A search for stories of others diagnosed with multiple sclerosis (MS) led Astrid Edwards to blog about her own experience. Ahead of the Own Voices: Why Writing Matters forum in Moe, Astrid spoke to Writers Victoria about her own work and that of others.
You began blogging at LadywithMS.com after being diagnosed in 2013. What role has writing about MS played for you?
Words have always been my refuge. I was very ill at the time of my diagnosis, and spent weeks desperately searching for the stories of people like me. I would spent every night glued to my computer, trawling the internet for some sort of answer. I found some personal stories, and they were my crutch, my support. But I didn’t find as many as I thought I would, and certainly not as many as I needed. It was even harder to find accounts that were written well.
And so I started my own blog. LadywithMS.com is a personal blog written sporadically as a form of therapy for myself. But it is also for others who may find themselves in a similar situation. I remember how much it meant to me when I found a well-written blog that shared similar experiences to mine. It gave me the same feeling that my favourite books have always done: like I’d found a friend.
How aware were you about writing and the disability community before your diagnosis, and how did this change afterwards?
I’ve always been a prolific reader, and if you had asked me that question five years ago I would have said I was very aware. But after living with MS for four years and actively engaging with the MS and disability communities, I can say I knew very little.
One of my personal goals – and perhaps obsession – is to identify truly great works of fiction and non-fiction about chronic disease and illness. It’s harder than you would think.
Joan Didion, one of America’s great essayists, was diagnosed with MS in the 1960s. ‘The Year of Magical Thinking’, her memoir about losing her husband and daughter to separate illnesses at the same time, was shortlisted for the Pulitzer Prize in 2007. But despite mining her life in her writing, Didion has written almost nothing about life with multiple sclerosis. I cannot stop wondering why.
Richard M. Cohen, and American journalist, also has MS. He is also on a quest to find and write great stories about disability caused by chronic and terminal diseases. His narrative interviews ‘Strong in the Broken Places’ was the inspiration for my WeDontTalkAbout.com project, where I interviewed 15 Australians with chronic and terminal illnesses.
As part of your writing workshop at the Own Voice: Why Writing Matters forum in Moe you’ll be inviting participants to share their work. What are the benefits of being engaged with the writing community?
The act of writing is a solitary pursuit, but telling stories is not. The creation of great writing is rarely done in a vacuum. Writing is a skill that improves over a lifetime, and always benefits from learning what other people are creating.
As producer of The Garret podcast, if you could interview any writer you wanted to who would it be and why?
Joan Didion, of course. And also Margaret Atwood. ‘The Handmaid’s Tale’ moved me profoundly when I first read it at school, and I have read it every few years since then. It’s a book that changes every time I read it. And the sequel is fascinating: in 2018 Atwood is continuing the story she first published as a novel in the 1980s through a different medium, TV. I’d love to know why she, as a writer, chose to write a TV script instead of a second novel.
What are the three best tips you have for new writers?
Be confident in your story. It belongs to you, no-one else. So write what you are driven to write.
Know that your first draft is not going to be a masterpiece. It is unlikely to be great, and it may be terrible. And that is alright. The first draft is just that: a first draft. It is not a judgement on your skill or ability, it simply means you have started to write your story.
Seek feedback from those you trust. If you are writing, it’s likely want people to read that writing. And that means you should consider the feedback of early readers. Your story and words will benefit.
About Astrid Edwards
Astrid started blogging about her experience being diagnosed with MS in 2013 at LadywithMS, and is a National Advocate for MS Australia. She founded literary podcast The Garret (supported by the State Library of Victoria, the Australian Society of Authors and Swinburne University) in 2016. She adores literature, and has served on the judging panel of the Aurealis Awards since 2016. Astrid is also Deputy Chair of Writers Victoria, a Director at independent content creation company Bad Producer Productions and a teacher of professional writing at RMIT University. She has worked as a consultant, taught Classical Latin at a private girls school in Sydney, worked at a private intelligence agency in Texas, and represented the Australian Government at the United Nations in New York. Good content and great ideas are her passion. Astrid tweets at @LadywithMS and @_AstridEdwards_