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‘It’s a wonderful escape’: Disabled artist on painting with her eyes and living with motor neurone disease

PUBLISHED: 18:05 10 September 2020 | UPDATED: 18:10 10 September 2020

Sarah Ezekiel, 54, was diagnosed with motor neurone disease in 2000. Picture: Ben Gold/Marie Curie

Sarah Ezekiel, 54, was diagnosed with motor neurone disease in 2000. Picture: Ben Gold/Marie Curie

All Copyright Ben Gold ben@bengold.co.uk

“Technology has definitely made my life worth living. I spent my first five years with motor neurone disease (MND) without a computer which was a bleak wilderness.”

Two of Sarah's works: 'Seize the Day' (left) and 'You Surprised Me'. Picture: Sarah EzekielTwo of Sarah's works: 'Seize the Day' (left) and 'You Surprised Me'. Picture: Sarah Ezekiel

Sarah Ezekiel, 54, is a disabled, internationally-recognised artist with two children who uses technology to help paint with her eyes.

She was diagnosed with MND in 2000, at which point her life “completely changed” from being a “full-time mum”.

Sarah, who is unable to move her arms and whose condition is terminal, has used Marie Curie Hospice in Hampstead for therapy and support, helping her to deal with a previous divorce and depression.

She calls the hospice her “second home” and says that she wouldn’t be alive without it.

Sarah says her children are the most important things in her life. Picture: Ben Gold/Marie CurieSarah says her children are the most important things in her life. Picture: Ben Gold/Marie Curie

Through art, Sarah has found the creative expression to “escape”.

Via email, the artist told the Ham&High: “When I’m creating, I’m totally focused on my work and all of my problems disappear, although I worry about my artistic ability and I’m never completely satisfied.

“It’s a wonderful escape from my problems and I’m happy that I have somewhere to escape. I’m much more content now.”

At home in Hendon, Sarah uses eye-tracking technology – which tracks her pupils to control the cursor on her computer screen – to create her art.

Sarah Ezekiel with medical director Adrian Tookman at Marie Curie Hospice in Hampstead. Picture: Katie Hyams/Marie CurieSarah Ezekiel with medical director Adrian Tookman at Marie Curie Hospice in Hampstead. Picture: Katie Hyams/Marie Curie

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Sarah’s works have been exhibited in Liverpool, Guernsey and even Qatar, with her most recent display coming last September at the Oxo Tower in South Bank.

When the restrictions of the coronavirus pandemic subside, she hopes to exhibit again.

The 54-year-old year old credits technology for giving her back some agency.

“Since getting an assistive computer I rarely feel lonely,” she said. “I’ve had several relationships and can control my life and some parts of my environment.

“I can open my front door, control my TV, curtains and page my carer. It’s given me back some independence.”

Looking to the future, Sarah calls the worsening of her MND “scary” but she says her children give her strength.

“I consider myself lucky because I’ve survived long enough to bring up my children, who are now 20 and 23. They are the most important thing in my life,” Sarah said.

“Saying that, being severely disabled is really hard and I sometimes think that people with MND who pass away quickly are lucky.

“But I make the most of my life and I’m the artist I always wanted to be, so it’s pretty good.”

Sarah’s artwork is available here. For more information about the Motor Neurone Disease Association click here.


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