cerebral palsy

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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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.

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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.

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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. 

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August 23, 2019

Ableism and me

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

Ableism and me

Thanks to Emma Crees, Writer in a Wheelchair for giving me, over the years, occasion to think about ableism and me.

And in all honesty, I haven’t, much, except in relation to the obvious political footballs: austerity, poverty, dearth of ambition. But, in much the same way as our current social expectation is geared towards masculinity – football all weekend, failing which rugby, tennis, golf, or beach volleyball – for the women – and that contradiction, the blonde, female sports rapporteur – much able-ism goes under the radar, or is simply accepted, tolerated and excused.

But here’s the thing: Why?

In my faith community – to which, I regret, I am now a rare visitor – I have made two requests to help that have stood out in my mind. The first, to wash dishes, was very politely refused because, I was told, the kitchen would be very busy and they needed someone who could carry dishes from the washer and stack them, carry plates and so forth. The implication being that I would make more work for them instead of helping them, and therefore, it would be better if I did not get involved.

The second occasion was when I asked, “What I would have to do to qualify for an in-house shift at one of the larger Quaker centres?” The kind of shifts in which it is expected that members staying for a week to assist with the hospitality, will act in a welcoming, sharing capacity, helping visitors to feel at ease. It was suggested that, since the friend in residence would be expected to carry suitcases, perhaps it would not suit me. After I got home, I wrote to query this, and received no reply.

So, is “Health and Safety” now to be used to exclude persons who wish to participate? I fully recognise that, if I ask to “help” in areas where it is more usual for the able-bodied to do so, it is probable that someone else may need to help me to help them. So, am I therefore to be excluded from giving my ha’penny worth? That seems a trifle harsh.

It is hard – sometimes very hard – for a person with impairments to get up any enthusiasm for joining in. Not only is the able-bodied world peculiarly blind to the challenges faced by those with impairments – “It’s self-service, just fetch a plate and come along…” – but it can be difficult to leave the small comfort zone of passivity that those of us with impairments have marked out for ourselves. A comfort zone which, if I am typical, is made up of equal parts of consolation and despair: Not very life enhancing.

So, joining in, and feeling encouraged to join in, will be exceptionally life-enhancing to one whose usual world is four walls of a room, the bleak car-park or the limitations of a predictable, supermarket shop. Given the sheer appreciation and delight we feel when being encouraged to participate, do organisations that encourage volunteering not see the value in a buddying system that encourages that? Or is that hope of extra care deluded and unhelpful?

It does seem to me that “inclusion” must embrace all sorts and abilities, even if that means making an extra effort for that to be possible. If we are to have an accurate reflection of what “society” means we must encourage those of us who are reluctant to leave their living-rooms to get outside and live a little.

Thanks for listening.

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August 14, 2019

I got the date for my PIP assessment

'Trapped: My Life with Cerebral Palsy', cerebral palsy, Fran Macilvey, Fran's School of Hard Knocks 4 Comments

I got the date for my PIP assessment.

I got the date for my PIP assessment, today Wednesday the 14th of August.

If this had kicked off last year, I would have said, “That’s my Summer holiday thoroughly ruined”, but there is some stubborn-ness in me that refuses to give anyone that satisfaction. Just because I have to do this now, when we are supposed to be outside and tanning ourselves, having barbeques and swimming in the lake, does not mean I will descend into a worry fest. Why should I? I plan to have a great life, and that includes now, because what else matters, really, in the final analysis?

There is a great deal said these days about those who feel hard done by. And yes, for swathes of our poor, vulnerable and lonely citizens the system is really not working very well, it is stretched to breaking, and broken, in many places, badly patched. For many, many people the daily grind goes no-where near addressing their basic needs; and, since destitution is not something I shall have to face any time soon, I’m grateful, and intend to make the most of all my chances, today, tomorrow and every day.

But… – why is there always a but? – the rules in this particular system appear to be arbitrary, made up with no end in view except to further curtail the ability of those with mixed abilities, to participate. There is no real logic behind the “twenty metre rule” or the broad definition of “to mobilize”. I am informed by ATOS that someone is coming to my apartment today to see “how my disability affects me” – but really, that’s not it. They are coming to see how far I fall within parameters that they work to, and whether they think I am justified in getting additional help with my needs: all surprisingly subjective.

And that is particularly hard to explain when I find it hard to understand, when I am prone to saying, “I’m fine thanks!” even when I’m in a lot of pain and covered in mud; and when it pains me – with an almost physical ache – to enumerate the ways in which I find it difficult to do what I want to do. The gap between what I aspire to, and what I can reasonably manage is increasingly obvious, and makes me, on my bad days, want to – to end – this crux of compromising.

None of which is self pity. But there are shards of despair in there that I dare not look at too closely.

Thanks for reading.

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August 8, 2019

Memoir writers and privacy

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

Memoir writers and privacy

Here’s a new idea that I saw voiced on a FB thread recently. That it is rich – and I paraphrase – for a memoir writer to complain about breaches of privacy.

The imposition on online users of various extra security rules and requirements, for example, being asked to supply our phone number for extra security, or told we “must” download our banking app onto our mobile phone, seems to be becoming more widespread. These extra security measures sound harmless enough: if we are in France our holiday, say, and we attempt to log in to Facebook, there are times when we will be blocked from doing so. I assume that the mega computers are suspicious that we are not ourselves, and we are therefore asked to supply extra data for verification before we can access our accounts. (At least I now know what “Please add your phone number for extra security” is all about. I have not and will not give out my phone number. And so, I won’t use on-line networks when away from my usual domicile.)

However, I started this blog post to probe one suggestion made, that it is rich – and I paraphrase – for a memoir writer to complain about breaches of privacy.

Huh?? Memoir writers are people with lives that go well beyond the content of a memoir or even a confessional, weekly newspaper column. And if we write sensitively, no-one else we mention in our memoirs – and other people usually feature tangentially – should not come off too badly. I change names, alter circumstances, and in any case, my recall is often at variance with that of others, which acts as a natural, protective barrier around our personal lives. “What? I don’t remember that!!” is not simply about perspectives: it places our recall at a remove which ultimately, is like a safety valve.

I think, I suppose, probably, that the assumption made, that memoir writers have no expectation of privacy, has two parts. First, that memoir writers have already laid their lives out for public scrutiny, and therefore, they are used to it, expect it, and have somehow forfeited their rights to privacy. Second, that they – I am supposing – have already made reference to the lives of others in, I am supposing, a rather presumptuous fashion and therefore, have a bit of a cheek supposing that they should be entitled to privacy when those they write about have been “outed”.

Both these assumptions are questionable at best. Memoirs are often an attempt by writers to make sense of chaotic or baffling circumstances. They are an attempt to join with others in understanding, to reach out and console, and to get beyond first base and live better lives. That all seems very useful and worthwhile to me, and doesn’t lend me to suppose that memoir writers have skin like rhinos or are uniquely tough and open-all-hours type of people.

Thanks for listening.

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August 2, 2019

Passing the buck

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

Passing the buck

I was speaking recently to a friend, whose wife has a long-term, incurable condition, and whose original lifetime award for DLA has recently been reassessed. The outcome of her claim is that she has received a two-year award for PIP. Which means, she keeps her car meantime, and can keep working, as long as she is able. It also means that in two years, she will have to re-apply, and start jumping through a fresh set of hoops.

In two years’ time, we are supposing that a package of existing welfare benefits, including PIP, will have been devolved to the Scottish government. So, by handing out short-term awards, is Westminster simply passing the buck? All the existing, temporary awards that have recently been made are going to require reassessment – unless they are also lifetime awards – when they expire; and one result of awarding PIP even for a short time, is that no “parachute payment” (awarded when a claimant who qualified for a vehicle under the old DLA scheme loses their entitlement under PIP) is paid.

If the outcome of my reasssessment is that I lose my car, then at least I have one major comfort: When benefits are devolved, I can reapply to the Scottish Government and see what happens. Whatever their decision may be, I’d rather have decisions about my benefits entitlements taken by an independent expert – not ATOS or AWOL please – and emanating from a political administration with which I have some sympathy. Sorry to say, but I’ve never voted conservative, and I don’t think I ever will: I am just too aware of the undeclared value of “social capital” – “good” education, “privileged” up-bringing etc – to suppose that it has no effect on our democratic processes. Although, if current political developments are anything to go by, there is evidently no guarantee that even with social capital, we obtain sound governance.

I’ll keep you updated on the progress of my PIP application.

Meantime, thanks so much for listening.

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