Veterans: A cheerful poet

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 half-empty.

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 19.

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 Stirred.

ALIYA

She came alone in 1984 and went to the ulpan in Netanya and later to Kfar Saba where her brothers were living.

“Straight after 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.

In 1989 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 morphine.

In 1991 a new treatment became available and she would go into the hospital three times a week every other week for the intravenous treatment.

“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 Parkinson’s.

“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 daughter.

“The Gaucher’s was under control, but this was new,” she says.

The Parkinson’s hit badly, as she had anticipated.

“The younger you get it, the more aggressive it is,” she explains.

But with 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 people.

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.

“I’ve got a happy gene,” she says, “and it keeps me going. Without it I would have lost hope.”

She has a wonderful neighbor who comes in to help very often.

“I can’t even put my own bra on,” says Benton with a grin.

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 in.

Here is the opening: Yes I have Parkinson’s, there is no mistake.
With my resting tremor, I jiggle and shake.
I shuffle along with a change in my gait.
Oh the joys of Parkinson’s, there is no mistake!