Fran Macilvey

August 19, 2019

I am over fifty

Fran Macilvey, Happiness Matters 0 Comments

I am over fifty so… it’s all but over for me, is it?

Everywhere I look, in my daily newspaper, in magazines, leaflets and booklets that tumble through my letterbox, on bus adverts and these annoyingly persistent on-line ads that announce, “Over fifties’ health plan / life insurance / home equity release scheme/ travel insurance / no medicals/ Tenfor Ladies Always Discreet pads for the active “mature” lady”… I am reminded that I had better think of slowing down. I am over fifty so…?

Honest to God, perhaps I should just give up and accept that I’m old. But I don’t feel old, and in more ways than I can enumerate I feel younger, more able, more positive and more alive than I did when my age was thirty-something. I’m not just saying that, either. I have a much better grasp of what my life is for, what I can do to feel more excited, more interested and more alive. And, I would like to be allowed to do that without being dogged by the constant, promoted assumption that because I am – ta da! – over fifty, I somehow need to slow down, take it easy, ease up a bit.

I resolutely refuse to slow down, even though, in many ways, I have slowed down. I no longer pelt along the street and slam into the pavements when I fall because I’m moving so fast. Instead, I saunter, and trip and fall in a more graceful pile but, I don’t seem to notice, even with my reduced speed and my care with each step, that I am much slower than I was before.

And what is this obsession with speed, anyway? I notice it at the leisure centre, where people in the fast lane of the pool seem to swim with an almost permanent grimace on their faces. If I was watching them, I would say they hate swimming and want to get it over with as soon as possible. Do I feel like that, always counting lengths and desperate to get to twenty so I can get out and leave? Actually, yes, I had to admit, I do, often. Which is stupid.

Being aware of something we dislike is the first step to stopping it. I dislike this notion that the over fifties are on the verge of obsolescence, decayed, faded and tired. What about kind and patient? What about character-filled and interesting? Are all such qualities to be brushed aside because we walk with a stagger or a stoop, and because we insist on writing, “The man with whom I was talking” instead of “The man that I was talking to”?  

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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July 30, 2019

Applying for PIP

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

Applying for PIP

“Pip” is the working title of my third novel. it is also the TLA for “Personal Independence Payment”, a benefit which replaces DLA which is now being discontinued.

And so, finally, two days before the Summer holidays begin, the notification from the DWP arrived informing me that my DLA award is being reviewed, and so now I need to think about applying for PIP. I don’t have to apply, of course. I could draw a veil over my private difficulties, hand back my motor vehicle and resign myself to an even more indoorsy kind of life. However, under the current scheme I qualify for a car, and if I would like to keep running it, I have to make the attempt, and so I will. Instant flare-up of stress eczema.

I know – I know – that everything is somehow working its way out, but despite my faith and my determination to stay calm and happy – if I get upset, “the system” wins twice – stress fractures begin to appear, at first invisible and then more defined – a brittle cheerfulness that takes teasing too seriously; a paralysis that means I look to my husband for what to say, and how. More falls and staggers, a growing sense of futility and sorrow. Nightmares. Memories that assault me. Arguments with my husband that leap up out of no-where. I weep at the prospect of having to expose my intimate failures to the scrutiny of strangers who ask me, “How bad is your condition?” Having been so private and self-reliant, it upsets me to place all this information in the public gaze…

Meanwhile, there is comfort in continuing to do what I have always done, despite the concern and the renewed worry about the future, and being tired all the time. If I cannot keep my car, I may be able to afford another, but… I remember how it felt, before: the constant fatigue which frayed all my certainties to shreds. I am chary of a system that requires me to revisit all my painful compromises with forensic attention to details, which, in any case, are constantly changing.

~ Sure, I fall onto toilet seats and am periodically incontinent. Do you have to know that?

~ Yes, of course we do…

Systems that gather information with an undisclosed purpose to be sceptical and interrogatory, imply, perhaps without intending to, that applicants are exaggerating or untrustworthy. But I have worked, and continue to work hard, at all manner of quiet details with which the government takes no notice: caring, housekeeping, being aware of what needs done and doing it as best I can. In all that, I crawl when I cannot walk; which is a private indignity that I would prefer to keep to myself.

Since it seems I no longer have the option of keeping such things private, I share them with you here, in the hope that others may take some comfort from the evidence of my weaknesses: because we all have to deal with indignities, which say nothing about who we really are.

Thanks for listening.

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June 14, 2019

Times they are changing

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

Times they are changing

My daughter is now sixteen years old, a fact which gives me considerable pause. I have spent much time over the last two decades doing things for the family I am blessed to have around me. But have I used that as my excuse to not do things for myself? Probably.

There must be many people in my position, who surround themselves with details and preoccupations that put them at several removes from the concerns and convictions nearest their hearts. So how do we get back to the things we really, really want to do, instead of staying half-heartedly with those things we think we ought to do first?

I am guessing that most of us will wait until our kids have grown up, and we have a lot of time and space, before we sit back and reflect, remembering what we enjoyed doing before parenthood came along. We’ve all heard about the ‘empty nest’ syndrome, which apparently leaves parents bereft without their usual caring role.

With that in mind – I’ve done a lot of intense grieving these last few years and it is hard work – I have been letting my daughter leave me gradually, mourning and celebrating her passages into youth and adulthood in the small rituals with which growing up is sprinkled: the first time she walked to school by herself; the first time she went to town alone on the bus; the first time she was away for the weekend with a school party…

With suitable safeguards and many sage warnings, these small moments when I realised, “She can manage without me, now,” have paved the way for the recognition that I must honour her freedom – and the rest of my life – by now being meaningfully busy with my own projects. That I can do.

Thanks for listening.  

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May 30, 2019

Testing my resolve

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

There appears to be a belief among authors that of course we enjoy our writing, or else, why would we bother writing anything? And for most writers, that assumption is probably broadly true, though I suspect many of us also have procrastination down to a fine art. But when I began writing, it soon became obvious that doing so was testing my resolve almost to breaking point.

Though memoir reads like fiction, and enjoys elements of fiction, we may not get much enjoyment from writing our life stories.

Interestingly, while writing my memoir, I felt as if I was inhabiting a parallel universe. Writing about something that happened when I was, say, fourteen years old, other forgotten parts of that time would come vividly to mind, prompted, I am sure, by my sojourn with a particular set of recollections. These felt so sharp, as if they happened yesterday, which realisation has given me many occasions to wonder about the nature of time and memory.

Is everything we have ever thought, felt and believed stored in our minds, just awaiting recall; and, like a song learned fifty years ago, never forgotten? Why do our minds work that way, recalling sounds, conversations and scents decades after the event? What a massive repository of experiences our minds turn out to be.

Writing for me started as a compulsion, not at all enjoyable. But it had to be done, both to push against the boundaries of what I thought I knew, and testing my resolve to see how far I could push. Perhaps that was a bit reckless, but it was my version of the physical and emotional risks that we all have to take – the cat climbing the wall may fall to her death, but that doesn’t stop her trying to reach the window above – if we are going to take our personal leaps to the next stage and live life to the fullest.

Thanks for listening.

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April 1, 2019

If I can’t say no

'Trapped: My Life with Cerebral Palsy', Fran Macilvey, Fran's School of Hard Knocks, Happiness Matters 10 Comments

If I can’t say no

I have a hard time saying no. I don’t want to disappoint people, so I make myself unhappy. Right? Wrong!

Reading books I don’t like, for example, that’s a big one. But honestly, how hard can it be? Read the book, post a review – or not – and that’s that. Except that it takes another several hours out of life – my life – reading another book I don’t especially want to. And it’s become another bad habit.

I’m not a book reviewer, though of course I delight in reviewing books I love. I would want to do that in any case, knowing how much I welcome reviews from supportive readers. (I welcome reviews from unsupportive readers too, but that is another story.) And generally, though I welcome reviews, I very rarely solicit them, as I feel that a book out in the public fends for itself, by and large.

But, partly because of my intensive stint of work on Authonomy, I’ve had to relearn how to read books for sheer pleasure, separating editing and critique from what I am reading for enjoyment, as far as I can. A process which has taken a few years – far longer than I expected it to.

So, of course, I should say NO to books that I don’t want to read, without having to list the reasons why not, or justify my choice to myself. Since the reasons are only for me and my conscience…

After all the hard work and the heartache to reach this day, if I can’t say No to what I don’t want, what has been the point of all my previous introspection and soul-searching? Saying No is absolutely key to getting around, finally, to doing what I want to do. Which, since it take effort and time, I deserve to prioritise.

It is not a mistake or a failure to lay aside a job that makes me feel heavy. It is, in fact, the way in which to make a happier, more soothing life, in which I find myself being kinder to myself and other people too. What’s not to like?

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February 25, 2019

Featured today on Kathy Pooler’s blog

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

Featured today on Kathy Pooler’s blog.

Today I’m delighted to feature on Kathy Pooler’s blog, writing about my books, in particular how and why I wrote my memoir, Trapped: My Life with Cerebral Palsy.

I’m so grateful to Kathy for publishing my article on her website today.

Writing Trapped must rank as one of the hardest things I’ve done. Yet, it was the endurance test that ultimately saved my life and gave me a new sense of purpose, as well as countless opportunities to do things differently and see the world through fresh eyes. Having achieved that, no other test has seemed impossible, or anything like as daunting.

I do sincerely hope that my experiences with managing life challenges through contemplation, reading and writing will inspire others to take courage with their own personal mountains. We all have challenges to overcome, some expected, others that arrive like a cold whirlwind out of a clear blue sky. Whether we realise it or not, and whether or not we want to believe it, we can find ways to be happy, whatever life brings us.

That I have been enabled to find a path to peace through my writing makes me grateful beyond words.

Please do pop in and support Kathy if you can.

Thanks for reading and sharing.

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October 23, 2018

Tips for travel to Frankfurt Buchmesse

Fran Macilvey, Fran's School of Hard Knocks, Path To Publication 0 Comments

Here are my top five tips for travel to Frankfurt Buchmesse

1 ~ Check out the cost of accommodation, which is considerably more than you might expect to pay, even taking into account the fall of Sterling against the Euro. Research the market and the expense carefully. Prices are considerably in excess of comparable accommodation in London, for example, considering location, star rating and available restaurants. Really quite startling differentials exist.

2 ~ Book accommodation early. That is, as soon as you know you will be visiting the FBM. There are hotels nearby, but don’t expect any accommodation to be available there: an enquiry for a single room at a well-known budget chain right beside the Halls complex will raise only an incredulous eyebrow or hysterical laughter.

3 ~ Travel light. Take only what you must, and weigh carefully the extra baggage you will carry around. Walking is probably mandatory, and walking distances previously undreamed of is to be anticipated. Especially if you have extra needs or find the moving escalators scary, as I do, and therefore have to rely on customer lifts, which are surprisingly few and far between. The Messe Halle are not particularly accessible for those with additional needs: there are few public lifts, the doors out to the disabled conveniences are so heavy that you require a strong-arm to lever them ajar, and the disabled loos are kept locked…

4 ~ Find a hotel that offers breakfast included in the accommodation price, and eat well. Then splash out on a proper lunch at the Venue – the catering is excellent, and if a tad expensive, so what? It’s a long way to travel to subsist only on a diet of wilted sandwiches, which I do not recommend. Having had a decent lunch, in the evenings I could relax and rest. My vital survival strategy: at every possible opportunity, do nothing, or invite others to help you with bottles of water, delivery of meals from takeaways… It is easy to be thankful, and hotel staff appreciate it, even if we have to communicate with them in scarcely discernible patois which we think is German, and they probably assume is Norwegian.

5 ~ Cash is useful, but simply being in possession of a wodge of Euros – which we have to spend, because the exchange rate is so bad, innit? (not true, actually) – need not blind us to ways to save on costs: share a cab with other delegates, book seats on the hotel’s morning shuttle bus at a fraction of the cost, use the locally available bus transport to take you direct to the airport instead of travelling by taxi to the main railway station and thence by train to the airport… Ask for advice and it will be given, and people are incredibly helpful.

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