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Living with MND

by: Sarah Ezekiel - Last updated: 2008-10-06

Sarah Ezekiel

Sarah Ezekiel

Sarah Ezekiel reveals what life has been life for her since being diagnosed in 2000 with Motor Neurone Disease while being pregnant with her second child. Despite a constant daily battle against the disease, Sarah has rediscovered her femininity and humour and says she is proof that a terminal illness isn’t the end.

I was diagnosed with Motor Neurone Disease in April 2000 at the age of 34, whilst pregnant with my second child. In February 2000 my speech became slightly slower and my left arm weaker. My neurologist told me it was progressive and soon after my son was born I started to experience rapid loss of motor skills in all of my limbs as well as deterioration of my speech.

I think I tried every alternative therapy available and even went to the US in 2003 for stem cell treatment. Funds were raised for that trip at a bingo evening at my synagogue, Od Yosef Hai. I will always be grateful to the Jewish community for their help and support at that time.

I had been married since 1993, having met my South African husband on kibbutz. After my diagnosis he couldn’t ‘see me’ anymore. He soon became verbally and physically abusive and I divorced him in 2004. I have full custody of our children and we have peace now. My lovely mum and 3 brothers helped me through the worst times with my ex. He almost destroyed me but not quite.

My Jewish, hospice doctor is my hero, saviour and mentor. I first presented myself to him as a crying, thin, miserable wretch and he’s pulled me through emotional and physical problems against all the odds. He’s seen me from day one when I had even lost sight of myself.

Rediscovery of my femininity, my strength and humour has been a great journey and I think that I am proof that a terminal illness isn’t the end. I had another relationship from 2005 until recently and learnt that I’m still an attractive, vibrant woman. Unlike some others in my situation I don’t want euthanasia. I don’t think I can choose when to die, so my only option is to get on with it and I do.

I can’t use my arms and hands anymore because they are too weak and operate my computer using the program E Z Keys and a chin switch. Technology has saved me! When Simon Donnelly came to take some PR photos for my computer company I immediately felt that he could capture the way I feel about MND. I think you will agree that he indeed ‘saw me’ and the complexity of my disease; that I still like to look funky and have an exuberant love of life.

MND is a devastating disease and the MND Association are raising money to fund vital research that will hopefully lead to a cure. Raising awareness of MND is very important to me and I recently presented to health professionals at Birkbeck University. You can read more about that and me here:

To those people who pity me (and I know who you are!) please don’t because I love my life just as it is.

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For more information on MDA:

MND Association
David Niven House
10 – 15 Notre Dame Mews
Tel: 01604 250505

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