Chronic Uncertainty: Books I Wish I’d Had When (Nearly) Everything Changed

by Emma Ashmere

 

Today I’m celebrating the international day of people with disability in all its pride and diversity by recommending a few wonderful books written by people with lived experience of disability and chronic illness. The term in this post’s heading ‘chronic uncertainty’ is borrowed from Jacinta Parson’s excellent new memoir Unseen, mentioned below.

It’s been 16 years since my own health changed and I began losing the ability to walk unassisted, back in 2004. But it wasn’t until 2010 that I found a book that told me I was not alone.

That book was the memoir The Sound of a Wild Snail Eating by US author Elisabeth Tova Bailey.

THE SOUND OF A WILD SNAIL EATING by Elisabeth Tova Bailey

Struck down by a virus while travelling, Elisabeth Tova Bailey instantly becomes a ‘horizontal person’. Her world shrinks to the size of a terrarium of potted violets next to her bed, a gift from a friend. But then she hears a sound. A snail is munching through those violets.

Her diminished view opens up into the broader natural world of snails, gastropods, connecting with scientists and readers alike. The image which resonated with me the most was her idea of while so many of us exist in isolation, we are like thousands of lights burning all over the world.

In 2010, I wrote a review of this book for a local newspaper – a job I was offered which changed my life. Every month I was paid $20 per 400 word review and allowed to keep the book – important because I could no longer afford to buy books. This was a tiny but huge step in rediscovering my fragmented writer self, piecing together a purpose, and a regular pattern to my month.

 

HOTEL WORLD by Ali Smith

Scottish author Ali Smith is one of my all time favourite writers. Best known for her prize-winning brilliantly political, witty and structurally ingenious books, she’s also had Chronic Fatigue Syndrome/ME. I didn’t know this until I read the opening lines of the chapter ‘Future Conditional’ in her 2001 Booker shortlisted novel Hotel World – lines which could only be written by one who know how it is:

About you – continued…

If you need help filling out this form, or any part of it, phone…

Tell us about yourself.

Well. I am a nice person.

The protagonist is trying to explain to the government welfare officers why she can no longer do her job at a hotel. Her head feels ‘like a bison’, and she exists between worlds, lost in her room at her mother’s house, not fitting into anyone’s definitions, including her own. She hesitates over the welfare application form. Will she write ‘I am a nice person’ or will she cross out the word ‘nice’ and replace it with ‘sick’? She’ll do it in a minute, except she can’t remember how many minutes there are in an hour, how many hours in a day… etc.

 

SO LUCKY by Nicola Griffith

UK-born writer Nicola Griffith’s 2018 book So Lucky packs a punch. The protagonist Mara works at a not-for profit LGBTQIA+ health support organization. On the very day her wife walks out of their marriage, Mara feels a weird sensation in her leg. She’s diagnosed with Multiple Sclerosis (MS), and so begins her reckoning with an ableist world – including her own office colleagues who can’t see the need to install a ramp – and her own changing sense of self. Here’s my review of So Lucky on Newtown Review of Books.  

Nicola’s best known book is the much-acclaimed historical novel Hild set in the Dark ages. Apparently there’s another novel on the way. Nicola’s blog posts ‘Lame is so Gay: A Rant’ and ‘Coming Out as a Cripple’ and her work on own voices is essential reading for any writer or reader who might assume they know what living with a disability is like. Highly recommended.

(Thanks to Nicola Griffith’s help, I finally wrote about my health, publishing the short story ‘Standing Up Lying Down’ in Overland, based on my own experiences back in the early 2000s trying to discover why I couldn’t walk.)

New Books

This year there’s been a crop of excellent Australian books – books I wish had been around when I was navigating the health maze.

SHOW ME WHERE IT HURTS by Kylie Maslen

Kylie Maslen’s memoir ‘Show Me Where It Hurts: Living With Invisible Illness’ peels back the layers of being young and working through multiple health problems, and the labyrinthine process of trying to find out what is going on. Eventually the author learns she has endometriosis, and bi-polar. She has so much to juggle here, including the changes and losses of identity, work, income, and a presumed future. There’s also the beautiful interweaving of the things that get her through – including Beyonce.

The line in this book which resonated with me the most was about the author finally finding a diagnosis and how that offers her a chance to connect with others.

If you’ve ever been told “the diagnosis doesn’t matter… we’re just going to continue to treat your symptoms” you’ll know exactly what this means.

 

 UNSEEN by Jacinta Parsons

Broadcaster Jacinta Parson’s new memoir ‘Unseen’ details her rocky path through the medical and social world, and the many challenging physical difficulties of managing Crohns Disease. There is much to unpack here, including the history and politics of women’s bodies, the need to be listened to and believed, the tensions between independence and reliance on others, and making a new life in work and with family.

The zinger is her comment about being diagnosed with a chronic condition is like being diagnosed with ‘chronic uncertainty.

In the To Be Read Pile

After tuning in to the recent Politics of Health session run by the Feminist Writers Festival, I’m looking forward to reading Katerina Bryant’s new memoir Hysteria, about living with a rare form of epilepsy and the history of pathologising women.

 

 

Books Coming Soon

Growing Up Disabled In Australia will be published by Black Inc in February 2021. Edited by appearance activist, writer, and speaker Carly Findlay, this is latest in the Growing Up series, and showcases over 40 pieces of writing from emerging and established writers.

‘One in five Australians has a disability. And disability presents itself in many ways. Yet disabled people are still underrepresented in the media and in literature.’

I’m also looking forward to Anna Spargo Ryan’s new memoir A Kind of Magic (Picador) July 2021, which was at the centre of a heated publishers’ auction.

 

More Favourites

There are so many other excellent books on disability and chronic illness. They’ll continue to resonate and change lives because of their authors’ honest and generous insights into living in a world that does not always respect, value, accomodate, or adapt to those of us deemed as ‘different’.

 

Favourites include: Jo Case’s wonderful memoir Boomer and Me: A Memoir of Motherhood and Asperger’s, the ground-breaking Say Hello by Carly Findlay, Susan Varga’s exquisite poetry collection Rupture on recovery from a stroke, and Jessica White’s hybrid memoir on deafness Hearing Maud: A Journey Through Voice – which has just been shortlisted for the Prime Minister’s Literary Award.

Many things need to change for everyone living with a disability and chronic illness, whatever our particular needs, aims, and situations.

Perhaps now that millions more people have had a taste of what it’s like to live with sudden restrictions, multiple losses, and chronic uncertainty – including the emergence of Chronic Fatigue-like post-COVID ‘long haul’ conditions –  there’ll be more understanding for those of us who live with versions of these limitations every night and day, regardless of whether COVID is there or not.

These books will help.

 

 

 

 

 

 

A note about me:

Here’s a photo of me in 2006 in my freezing cold Melbourne lounge-room – ready to submit my PhD. After I began losing the ability to walk in the early 2000s, I had to leave my full time job. For 10 months I worked for 20 minutes most days to finish my thesis and PhD novel. These four PhD tomes were too heavy for me to deliver in person – you can’t carry much when you use a walking stick. By then, I could no longer drive or take the bus because of loss of balance. The tram was better, but the tram stop was too far away. A dear friend drove me to my university, but we weren’t allowed to park in the Disabled parking because I didn’t have a permit, which wasn’t possible to arrange by phone or online. We managed to persuade a security guard to let us park briefly by a door. The lifts to the English Dept were actually working, and we moved slowly along endless corridors until we came to one of my two wonderful supervisors’ offices, and celebrated the moment with tea and cake. Since then, I’ve regained the ability to walk unassisted, and continue to live with several health conditions including Chronic Fatigue/ME.

Emma Ashmere was born in Adelaide, South Australia on Kaurna land. Her new short story collection DREAMS THEY FORGOT is published by Wakefield Press. Her stories have been widely published including in the AgeGriffith ReviewOverlandReview of Australian FictionSleepers AlmanacEtchingsSpineless Wonders#8WordStoryNGVmagazine, and the Commonwealth Writers literary magazine, adda. She has been shortlisted for the 2019 Commonwealth Writers Short Story Award, 2019 Newcastle Short Story Award, 2018 Overland NUW Fair Australia Prize, and the 2001 Age Short Story Competition; and longlisted for the 2020 Big Issue Fiction Edition, and the 2020 Heroines Prize, with another story forthcoming in the NZ/Aust Scorchers climate change anthology. Her critically acclaimed debut novel, The Floating Garden, was shortlisted for the Small Press Network Book of the Year 2016. See more of Emma’s posts about writing here.