cerebral palsy

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.

Please share:

FacebooktwitterpinterestlinkedintumblrFacebooktwitterpinterestlinkedintumblr

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.

Please share:

FacebooktwitterpinterestlinkedintumblrFacebooktwitterpinterestlinkedintumblr

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.

Please share:

FacebooktwitterpinterestlinkedintumblrFacebooktwitterpinterestlinkedintumblr

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.

Please share:

FacebooktwitterpinterestlinkedintumblrFacebooktwitterpinterestlinkedintumblr

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.

Please share:

FacebooktwitterpinterestlinkedintumblrFacebooktwitterpinterestlinkedintumblr

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.

Please share:

FacebooktwitterpinterestlinkedintumblrFacebooktwitterpinterestlinkedintumblr

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.

Please share:

FacebooktwitterpinterestlinkedintumblrFacebooktwitterpinterestlinkedintumblr

November 4, 2019

Living more actively

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

Living more actively

Did you ever feel like the class buffoon, because you said the things or asked the questions that everyone else was thinking? I did, and ended up feeling singled out, not always because of my obvious impairments. Kids are surprisingly perceptive, and often saw me as I was, rather than how I thought I looked.

I did, and do, have unusual priorities, many of which are still being shaped today by “older” expectations: to be good, be no bother, be easy to get along with, be amenable. These expectations are remarkably pacific and keep me sitting. In with the mix, there have also grown newer expectations shaped by being a wife – be thoughtful, think before you speak, don’t judge – and a mother – be kind, listen first, then speak, hold back on that ol’ judgement, because often you forget that younger folk see things more charitably than you do.

But mixed in with those expectations which I could label as “being careful” a whole new bunch has become clearer to me since lately becoming obsessed with “Supernanny” and picking up some of Jo’s parenting tips. Nothing I could point the finger at, particularly, just a feeling that life is too valuable and precious to sit around here all day “being good” and thus failing to live my life to the full and enjoy it as much as I can. There may be limits on what I can do, but many of these can be overcome, and are imposed on me by my own sense of inadequacy.

I have Jo to thank for demonstrating that I can, and should, get out more, see more and do more. It seems to me today, that the best advice I can give myself now is to get out there and experiment with living more actively. It’s no good expecting the world to turn up at my doorstep. I have to take my world outside, where people can meet it.

Thanks for listening.

Please share:

FacebooktwitterpinterestlinkedintumblrFacebooktwitterpinterestlinkedintumblr

October 31, 2019

I can do many things

cerebral palsy, Fran's School of Hard Knocks, Happiness Matters 2 Comments

I can do many things.

I can do many things. I can drive a car, I can prepare meals – I’m what might be called a good plain cook – I can sing. Glancing through the remains of what might have once passed as a body of work, it dawns on me that I also produce visual art, some of which has, surprisingly, stood the test of time, despite the absence of any formal recognition or schooling. The test being, after twenty or thirty years, do I still like this? And yes, to a surprising number of things I draw, that is still my answer.

Which does demonstrate to my cynical self that indeed I can do many things and reasonably well. Unexpectedly, I procure from some part of my depths, strange, colourful works that hit the mark, often enough to give the whole idea of me as a visual artist more than passing credibility.

But where does this talent come from? With no concrete idea it existed, I’ve certainly never talked about it. Reminding me yet again, that in getting through life and discovering how I can achieve things, I travel an unusual path. I do not, and cannot, seemingly, arrive at outcomes along the same tried and tested routes that others take. If I can accept that I needn’t match more general expectations to get to desired outcomes along the usual paths, life seems to work out better for me.

I have been characterised as not listening to advice, being contrary and defensive. But perhaps a part of my reaction has come from knowing that what everyone else was telling me was “so obvious”, I knew would not work for me. Did I recognise, even as a child, that I would have to do things my own way? Possibly. Kids are not stupid.

I can’t keep up. And my sanity makes a welcome return when I remember that life is not one long battle to match “How things are done around here” with the way I do things. Things seem to work better when I keep faith and keep going, in my own way.

Thanks for listening.

Please share:

FacebooktwitterpinterestlinkedintumblrFacebooktwitterpinterestlinkedintumblr

August 26, 2019

Personal Update

'Trapped: My Life with Cerebral Palsy', cerebral palsy, Fran's School of Hard Knocks 10 Comments

Personal Update

So much has been happening – and not a lot of it to do with work – that I feel now is a good time to remind myself of what my priorities are.

I’ve had my PIP assessment at home, which went well. Whatever happens next, I feel that I was listened to and heard, and that the assessor was fair and kind. More than that, none of us can expect. And, as it turns out, she was quite able to accept that problems can be difficult to understand, let alone talk about. It’s not as if I’m the first person who has ever been assessed, and I won’t be the last. At some time or other, anyone in receipt of state-sponsored assistance has to be assessed, so I took the opportunity to explain, later marvelling that I have so rarely had that opportunity: from the procedures that were sanctioned on me and over my head when I was young, to the orthopaedic consultant who suggested I try wearing high heeled shoes, it has felt as if I have been “done unto” for ever. Nice to be heard, for a change. I await the decision.

I spent eighteen hours last week, sorting out my passwords, internet accounts and Paypal, as I was hacked by a single spam link which I clicked on… I should have known better, but I’ve been lucky, with no major hassles or dramas, except the idea, at one point, that my internet business account had been deleted. It hadn’t, it was merely locked, but it gave me a few restless hours. Please be vigilant with passwords, logging in and out of accounts, and with keeping stuff up to date. And please, if in doubt, delete spam emails and report them.

I fell again last week, narrowly averting a mangle that could have been noisy, difficult and messy, and accomplished with surprising elegance and luck when I landed and sat back hard on my left wrist. But it was a stupid fall nevertheless, which hurts and is sending out aches and pains all over my left side, my shoulder and neck. Impact falls of this type start with a small site that, as it heals, radiates pain. And of course, a good swim would help, but I’m cagey, having so recently fallen…

I’m still writing, currently hoping to finish a working draft of Pip by October. If my characters keep talking to me, I hope that will work out.

Thanks for listening. 

Please share:

FacebooktwitterpinterestlinkedintumblrFacebooktwitterpinterestlinkedintumblr
1 2 3 4 5 >»
This site uses cookies More info