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.

Tuesday, May 1, 2012

Wearing a mask

A friend commented on “wearing a mask” to cover one’s pain or discomfort when in company, and thinking about it later that evening, I have to agree with her, that we all tend to “wear a mask” unconsciously at some point for various reasons. It is a form of self-preservation and a coping mechanism that I acquired when I was a young child. I remember all too well at the age of 11, suffering an acute bone crises (infarction of the bone due to Gaucher disease) and was hospitalised for two weeks. In those days, there was no treatment, and the doctors knew little about Gaucher and unfortunately I suffered agonising pain, not through lack of care on the hospital’s part, but simply down to a lack of knowledge. This is one of the drawbacks of having a rare disease; doctors knew almost nothing about Gaucher back then. Suffering from a rare disease makes life a little more difficult, and being special, may not feel great from the patient’s perspective, but in the eyes of the medical field, you are viewed as a challenge, an extraordinary case that they don’t come across every day, an interesting patient that spices up their day, and makes them put on their thinking caps. Thank goodness times have changed and things are very different for Gaucher patients today. I guess I'm someone who doesn’t do things by halves – when I do something I do it really well; having a very rare disease (Gaucher) and in addition a common disease (Parkinson’s), making my life interesting to say the least!

1 comment:

  1. Elaine, even when in severe pain, you downplay it and 'wear your mask.' What you are giving to other people is invaluable. You are a very special person.