I remember my first day at work (many
years ago when I was young and naïve) and walking into the office with a spring
in my step, full of confidence, my new co-workers and boss looked me up and down with
curiosity. Dressed in my twin set and pearls, I resembled the epitome of an
English lady, as if I had stepped off the set of the BBC Television series
"To The Manor Born" with Penelope Keith by my side. I was the token
touch of British etiquette, gracious and adhering to correct office protocol,
brought up with good manners, and a sense of propriety. I was a curious
combination of a young woman mixed with an era that seems now almost lost.
Although I have long cast off the infamous outdated "twin set and
pearls look", fundamentally I guess I am the same person at my core.
Scrupulous at time keeping, meticulous and organised, unbending on telling the
truth, I follow the straight and narrow, upholding what I believe is right and
listening to my instincts.
I was asked the other day, which is a
question often posed to me, "Why do you write every day, sometimes
revealing what most would consider private and personal details of your life?"
I believe in speaking out if it can help others who are travelling a similar
path by talking about all issues related to living with chronic disease; the
more informed a person is, receiving a feeling of empathy and understanding
makes people feel not quite so alone. When
it comes to one's health, keeping two major diseases a secret is impossible,
and I have found it far easier to be open about my situation by sharing my
experiences with others who realise that someone else is going through the same
daily ordeals.
I do not write about religion or
politics but adhere strictly to my topic of living with chronic disease,
focusing on Gaucher disease and Parkinson's, as this is where I obviously have personal
experience. I am not a doctor, merely a patient trying to reach out to fellow sufferers
and educate those who are still in the dark. I do not ask for sympathy, but to
be treated as an equal, with dignity and respect. Feeling comfortable about
yourself, knowing who you really are, standing up for what you believe in and
knowing what's important in life often only comes with age.
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