She fights Parkinson's with poetry
Hundreds of sufferers are finding solace in Elaine Benton's writing.
Elaine Benton at the helm of a boat skippered by her husband. The photo is a favourite one. "In it, I look healthy, sporty, full of life. So it's not accurate, but it does portray how I feel on the inside," she says.
Many young women suffering from an incurable disease, leaving them debilitated and in excruciating pain, would allow their lives to be blighted with bitterness. But not Elaine Benton, who was diagnosed at five-years-old with Gaucher's disease, a genetic condition which disproportionately affects Ashkenazi Jews.
She fell in love, married, made aliyah and had a healthy baby (albeit one she barely had strength enough to lift). She underwent excellent treatment in Israel to manage her condition and, despite the increasing pain which forced her to give up work, she lived a fulfilling life.
But four years ago, when she was 44, she was hit by an even greater blow - Parkinson's disease. Her response was not to despair and ask "why me?", but rather to start writing about her increasingly difficult situation.
Parkinson's, Shaken Not Stirred is an e-book of poems which tells, with wry humour, of the daily frustrations and humiliations brought about by a disease that, as she puts it, "never lets up" and has changed every aspect of her life. "I can no longer dance, drive at night, shop for groceries or do the beautiful hand-embroidery I used to love," she says, speaking from her home in the Kadima moshav. "Even showering and getting dressed are difficult. I've become forgetful, I get exhausted from the smallest activity, occasionally choking on food or my own saliva, and am unable to sit still at a dining table, in a cinema or theatre. I walk in a sort of shuffle, sometimes coming to a halt altogether as if my legs are not listening to my brain."
So what's to joke about? "I think laughter is the best medicine," shrugs Elaine, who has touched a chord with hundreds of people since publishing her book in August. "People have emailed me from as far away as America and Australia, as well as England and here in Israel. Some of the messages - from carers and relatives of sufferers, as well as patients themselves, and doctors - were so touching that I cried when I read them."
The poems arose almost unconsciously, a by-product of the disease keeping her awake at night. She would set down themes and rhymes in a kind of automatic writing. "Words would suddenly come to me, so I would find myself scribbling down thoughts and lines in the darkness of our bedroom, not wanting to wake up Brian, my husband, by turning on the light. I couldn't stop writing - the words kept pouring out."
One of her poems is a quiet rant against her wheelchair. "Parkinson's is taking me on a road trip of my own/ Now I have a wheelchair that I'm reluctant to take home", she writes, but goes on to note that "now if my family want to go for walk along the seafront, I can go with instead of staying at home and missing out".
There are compelling reasons to be cheerful, she says. "I know there are many Parkinson's patients who have the additional problem of being depressed. I felt I had something to offer - a way of looking at the bright side, no matter how difficult and hard things are. Somehow, humour eases tension and takes your mind off the pain, albeit temporarily."
It is an outlook she acquired as a child, growing up in Potters Bar in Hertfordshire. "My mother always made the best out of a bad situation, so I guess I learned early on to do the same. I have a fierce desire to live life to the full and a strong fighting spirit. I am determined to make the best of what I have."
'Parkinsons, Shaken Not Stirred', Kindle edition, £3.74 from Amazon or at www.elainebenton.net