Sarah Ezekiel is a painter. She paints with her eye-gaze.
She agreed to write a short text which is a message to the people in Bulgaria who are affected by ALS. This is her story about despair, hope and the power of will.
Diagnosed with motor neurone disease (MND) in April 2000, aged 34, my symptoms were slurred speech and weakness in my limbs. The official prognosis is 2 to 5 years and I’m lucky to have survived so long. Being pregnant with my son, Eric, and a full time mum to my daughter Aviva, who was 3 years old, I thought that my symptoms were pregnancy related.
My diagnosis was devastating and changed our lives forever. I was absolutely terrified and in total shock. After Eric was born, my progression was rapid and I became chronically depressed. My marriage started to break down under the strain and we divorced in 2004. My situation felt hopeless and I never imagined that things could turn around, but they did.
My speech rapidly declined and communication was very difficult. Finding assistive technology was problematic. Unable to use my computer to research available equipment, and having absolutely no knowledge about disability, I was totally lost. Entirely cut off from everything I spent every day with carers who couldn’t understand me very well, and my young baby, just watching television.
My situation improved in 2005, when my MND Association Visitor introduced me to a rep from an assistive technology company. Shortly afterwards, I was back online, using equipment similar to that used by Professor Stephen Hawking, with a chin switch. I was able to email, surf the net, read and communicate again.
In 2010, the MND Association bought me a Tobii Dynavox eyegaze computer. An infrared bar tracks my eye movements and I’m able to do everything online. I’m also able to control my TV, curtains and open my front door with environmental controls.
In 2012 I discovered that eyegaze technology can be used to draw and paint. Enthusiastic to try, I downloaded Revelation Natural Art software. The process is long and painstaking but I’m grateful that I can create again. I’ve exhibited all over the UK and at the Katara Art Centre in Qatar. The creative road is long and I still can’t believe that I can paint with my eyes!
In conclusion, although a diagnosis of motor neurone disease can seem hopeless, the human spirit is incredible and people can adapt.
Where there is life there is hope.
This post is also available in Български.