‘Trapped: My Life with Cerebral Palsy’

June 1, 2015

All Together Now

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Hello my lovely friends. I’ve not been writing as many blog posts as usual, mainly because I’ve been so busy doing articles, following up leads, and setting up talks and readings which are coming up later on this year, as well as dealing with end-of- year stuff at school and a child who is hyper about the approaching summer holiday. Schools in Scotland break up at the end of June.  In the meantime, over the last few months, I have been learning so much, not only about what works, but how to keep moving forward in the best way. ‘All together now!’ shouts the sergeant at the front of the line. S/he may be right.

Often, we invest time and energy, and we have no notion whether they make any difference to the outcome. It is my experience, however, that whenever I act sincerely, small steps of faith take me forward and deliver unexpected gifts when I am not looking for them.

Recently, an article appeared featuring yours truly, for which I am most pleased and grateful. Thank you to ‘All Together Now’ who featured this piece.

Writing about how disability encounters the mainstream, it’s not so much about statistics, though these remain fairly daunting. Neither am I especially keen to tell other people what to think or do: we all want as good, honest, happy and fulfilling lives as we can achieve. Yet, to harness all ability so that everyone can make the most of life, there is still room to improve awareness about the effects of disability, as well as improving accessibility, education and attainment levels. Where these are on the table for discussion, I encourage and motivate in any way I can. With small steps of faith, we all make a difference.

 

Earth, the Moon and Callisto
Earth, the Moon and Callisto

Thanks for reading.

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May 18, 2015

Wellbeing Web Magazine

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Janet Holt and Helen Parker together wrote an amazing book about Janet’s earlier life experiences, titled, ‘The Stranger In My Life’. As a relatively inexperienced reviewer, I remember reading large chunks of this book and being mesmerised. I sat in the dark as the gloaming grew deeper and read from the screen until I was chilled through; though I deliberately did not read the ending. Instead, I promised myself that I would read the whole story when it was finally published, as I had no doubt it would be.

Janet and Helen have remained firm friends ever since. Janet recently read my book, liked it, and then very kindly invited me to contribute to Wellbeing Web Magazine. My article appeared on 3 May 2015.

I’m very pleased that it has produced an amazing response on FB. I am indebted to Janet Holt and Helen Parker for inviting me to contribute to it. Because of the numbers of people who liked and shared it, I am able to offer three copies of my book, Trapped. The winners have been notified.

Waterhouse 'Gather Ye Rosebuds' 1909
Waterhouse ‘Gather Ye Rosebuds’ 1909

I sincerely hope that Wellbeing Web Magazine goes from strength to strength. I shall be following its progress and reading its articles with interest. As regular readers of what I write will know, wellbeing is a subject very close to my heart.

Thank you for reading!

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May 18, 2015

Ten Things You Never Knew about Cerebral Palsy

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Ten Things You Never Knew about Cerebral Palsy (or Were Too Embarrassed to Ask)

When I started writing this article, I was thinking, ‘What do I know about CP? I’m just a woman who tries to ignore that side of things and get on with life.’ I always have been, and I maintain that a gentle, light ignorance of ones weaknesses is probably as good a way as any to get the best from life, which often feels fickle, even in our happiest moments. But the more I wrote, the more I found myself remembering details and ideas. I found lots to write about.

Being disabled has made me rather more introverted than is perhaps best, so actually raising my head and noticing that others are often interested and keen to learn more about CP and about disability in general, is a great way to widen my perspective. And I am so pleased if I can add humour to a subject that many people shy away from, feeling unsure and awkward. Life is variable and not really awkward, but because we are wary of being explicit, misunderstandings crop up all over the place. I try to write these out, so that I can more easily learn to accept my failings, without falling into the trap of hating myself.

One of the annoying things about CP is that it is as variable as we are. One of the wonderful things about CP is that it is as variable as we are….. which can make it difficult to explain.

Miranda - by John William Waterhouse
Miranda – by John William Waterhouse

 

For giving me the opportunity to explain, I am indebted to Lucy Walton-Lange, Editor at FemaleFirst who has published my blog post ‘Ten Things You Never Knew about Cerebral Palsy (or Were Too Embarrassed To Ask)’  on 13th May. Thank you, Lucy!

If you have any questions or comments, please do add them at FemaleFirst, or contact me.

Thanks for reading

 

 

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May 12, 2015

Writing the radio play of the book

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I’ve written the book, so I thought that writing the radio play of the book would be straightforward. In a typical response that would make Eddie laugh, I discover that it is, and it isn’t. It is about events and scenarios that have been thoroughly rehearsed; and it isn’t like anything I’ve done before.

Adolf Holzel - Der Liebesbrief
Adolf Holzel – Der Liebesbrief

My attempts at research suggest that conventions around How to Write a Radio Play of a Book are flexible, and as variable as the people who write them. Though clear presentation is obviously important, to help those who will be called upon to breathe life into words at the mike, it is the less obvious aspects of dramatic reconstruction that are more difficult, especially as I rarely venture into writing plays: editing three scenes into one to add impact; being flexible with timelines so that the story unfolds interestingly; adding dialogue that you remember, which is necessary for continuity in an aural medium but which you would not need to include in a book, where pictures are built differently; and pace, which dictates that although dialogue is obviously key, it should be illuminating and to the point….

It is tiring, this venture, but I seem to be collecting my own set of conventions, all of which help to make the process smoother and more enjoyable. I am remembering, reflecting and learning all the time, and in the process I hope my writing improves. Only time will tell.

Thanks for reading

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May 5, 2015

What Writing Means to Me

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Recently, I have been reflecting on what writing means to me, and whether my time is well spent. I mean, seriously, what is it all about? Why have I put myself through five of the most difficult, emotionally draining and – let’s face it – financially unrewarding years of my life? If I was an outsider, considering pros and cons, on the surface, I would conclude that Fran Macilvey is peculiarly driven: driven to work all-nighters while her family sleeps; driven to continue with the next project, the next hope, despite setbacks, illness and puzzlement from those more sober and grounded citizens of my acquaintance who really would prefer that I would apply my energies to a proper, reasonable, sensible and obvious job. Why, for goodness’ sake, must I always be different?

Because I am, is all. I make that sound nonchalant, easy to say. But if my life has taught me anything, it is the total futility of trying to keep up with other ‘ordinary’ people who have ‘ordinary’ jobs. I’ve tried that – really, I have – and it has only led to heartbreak and loss of a different kind.

In the old days, the pain was about not belonging, never fitting in, and never really understanding what was going on; I had that sinking feeling which made it plain that I never would understand, no matter how hard I might try. Nowadays, though there have been a few disappointments and false starts, I am more certain that I understand the basics and will continue to make progress. On my present path, every difficulty lends itself to a purpose, for a reason. It is easier to notice the ways in which unexpected outcomes serve a longer-term goal.

And above all, I write so that I may share my experiences with others. I can write, and so I should. I can explain, and so I do, in the hope that those who may read my pieces know that I understand something of their loneliness, their anger, even their desolation. It is not unusual to have these feelings, it is not peculiar or suspicious. They are just part of life.

Gradually, writing had revealed that our ‘bad’ experiences often complement the ‘good’, making our lives a tapestry which, when we look back at it, hopefully fills us with gratitude and optimism. That is how I see myself making the best of life’s knots, at any rate.

Thanks for reading.

 

 

 

 

 

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April 29, 2015

Taking a chance on Life

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I’ve had occasion to ponder what would have happened, if I had never decided to write Trapped. If I had never made the effort, gone the extra mile and stayed up countless nights crafting, editing and refining what I wanted to say, what difference would it have made? My muse is always whispering Go on, life is for taking a chance on Life.  But I could easily – oh, so easily! – just have told that beguiling, soft, gentle, persistent voice to shut up and leave me alone, and what would have happened then?

Nothing.

No-one would have suspected that my sitting quietly and being good was growing more despairing by the minute. My immediate family would probably have borne the brunt of my frustration, and lost the chance to see a kinder, gentler person in that woman seated by the window. But, I would have felt my loss, and I would have said nothing about it and taken no action.

After all, as the world of realism will tell you, there are so many reasons why writing is not practical: it is anti-social; I also tend to work late at night when I should be sleeping; when I write, my body cramps up and I skimp on exercise; I use my life as writing fodder and there may come a time when my friends are loath to speak to me, in case their latest stories end up in my books; I cannot, if I am writing, and parenting etc, also go out and get a paying job.

But there are more subtle, urgent reasons which make writing essential. These include progress, learning what matters, awareness and empathy, connection with others, (some of whom may be feeling lost, alone and adrift in a world where expectations are complex and conflicting); the importance of personal power and responsibility: to understand oneself better and to learn what we are capable of. To feel joy that has its foundation in the decisions we take. To look back and say, ‘See what you can do, with just a pinch of courage!’ Writing and all that goes with it, has taught me about what matters, and has gifted me the confidence – at last! – to go looking for adventure in a spirit of optimism and determination.

Alfred Stevens - The Letter
Alfred Stevens – The Letter

I say that is a lot to gain.

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April 12, 2015

Writing is a funny business

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Writing is a funny business.

I’ve just come back from the most wonderful holiday time, spent with my family. We went up North to be with my sister and her husband and son, and while we were there, our brother and his three kids came too. We have a rather extended family, and we are now living in different places, different continents, even, so to meet up is a rare and truly wonderful treat.

The three kids are like their dad: thoughtful, clever and so quick. They made me smile and laugh with their antics and their way of seeing the world. I like kids because they show me thing I have generally forgotten about. In the business of writing, playfulness is often overlooked, yet it sheds light on what truly matters: joy, peace and sharing love. I truly love my brother too, and am grateful to be reminded just how much his joy means to me. In some ways he has had a tough life, and I was so pleased to see him smiling and happy.

A_beautiful_flower_in_Sikkim_01

While I’ve been away Susan Finlay has kindly published my short article, ‘Writing is a Funny Business’ on her blog.  I hope you will have a read of it, and some of the other articles in the series. Thank you, Susan, for your thoughtful support, over many years. It means a lot to me.

 

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March 30, 2015

Writing a radio play of Trapped

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I thought I had enough to do, what with holidays round the corner, and books to edit and finish, and talks to write and writes to talk….but apparently, I am also writing a radio play of Trapped.

A very different experience this is turning out to be. I am a very visual person, so having to write lots of dialogue and background information in a way that can be conveyed with a voice is rather like writing with the eyes shut. Not uncomfortable, but an interesting and very revealing challenge.

What to include and what to leave out will also depend not only on what is within my knowledge to recount, but also what will work, on radio. For obvious reasons, I am using the book as a template for the draft. I can add lots of interesting dialogue which had no place in the book, but I have a feeling the radio play will turn out very differently.

My friend Lucinda E Clarke is an expert with dialogue and has sent me part of a radio play she has written which she says is unfinished. Thanks for your help, Lucinda. I think you could finish that play…

Brox Sisters, Radio Teddy Bear
Brox Sisters, Radio Teddy Bear

 

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March 6, 2015

Capability Scotland – Thank You

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Capability Scotland – Thank you!

I am honoured to be part of your launch for the ‘Great Scottish Book Off’. It was a privilege to represent you on ‘Good Morning Scotland’; (at 02:36:14) and the appearance at Blackwells last night was such fun. Thank you for organising everything so beautifully. It is a total pleasure to work with you, and I hope that my small contribution has helped to give your campaign extra lift.

Thanks also to Blackwells for their generous support hosting last night’s event.

I just want to say… I sincerely appreciate everything Capability does to promote positive, inclusinve living. We all need Capability, to remind us that everyone has something valuable to offer to the big picture. Our part may feel small, only one piece of the puzzle, but…you know how it feels when that one piece of the puzzle is missing. Imagine spending months putting together a thousand piece jigsaw, only to find a piece missing. And if that puzzle is made up of millions of pieces…..?

Whether we are campaigners, volunteers, tea and scone makers or listeners, each one of us is uniquely important. We celebrate life’s richness, when we work together!

Thank you and bless you, always.

Rose heart

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March 4, 2015

Capability Scotland – The Great Scottish Book Off

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Capability Scotland – The Great Scottish Book Off

Tomorrow, on 5th March, which is designated as World Book Day 2015, Capability Scotland are launching their newest fundraising event, ‘The Great Scottish Book Off’, which will then run through the rest of March.

Paul Delaroche, Portrait of Son Joseph Carle
Paul Delaroche, Portrait of Son Joseph Carle

Family, friends, colleagues and neighbours are invited to get together and swap pre-read books. If there is a modest charge for admission, or a collection, the idea is to pass these funds to Capability, to further their work and projects in Scotland.

I am delighted that tomorrow morning, at 8.30, I am making a guest appearance on Radio Scotland, live from their Edinburgh Studio, to help publicise Capability’s campaign. I look forward to a friendly and candid interview. Later in the evening, at 18.30 – 19.30 I shall be giving a short talk and a reading from ‘Trapped’, as well as answering questions. If you can, please do come along to Blackwells, South Bridge, Edinburgh. It is going to be a great event.

My sincerest thanks to Capability for inviting me to be part of their event, and to Blackwells Bookstore, Edinburgh, for being so generous and accommodating.

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