I have sadly lost two brothers, but thankfully still have two others,
one of whom shares my fate in being born with Gaucher disease. I have often
heard of the term “sibling rivalry”, but being the baby of the family, I'm glad
to say I have no first-hand experience of this. I feel particularly close to my
brother with Gaucher, which I'm sure would come as no surprise to you, for we unfortunately have so much in common, understanding each other far more than anyone else could
possibly imagine. I treasure our
relationship, feeling close to each other, we are able to honestly discuss the most
intimate of issues and without much explanation or lengthy discussion, know
exactly what the other is trying to say and is experiencing. There have been
many occasions where we both suffer the same bone pains in the same place at
the same time; uncanny, unlikely? a little strange, but nonetheless true. I'm sure a doctor would have a hard time explaining this, but our close bond that invisibly
ties us together is inexplicable and goes beyond comprehension. Both of us have
the “happy gene” that I have spoken of, and although this gene does not really exist,
it is the best phrase that I can come up with to explain our strong fighting
spirit, dry British sense of humour and a determination to stay cheerful
despite our daily fight against chronic disease. If you think having Parkinson’s
is bad; try adding Gaucher disease into the equation, and see how you would
fare. I wouldn't wish this horrendous combination on anyone.
About me
PROFILE:
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, October 9, 2012
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I remember hearing that the brothers also 'shared' dental pain at the same time, even though they were in different countries and had no knowledge of the other one having dental surgery! A very special family, indeed.
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