Talking with my brother who also suffers from Gaucher disease, we understand each other only too well. Being in constant pain, day in - day out, the inability to do what we would like to, restricted mostly to the house, it's not easy staying positive all the time. On occasion there are bound to be times when it's just not possible to keep cheerful, and I believe this is only natural. When you know, as my brother and I do, that we're not going to get any better, and sadly a cure for Gaucher, may be discovered too late for us, it's not easy to continually stay jolly and light hearted with a smile on one's face. Those who are in similar circumstances, suffering a chronic condition, I'm sure can relate and understand the frustrations of simply how tiring it is to endure ill health every single day with no break or intermission. I wish I had a magic wand to make all this go away. I can’t even remember what it feels like to have no pain - it's been that long.
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, June 25, 2013
The reality of day to day
Posted by Parkinson's, shaken, not stirred at 7:00 AM