The story of Jenny Sheldon a Stroke Survivor and Author
Updated: Aug 22, 2019
by Maria Issaris
In late 2018 Jenny Sheldon’s book, ‘I Will’, was published by the Sydney School of Arts & Humanities (SSOA), and almost immediately afterwards recorded for broadcasting on the Sydney community radio station 2RPH, making it accessible to 108,000 listeners a week from 20 February 2019.
Good storytelling involves a little bit of magic. People can give you advice, write articles, build apps, conduct workshops – write huge tomes exploring it and scientifically examining it. But in the end, the magic and trance of good storytelling cannot be boiled down to any formulae at all. Each really good story has its own trek, particularly in the current publishing environment where there are so many platforms and pathways to see your story come to the right audience.
When Jenny Sheldon had a stroke 11 years ago, leaving her with a range of physical limitations (she had to re-learn to speak), her first thought was, ‘How do I get this story down so other people can learn from it?’
Now if you are a writer, you would understand this train of thought immediately. But most writers don’t have to type with one hand and drag their memories and thinking out of the quagmire of aphasia (the type of brain damage and physical disability caused by Jenny’s stroke). Aphasia does not injure intelligence or mental capacity but causes great difficulty in trying to put words to thoughts. But even with these obstacles Jenny Sheldon, who was an English and drama teacher before her stroke, would not give up the idea. ‘Aphasia?’ she reflects to herself in the book. ‘Wow … ’ She was relieved and pleased to actually have a name for it. I think that attitude describes Jenny as a person, and why she was able, eleven years later, to succeed in publishing and podcasting her book.
Jenny is the first to say that she did not accomplish this on her own. She started to write as soon as she was able to put fingers to keyboard (or at least the one set of fingers on her left hand that she was still able to use) – tracking her progress towards recovery of her speech, thinking and walking capabilities. It was a long and difficult way towards recovery of her speech and the use of her legs and hands. Along the way there were also periods of depression and joy, and the construction and dissolution of relationships. But it was when she met Christine Williams four years ago, and then started working with Sharon Dean a couple of years later, that the book project took on momentum.
Christine, Director of the SSOA publishing house at The Rocks in Sydney, was holding writing groups weekly to encourage writers with active projects to read and share their work. Jenny started to attend, reading. The stages of building back her life in a different way was something she wanted to relate to others.
‘There was nothing else out there,’ she says, ‘for people who were going through what I was going through. I wanted to share that experience of being incapacitated, of wanting to get well, but feeling lost.’ Her frustration was about how to structure a book around those experiences. Even though she had been an English teacher before her stroke she was at a loss about how to construct a book.
Christine encouraged Jenny and decided to put her in touch with a writing coach. She suggested Sharon Dean, a former journalist and academic who was spending a few months in Sydney after finalising a digital storytelling project in the Northern Rivers of NSW. Jenny was delighted and surprised. ‘What a coincidence!’ she said, ‘A few years earlier I had lived in the Northern Rivers, where Sharon and I had been in a choir together. I had no idea that Sharon was in Sydney, let alone that she knew Christine.’
Sharon understood the difficulties involved in telling someone else’s story but decided to take on the task. ‘I was on board from the get-go,’ she says. ‘Apart from wanting to honour the wonderful synchronicity that led us to reconnect, I love that Jenny has such pure motives – she is so incredibly big-hearted and truly aspires to connect with others. It was impossible not to want to help.’
And so the story construction began – a mammoth task that took a year of mentoring and then several months of researching and writing for both Jenny and Sharon to work through the material and memories. Sharon had experience with stroke survivors and in common she and Jenny were singers. ‘While working in aged care I saw myself as a professional listener more than anything else, and I loved the challenge of helping clients tell their stories. As part of that process, I found that for many people who’d had left-hemisphere strokes, singing can be easier than speaking. Jenny and I were both intrigued by this and we began digging up studies on singing therapy.’
The book mentoring process was very satisfying for both, although Sharon soon found that Jenny could become quickly fatigued. ‘I began by mentoring Jenny in a conventional sense, commenting weekly on each section as Jenny wrote it. But Jenny had trouble with the physicality of typing – having the use of only her left hand. She was also getting anxious when she couldn’t recall memories accurately or chronologically. And of course, Jenny being Jenny, she wanted to mention and thank every person who had been involved in her recovery, or who had had a positive influence on her, so part of my job was to keep reminding her about the book’s ultimate audience. Every person named in the manuscript really had to be part of moving the story forward or revealing an aspect of Jenny’s character.’
Sharon decided to interview Jenny instead, eliciting information and responses journalist-style. This worked for both of them, arduous though it was.
‘I trusted that fragments of Jenny’s story would fall into place as we spent time together,’ says Sharon, who took copious notes during the interview sessions, developing an ear for Jenny’s voice and personality as their work progressed. ‘It was about waiting for the right words, the right images and recollections that would help create a bigger picture.’
Taking the burden of writing the script off Jenny’s shoulders meant that Jenny could focus on her memories and express them in her own characteristic way. Sharon was keen to capture Jenny’s excitement and optimism, qualities that always shone through even after the darkest and most depressing chapters in Jenny’s ongoing rehabilitation. ‘Out of 1000 words of transcribed notes, there would usually be one gem of a sentence,’ says Sharon, ‘I was working on a gut feeling most of the time.’
And working with Jenny?
‘This is what inspired me to keep going, and still inspires me about Jenny,’ says Sharon. ‘What I loved was that when I honed in on any one situation, and asked Jenny to focus on it, she would be so determined to get it right, to keep trying to pin down that memory. She has a good ear for dialogue too, and a great sense of humour.’
Sharon says that she was continually surprised and impressed by Jenny’s refusal to label herself a victim. At one stage during her research, while crosschecking reports about Jenny’s medical history, Sharon began to suspect that Jenny’s stroke had likely caused by something that could have been avoidable. After confirming the viability of her hypothesis with various stroke specialists, Sharon suffered the dilemma about whether or not to reveal this discovery to Jenny. But Jenny, on being told, simply took it in her stride and decided to include it as part of the story (you will need to read the book to find out!).
The writing of the book, as Sharon and Jenny both describe it, was intimate, intuitive, and required a good storyteller’s ear. All of these qualities are reflected in the style of the book’s writing. Sharon describes how Jenny at times would pull out a surprisingly vivid and apt word to describe something – or remember a precise fragment of dialogue that was so realistic, ‘they were perfect to use,’ she says. ‘There was proof for me, time and time again, that all those skills as an English and drama teacher remained intact underneath the aphasia.’
Shortly before Jenny launched her book in Sydney at Ariel bookshop in October 2018, she met Barbara Sullivan, an announcer and interviewer with Radio 2RPH in Sydney (a Radio Reading service which reads, informs and entertains people who have difficulty accessing print). Barbara immediately saw the potential benefit of reading the book for the radio’s listeners, many of whom had disabilities. Without hesitation she took on the role of working with Jenny over several months to record the book in 8 half-hour podcasts, in readiness to be serialised and made available on the radio station’s website as a podcast.
At that initial meeting Barbara recognised what would need to be done to make Jenny’s book both a personal account of courage in the face of a major physical challenge, and also accessible to readers.
‘It was so interesting for me,’ says Barbara, whose career has been in publishing and media. ‘There is an intimacy to listening to radio. It is delivered straight to your ear with no visual distractions. That is why the sound quality is so important. But the book has a simple tone, a very accessible story, and I thought it was important to ensure that in the reading of it, it was staying true to Jenny. Her voice needed to be heard.’
Organising the process of recording Jenny’s book, and with Jenny’s voice featuring in parts, was breaking the mould on how the radio station operates. Being a radio reading service, a high standard was in place regarding the audio quality of the readers. Stringent auditions were conducted for those who had ambitions as readers and announcers. Jenny’s stroke did make her voice more challenging to hear.
Barbara and Jenny together carved out sections of the book, deciding which parts would be read by Barbara, and separating the more personal sections to be read out by Jenny herself. The audio corrections and editing were critical to ensure that Jenny’s voice remained true, but would also give listeners the opportunity to enjoy the book unimpeded by aural impediments to understanding the story.
‘This was a first,’ Barbara says. ‘It was stretching the boundaries of what we do at 2RPH by introducing a voice that is challenging, yet reflective of the importance of our work here, which is to enable listeners with a disability or disadvantage to access reading material. But Jenny’s excitement and enthusiasm is part of what drives her and this makes her very listenable. She had had experience as a jazz singer and so was used to delivering to audiences. She had that innate understanding of the audience.’
The most compelling reason for Barbara to take on this project, which took many months of production, was the actual story itself, and what she saw as the valuable messages in the book which were particularly pertinent for the station’s mission.
‘For our listeners it is such an interesting story of a young woman’s life before and after a life critical event. There are flashbacks in the book about her jazz singing and how music and singing became important goals in her battle to overcome her adversity. She does not shy away from how tough it was, and she shows without doubt how she came out finer and better as a result of all her experiences. And as a story itself – you get caught up immediately and you want to know what happens next! The prologue is superb.’
The experience was a personal one for all four women involved in developing and producing the book for readers and listeners. Each felt enhanced by it, and the process itself has forged new ground on how a book can be written, produced and delivered in their respective areas.
Christine Williams had decided to publish the work from early on when she heard Jenny’s attempts to write the story at her writing groups.
‘There was no doubt in my mind that it was a really valuable story and Jenny had a natural story-telling style. There were obstacles for sure, but nothing that couldn’t be overcome. Getting the right mentor for her was the key.’ Being a small publisher meant this personal sense of dealing with an emerging author was part of the process.
Christine linked her with Sharon Dean for book mentoring; she knew Sharon as a ‘perfectionist’, who would be assiduous in ensuring all Jenny’s factual recollections and details of medical procedures were correct.
‘I was Sharon’s supervisor when she was undertaking her Honours Degree, so I was familiar with her methodology. They were both a great fit for each other, and I was confident Sharon would do Jenny’s story justice.’