After being diagnosed with Motor Neurone Disease at the age of 34, mother of two Sarah Ezekiel became severely depressed. Now an artist and campaigner, she tells ehospice about the technology that has completely changed her day-to-day life.
I was pregnant with my second child when I was diagnosed with Motor Neurone Disease in the year 2000. I had thought my symptoms of slurred speech and weakness in my limbs were pregnancy related so I mentioned them at an antenatal appointment. I was referred to a neurologist who immediately knew what was wrong with me.
My diagnosis was like a thunderbolt and changed my life forever. I was absolutely terrified and in total shock and denial. I didn’t know anything about it or how to cope, and the thought of dying and leaving my children was unbearable.
After my son Eric was born, my progression was rapid and I became chronically depressed. My marriage broke down and I was unable to care for my children alone when my husband moved out. I also began to lose my speech and communication was difficult. I felt completely hopeless and never imagined that things could turn around.
I experimented with various different assistive technologies but none of them worked for me and frustration made me give up. I was entirely cut off from everything and spent every day at home watching television with my young baby, with carers who couldn’t understand me. Losing my speech made me feel like I had lost my identity and personality. I used to be a chatterbox with a dark sense of humour and now I was invisible.
In 2010 I discovered that people in America and Europe were using Eyegaze, a technology which allows you to use a computer just with the movement of your eyes. Cameras pick up light reflections from your pupils and translate the movement of your eyes to mouse cursor movements.
Thanks to this incredible technology I’m now able to surf the internet and send emails, and am also able to do things like control my TV, my curtains and open my front door. When my kids leave the room with something blaring on TV, I can change channel! It’s wonderful to have some control back, after so many years of dependence.
I had always wanted to be a fine artist, and studied art and history of art for A Level, before moving on to an art foundation course. However, I had to earn a living and so dropped out of college to work in a shop before doing a secretarial course which led to a career as a Personal Assistant in publishing. Travel, marriage, babies and MND followed next and my dreams of being an artist ended…or so I thought.
I found software that I could use to paint on Eyegaze, and once I started I couldn’t stop! The process is long and painstaking and some pieces can take months, but my surroundings are so much more colourful and I feel like I have a new lease of life. It’s quite astonishing that my work is now quite similar to the work I used to do with my hands.
This technology has completely changed my life and I am passionate about improving access to it for others like me who have lost their speech and ability to express themselves.
In April 2018 Simone Enefer-Doy, Chief Executive of the charity Lifelites, reached out to me and invited me to be a patron. I immediately said yes! Communication is a human right and it’s imperative. I felt so frustrated when I lost my speech and it’s much more difficult for children to be unable to express themselves.
Every child uses art to express themselves from a very early age and disabled children should have the same opportunities. They deserve the best palliative care and equipment to enjoy the time they have and I know that the work Lifelites does with children’s hospices will ensure that happens. It’s wonderful to see the charity donating this technology for free and I’m so happy to be a part of it.
I was recently invited to talk at their free conference in Birmingham, which is a fantastic opportunity for children’s hospice staff to come together and learn how to use the donated technology to its full potential for the children they care for. Part of the charity’s work is to ensure that hospice staff have all the support and resources they need to use it properly and effectively, and the conference is just one way of providing that service. It was wonderful to see so many people who are as passionate about palliative care as I am, and I hope that I have helped to show them the power of this incredible technology. It really is life-changing.
For more information visit Lifelites
To see Sarah’s work, visit her website