About me

I have been writing poetry and stories since I was a child, and a love of reading was instilled in me from an early age. I am passionate about writing, and hope you enjoy the books I have written. Whilst most of you sleep soundly in your beds, like many Parkinson’s patients, insomnia dictates, so during those hours that sleep eludes me, the house is tranquil and quiet, an atmosphere perfect to immerse myself in writing. My life has been a series of strange events, which have without doubt contributed to my creativity. To publish anything is to bear one’s soul to the world. It is to stand naked and let everyone see who you really are. I have poured my heart and soul out on paper and I hope to share this journey, immersing you in a story, capturing your attention and firing the imagination. Through my writing and public speaking I hope to bring greater awareness to the general public about living with chronic disease.

Friday, June 27, 2014

Shedding A Little Light

Well I've written in some pretty strange places before, and out of sheer necessity, used unusual things to write on when my trusty writing pad is not at hand, such as paper serviettes in a restaurant. I'm a writer at heart, always have a story to tell, and when inspiration hits me, I am compelled to write straight away, or my words and thoughts of the moment are lost. So here I am at 04:00 in the bathroom of a B&B we are staying at overnight attending a family wedding. You are probably thinking I'm writing on a roll of toilet paper - for what else could I find in a bathroom? But you would be wrong. Toilet paper far too thin and fragile to write on, one has to be resourceful. Under the two glasses by the washbasin, I found round paper doilies and somehow managed to separate the thin layers ending up with four circles of paper to write upon. Looking on the bright side, luckily one of Parkinson's peculiar many symptoms: "micrographia", helped me in this situation, to fit what I wanted to write on such small pieces of paper.   

Staying in unfamiliar surroundings, I became acutely aware not to fall and remember where I'd put my things should I need something in the middle of the night. Not wanting to wake my sleeping husband who suffers enough disturbed nights thanks to me, I ensured my pills were easily accessible with a glass of water next to them. Thinking I was well prepared, I hadn't taken into account, when the lights were turned out, the absolute darkness that enveloped the room. I couldn't even see my hand in front of me it was so dark. It was at this point I came up with the bright  idea (albeit it rather late, but shall bear it in mind for next time) that a night light would have been most helpful instead of cautiously feeling my way and trying to remember the layout of a an unfamiliar room in complete darkness.

I couldn't see the time on my watch, and didn't know how long I had before my first pill of the day, so maybe a travel clock with  illuminated numbers would have been the ideal item to take with, some of which have a fairly bright light shedding enough to allow me to see what I was doing.

I'd like to shed some light in sharing with you the story of a remarkable young woman who has a website dedicated to Gaucher disease. On 20th June she ran a night ultra-marathon, not only for herself and to raise awareness of the rare disease we both suffer from, but she also ran in my name. I was so touched and honoured, I have written about her courageous run in this week's article of The Huffington Post. (Photograph courtesy of Bettina Janchen.) 

1 comment:

  1. I feel better knowing that I'm not the only one always writing on random bits and scraps. Your commitment to keep on writing is what brought us together Elaine. Thank you for sharing my running journey this week. I continue to hold on to the rose petals from your garden - perfect inspiration.
    -Emma Rooney