THE BLOG

Presenting Gaucher and Parkinson's

12/03/2015 11:43 | Updated 11 May 2015

The DNA lottery has dealt me the booby prize of receiving two diseases, but ill health doesn't stop me living life to the best of my ability. "The show must go on", as they would say in the theatre. I often feel as though I'm performing in some bizarre black comedy, a one woman show, starring yours truly. How I wish it were for one night and one night only! But this is an extravaganza that goes on and on like a long running West End Production.

No matter how much Gaucher and Parkinson's disease push me, sometimes to the very limit. I battle on regardless, for my strength of spirit and resolve just get stronger with every indignant push. I am truly stubborn, and although under no pretence what the final act will be, until then I will give it my all, and put on one hell of a show, for life is no rehearsal - this is a live performance.

Being interviewed recently about living with two serious diseases, the reaction of the reporter got me to thinking. I began to question how many people waste their lives by simply existing, and only once confronted with a diagnosis or a life changing event, make a conscious decision to actually live life to the full and realise what matters most. Why does it take earth-shattering news to move some people into action, shaking everything up and changing their safe undemanding existence? Suddenly each day counts, everything appears different, and with clarity they are able to really focus on what is important.
Granted, it takes courage to step out of one's comfort zone and try things one never dream of doing. It can be a little scary and unnerving changing comfortable set routines and schedules that may have run like clockwork before, which allowed one to comfortably sink into a false sense of security, requiring little thought or worry. When an unexpected diagnosis or event throws a spanner in the works, well laid plans are hurled up into the air, and not knowing where they will fall, a sense of order is lost. Questions never posed or thought of, come rushing to mind. A deep desire to do something of worth with one's time, to make a difference to society, having purpose and a reason to get up each morning become crucial. It is human nature to try and look at the glass half full, and endeavour to make sense or reason, hoping to rationalise a terrible diagnosis or situation.

With age comes wisdom, but wouldn't it be great if we didn't have to endure such awful diseases or heart wrenching events to enable us to be all we can, leading fulfilling lives, being in the moment and appreciating the beauty that surrounds us.

Grab your script and if you lose your lines, improvise, adapt to your changing circumstances and make the most out of each day. Stop what you are doing to give your children the full attention they deserve, if you can manage to steal an extra kiss from your spouse, then sneak one in. Instead of thinking about the things you don't want, such as Parkinson's, (and I can't think of anything I want less!) concentrate on the things you do want. Don't let any chance of happiness pass you by just because you suffer from ill health. Make a conscious decision to be happy, optimistic and hopeful.

So don't wish me good luck, or as in theatrical terms: "break a leg" (perish the thought), for every day as the curtain goes up in Presenting Gaucher & Parkinson's on my own personal stage, I tell myself, things could be worse! Along with fellow sufferers around the world, I count my blessings every morning and take a private curtain call each night for making it through yet another day.
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