[BobbyB]

Sarah Ezekiel reveals what life has been like 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.
Living With MND


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 fi rst 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:
www.myspace.com/sarahezekiel
To those people who pity me (and
I know who you are!) please don’t
because I love my life just as it is.


For more information on MDA:
MND Association
David Niven House
10 – 15 Notre Dame Mews
Northampton
NN1 2BG
Tel: 01604 250505
Web: www.mndassociation.org


http://www.jlifestyle.co.uk/jlifestyleissue1.pdf