£5.00
141 in stock
By Pauline Pearce
ISBN: 978-1-904697-45-9
Published: 2005
Pages: 100
Key Themes: autobiography, neurological movement disorder: dystonia, strength, resilience, day-to-day
“Full Circle is the remarkable autobiography of Pauline’s life with the neurological movement disorder known as dystonia. Rarely can one read such an honest, appealing and well-written account of a life turned upside-down by dystonia. Courage and honesty are hugely over-used words nowadays but they apply in abundance to Pauline’s story, which I found genuinely gripping” – Philip Eckstein, Chief Executive of The Dystonia Society
Description
This is my story written from the heart. It might, initially anyway, be an uncomfortable read but this is my unabridged story – the truth of my life as it was as an adolescent and into early adulthood.
Some might say, perhaps, it would have been better unwritten – that, in many ways, I am exposing something too personal that should remain within me rather than in written, exposing words. Yet I feel no shame in the text I have penned. Pauline Pearce
Book Extract
Why do I feel so sad? I have so much to be thankful for – a good husband; a beautiful, yet temperamental, teenage daughter; a “nice” home, in a “nice” rural Cheshire village and (plus I do stress this) I am sitting in the hot sunshine on a veranda overlooking the Amalfi coastline, one of the most scenic views in, not only Italy but in the entire world. Then – why sad? Why are tears just a nano-second away? Why if I could just doze off in the heat, in the beauty of the surrounding never to re-awaken, why might that feel so good? I’m tired – not tired of life in general – that has potential, new experience, new adventure ahead.
No, I’m tired of my life and the constant fight I feel everyday is becoming. I’m 45, yet sometimes I feel double this, as I strive not wanting to give in to the illness and pain, both physical & psychologically, that constantly exhausts me. Now would be a good time for an ending – in the warm sunshine, in these beautiful surroundings before life becomes more burdensome and my capabilities become more limited. Before my life shrinks any more. I’ve never quite understood why so often, on war memorials, mention is made to the sadness of young men cut off in their prime, yet – as a positive – their bodies never ageing.
They’ll be remembered at the age they met their maker – for the beauty of their youth; for the life potential they had, yet didn’t fulfil; for the perfection of their fit, young bodies. I’m scared of death (even though a Christian) – the uncertainties, the finality but, perhaps more, the mode and shape of its advent. I’ve seen too many friends, near my own age, die recently. I’ve watched their gradual deterioration, their loss of dignity as illness stripped them of mobility and independence – bed pans, bed baths, loss of control of bowels and bladder; returning both in body and mind to infancy.
That scares me. Yet, what of my future? Do I want to cling on to life by the tips of my fingernails, knowing I may endure this? Is this deterioration happening, as I pen this paper? I feel so. Life is different now. Little by little quality is ebbing away, no matter how hard I try to maintain normality as it once was. I’m living a fool’s paradise. I push myself, often beyond my limits, trying to prove this quality is still there. It’s the uncertainty of my illness and, maybe, its progression that scares me. How far will it deteriorate?
How bad will it get? Why is it so unpredictable and no-one can give me any definite answers? I push myself for my family – for husband, for daughter, even for myself. I want them to see me (and me to feel) as “normal” as possible and that we, as a family, don’t have to change our established routine – evolved over the past 16 years. But it’s not really working. I see this but do they also? Sometimes, despite my fear of death and possible nothingness – this illness has even challenged my faith of life eternal – I’d just like to slip away but it would have to be gentle; kind to me; unknowingly planned, like slipping into sleep with,(as now), the Ravello church bells chiming, in the gentle sunshine and quiet breeze.
Not for me the planned self euthanasia of pills or toxic fumes. Those days are long gone. That was the old selfish me. Yet how can I slip away even if I prayed hard enough for this? What about those left behind – husband, child? I know, at times, they are intolerant and frustrated at my limitations and show it which hurts so much!. They suffer too because of my illness. I can’t do what I used to do for my daughter – ferrying her to friends, shopping trips; swimming together – all precious times of bonding, of getting to know one another better. Yes, mum’s still “around” but I feel like a shell; a vacuum. The body and mind’s still there but, so much of the physical capability, gone. Part of me – and often the part daughter wants, has gone. Maybe, never to return.
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‘Bajan Affair’ by Pauline Pearce
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