Reading with Ariel
I hope readers of my blog will forgive me: I have not posted anything this week, because I am narrating the audiobook of “Trapped: My Life With Cerebral Palsy”. Doing so is heart-wrenchingly difficult.
The audio producer kindly asked me if I would like to read. The word “like” suggests enjoyment, fulfilment. So when I said ‘yes please’, that was fine, and doubtless they see no reason for me to be unhappy about it. Of course, I would do it, even if they asked me again, I would give the same answer, but that does not mean it has been easy.
Writing about the painful episodes of my life – that would be from the age of five to about forty-two, then – is one thing. There is something reassuring in writing that conveys meaning which, while it may have to be spelt out, nevertheless maintains a dignified silence. Articulating the same passages with sound, brings a whole level of new pain to the experience which can hardly be appreciated by those who do not have to endure it. Actually, I am familiar with being told what to do, and my obedient persona complies easily with requests to repeat difficult passages. These are the worst, of course, because they are the hardest to get right, to do calmly, and so have to be done again. I pray continuously, not to break down and weep. I ask for help from my guardian angels. I clench my fists hard and beg, and swallow and wait and hope for the next storm to pass, because there are timetables to meet. Because there are only so many times I would like to cry about this, again.
It has something to do with feeling humiliated, and having to expose truths and lies that I have held beneath a dignified silence for so long.
Whatever way I might have chosen to play this, there were always going to be disadvantages and benefits. I learn, the storm passes, and a smile is always waiting to lift me up. Thank God.
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March 19, 2014
I Must Not Be Selfish
Fran Macilvey acceptance, books, cerebral palsy, change, choices, choosing, communication, honesty, hope, letting go, truth, work, writing 'Trapped: My Life with Cerebral Palsy', Amazon Audio Books, cerebral palsy, Fran's School of Hard Knocks, Memoir, Path To Publication 8 Comments
Just when I reach one of my lowest ebbs, there come two pictures of daffodils posted on Facebook by a lovely friend. I gaze at these and determine that what I most need is not courage or resignation, but discipline. And so decided, I don my scarf and coat and go outside for all of ten minutes in search of elusive daffodils nearby. It is windy and cold, a blast of spring air. As I gaze up into the sullen, darkening sky which mirrors my mood so neatly, I realise, This is not about me. I must not be selfish.
In writing my book, “Trapped: My Life With Cerebral Palsy” and now in narrating it for the audio book, I have at last accepted fully that, regardless of how humiliated I may feel, there is more at stake here, than my privacy or my sense of personal dignity. Other people are working hard for me, it is true, and many of them do so for little tangible reward. But the picture is bigger than this. I can read, and write, and I have a wonderful life. I have freedom to move and the space to express my preferences. I know that, most days, I do not do enough with that freedom, but at least I can move away from here. I have always known that, in life, it is having options that matters most.
There are millions of people in the world who suffer in silence, who endure cruelty, exclusion and neglect, and who have no-one to speak for them: millions of children who are misdiagnosed, misunderstood, pigeonholed, forgotten and overlooked: millions of adults who can do nothing about the places they find themselves in. As I write in my book,
“How many others with issues like mine are languishing in the shadows of institutional ignorance because their families listen politely to advice which owes more to prejudice and speculation than to hard facts or compassion? If it wasn’t for my mother’s decision so often to disagree, to go it alone, I would be in a “home,” possibly dead, having led only a teeny little bit of a life. No one would have known anything about me, or uncovered the thoughts lurking behind my eyes. The smallness of my life would have remained a hidden loss, overlooked, as the lives of so many disabled adults are overlooked.”
If my book can strike a blow for freedom of conscience, self-expression, human dignity and compassion, then the small terrors I have to endure are well worth the price. God will give me the strength to do as I must. And, with that faith, together we can all join and create miracles. I do so hope you agree.
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