom cubicle and stared at the water bottle harshly.
“What are you?” she whispered at it. Was this some government test? Were the Chinese invading her country via vagina symbolic water bottles?!
Her message tone went off again to reveal a text that asked the same question Evie had heard in her mind.
Nǐ néng lǐjiě wǒ ma?
Distressed and panicking, Evie went to Google Translate on her phone and typed in the phrase. It seemed to be in Chinese, like she had guessed. The telepathic water bottle had either said “Can you understand me?”, or “Where is the nearest McDonalds?” Evie assumed the former.
She typed her own response – I don’t speak Chinese. I speak English – and translated it into Google Chinese, then texted it back to the strange, alien number.
The water bottle responded in her mind, Can you understand me now?
Evie stared wide-eyed at the bottle of water. “Yes. You’re talking to me in English now?” she whispered fearfully.
Her Kim Possible ringtone alerted her to a new text message. Yes, was the reply from this alien microbe being.
‘What the hell is going on?’ should have been Evie’s first question, but instead she blurted out, “Why did you speak Chinese to me?”
The water bottle replied in its freakish telepathic nature. Its metallic words reverberated in her mind. Chinese is the most common linguistic tongue on planet Earth. It was the most obvious choice of communication. I will, however, continue to speak in this English tongue.
“What are you?” Evie whispered as another patient came into the bathroom to fix their makeup. She looked intently at the water bottle, but could only see the transparent liquid sloshing around. “Genetically advanced water? Can you even advance water?”
I am what the human race calls alien. I am a microbe. I come from the planet you call Mars. You would not understand our name for it in my language.
Evie’s brain almost collapsed from the sheer profundity and absurdity of this revelation.
“There’s a Martian in my water bottle,” she whispered faintly.
She was about to ask the Martian microbe many more questions when the familiar voice of the receptionist floated through the bathroom.
“Ms Jacobson, Dr Arthur is ready to see you now.”
Evie made a show of flushing the toilet, washing her hands and following the receptionist out. She stowed the Martian water bottle safely in her tote as she greeted her gynaecologist. Evie’s mind was hurtling as though travelling through time and space itself. What was happening? There was an alien in a water bottle. And it talked to her.
Dr Arthur smiled warmly as Evie shook his hands. They exchanged pleasantries and then the gyno suggested, “Let’s get the bad stuff out of the way first and have a look inside, shall we?” He then led her to a exam room with a long chair, a TV screen and ultrasound equipment. Dr Arthur left Evie to undress and get comfortable in the long chair.
The usual apprehension and foreboding fear kicked in, and for a moment, Evie forgot about the E.T. in her tote bag. Vaginal exams were a must to check on her faulty muscles, but they were the worst. They were pure agony and nothing could change that.
I sense you are anticipating something bad. Is that man going to murder you?
The voice of the alien cut through Evie’s cringing. Evie let out a small laugh despite her whirling of emotions.
“No, he’s just going to examine me. My body is messed up, so this will hurt when it shouldn’t – which is why he’s examining me in the first place.”
Humans do seem to murder each other at an alarming rate. Forgive me for the error in judgment.
“No harm, no foul,” Evie replied softly. “Why is there a Martian microbe in my water bottle talking to me?”
As the alien was about to answer, Evie’s gyno returned with a nice nurse. The gyno put on some gloves while the nurse reassured Evie. They tried to tell Evie to relax her inner muscles, but the memory of the pain couldn’t help but make her tense up. Breathing in and out slow, Evie nodded her consent, and the gyno lubed up the ultrasound machine and quickly pushed the ultrasound probe inside of her. Evie cringed at the smarting, stinging sensation of the probe moving past he entrances, and tried to breathe through strong and deep ache as the probe went further. The Doctor clicked a few buttons on the ultrasound’s computer, took some happy snaps of the ultrasound as quick as he could, and relieved Evie of the agony, pulling the probe out.
Maybe the Martian could read Evie’s mind too, because it assured her, We from the planet Mars are not here to probe you.
Evie was left to get dressed and meet her gyno in his office. “Why are you here, then?” she queried of the alien.
We are just exploring. Think of this as your rover taking photos on our planet. We are taking notes. It’s come to our attention that the human race will need us when the earth dies.
The gyno appointment finished pretty quickly after that, leaving Evie as per usual without much hope or possible treatment. She headed out of the office and onto a bus headed for the city. She was going to get some serious chocolate therapy at a chocolate cafe.
Along the bus ride, the microbe told Evie of how it, along with millions upon millions of its kind, came to earth. Invisible and unbelievably microscopic, it simply hitched a ride on the Mars Reconnaissance Orbiter as it returned from its recent mission discovering evidence of hydrated salts, or liquid water flowing on Mars.
The chocolate cafe was decked out in various shades of brown. Evie found a small, quiet booth at the back and ordered her meal. Evie ordered a hot chocolate, waffles and a pool of chocolate for lunch as she listened to the microbe rattle off its observations about Earth and humans. It was devastated about the lack of biological advancement of humankind, but amused and hopeful about their technology.
The turquoise-haired girl stirred her spoon around and around in its mug as the she asked the alien to tell her what Mars looked like up close.
Bright, replied the microbe, and yet so dark.
Evie imagined the microbe observing her stirring as the foreign voice took on almost a dreamy quality.
It has been a home for my kind for a long time. We grew from the earth, encouraged by the hot winds and cold stars. There are flashes of light and ghosts made of red dust that whips across the land. It is a glorious red desert, alone and barren, except for the ancient craters and modern storms.
“It sounds amazing,” she breathed in reply. She had her headphones on, so at least the cafe staff would just think she was singing along to Taylor Swift or talking to someone on the phone. “Do your kind get lonely up there?”
Barren does not always imply negative connotations.
“But if humans have to live on Mars one day…”
Perhaps there will be a trade of planets.
Evie’s eyes widened in surprise.
Or perhaps we can coexist peacefully.
“I shouldn’t expect you to reveal your supernatural secrets, should I?” the woman asked, more to herself than to the alien.
Their conversation seemed finished for now. Evie began her chocolate therapy, drinking from the warm delicious mug first. As Evie bit into her waffle heaven, the alien inquired, What is this ‘netflix and chill’ that many humans speak of? Is it a theological belief system?
Evie laughed so hard she almost snorted into her caramel hot chocolate dream.
“Yeah, sort of.”
I detect what humans pass for humour in your tone.
“Uhh, sorry. It’s not really a religion,” Evie whispered.
Her mind wandered. The microbe alien had told her a lot of things. It could move out of the water bottle easily – it could acquire languages in seconds. It defied gravity and sight and time.
“Can Martians fix my pain?” she wondered.
There was a deep pause. Evie could imagine the microbe thinking. She wondered if microbes even had brains – it seemed unlikely.
We do not have even remotely the same nervous system or physicality. It seems unlikely. I would like to express my apologies as I am sure this would bring you some disappointment.
Evie sighed, a spoonie sigh of un-surprise. “I’m used to it.”
She chugged down her hot chocolate in response. Maybe the Martian felt bad for her, who knows. Maybe it simply wanted to continue its mission of exploring every facet of human life. Whatever the reason, the Martian then asked, Could you show me this netflix and chill? Your aid will help advance mankind for when the planet is destroyed and you need to colonise my home.
Evie smiled. She had been waiting to watch the next season of Orange Is The New Black with her girlfriend.
“Sure,” she agreed, smiling. “One small step for a microbe….one giant leap for mankind.”