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  MELISSA WAN

The White Room - A memoir project with Sarah Ezekiel

8/1/2021

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In between shades of yellow and white on the left, and shades of red and blue on the right, is a glimpse of a Smirnoff bottle of vodka. We can see the 'SMIR' of the logo and one half of the red crest on the bottle, before it is obscured on the right by red and blue.
Vodka Dreams by Sarah Ezekiel. Painted using eyegaze technology, 2015.
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.
the_white_room_synopsis.docx
File Size: 141 kb
File Type: docx
Download File

A screenshot from CNN's Tech for Good, which pictures Sarah Ezekiel, a white woman with curly grey hair and glasses, in her chair concentrating on her computer, which she controls with the movement of her eyes.
Tall rectangular lines of different widths and in shades of blue, purple and green are painted next to each other against a bright yellow background, giving the impression of a forest of trees. The leaves at the top of the trees are represented by squares and rectangles of different sizes, and they are different shades of green on the left hand side of the painting, moving to shades of orange on the right.
A screenshot of a Zoom meeting. We see three participants in two boxes one on top of the other. The head and shoulders of Sarah Ezekiel, a white woman with curly grey hair and glasses, is in the box at the top, and in the box beneath hers are Melissa Wan, a white woman with black hair tied in a high ponytail and who is smiling, and Andrew Irving, a white man with salt and pepper hair and beard.
Sarah Ezekiel, a white woman with curly grey hair and glasses smiles at the camera. She sits on her sofa with a bottle of Jack Daniels in the crook of her arm, and loads of packets of Walker's Roast Chicken crisps covering her other arm and the sofa.
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