CHAT SESSION 26 with Emma
Topic- VALIDATION
Monday 23rd October 2023 1pm https://rppfm.com.au
Catch up and listen to our chat session https://megaphone.link/LCRUI7396934134
Professional photographer Jessica Roberts, photo from 2017
There’s no escape from being told we are ‘enough.’ It pops up in social media feeds, on television, in songs, on t-shirts, demanding that we accept ourselves for who we are. But what is being enough? For Emma, a search for validation has always revolved around the way her body works. Or rather, how it doesn’t work.
The story goes that the doctor didn’t believe her mother, claiming it’s ‘just the way she walks.’ Perhaps this was the start of her subconscious desire for validation. Perhaps hearing and telling this tale so many times over the years imprinted it in her brain. Perhaps.
A second opinion brought the diagnosis of hip dysplasia and within a week, she had her own starched cotton bed in a giant jam-packed ward of crying children. She spent the next eighteen months having a multitude of surgeries and being bound in plaster casts with strange names.
The threat of early onset arthritis and a hip replacement by the age of forty doesn’t mean much when you are a child. Annual check-ups were an exciting excuse for a day off school. Her bones developed as well as they could and other than their slightly abnormal shape in the X-rays, everything was good. It was when she left home to complete her degree, and later when she moved to London to forge a career, that the reality of chronic pain set in and started to heckle from the back seats.
She was conflicted by how much to share, how much to ask for help. If she said too much, she might be a burden. Might not get the job, the boyfriend, the life she wanted. If she said too little, she might overdo it, have overbearing pain, an unstable hip that wouldn’t allow her out of the house, never mind up and down the broken escalators of the London Underground.
Her doctor scoffed at her walking stick, her pain, her desire to live as her twenty-something friends did. He made her question how bad it was. Made her feel she was just making a fuss. She left each appointment feeling bruised and embarrassed.
She knew she couldn’t do all the things, but according to those that mattered, she wasn’t disabled either. Disability was severe. A description reserved for people who were worse off than Emma. Some made her feel it was a dirty shameful word, so she didn’t dare use it. She lived in a grey area. Not quite disabled. Not quite not. Stuck in the ‘just the way she walks’ territory.
She wanted children but was terrified they would have hips like hers. It wasn’t until she had E that new quests for validation began. Doubts about how she could she be a good mother when her body didn’t work the way she needed it to. A desperate urge to ensure her baby’s bones worked.
With E, the search for bone problems was welcomed with words of support and an understanding that surrounded Emma’s condition. For the first time, she didn’t worry the doctors would laugh at how ridiculous she was. At eighteen months old, E was signed off.
Two and a half years later, S was born. The validation Emma needed to confirm he was okay was used against her by doctors, like she wanted there to be something wrong with him. She fought for all the same tests and X-rays E had until they backed down and booked him in. Despite the fact he couldn’t pull himself up to stand, and he had a certain way he walked, the doctors signed him off too.
It was at this point, when Emma was thirty-six, E was three, and S was one, that she had her first hip replacement.
After all the specialist Red Cross chairs, toilet seats and mattresses had been moved from the house post-recovery, the family began to make plans they hadn’t felt they could before. Emma and her husband lived in Melbourne before having the children but couldn’t stay once E was born because Emma was struggling physically. Her bionic hip brought a new confidence. One which, for the first time, allowed her to see the mum she could be.
The next two years felt as normal as they could after moving to the other side of the world. The family settled into their Bayside residence enjoying the benefits of Emma being able to do most things. However, when S was four years old, he woke one morning with a severe limp.
It took six months, two trips to emergency, four specialists and countless X-rays before they found someone who knew why he walked the way he did, and S was diagnosed with Perthes disease.
Perthes disease is an orthopaedic condition where the blood supply stops in the hip, and the ball joints waste away. The bone grows back, but who knows when or how successfully. S couldn’t walk. Not even out of the appointment. Any impact from running to simply standing would damage the hip further. And there was a chance it might be something worse. Something that affects every joint. Multiple epiphyseal dysplasia. But that couldn’t be confirmed until he was older.
Emma’s thoughts spiralled between guilt that she might be to blame, anger at being fobbed off for so long, relief at discovering she was right, and despair that her baby would face a world of immobility and chronic pain.
An old critic resurfaced. The one she faced before her hip replacement. Right when her baby needed her the most, she was back to questioning her ability to be a mother on a whole new level.
A few months after diagnosis, S needed intervention. The movement in his hips had deteriorated and his orthopaedic consultant wanted to try out something he called slings and springs, similar to the traction she had endured as a child. His tiny legs were hoisted up from the hips and separated, hovering above the mattress. His ankles and thighs supported by fabric, stretchy bandages and hooks suspended from above. This was followed by a six-week stint in broomstick casts. A different term to the A-frame she’d had when she was little, but equally as strange a name. All the words, procedures and medical terms that had become so familiar to her over the years now belonged to him too.
On the morning of S’s procedure, Emma’s husband brought in E. They came every day, but this was different from their other visits. Prior to his surgeries, S’s orthopaedic consultant ran his clinics. Their daughter was on his list.
A few weeks prior, they noticed E’s spine didn’t sit quite straight. When she leaned forward, one shoulder stuck out more than the other. More X-rays and referrals and here they were, with another diagnosis. Scoliosis. Soon she would be strapped into a hard plastic back brace that she would have to wear twenty-one hours a day until she stopped growing.
As days go, this was the worst.
It’s been six years since that day. S’s diagnosis was changed to Multiple epiphyseal dysplasia, which means he is allowed to be a little more mobile, but other joints have since been flagged up as not forming properly. He suffers from pain daily, has a multitude of professionals looking after him and will always have a certain way he walks.
E is on her fifth or sixth brace, it’s difficult to keep count. She’s still growing, but the curve in her spine has remained stable thanks to her dedication to wearing her brace all the hours she’s supposed to, even though she constantly criticises herself for not doing enough.
Since their diagnoses, Emma wanted to ensure her children didn’t need to seek validation like she still feels she has to do. Some days are harder than others, but as a family, they talk about it. The hard stuff and the not-so-hard stuff. Pain and how it makes them feel. Disability, and what it means to them.
Disability is a word that means different things to different people depending on their own experiences. For Emma, accepting it as part of who she is makes her feel like people understand why some things are more difficult for her. It allows her to belong to a community. And it makes her believe she has stories to share that could help someone like her. Valid stories.
Having said this, Emma will probably always seek out confirmation that it’s not ‘just the way she walks.’ As a person with disability, as a mother, a wife, a daughter, a friend, and also more recently, as a writer. But her hope is that she offers enough validation to her children that they don’t ever consider seeking approval for who they are.
Biography
Emma Rennison is a British-Australian author and mother to two children diagnosed with multiple epiphyseal dysplasia and scoliosis. She has one bionic hip and another soon to be replaced.
After studying English and Media at university she fulfilled her need to write through a career in communications where she specialised in forestry and conservation issues. During this time she ran campaigns about rare birds, forest fires and - the most controversial of all subjects - dog poo.
She hung up her wellies to move from the UK to Melbourne in 2008 where she now resides.
Her first published story, ‘No Guts, No Glory’, won the Editor’s Choice Award 2020 in the RWR Anthology - Short Stories of Science and Space.
She was the runner-up in The Jennifer Burbidge Prize 2021 with her short story ‘The Date’, and the Hunter Writers Centre featured ‘The Game’ in the 2021 Newcastle Short Story Anthology. She’s also had short stories published in two more RWR Anthologies, Meanwhile… Murder and Got Game? In 2024 her first romance will be published in Splashes of Love.
As part of the SBS Voices Emerging Writers’ Competition 2021, Emma had her first memoir piece published, which discusses her family’s experiences of disability. She was also shortlisted in the City of Melbourne Lord Mayor’s Creative Writing Awards 2022 in the brand new category - Self-told Stories of Writers Living with a Disability. In 2023, Emma’s short memoir ‘Smile’ was published in a Writeability anthology, Writing Up a Storm. A collection published by Writers Victoria showing the authors’ lived experience of disability.
Emma was selected as a Writers Victoria Writeability Fellow in 2022 and is currently working on her first novel.
You can find her at www.emmarennison.com
on Instagram https://www.instagram.com/emmajrennison/?hl=en#
My hope is that when you’re looking at yourself in the
‘The Daily Mirror’
YOU SMILE
EMBRACE BEING YOU
AND FIND 10 MINUTES IN YOUR DAY TO NOURISH YOUR SOUL!
To get in touch with Cathy email smileinthedailymirror@gmail.com
'The Daily Mirror' acknowledges Aboriginal and Torres Strait Islander people as the Traditional Custodians of the land and acknowledges and pays respect to their Elders, past and present.