Fran’s School of Hard Knocks

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 11, 2019

Points of departure

'Trapped: My Life with Cerebral Palsy', Fran's School of Hard Knocks, Memoir 3 Comments

Points of departure

Following my previous post, I have also cause to reflect, again, that a memoir cannot cover every aspect of a life. Not only would our attempt to cover “everything” make of a memoir an encyclopaedia, but naturally, the scrutiny of a memoir covers certain periods, and stops at certain natural points. Beyond these points of departure, our lives can change, and flourish beyond recognition.

In my memoir, for example, I reflect on every young girl’s dreams of being included, being loved, part of a carefree community of those who enjoy life. I talk about certain on-going traumas that affect people with my abilities – the assumptions, for example, that we will do what we are asked, that we should never be a nuisance, that we should be inconspicuous and no trouble, and, above all, never embarrass anyone. (Can others embarrass us? Well, yes, that is fairly routine.)

“Trapped” also explores some myths of mainstreaming that we all face at some points in our lives. If only you will be good, if only you will work hard and make us proud of you, the myth whispers, you too, can have all that we have: friends, family, a wonderful job, meaningful occupation, a fantastic, fulfillingly amazing emotional life… And, as anyone will tell you, it ain’t necessarily so. We all fall down, at times. We fail exams, we break up relationships, we may even become homeless or destitute. But the common thread in all these low points is that – in more ways than we are usually aware – we are the same. We all have stories to tell, and lessons to learn. And in that, we are, and can always be, bigger than the sum of our parts.

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 24, 2019

Doing what we enjoy

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

Doing what we enjoy

I’m thinking of writing a series of articles about Life and how to live it well: observations and conclusions often drawn from the times when I’ve not lived so well, perhaps because I’ve found myself caught and bound into doing things I didn’t enjoy.

And now I would say that in life, which can be wearying at the best of times, if we want to live well and happily – I might even go so far as to say that, since we are given life, it is our sacred duty to live joyfully – we really should only be doing what we enjoy.

We’ve heard it said often enough that an insincere gesture is not worth a bean; or rather, that the smallest sincerity is worth more than the biggest obligation.

And so, if we unwrap that to the whole of our lives, it makes sense for us to do what we choose, and avoid those things we don’t. Unless, that is, we can muster enough heart and desire to do all things with a sense of lightness. Otherwise, what is the point? Sooner or later, our disgruntlement will leak all over our generous, polite, obliging veneer as we falteringly try to explain why we went to such an effort. And if you are anything like me, the disappointment from not making it work, will be acute.

So starting from now – not, like in most cases, first thing tomorrow, but right this minute – I think I’ll do what I enjoy, and really enjoy it. That must surely be why people call life a gift, or a treasure: because we can do what we like with it.

By doing what we enjoy, we also make the point to others that they are free and not beholden to us. Our freedom – and our evident joy in our freedom – sends a message that others are equally liberated from the bounds of expectation, rules, obligation, to do as they please.

Now that is a liberating thought.

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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June 3, 2019

Emotional support for writers

'Trapped: My Life with Cerebral Palsy', Fran's School of Hard Knocks, Memoir, Path To Publication, The Rights & Wrongs of Writing 0 Comments

Since all writers borrow from their lives to pen their novels, articles, memoirs and stories, emotional support for writers is essential. Yet the habit which writing breeds of doing things alone and by oneself, can be hard to leave behind.

We write, presumably, because we feel compelled to; and presumably also because some part of us enjoys the process or the sense of achievement from the final product and its outcomes.

Yet perhaps, since reading – so often a precursor to taking up the pen – and writing are silent, we writers may well become accustomed to learning, listening and doing by ourselves, quietly. We may not all begin life as rugged individualists, but I suspect that, in order to write, we may also have to cultivate the art of doing many things tolerably well alone. Words on the page are quiet and perhaps we assume we have to be too?

All of which helps to explain how writers can become isolated. And to excuse the fact that, with all that training in aloneness, it can be very difficult to ask for emotional support. Asking for help isn’t easy, though there is little doubt that having practical and emotional support helps us to stay grounded, relaxed and on top of our workload.

Paradoxically, I’m not sure that I would have managed to write or publish what I have, without the demands made on me by others: I must eat, and yet, when I lived alone I rarely made the effort to eat well. I have to sleep, and there is something in the routines of next day, that encourages me more often to go to bed at a reasonable hour. I know that twenty-four-hour days do not suit me, yet when I live alone, I tend towards exciteable neglect.

I do know, that although it has ultimately saved my life, writing my memoir was a long and very difficult thing to do. Ironically, I wrote it and dreamed about it, and lived through the pain of it alone, because I needed to come out of isolation. I am grateful also to remember, now, that when we need help, we can ask for it, and benefit from precious friendships we make along the way.

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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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 5, 2019

Unexpected reading

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

Unexpected reading

Dusting a crammed shelf next to my desk, my working copy of Trapped falls to the floor and I pick it up and open it.

It is unexpected reading; and I am scared, not because, as used to be the case, I am anxious about finding grammar glitches and typos, but because I wonder now, how I will feel about the writing, and the experiences after so long. Have they finally left me and gone away to a dignified retirement? Am I encouraged by what I read?

I’m baffled and bemused to discover that it still makes my eyes water; and I notice in the midst of what was always an appeal for help, the acres of time I wasted. Even as an adolescent, I was aware of that wasted time and regretted it; but now, I think, Why did I accept it? How the Hell did I tolerate it?

The answer, like these questions that have sat up and beg me to pay attention, lies I suspect in the discipline and open-ness to truth that is forced on me by getting older. There is something about being young, that feeling of having all the time in the world, that gives us permission to sit and wait. That sense of timelessness which we can squander is often characterised as the joyous, endless horizon of youth, the notion that anything is possible. And so it is, providing we take the chance to do something. Or else, it can become a field of endless, formless regrets.

Inevitably, the field narrows as we get older, until our demise ceases to be a remote probability and becomes an urgent motivator: It’s got to be now or never! While young, I accepted my situation because I could see no way to get out of it, and I tolerated it, because there was no choice. I had neither the type of Georgette Heyer character nor the energy to defy expectations by leaping up and eloping. Nor, in fact, did I have any idea what I would rather do. Oh, yes, of course I knew I wanted to get away, and dreaming of escape has always been a favourite fantasy, but after the escape, what then? That was always the stumbling block.

Thanks for reading.

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