Molly Dolan speaks to Rhys Thomas and Rose Thompson about a new initiative designed to gather the experiences of people with epilepsy in a collection of digital stories. These stories will soon be shared with you on the web – including Molly’s own
In its simplest form, digital storytelling is the use of audio over a set of images. It is a short film that allows anyone to share their story. Digital storytelling has been used in recent years to teach primary school children, explain museum collections and support public health campaigns.
Rhys Thomas and Rose Thompson are working on a project that uses digital storytelling to allow people with epilepsy to share their story. The project is a collaboration between Cardiff University and the Welsh Epilepsy Research Network and was partly funded by an Epilepsy Action Diamond Projects grant. It aims to build resources that will help people with epilepsy feel a little less alone.
When diagnosed, people with epilepsy often have hundreds of questions that need answers. Doctors can help with treatment and medical questions, like: ‘When should I take my medicines? What are the side-effects? What type of seizures do I have?’ Still, it is impossible for them to answer things such as: ‘What is it like to live with epilepsy?’
Rose explains: “We know that epilepsy affects different people differently – there isn’t just one ‘epilepsy story’. Eventually we hope to have lots of stories in one place, in which different people with different types of epilepsy have effectively said, ‘It’s been like this for me…’”
There is a whole heap of medical advice about epilepsy on the internet. Personal experience stories are still lacking, however. Rose continues: “We know that people with conditions like epilepsy often feel quite alone and quite isolated. They may not know anyone else with the condition – maybe no one will be saying to them, ‘I feel that too...’ I think we can underestimate how important it is for people to be able to access the ‘what it’s like’ type of information.”
Speaking about existing services and where this project will fit in, Rhys says: “Epilepsy Action and epilepsy specialist nurses provide superb expert advice, but hearing from someone like you can be very persuasive. This resource is available to everyone – even if they are no longer under regular review and may have lost touch with services.”
The videos will be coupled with medical information and advice. This will make the project different to projects that are out there already, projects that only usually provide experience stories or formal information. By combining the two, the digital stories will hopefully become a main resource for people with epilepsy.
Rose says: “People have done this kind of thing in personal blogs and in public health websites and I think lots of those sites are really useful. But there are so many of them it can be difficult to know which ones are accurate.”
To make sure that a person with epilepsy is happy with their video, Rhys and Rose work closely with them at every stage of production. Speaking about the stories, Rhys says: “The videos are brief but pack a punch. They let you walk in someone’s shoes for three minutes and that journey can be an emotional one. It is often rewarding and prone to unexpected twists. I have been overwhelmed with each and every video that has been made so far.”
As well as educating people, the videos show the power of individual voices. Hopefully, they will encourage people to look at their own experiences and relate to the storyteller. The project is ongoing and Rhys and Rose are still looking for people to share their stories. If you are interested in sharing your epilepsy story, visit the ‘get involved’ section on the Epilepsy Action website.
My digital story
When I first heard about digital storytelling, I was curious.
I like the idea of learning about people’s experiences of epilepsy in their own words. I like the idea of using images to accompany a story. I just wasn’t sure if digital storytelling would appeal to me. I think I imagined a four-year old child sitting watching quite a simplistic movie of cartoon images with a very basic storyline. I really didn’t think it would be my cup of tea… But then I watched one.
I was moved by how the images illustrated the story and summed up exactly what the person was trying to get across. It’s safe to say that I was warming to the idea of making a digital story – so I spoke to Rose, one of the masterminds behind the project. We discussed me making my very own digital story.
I understand that these digital stories can be as private as you wish – to an extent. People aren’t required to go on camera, but their voices are used. All tales are true to them, but you only have to reveal what you want to reveal. Me being me, I wanted to push my boundaries and explore all of the ways in which epilepsy affects me and exactly how that made me feel.
Simple, I thought. I have a lot to say, so I began making notes each day leading up to my ‘interview’ so that I was relatively prepared for what I wanted to talk about. (I use the inverted commas because it wasn’t like an interview at all. It was more like a conversation with a friend that happened to be recorded.)
What I wasn’t prepared for was the emotional issues that accompanied this therapeutic process. I didn’t get upset, but it shocked me that I felt emotional discussing issues that I wasn’t even aware I cared that much about. Rose allowed me to talk freely and the conversation seemed to follow a natural path. I was allowed to discuss anything and everything that I was passionate about in relation to my epilepsy. This covered all kinds of things, from memory and concerned parents to relationships and future plans.
After the ‘interview’, Rose and I identified some topics that we thought came through most strongly during the interview. We then discussed what images might be used to accompany this. I was happy to use personal images for the story, so I set about finding some photographs that I felt sum up my life and the story of my condition.
I have felt involved in the whole process and found it to be rewarding. The final product is something that I look forward to watching, sharing with friends and family – and hopefully anybody else that my story will benefit. I would recommend this project to anybody with a story to tell, no matter how short or (in my case) very long!
How does digital storytelling work?
Digital storytelling is a short video made up of pictures. Audio of a patient (or other storyteller) is placed over the top to create a story. Rhys and Rose will interview a person, then edit this sound file down to three minute sections. This means that they can make it more fluent by cutting out the ‘um’s and ‘ah’s – but still maintain the essence of the story.
The images in the video can be anything, from sketches to family photographs. The process doesn’t involve any cameras and contributors can remain anonymous if they want to.
It is like producing a voiceover to your experiences, with the images onscreen playing out the story as the audience watches through your eyes.