Monday 20 October 2014, 20:04 | By

Q and A with artist Sarah Ezekiel

CSL Invites

Sarah Ezekiel was 34 when she noticed weakness in her left arm and her speech slurring. Pregnant with her second child, Sarah was diagnosed just two months later in April 2000, with motor neurone disease. In a matter of months, she became progressively disabled, her marriage collapsed and her world was shattered. As a single parent, disabled and in need of carers, Sarah spiralled into a deep depression. It was only when she was introduced to assistive technology, enabling her to use computers that Sarah started to turn a corner. But the real key to her feeling ‘whole again’ was how the technology enabled her to paint, write her story and be creative again. Interestingly, Sarah uses the same eye gaze technology that Dr Mick Donegan of SpecialEffect wrote about in his guest blog for CSL last year. This artist’s inspiring story and incredible work has caught the attention of national newspaper editors and art critics alike, and Sarah is now recognised as a renowned and well-respected artist, as you can see on her website and online shop. Sarah is also the Secretary for the North West London branch of Motor Neurone Disease Association and on the board of Movement for Hope. We recently asked her some questions about how creativity and technology has helped her find wellbeing and her responses are really quite remarkable. Read on and see an example of Sarah’s work at the end of the post, together with a link to our online gallery incorporating art created by people living with life threatening and life threatening conditions.

sarah ezekiel post pic

When you were diagnosed, you explain how life spiralled – what was the turning point for you and how did you manage to pull yourself out of the depression you felt?

I believe that two events changed my life for the better and there are three people who helped to get me there. I’ll always feel immense gratitude to them. The first one is Jenny Graham, my MND Association Visitor. She started visiting me soon after I was diagnosed and guided me in the right direction. She suggested that I attend the Marie Curie Hospice in Hampstead. I had no interest or intention of going and I’m not quite sure how I ended up seeing Dr Adrian Tookman there, accompanied by my brother. The doctor was kind and understanding, unlike some of the MND specialists I’d seen. He recommended that I should start to attend the hospice gym, which appealed to me. Before diagnosis I used to go to my local gym three times a week and really missed it. I didn’t realise that Adrian would save my life a few times, cure my severe depression and help me through a nasty divorce. He still rescues me when I need him and he makes me feel secure.

In 2005, Jenny introduced me to Hector Minto. He showed me a laptop with E Z Keys and a chin switch. Shortly afterwards, with the help of the MND Association, I had this equipment at home. I was able to email, surf the net, read and communicate again. I actively used the internet to raise awareness of MND. I also created my own website, started to organise my care and do as much as possible to live a normal life. Adrian let me email him at any time, which was a great comfort. Hector supported me with the technology and we became good friends.

So now you were able to communicate more easily, you chose to write about your story – did that help you process what was going on? Would it be fair to say it was a cathartic creative experience?

Writing my story was extremely painful because there were so many people who had let me down and I felt very angry. I think that it was cathartic at the time and a way for me to express my feelings. I’ve tried to finish writing it but I’m in a totally different place now. I find it excruciating to read and can’t face going back to it. I started writing it again, in my present mind set, and it’s a calmer read. I don’t generally have much time to write and prefer painting. I need someone to write it for me, so if anyone out there has some spare time…!!

So painting is your first love – what role has your art played in informing your perspective of what constitutes wellbeing in your life? Did it help you in a different way to writing?

Being able to paint has made me feel whole again. When I was able-bodied I always felt totally content when I was painting, even though creating something brings feelings of frustration to me. Now I feel the same, possibly more frustrated because I can’t use my hands, but I’m much happier. Writing just doesn’t give me the same satisfaction and it’s become a chore now.

I see. And how does the creative process differ now from when you created art before your diagnosis? What are the digital tools you use?

I use Revelation Natural Art software as it’s the only art software that gives me precision. All art software programs are designed to be used with hands so it’s difficult. It’s very painstaking and I’ve become more critical since I started. If something doesn’t look right I delete it and start over. Using my hands was freer and much quicker. I have to select tools, colours and the medium and create the shapes that I want. Paintings take several hours to complete over a few weeks or months. I can only manage a few hours at a time because my eyes become sore. I always wanted to be an artist and I can’t believe that technology gave me that opportunity, or that I can paint using my eyes.

It is amazing technology! Do you think art or creativity has benefits in a broader sense, for people with long term health conditions? Have you heard of other people who use art as a means to finding wellbeing?

I recently started attending art therapy sessions at my hospice because I now have a portable eyegaze computer. I’ve noticed that some of the other patients use it as a way to release their anger, as I did initially with writing. I’m quite interested in observing what people create and how they describe their motivation.

Now, your artwork has received great coverage in the media – how have your health care professionals responded to your art and its role in your life?

Everyone is very happy that I’m able to create again. My carers often watch me painting and ask how my latest painting is going. I enjoy their enthusiasm and interest. My children really encouraged me when I started and are brutally honest with me, which is good.

I get emails from disabled people all over the world with various conditions, who say that my work inspires them and they want to try eyegaze art. I tell them about the software I use and encourage them to have a go. The thought that I have inspired other people to create something is really gratifying.

seizetheday post pic

See more examples of art created by people with life limiting and life threatening conditions at our online gallery.