Sarah’s Story: Enabled by Technology, She Paints Despite Motor Neuron Disease #MDN

Meet the artist who paints with her eyes! Sarah Ezekiel was dealt a devastating blow with her diagnosis, but has used technology to overcome obstacles. You can connect with Sarah on her website or follow her on Twitter @sarahezekiel.

Our latest guest blogger in our Through the Patient Lens series.

Sarah’s Story

I was diagnosed with motor neurone disease in April 2000, aged 34. My symptoms were slurred speech and weakness in my limbs. I was pregnant with my son, Eric, and my daughter, Aviva, was 3 years old. I had been with my husband for 10 years and we were very happy and enjoying life. My diagnosis was like a thunderbolt and changed our lives forever. I was absolutely terrified and in total shock. I didn’t know anything about the disease and the thought of dying and leaving my children was unbearable. After Eric was born, my progression was rapid and I became severely depressed.

My marriage started to break down under the strain and I remember crying every day. Our children were too young to understand what was going on, but my daughter was devastated when my husband moved out in 2003. I couldn’t care for my baby because my arms were too weak, so my local authority provided carers. It was very difficult for me to watch strangers caring for my children, and Eric never had the love and comfort that only a mother can give.

 I was struggling to speak and my hands were too weak to write. Communicating with my carers was extremely difficult, until I was given an assistive technology computer in 2005. That enabled me to communicate again, email people, shop and bank online and to use social media. I had part of my life back after years of being locked into a very lonely existence.

 I started to attend my local hospice soon after diagnosis and it has been a real lifeline for me. I attend their gym twice a week, where I cycle and do leg exercises. I see the doctor regularly and he takes care of all of my medical needs. I believe that good nutrition, exercise and quality sleep are essential for people with MND and the hospice helps me to achieve those goals.

 My life really changed in 2010 when I started using a Tobii eyegaze computer, visit thecomputeradmin.com. After a couple of years using eyegaze, I discovered that I could paint with art software. I’d studied art and history of art and had always enjoyed painting and drawing. When I lost the use of my hands through MND I honestly believed that I would never create anything again. I was wrong and I’m now an artist and have exhibited all over the UK and even in Qatar. I love being able to create again and feel much more content.

In 2012, I started working as the Secretary of my local MND branch and also joined the Board of a charity called Movement for Hope. They are both voluntary positions and I really enjoy my work with them. I take minutes at meetings and arrange fundraising and awareness events as well as art exhibitions. My work keeps me very busy and I don’t have time to dwell on my illness.

My children are now teenagers and much more independent and understanding. They are lovely young people and I’m a very proud mother.

In September 2012, I met a kind, considerate man and we have been together since then. I’ve become used to being disabled and just do the best I can. Most people with MND don’t survive as long as I have, so I’m grateful to still be here, and I embrace every aspect of life.

http://sarahezekiel.com/
http://eyegazeartists.tictail.com/

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Thank you, Sarah, for sharing your inspiring story! 

Do you have your own inspiring message to share? Please visit Share Your Story and tell us about it. We’d love to hear from you!

For more installments in our #PatientLens series click here.

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