In spite of the hardships, ill-health and tragedies that have been an integral
part of her life since the age of five, Elaine Benton still manages to smile her
dazzling smile, stay cheerful and think always of the cup half-full rather than
We talk in her Kadima home while she is still attached to her
intravenous medication machine.
“It can be quite boring,” says the
48-year-old very English Benton, who made aliya in 1984 at the age of
Born Elaine Shelter in Potters Bar, England, she was diagnosed with
Gaucher’s disease at the age of five.
Her parents, Fay and Nat Shelter,
were founders and stalwarts of the small Jewish community in the north London
suburb. They were carriers of the gene but did not suffer from Gaucher’s
themselves. Two siblings also had the disease, which is characterized by a
debilitating lack of a specific enzyme, causing bone damage and often
excruciating pain. Another brother, Clive Shelter, a very experienced Zim
captain, was Gaucher’s- free, but lost his life in a freak storm off the English
coast 15 years ago.
Four years ago Elaine was diagnosed with Parkinson’s,
as was one of her brothers. Researchers are beginning to investigate the seeming
connection between these two horrible diseases.
With her innate
resilience and cheerful refusal to let this added blow defeat her, she talks
about her aliya, life in Israel and the new exciting venture of becoming an
author with the publication of her book Parkinson’s – Shaken, not
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She came alone in 1984 and went to the ulpan in Netanya
and later to Kfar Saba where her brothers were living.
ulpan I found a job as a secretary in an importing business in Tel Aviv,” she
says. “In those days there was a big demand for English secretaries and with my
100 words a minute I had no problem getting work.”
She would have loved
to do army service but as a Gaucher’s sufferer it was impossible.
she married Brian Benton, also an immigrant from Britain who had started his own
computer business and who found a ready clientele among the many Anglos who
needed help in their own language.
Their daughter, Toby, was born in
1990.WORK AND HOSPITALS
She managed to hold down her job in spite of
frequent visits to hospitals. Gaucher’s sufferers sometimes undergo a bone
crisis when the only answer to the pain is to be admitted to hospital and given
In 1991 a new treatment became available and she would go into
the hospital three times a week every other week for the intravenous
“It was very disruptive and sometimes I had the feeling I was
living in a hospital,” she says.
But she managed to juggle work and
treatment until 16 years ago when the family moved to Kadima and she stopped
working. Being able to do the treatment at home has improved her quality of life
and she is happy being able to read or watch television in the comfort of her
own home as the medication flows through her veins.
Four years ago she
had to have hip surgery and shortly afterwards began to develop symptoms of
“I knew instinctively,” she says. “My father and a brother
both had it.”
The diagnosis was confirmed by a neurologist, and Benton
returned to Kadima worried about how the disease would affect her husband and
“The Gaucher’s was under control, but this was new,” she
The Parkinson’s hit badly, as she had anticipated.
younger you get it, the more aggressive it is,” she explains.
all its downside – the tremors, the loss of sense of smell, the insomnia – the
illness brought her something almost wonderful.
“I always loved to
write,” she says, “and one night I was lying awake and a line of poetry came
into my head. In the darkness I located a pen and paper and started to write it
down as I knew I would forget it by morning. It was as if I had opened a faucet
and the words just didn’t stop coming forth.”
Later she was told by her
professor that Parkinson’s often enhances the creativity of already artistic
She wrote 10 poems. Brian, her husband, thought they were good
enough to publish. Other people said they were good and funny and sad, and
perhaps they could be helpful to other sufferers.
“I bared myself and
laid it all out in a very raw way,” she says.
The book is available on
Amazon and glancing through it one is made to wonder how someone with so many
health problems can still write in a way that makes people smile.
got a happy gene,” she says, “and it keeps me going. Without it I would have
She has a wonderful neighbor who comes in to help very
“I can’t even put my own bra on,” says Benton with a
Brian and Toby are endlessly supportive and Elaine counts herself
very lucky to have these blessings.
The book, which can be downloaded to
Kindle and bought from her own website www.elainebenton.net
, has already
produced a huge response from readers, with hundreds of e-mails pouring
Here is the opening: Yes I have Parkinson’s, there is no
With my resting tremor, I jiggle and shake.
along with a change in my gait.
Oh the joys of Parkinson’s, there is no
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