cerebral palsy

June 10, 2019

Getting life into gear

cerebral palsy, Happiness Matters, The Rights & Wrongs of Writing 4 Comments

Getting life into gear

My “to do” list reads like this: housework, swimming, shopping, recycling, visiting my mum, shopping, tidying, answering the door, and getting life into gear. You know, get a grip, get organised, do things.

But… I’m doing them already, and there must come a limit to the number of times, or the speed or the efficiency with which I tackle the jobs in my life. Some things are more fun than others. Visiting Mum, while sometimes worrying, is also enjoyable, interesting, and a good way to remind myself of life priorities, in other words, how lucky I am.

But still, the notion resurfaces occasionally that I could do with being more disciplined about my own work, that, “I need to work harder”. Periodically, I glance at the stats comparing average earnings with mine, and think, “Right! It’s time to get organised…” and I wilt, thinking that surely, hard work alone does not answer that particular ambition.

So perhaps there is something else I could be doing, some different way in which I can frame life challenges that would make achieving things easier. Perhaps I’ve known all along that if I can make enjoyable what I am doing, that is worthwhile in itself. When I am happy, life is already lighter and more interesting, and my life automatically becomes what I want it to be.

More soberly, I begin to perceive that there is a marked difference between pain – which is, I believe, an inevitable part of life, the see saw of change – and what we generally call suffering, which is what happens when we internalise pain, in some ways erecting it into our next great project. Pain of all sorts is both natural and inevitable; our thoughtless conversion of it into what we call suffering might become a bad habit. I know myself, that I can tolerate quite a lot of pain. And so long as I do not rehearse it, hold on to it, I can accept it, feel it and allow it to be until it goes away. I do not also need to say, as I have been in the habit of doing, “Ah me, I am in such pain, life is hard etc etc etc.” Which is a bit like picking myself up from a fall, only to bash my head against a brick wall…

Funny what I think about while waiting at traffic lights.

Thanks for listening.  

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May 28, 2019

Taking things for granted

'Trapped: My Life with Cerebral Palsy', cerebral palsy, Happiness Matters 0 Comments

Is taking things for granted a privilege? Sometimes I think so, yes, of course it is. And in the spirit of taking things for granted, I yearn for the quiet life, untrammelled by pangs of conscience or worry, reading my books, sat warm and comfortable in a peaceful space…with a clear mind and gentle ambitions carrying me through the years.  

Yet, such a vision of privilege and calm makes me restless: to live! Despite all the small obstacles that seem to gather round like spectres on a stormy day – there are always things I have to do, needling me away from what I prefer to be doing – something keeps my head up, and my desire to move, moving: I know I will get where I want to be, if only I keep faith. I will go for walks in the fresh air. I will enjoy swimming and laughing. I will write blog posts, I will finish my books and submit short stories. I will have fun and live a big life. I do.

Reading an account by a Buddhist friend of mine, who first became aware that recounting his life’s misfortunes made him the envy of his Buddhist friends – for to have misfortune thrown at one’s feet is to be given opportunities for that most sought-after gift, spiritual growth – made me realise that in some way, all misfortune can be strengthening: it puts one’s own circumstances into different contexts – I lost my house in a fire, but I and my kids escaped unharmed – or it forces one to choose fully – I’m alive, by some miracle, and I don’t intend to waste another second.

It’s taken many years for me to come to an accommodation with who I am and the challenges I’ve been given: small ones, like being constantly uncomfortable, and bigger ones, like making something meaningful out of life, not just existing. And I still rock between being sharply aware of the many ways in which I am fortunate – is that sharpness forcing me to notice ways in which life can be unfortunate? – and relaxing, trusting that I am allowed to enjoy life fully. As they say, Life is a work in progress, and I think I’m making progress.

Thanks for listening.

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May 22, 2019

Reactions to my books

'Trapped: My Life with Cerebral Palsy', cerebral palsy, Happiness Matters, Making Miracles, Memoir, The Rights & Wrongs of Writing 4 Comments

Reactions to my books have been and continue to be overwhelmingly supportive. I am very touched that my story has reached so many readers, some of whom have contacted me with messages of love and support and to share their own stories.

I’m glad if my experiences can help to inform and console: in navigating our way through life, I find there are few more toxic experiences than being lonely.

Many whom I would count as good friends express surprise, saying, I had no idea. They are astonished that so much can have happened of which they have been unaware, though of course, since I have been introverted, depressed and solitary for so many years, it is unsurprising to me that, until now, the best way I knew to maintain my dignity was with silence: I’m less ashamed of how things were then, and can talk about them. And my shame has a different quality – less, how embarrassing; more how could I tolerate that? which makes me want to advocate, not hide.

Which must be one reason why I started writing. I feared being swallowed up completely by my tendency to silence. So I gave up the unequal struggle to hold it all in, knowing, even as I wrote, that eventually, when I had smoothed it out a bit and found a way to come to terms, I would go public, despite an intense desire to chuck it all in and run away: my reactions to my books are still mixed.

I still think it matters to maintain peaceful dignity. But often that is a way of staying away from the helping arms that others willingly extend towards us. We do need to show our weaknesses, our frailty, and allow others to understand. I’m sorry that, for so long, I have been unable to share intimacies, or to trust that the reactions of friends and family would be supportive. I regret the missed opportunities to share more fully, because, at the very least, sharing would have helped me to notice that we all have stuff to deal with, we all struggle and suffer together in this melting pot called “Life”. Seeing that more clearly would have given me the courage to make more mistakes, be more outspoken, to take more risks so that I might move more freely and enjoy life more.

Thanks for listening.

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May 9, 2019

Difficulty moving forward

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

Difficulty moving forward

Here is a listening version of this blog post.

It is natural, when we have difficulty moving forward, to assume that we have no wish to move. And there are those who will capitalise on our difficulty with moving forward and taking the initiative by assuming, for example that, “Since you’re sitting there, you can do this for me / wait for me / come with me…”

But since I have worked out – so recently that it is almost embarrassing – that deciding, doing and moving are all that bit extra challenging for me and that taking that extra time and effort out of an average day counts as a peculiarly painful loss, I am now surprisingly indignant when I spot this habit gliding silently towards me, ready to take up position in service of someone else’s life, ambitions or expectations.

Paul D’AguilarPerfecto Resting

Hubby says to me, “Well, please go and do what you would like to do…” and is baffled that I find it difficult; while he would find it relatively simple to decide. He is a man who knows his own mind and is quite happy to populate his spare time with things he enjoys: more power to him.

But what if I have never really known what I would prefer to do? So that by the time my speedy friends have worked out their idea of a good time – “Want to go to the cinema? Great, let’s go!” – it’s too late for me to add my considered response, “Actually, I would really, really love to go and walk in a park with tall trees…” without sounding like a kill-joy. The assumption evolves effortlessly that I am countering an earlier suggestion with a no; whereas I am merely slower to unearth my preferences. (If I were able to leap into a blank canvas with my idea first, others could and probably would counter it, but at least my speed would shield my reputation.)

Perhaps I come to this now merely because I have reached an age in which it is expected that I want to go slower. I receive mailings about funeral plans, insurance for the over fifties, home equity release schemes, sedate holidays for those on the brink of retirement… Which are, again, lots of other people’s ideas begging a hearing.

Whereas I feel that I need to start moving. I have so much living still to do.

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May 1, 2019

Assessments for PIP

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

Assessments for PIP

I have not yet had through my letter box any intimation that my DLA is being reviewed. Most people for whom this is a concern have already been reassessed under the new regime, while I wait, and try not to think about when, or if, or why. The new scheme is massively behind schedule, and is also being transferred to the Scottish Government. Meanwhile, I wait and hope.

The new assessments for Personal Independence Payments (which replace DLA) measure our lives against a series of set questions, but, as with most tests based on a lengthy application form and a cursory examination on the day, little account is taken of myriad impacts which spread like spores through the body after an event or a series of events on a not-so-good day.

If our able-bodied colleagues who examine us fell and collapsed the way we do, they would be in hospital and would probably feel entitled to sue someone for compensation. We manage, just as we always have, and for our efforts and stoicism we are asked whether we can sit, stand, walk twenty metres and go to the toilet unaided: how little can we manage before we have to surrender the unequal struggle and sign ourselves up for twenty-four / seven incapacity?

The most frustrating things about disability are that it slows life down intolerably and comes with extra effort, extra pain, extra humiliation and uncertainty, and with extra costs which we are less able to recoup by joining your average labour market. Of course, it is no longer politically correct to suggest that workplace discrimination is a problem, but that doesn’t mean that a level playing field has magically appeared from the lumps and tussocks that constitute the average barriers to employment.

For now, though, it is these extra costs of disability that assessments should focus on, rather than the precise or exact nature of what we can and cannot do, which is difficult enough to articulate at the best of times.

It is a double loss that we, and many other marginalised groups, try so hard to fit in and find our efforts rewarded with misunderstandings, when what we would most value is a fair assessment of the realities of life near the margins. I don’t care if my neighbour has insomnia and three legs. I am not interested in whether one may be shorter than the other two. But I would be interested if her three legs disadvantaged her in finding work and meant that walking took her twice as long as her two-legged contemporaries.

The effect of disability on “normal” life is what matters, not the precise nature of our incapacities. These should remain a private matter for us to manage as best we can. The costs of these incapacities are the only legitimate concern of social welfare assessments.

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April 29, 2019

Telling the truth about life

'Trapped: My Life with Cerebral Palsy', cerebral palsy, Happiness Matters, Memoir 2 Comments

Telling the truth about life

People think I’m very funny because I’ve got used to telling the truth about life. “Oh, how drole, how very amusing!” they chortle, trying not to choke on their tea, their coffee or their biscuit crumbs.

It’s easy, really. More often than not, I say what other people are thinking. I blurt out the “one stupid question” that no-one wants to ask for fear of looking idiotic. All things considered, I have little to lose, so I think of truth-telling as my partypiece: my secret weapon.

It was my father who first started me thinking about the value of this. During a visit abroad, as he was happily relating tales of his adventures, he confessed that it could be very tricky using humour to brighten the mood at a dinner party. Humour, it turns out, is a remarkably local affair – I may understand irony, family humour, but the neighbours will probably consider the same joke unduly forward and rather rude: what might be amusing to the French ambassador sitting on dad’s right, might deeply embarrass the Lithuanian consul seated on his left… Difficulties with language and the communication of small subtleties can proliferate alarmingly.

“So, what do you do?” I asked wonderingly. (Sometimes my naivete astounds me.)

“Well,” he turned to me with a twinkle in his eye, “I just tell a story against myself. It could be anything. I might have told the cook I wanted salad for supper, not salami, or I might have dropped my glass of wine. Whatever it is, I just make it amusing and everyone laughs. We are all very entertained and the joke is on me, so my problem is solved. No more international misunderstandings. Very important, you see….”

While I marvelled at my father’s dedication to his job, even to the extent of putting himself forward so that everyone might laugh at his antics, gentle humour is indeed a wonderful way to disarm unkindness. If we make ourselves look a bit daft, our friends will probably feel more comfortable telling us about their mistakes too.

It was my father whom I thought of, when I had the wonderful idea to take twenty years of hard knocks and turn them into stories that might entertain. For the most part, I can and often do gleam something worthwhile from what I used to think of as my wasted years, by telling the truth and laughing about it.

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April 22, 2019

On a still bright morning

cerebral palsy, Happiness Matters 4 Comments

On a still bright morning

On a still bright morning after a weekend of sunlight and warmth, roused early as my better half leaves for his first day back at work after the Easter holiday, I put on a load of laundry and spend time dawdling outdoors on the front step, in the full glare of welcome sunlight. As I watch people slamming into cars and driving away, or arriving home with armfuls of shopping, I reflect, how little time any of us spends outside these days.

Certainly, we travel, but usually that is to or from the shops or work, in a car or a bus. Rarely do any of us actually spend time outdoors. And I do wonder what that means for us. We have, after all, evolved to live outside, and I know that when I catch sunlight, my mood and my energy improve. As I carry recycling outside to the collection point, I linger and marvel at my good fortune on a day like today…

While negotiating our high front step and smiling into the low sun, I twist my knee rather painfully, which takes me by surprise. Then, noticing what I’m doing wrong and making the effort for small changes – so that I sit down carefully with my feet and legs set out straight in front of me instead of twisted to the side – is important because when we have to manage a disability, we are already working at the outside limits of what most bodies can tolerate.

I’m lucky that I have the time to notice what I’m doing wrong, and how I can improve things so that my right knee, which still carries more than its fair share of my weight, will have a chance to recover. Our bodies, like our minds, recover more quickly when allowed to keep moving, so that is what I hope to do, and still aim for.

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March 21, 2019

To throw in the towel

'Trapped: My Life with Cerebral Palsy', cerebral palsy, Fran's School of Hard Knocks, Memoir, The Rights & Wrongs of Writing 4 Comments

Lately I’ve wanted – despite the joy of being at the Book Fair – to throw in the towel on my writing. To say, “I gave it my best shot, and I’ve had enough.” But what stops me is the realisation that this is one field of endeavour that I can honestly call my own.

True, it owes its genesis to the generosity and encouragement of others, in particular, my husband. But having cultivated this particular creative garden, it has taken root and is well established. So I don’t feel justified in pulling it all out and leaving behind bare earth. And if I did, how would I spend the time that not writing would free up? Would I have the courage to do what I want, or would I expend even more of my efforts in helping others?

I realise my cogitations make me sound very selfish. I’ve just had four days away from home, exploring to my heart’s content. But doing that, I have been able to notice how lopsided my ‘ordinary’ life has become, how joyless; and just how much of my effort has been invested for others. I say, automatically, “I don’t mind,” but actually, I mind very much. And however often I may assume it doesn’t matter, clearly my body has other ideas: I am forced to recon with my giving tendencies when I am sore, exhausted and depressed.

I suppose I have to be more honest about what I would like to do. But I’m not used to it, not really. Hubby says, “Go out and have fun…!” which for him might be easy to decide and do. Whereas I sit quietly wondering what that might entail, pondering what fun might be. Going to the cinema? Not very active. Going shopping? Yes, but that’s a consumerist effort. Reading a book? I recon I’ve done enough of that for a while. Watching television? No, I want to get outside. Go for a walk? Yes, somewhere nice, maybe… I would love to go for a walk, at my pace, in a wooded place, where I don’t have to fret that I’m late, or in the way, but can enjoy great lungfuls of cool, fresh air.

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March 19, 2019

Four times more effort

'Trapped: My Life with Cerebral Palsy', cerebral palsy, Fran's School of Hard Knocks, Happiness Matters, The Rights & Wrongs of Writing 4 Comments

Four times more effort

The London Book Fair this year was the most enjoyable I’ve experienced. I met some truly delightful people with whom I hope to keep in touch, and came away with lots of new and refreshing ideas.

Chatting as one does at these events with like-minded and generous souls, we take away different thoughts, and ideas that stay with us. Like this one from a new friend, that, apparently, for a person with impairments – like mine, I presume – it takes five times more effort to do anything than for an average bod. In my case, perhaps four times as much effort, or three; but the point was made, and made me think.

If it takes me four times more effort to undertake a physical task, which takes me three times as long, how does that impact on my life? It must mean that I will, probably, get less done in an average day than you would, and that my efforts need to be carefully considered. To put it bluntly, doing jobs I dislike takes me so much effort, that I should not do them. I should spend my time doing what I enjoy.

Well, yes, of course, we all should. Doing what we enjoy is the key to our success. But I suppose my point is that, given the energy and time and thought expended, I should really never do jobs I dislike. And if I have to do them, I must, for the sake of my sanity, find ways to do them that I can enjoy, or at least, appreciate: I do notice that I am slower and more laboured than others, a realisation which is hard, sometimes, to accept.

On the one hand bolstered by having this understood – Wowee! At last someone recognises the sweat that goes into this! – I am rather depressed by having it confirmed: How much effort have I wasted doing jobs I hate? I mean, we all have to do things we don’t like, but in the normal course of events, “other people” – how I hate that phrase – can do them much faster and with less physical and emotional investment than me, so in fairness, they should do them, while I put my efforts into being happy.

Which raises more questions that need answers, like, “Why haven’t I?” and “When will I?” and “What is stopping me?” I seem to have spent an inordinate amount of my effort and time doing things for other people. Of course, again, we all do. But how much is too much?

Thanks for listening.

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March 6, 2019

Why do I

'Trapped: My Life with Cerebral Palsy', cerebral palsy, Memoir 2 Comments

Why do I?

A trick question. Why do I lope lopsidedly, tilting to the right when I walk? It’s not entirely because I have CP. My right shin is significantly shorter than my left; which is not due to brain damage, but simply the way I am. A thought that has occurred to me rather late in life, but, better late than never.

If I wear a right shoe with a platform of about an inch – as I did for a while, though it proved ruinously expensive in shoes – my tilt would be much less noticeable. So why don’t I do that all the time? (I’m reminded of these advertisements for ‘vanity heels’ for men of short stature who wish to boost their height.)

Probably in part because, although the professionals have known for decades – since, presumably, the physio measured my leg length in 1975 – they did not comment on the discrepancy to me in such a way that I felt there was anything that could be done about it, or that was worth doing. If they had thought it was worth doing something about, surely they would be doing it?

Only now do I recognise my false logic. Perhaps the physio knew there was an unevenness, but did nothing because, in the normal course, we compensate for such variations quite easily. Lack of symmetry is the norm, after all. But the ability to correct is what ‘ordinary gaited’ persons achieve; something rather beyond the capacity of an adult with impairments who is already recalibrating to the max most of the usual parameters just so she can walk.

I’m treading perilous waters here, I do realise: to fix or not to fix, that is the question. There must have been an era during which it was considered ‘the right thing’ to encourage remedial surgery, hard work, physiotherapy, with a view to maximising our potential (and improving our chances of integrating successfully with ‘normal’ others). Forty years on, I assume that integrationist philosophy is more benign.

But – at what point does intervention make a positive difference? I still don’t know the answer. Piecemeal suggestions offered to me these days tend to sound apologetic. I suspect I would benefit greatly from a full MOT which I have never properly had. But a shoe platform that would wear out only slowly, for my right shoe to help stabilize my gait? Well, they can send people to the moon, I’m sure they can invent a hard-wearing, soft sole – I know they can, my current pair of shoes has been though the wash three times and they are still in good order – for an occasional platform. Not rocket science, but effective, nevertheless.

Yesterday, I’m delighted that this blog post about my writing appeared on Karen Dustman’s blog, Clairitage.com. Thank you so much, Karen, for featuring me!

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