Elaine Benton author of “Parkinson's, Shaken, not Stirred”.
Elaine Benton’s new book “Parkinson’s, Shaken, not Stirred” is evoking much response. Writes H. Davies from England:“This is a must for anyone with Parkinson’s or any chronic disabling illness and their carers. It makes you laugh, cry and understand.”
The next time you feel like kvetching about your problems, you might be inspired by someone for whom times are really hard, but who still manages to remain, most of the time, cheerfully upbeat.
Elaine Benton, an attractive former Brit in her late 40s, has Gaucher's Disease, a rare genetic condition more common in Ashkenazi Jews, in which a missing enzyme in the body causes a fatty substance to build up in the cells of the spleen, liver, bone marrow and lungs. The buildup prevents these organs from working properly: the spleen enlarges, bones break, pain and fatigue result. Elaine has had this condition since she was five years old.
"In the early days, there was no treatment, and I was always ill and in pain, but my mother was always very positive and that's where I got my cheerful attitude," she says.
At the age of 21, she came to live in Israel to join her three brothers. She worked as an English secretary and in1989 she married Brian, also from Britain. They have a daughter, Tobi, and live in Kadima.
Today, there is a treatment, though not a cure, for Gaucher's and Elaine takes intravenous medication twice a week. Four years ago, though, she was faced with an even more daunting challenge. She also developed Parkinson's, which has gradually been causing her to suffer from symptoms such as tremors and lack of balance. That condition is also incurable and Elaine knows that down the road, difficulties are just going to increase.
Gradually, she has lost the ability to do many of the things that gave her independence and pleasure, such as embroidery, cooking and shopping. Even getting dressed is a major effort. She still drives, but knows that soon she will have to give that up too. But there is one thing she has discovered that she can still do.
"One night when I couldn't sleep," she says, "lines of poetry starting forming in my mind. I had a pen and pencil nearby, so I wrote them down in the dark. In the morning, I saw that I had written a complete poem. From then on, I wrote non-stop."
The poems relate to her condition and how she copes with it. Mostly, they are light-hearted, explaining with humor how she makes the best of a bad situation. For example:
Cooking has become quite tiresome,
can make me really pis..d
Cling wrap, not a friend of mine, it's off my shopping list!
My husband came home to find me sipping cocktails
I don't advise "happy hour" unless all else fails,
Or you'll be a Parkinson's patient who's gone off the rails,
But if plain sailing gets rough, put some alcohol in your sails!
When she had accumulated a collection of verse, she showed them to a writer.
"His reaction was 'Elaine, this is so honest and straight and from your heart. It's not Shakespeare but there is nothing else like that out there.'"
Elaine and her husband Brian decided to publish the poems in a book – "Parkinson's, Shaken, not Stirred!" Her aim, as she writes, is to "give words of comfort, humor and hope. Information and education is empowerment, and this is my goal: to spread the word."
The book was released in August and is available either in paperback form, at NIS 40 a copy (email@example.com), or as a Kindle e-book through Amazon.com.
Elaine also has a website, www.elainebenton.net, on which she writes every day and which has elicited responses from all over the world.
It isn't only the person with the disease who suffers, as Elaine well knows. Debilitating diseases affect the whole family. "I feel guilty because it's not easy caring for someone with disabilities. They have to watch people they love slipping away from them before their eyes. This isn't what they bargained for."
Caregivers around the world have been touched by her concern and have expressed that on her website. "You have given me a voice," wrote one correspondent.
She credits her husband and daughter again and again in her verse for their patience, love and good humor. She also credits, surprisingly, her dog.
"She is very sensitive to my mood and seems to understand what I need. If I fall, she stands near my shoulder and takes all my weight, to help me get up."
Once, she recalls, the dog saved her life. "I was choking on my pills and the dog saw I was in danger, went to my daughter's room and started barking frantically to call her to help. Having a dog if you are disabled is a huge comfort."
How does she deal with her present difficulties and uncertain future?
"My mother told me that I could either decide to be cheerful and positive, or be a grouch and sit in a corner. Then nobody will want to be around you. To me, there is only one way to go. I have a strong fighting spirit and refuse to let anything get me down."
Or, as she puts it in her book,
Like there's no tomorrow, experience it all,
Grasping life in both hands, I refuse to fall.
My verve for life cannot be extinguished,
The desire to LIVE, I refuse to relinquish.
Read Elaine's article in the Huffington Press/TEDWeekends at this link http://www.huffingtonpost.com/elaine-benton/ive-a-list-but-no-bucket_b_3474690.html