I've been collaborating on a memoir project with Sarah Ezekiel, a leading eye-gaze artist who turned to painting with her eyes when the technology became available in 2012. At that point she'd been living with motor neurone disease (MND) for twelve years, significantly longer than is usual (most often it kills a third of people within a year, and more than half within two years of diagnosis).
I first met Sarah towards the end of 2019. During our meeting Sarah mentioned she had a memoir she'd started to write years ago using a chin switch, and which she'd been wanting to revisit. I went away and read it and with the first lockdown in March 2020, we started working seriously on her memoir together.
Sarah and I communicate by email more or less daily and work on shared Google Drive documents. Together we've done a lot of reworking of her original material and Sarah has written lots of new things, doubling her original word count and creating a number of new artworks to accompany additional chapters.
Sarah is the reason I took on the project. She is open, generous and full of life, and it's been a privilege to be able to work with her so closely. We kept each other sane during the chaos of 2020, which also came with a diagnosis of my own disease: multiple sclerosis. MS shares a lot of the same early symptoms with ALS (Sarah's kind of MND) and her support at that time was really invaluable, and her friendship continues to be.
Alongside work on her memoir, Sarah has also been in talks with playwright, screenwriter and theatre director Josh Azouz, who is pitching a TV series about Sarah's life, taking its inspiration in part from an advert Sarah starred in for the MND Association, banned from being broadcast on TV for being too shocking. 'Sarah's Story' aims to give viewers an insight into what an MND diagnosis feels like and to raise awareness about this disease which still has no cure. To this day, it's still banned from being shown on our TVs.
In 2021, we're persevering with more drafts of her memoir until we get it to the point it's ready to send to publishers... Watch this space.
Find out more about Sarah, visit her art shop and read the synopsis of 'The White Room' in the attached document below.