Born with Gaucher disease, I've been writing stories and poetry since I was a child. When I was diagnosed at the age of 44 with Young Onset Parkinson's, naturally a huge shock to the system, a myriad of feelings bubbled up, gushing like a geyser. I couldn't stop the flow of thoughts; it was like taking dictation from an inner source. My fears, dreams, thoughts and hopes all came pouring forth. Living with the stark reality of what lay head, made me realise others were likely going through the same process. Insomnia, being one of Parkinson's common symptoms, I found hours during the middle of the night were perfect for writing; in peace and quiet, uninterrupted by phones or distracted by family. I would sit at the kitchen table writing from my very soul, and found it therapeutic expressing my feelings and seeing them in print. I believe writing helped me come to terms with my diagnosis.
After several people, some of whom were fellow sufferers, had read my collection of poems, I saw there was a greater purpose for my book. Not only did it offer support to patients with Parkinson's or other chronic illness, but caregivers and even doctors who rarely get to read a raw and honest account of what it's like to live with chronic disease. This was the beginning of what has become a journey of self discovery turning into a personal campaign to bring Gaucher disease and Parkinson's to the forefront.
So with book in hand https://www.amazon.com/author/elainebenton, knowing there was an audience waiting to read what I had to say, little did I know the publishing world has changed considerably over the years. I found myself in a catch 22 situation, for no traditional publisher would accept unsolicited material, and no book agent seemed interested in taking on an unknown author, and one who was writing about chronic illness, which let's be honest is far from sensational or a fun topic.
It has been an uphill battle getting the press, media or any publishing house interested, but like most things in life, it's a matter of being in the right place at the right time. Just like J.K. Rowling who was turned down by many publishers, until one finally saw the great potential and audience for her stories, did she eventually get her lucky break. I'm sure the publishers who showed no interest at the time in 'Harry Potter' are kicking themselves today!
Astounded at the overwhelming demand for my book, I was amazed at the strange position I found myself in; no agent or publisher, yet approximately 7-8 million Parkinson's sufferers worldwide, not forgetting their caregivers, family and interested doctors. Feeling like I was wasting precious time, when I needed to get my message out to those in need, I decided to go it alone. Knowing I had a potential audience waiting, my husband and I sunk our own funds into this project. You may not realise, but many famous writers have self-published, such as William Blake "Songs of Innocence" and most of his other books, Edgar Rice Burroughs "Tarzan of the Apes", Lord Byron "Fugitive Pieces", D.H. Lawrence "Women in Love", Edgar Allen Poe, Mark Twain "Huckleberry Finn" and Virginia Woolf "Kew Gardens" to mention but a few.
Inundated with e-mails from fellow sufferers and caregivers, I realised my book written from personal experience, imparted an important message, giving hope, encouragement and information to others around the world, illustrating they're not alone in their daily struggles and darkest of moments. I have worked long and hard campaigning as an advocate for Gaucher disease and Parkinson's over the last few years, so I forged ahead alone. Recently I came across a delightful gentleman; retired journalist and author with many years experience, who has created a writer's guild called indiePENdents.org http://www.indiePENdents.org - a global cyberspace organisation, especially for authors having difficulty getting their foot in the door of the traditional publishing world. Every book is carefully vetted; only those deemed worthy are accepted, given a seal of approval and are added to an on-line catalogue. I'm sure there must be many authors like myself, writing about worthy causes who have something important and of value to impart, but the e-book market is flooded with unknown authors, so this is an excellent way of separating the wheat from the chaff.
Chronic illness has stolen many of my abilities, such as sewing, art work; even simple pleasures like walking the dog or strolling along the promenade hand in hand with my husband. But my aptitude for writing has thankfully remained intact; my story doesn't end here, so stay tuned for I've far more to tell!