cerebral palsy

August 17, 2020

Taking refuge

'Trapped: My Life with Cerebral Palsy', cerebral palsy, Fran's School of Hard Knocks, Happiness Matters 0 Comments

Taking refuge

In the process of growing up and getting older, have I been taking refuge behind unhealthy behaviours? In a household which was unusual, it comes as no surprise that I must have learned some very odd coping habits. And of course, I would unthinkingly accept what I saw around me, adapt to it and adopt it as mine too. Odd, that we adopt dysfunctional behaviour in order to fit in, when dysfunction makes true co-operation non-existent or at best, reluctant.

And so in the cause of adapting to what I have seen and felt, I have become too often, and painfully, bad tempered, perfectionist, judgemental, and I have spent a great deal of thought and mental energy in “fixing things”: keeping people happy, not rocking the boat, both appeasing and enabling bad behaviour, even while I was totally unaware of doing any of that.

In the process of realising all this, I’m having to recalibrate a lot of things I thought I understood. I’m having to take fresh responsibility for being too quick to be offended, for being sharp with judgements, and being impatient. None of what we get through in daily life matters so much that it should make us unhappy, and since bad behaviour alienates people, it’s no wonder I’ve felt too often alone and beleaguered.

But it’s never too late to start again. It’s taken me a long time to get to this point, and I’m glad I have, finally reaching a place from which I can work constructively. Painful as it may be, understanding my part in keeping difficult things going, and choosing now to work and behave differently, brings rewards I could previously only dream of, and a kind of peace and resolution that I feel as if I’ve been searching for all my life.

Thanks for listening.

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August 3, 2020

A Great Falsehood

'Trapped: My Life with Cerebral Palsy', cerebral palsy, Fran Macilvey, Fran's School of Hard Knocks 2 Comments

A Great Falsehood

I know, now, that there is no necessary connection between having an impairment and being unhappy.

That such a great falsehood was allowed to be planted and to grow inside me for decades, occasionally leaves me feeling quite devastated. Every revelation has its downside; and while I now feel uplifted and energised by the liberation that comes with recognising this lie for what it is, I can’t escape knowing that I’ve wasted acres of time and energy trying to rationalise, and then escape from, the deeply rooted assumption I held to, that impairment and unhappiness were bound to twist together.

Paralysing childhood reasoning is much easier to dismantle and let go of, when we are allowed to talk it through and can be offered reassurance and a wider perspective. Goodness knows, we all have challenges to deal with. And we don’t all devise a twisted logic to try and make sense of the impossible.

Only now do I see, that I could have been very much happier if I’d had more considered and unconditional love. Though I’m very grateful for all my life lessons, even the hard ones, I’ve come a long road round to the obvious truth, that it is love that makes people happy and well adjusted, able to cope with whatever life throws at them: the kind of love that I now allow myself to feel, and that I try to offer to other people.

In so many ways I have been, and I am, incredibly lucky. And I wish I could have felt that luck and joy – that sheer sense of freedom – more often, when I was younger. I have come late to the realisation that none of our warped thinking matters. We are free, whatever our lot in life, to be relaxed, happy, calm and certain of our confidence and our achievements.

That feelings of freedom and happiness can flourish despite our challenges, is a wonderful lesson to harvest from a great deal of reflection.

Thanks for listening.

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July 23, 2020

Birth family dynamics

'Trapped: My Life with Cerebral Palsy', cerebral palsy, Fran's School of Hard Knocks, Happiness Matters, Memoir 2 Comments

Birth family dynamics

Taking time in lockdown to browse through on-line videos on self-help, I listen, learn and recalibrate a lot of what I thought I understood. My understanding of many of my birth family dynamics changes, firming up, and offering new perspectives that bring me up short, as I ask myself a host of questions which will probably remain unanswered.  

Some answers I do have, however. And this process of reflection is very welcome, as finally I can feel myself standing up straighter and coming out from under a lot of pointless habits, such as needless introspection – Wow! It was never about me after all, there never was anything I could have done to change that – worrying, and overthinking around painful subjects – What might I have done differently? Turns out, not much.

This process of setting to rights and starting again is often painful: I’m having to review most of what I previously thought I had understood about “what happened” and reconsider events in a very different light, as having much less to do with my conduct or perceived failings than I had assumed. Coming to terms with a lot of wasted time and wasted regrets – there was no shape I could have twisted myself into that would have made any difference, after all – has been stark. A process of uplifting liberation from the old narratives also leaves me feeling quietly appalled.  

Children accept what is reflected back at them and assume it is inevitable. So, my childish realisation that my parents both had difficulty accepting my particular suite of impairments was part of the juvenile understandings I collected about life in general and me in particular: “I’m obviously impaired, therefore I’m unhappy, obviously…” As youngsters, we take on board a great many mixed messages, then spend years trying to contort ourselves to make sense of them. So I took for granted an assumption about my world, that I now recon is the Great Falsehood.

To be continued.

Thanks for listening.

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May 26, 2020

What I do in lockdown

cerebral palsy, Fran's School of Hard Knocks, Happiness Matters 4 Comments

What I do in lockdown

What I do in lockdown has altered my views so that all my workaday and long-held assumptions are being challenged.

I’m sure that, six months ago, if I’d said I would prioritise hoovering on Mondays, and washing sheets, taking out the recycling, remembering to place gardening bins on the kerb just to give me something to do of a weekday morning, I would have guffawed loudly. That, I would have opined, would have been as likely as my daughter settling down to do jigsaws, which hitherto she has scorned.

Yet, in the last few weeks, both Seline and I have completed about seven or eight jigsaws each, with no complaint and a great deal of enthusiasm.

Instead of complaining about domesticity, I now thank my lucky stars when I can visit the supermarket, am grateful there is food on the shelves, and shop conservatively, mindful of the twin injunctions to shop as infrequently as possible, but without hoarding. I’m grateful too, for daily acts of heroism from those who keep turning up for work in hospitals, schools and shops, fearful, perhaps, of becoming unwell, but also grateful to have gainful – and such useful! – employment.

One of the good things to have come out of this current situation is the recognition, finally, that the “small” occupations many people have, are vital for all of us. The recognition that ordinary people, going about their usual jobs, are really important to the continuing function of their communities; that to be relied upon, as a teacher, a medical technician or a parent must be, is a useful, indeed one of the best, ways to contribute meaningfully.

Whatever else I may learn, the restraints currently imposed on us have taught me, finally, what it truly means to perform routine tasks willingly and with a peaceful heart. So many of us have to take risks that I am not, nor ever have been, called upon to take. And I am grateful to them.

Thanks for reading.

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April 30, 2020

A different world

cerebral palsy, Fran's School of Hard Knocks, Happiness Matters 4 Comments

A Different World

Lockdown has brought with it the realisation that, for all our privileged existence, there are aspects of the way we live that we must change, if we are to continue having any quality of life. Though they present major challenges, the current restrictions also offer un-looked for opportunities to consider that a different world is possible.

I don’t find that the lockdown restrictions so far imposed have yet changed my daily routines or expectations radically; except perhaps to bring with them the beneficial awareness that yes, I can go for walks, and so I should make the most of that. Because I am only allowed to venture out once a day – though again, that is not such a change from my usual limitations – I find myself rejoicing when I do: official restrictions have made me very grateful and appreciative of the freedoms I enjoy.

Perhaps we will all have to re-frame or curb our notions of what we have grown used to, but the end result is that we are usually more appreciative of what we have.

The season, and the weather, are especially lovely at the moment, the routes are calm and quiet, and I can hear loud birdsong in the bushes that, un-tended, have been left to flourish. They are that shade of almost painfully bright, light green that makes me breathless.

Robins chirping loudly, blackbirds flitting and warbling, song thrushes trilling, do remind me what an invasion our usual motor vehicle noise is. The fresh green grass and the bright and blue skies unmarked by vapour trails remind me, too, that we must find ways to share the world so as not to destroy it.

We can do this, and we must. So I’m grateful for what I have and look forward to a quieter, more equitable way of living when lockdown restrictions are eased.

Thanks for reading.

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March 17, 2020

Self isolation or normal life

'Trapped: My Life with Cerebral Palsy', cerebral palsy, Fran's School of Hard Knocks 6 Comments

Self isolation or normal life

When I was young I would quite often fetch a chair, a book, a drink, a snack and some music on my trusty tape recorder. My Mum would glance wryly in my direction and say, “You’re having a party, aren’t you?” And I would agree, pleased with myself, and pleased also that I didn’t have to excuse my seeming passivity. It was never part of my plan to examine why? Why was I having a party for one?

This pandemic will have far-reaching outcomes for many of us. There is much talk of economic collapse, travel and leisure restrictions, and self isolation. We are alarmed at the prospect of managing without normal human intercourse for two, three weeks, even months.

Which got me thinking. How many of us spend a lot of time alone anyway? For whom is self isolation alarming? Those of us who go to parties, meet lots of people, travel as part of their normal expectations and eat out most lunchtimes may have to start thinking about that. Until yesterday, the prospect of spending three weeks with family at home was bracing, and had not made me unhappy. It was simply par for the course, and, actually, when I thought about it, perhaps I have been used to spending acres of time alone anyway, at home. I’m used to it, and I’m certain I’m not the only one.

It seems alarming to so many of us that we will have to curtail our expectations, but a lot of my disabled friends live day and daily with curtailment, and with expectations that make the prospect of enforced home stays almost a pleasure: no more having to pretend, or make such an effort, or be part of a bigger something that simply refuses to see, and that characterises honesty as self pity.

Perhaps an unintended outcome from this is that we learn to have more empathy for those with so little: the homeless, the poor, the vulnerable, our brave minorities who only wish to belong. I count myself as exceptionally lucky that I have support, love, kindness, options and a sense of humour. And that I am good at living with little, and have been so chronically accustomed to having low social expectations. Ski-ing holidays in the Vosges? Forget it. Parties and clubs? Pubs? Not often…

Thanks for listening. Stay safe.

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February 21, 2020

Using my mobile phone

cerebral palsy, Fran's School of Hard Knocks 0 Comments

Using my mobile phone

Recent family miscommunications have brought home to me the challenges I face when using my mobile phone. “I called you, use your phone!” is becoming a familiar refrain to me, while I cling to the old trusted methods of setting clear arrangements and sticking to them.

It rarely occurs to me to worry about such things, and I do adhere to the old-fashioned view that “I keep my mobile phone for emergencies,” usually quite comfortably. I work from home and am so often here that I still rely on a land-line.

I have contemplated ditching my old-fashioned landline – as I guess from the thin-ness of the current phone book that many people must already have done – and simply using my mobile. It’s tempting. I would probably save money and would not have so many nuisance calls.

But… I discover that it nearly impossible to use my mobile unless I am actually sitting down and have a few uninterrupted minutes to send a text or to phone someone.

The standard image of a mobile phone user is of a commuter with a wheelie case in one hand and their mobile in the other, raptly focussed on texting or conversation while walking sturdily to catch trains or the check-in desk in time. It is that kind of real-time, urgent practicality that escapes me and which, I suspect, is at the root of my reluctance to embrace that mode of being: it requires dexterity I shall never master. Set in my ways as I am – and with big, flattened fingers that refuse to move quickly – that level of multi-tasking is, I suspect, beyond me. I need to be careful when moving around, not distracted by calls and trying to type quickly.

So sorry, folks, I will be keeping a mobile for emergency use only. And I finally recognise that my land-line is not so much a luxury as I previously assumed.

Thanks for listening.

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December 2, 2019

Life would have been easier

'Trapped: My Life with Cerebral Palsy', cerebral palsy, Fran's School of Hard Knocks, Memoir, Path To Publication, The Rights & Wrongs of Writing 2 Comments

Life would have been easier…

Life would have been easier, certainly, if I had ever positively, finally, decided to give up all my ideas of writing “Trapped”, or indeed, of ever writing anything properly. I never did positively decide not to. The idea just kept creeping up on me until it was irresistible, so I guess memoir writers just have to get used to living dangerously…

And I can’t say that, though life would have been easier, it would have been more fun. I would have had plenty more time to worry whether I was doing the best I could, whether I should be writing and whether I was missing opportunities. I would probably have wilted away to almost nothing. But hey, what’s that, compared to the damage we could do, making the effort to write and perhaps, in the process, offending someone else’s notion of propriety?

Memoir is defined as the story of our memories, written in what the industry categorises as “narrative non-fiction” style; that is, like a novel, but with elements of truth in it. The difference with autobiography and biography is instructive. Biography utilises verifiable names, dates, timelines and events, whereas a memoirist  concerns herself with the recall of her memories, which may have little or no bearing on what actually happened: a crucial distinction which in itself reveals both the dangers of writing memoir, and the defences we can deploy in the interests of harmony and to shield ourselves from adverse comments.

It is possible, indeed probable, that on occasion, and perhaps when we least expect it, we will have to contend with unreasonable people. It’s never those whom we assume are bound to be most offended, who are. And when writing anything that we hope will one day see publication, we must accept the risk that there will be those who will be unhappy both with what we have written, and with the fact that we have bothered – or dared – to publish it.

I’ve never let another person’s lack of reason or self-discipline stop me from expressing myself; and, sensible caution aside, I contend that anyone who lets worries such as these stop them writing, is putting the cart before the horse. Publication – probably the point at which most people will read our work for the first time – as a goal can take anything from two to ten years. Writing – which only we need ever read – we can start immediately.

Thanks for listening.

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November 21, 2019

Why do we write memoir?

'Trapped: My Life with Cerebral Palsy', cerebral palsy, Fran's School of Hard Knocks, Memoir, The Rights & Wrongs of Writing 2 Comments

Why do we write memoir?

When people ask me why I wrote my memoir, I can offer many excellent reasons, though it’s never easy to summarise forty years of growing up in a pithy, two-sentence reply.

Though for each of us there will be a differing admixture and flavour, a different weight given to recurring themes, nevertheless the reasons people write memoirs are fairly universal.

We write memoir for many reasons.

~ To share interesting stories and leave a legacy of information for our family.

~ As a way of speaking to others intimately when the thought of conversation is simply too confusing or daunting. I can’t be the only writer who has found it easier to write letters to a boyfriend instead of actually talking to him.

~ To reconcile ourselves to the course of our lives. Coming to terms with our failures and learning to accept ourselves as we are is a major reason why people write. We can, and often do, bury ourselves in fiction as a way of hiding from life, though I’m quite certain that writing short stories, flash fiction and novels also teaches us acceptance.

~ To apologise to others and to ourselves. In the course of writing anything, we do see things more clearly and also from other peoples’ points of view. Even in our fiction, our characters teach us humility and insight.

~ Because we have stuff we need to learn – like empathy and patience – before we can move on.

~ To free us to move forward and make better lives for ourselves. Any writing, be it a diary, a journal, a short story or letters and emails, offers opportunities to lay our ghosts and leave behind a legacy of peace that helps us to go forward.

Thanks so much for listening.

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November 11, 2019

When I Let Go

'Trapped: My Life with Cerebral Palsy', cerebral palsy, Fran's School of Hard Knocks, Happiness Matters, Making Miracles 8 Comments

When I let go

When I let go of all the needs, wants, plans and expectations, one thing remains still to be acknowledged and resolved. In all this “working for myself” gig, there has been – there is – one obsession that pushes at me, and that at the same time almost guarantees that I shall either feel unhappy or as if I have failed.

It is the feeling – the belief – that there is something that I should or could be doing that I am not doing. Some path that I have not walked, some obvious answer I have not found, some way forward that I have overlooked. Only glimpsed until now, this is the belief that makes me anxious or fretful: that I have been given a job to do in which I am failing.

I can notice where this fear comes from – perfectionism, the fear of not being good enough, and also of trying to keep up with others. To give an example, “they” might go to a book fair for three days of networking and mutual back slapping as they meet, walk and talk up and down the escalators. I assume I want to do that too, not for the anxious busyness or the caffeine drive, but for the sense of belonging. That old feeling of yearning transmutes into a feeling that, if I really wanted something enough, I could work for it. So, if I don’t get what I dream for, that’s because I’m slow, lazy, not good enough…

And then I remember that Life – which has brought me this far and which continues to care for me – will, in its way, bring me naturally to what comes next. I can – ok, I must – stop running to catch up. I can invite what comes next by being first peaceful, and then by choosing a path – any path – and walking it.

Finally, I remember that it matters little which path I choose. Like the plastic duck that never drowns and that travels thousands of miles without trying, life still has a way of righting itself, as long as I can stay optimistic and happy.

Thanks for listening.

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