‘Trapped: My Life with Cerebral Palsy’

February 3, 2022

An Exciting Week

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An exciting week

This has been an exciting week. With the turn of the year, and the return of notifications in my email feed, something magical seems to be happening in my ‘to do’ list. Yes, there is still lots to fix and sort and tidy at home, but I’m also getting on with my own work, reaching out and making new connections.

I am in touch with Catriona Kirkpatrick, Head of Development at ‘Engender’ an advocacy organisation with a feminist agenda based in Edinburgh that collects and collates data, reporting and advocating on matters affecting women.

I am in equal parts relieved and dismayed to read Engender’s report, “Our lives, Our bodies” (2018) which explores the stark realities that disabled women still face when deciding their personal and reproductive choices. Of course, this is a subject very close to home, but reading the report several times, I am thoughtful, remembering how painful my life used to be and how much effort has brought me to this point. Telling the truth about our lives is difficult; just as hard is the realisation that often, improvements happen too slowly for many women. At the same time, I am relieved to be reminded that advocacy can bring knowledge, respect and inclusion to a wider audience. Change happens slowly, but it happens, one day at a time.

This week, “Trapped” also features as ‘Book of the Week’ with the Cerebral Palsy Research Network (CPRN), based in Greenville, SC, US. I’m delighted it is featured, and I hope it reaches new readers, helping those who do find it, to realise they are not alone.

Finally, as part of International Women’s Day – 8th March 2022 – I’m taking part in a panel discussion in Edinburgh. More details to follow. Watch this space!  

Thanks for reading.

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November 30, 2021

Not as easy as it looks

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Not as easy as it looks

Life, sometimes, is not as easy as it looks. Before my usual riding lesson this morning – a lesson which was cut short because Mr Bob has caught a dose of the flu bug going round the stables – I went shopping for groceries for my mother. I was up against the clock and thought it would be simple, forgetting that traffic in the morning is a bit congested.

But having arrived and parked, remembered to wear my mask and having skipped as fast as I could round the shelves, I waited to be served at the single cash-desk with a member of staff checking out groceries. And I did wonder whether I should use the self-service check-outs, as seemed to be the general expectation.  

I would love to use the self-service more often, and I do realise that most retail outlets would encourage this. Many stores now offer only self-service to departing customers, having dispensed with check-out assistants almost altogether. But I find self-service hard to manage. Not only does the scanner seem to work very slowly and haltingly for me, but with an elbow-crutch on one arm, having to scan items with codes on, navigate stacks of groceries and packing bags as well as masks and clouded glasses, I just despair of ever managing to complete a self-service shop in less time than it would take me to have a bath: not quite the ‘quick and easy’ option touted by the supermarkets then.

And, when shopping in a hurry, that makes for an unenviable choice: wait in a long queue for the single check-out available at which there is a member of staff ready to assist (there being three other check-outs un-manned despite the queues of customers clearly still wedded to the idea of staffed checkouts) or spend a fraught twenty minutes trying not to fall, get tangled up with bags, or drop and spoil groceries which I am supposed to stack and pack in the ludicrously small space available at self-service kiosks. Not to mention that old saw thankfully receding, “Unexpected item in the bagging area,” which no-one seems able to explain, let alone comply with.

Yes, technology is easy, assuming you have a head for passwords, thin, quick digits for texting and typing, and an inordinate patience with processes which require to be carried out either self-service or on-line or both. But it isn’t as easy as it looks, nor as simple as those in the know will tell us. I bet, if there was a time and motion study carried out before ‘smart technological advances’ were introduced, we would discover that – surprise! – the much-touted time and manpower cost savings are seriously eroded by the real-time soul-destroying minutiae of errors, corrections, procedural requirements, compliance, and the loss of goodwill that fed-up customers represent.

‘Quick and easy’ is so often the euphemism for ‘less expensive’, a euphemism which also implies that anyone who disagrees, or who doesn’t actively enjoy ‘quick and easy’ is a party pooper, behind the times, a behemoth. But I’m not an ice-age mammoth, I’m merely a busy woman short of time who wants to buy groceries without having the run yet another gamut of challenge and difficulty. It would be simplistic of me to ask the supermarkets to ‘bring back the check-out staff’, but the fact that I am waiting, obviously hampered by my walking aid, and in a hurry might suggest to someone that they could offer to help. Because Life is not as easy as it looks.

Thanks for reading.

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November 1, 2021

A Bad Habit

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A bad habit

Last Saturday we went to visit our daughter at University, and at the close of a lovely afternoon – during which it stopped raining for long enough to allow a lovely bright blue sky to emerge, with warm sunshine, a fitting end to British Summer Time – we had the ritual trawl around the supermarket and then back to her digs with several shopping bags.

As husband stood from the car and daughter went to fetch her provisions, I automatically assumed – bad habit – that I would be staying with the car, even although I have no real problem with stairs and do indeed enjoy the challenge of them. While my present self knows that I enjoy a challenge, because of the extra walk, and the stairs to climb to my daughter’s room in a top flat, my more historically timid self bid her a fond farewell, and then sat and waited, for husband to lift and carry his share of the bags and return.

It was only as we were driving away that it occurred to me: I didn’t need to wait by myself with the car. I could have accompanied my husband and daughter up to her flat. They would not have minded, and indeed, it would have been good fun, even if, as I feared, it would have taken an extra ten minutes to do everything. So what? My daughter is not one to resent the minutes I spend at her side, nor would she tut impatiently as she waited for me to catch up.

That I think she might, is a residue of an ancient habit that I have yet to entirely shrug off: This idea of being a nuisance, somehow in the way. The next time we visit, I do hope that I have the courage to simply join in, and not worry about the extra time it takes, to make time for me. I reflect how often I have excused myself rather than face this dilemma, and only now realise that my husband and daughter see me in a very different light from that of my childhood. No longer a nuisance, but a part of their lives, accepted, and expected to participate.

Thanks for reading.

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October 6, 2021

Busy doing nothing

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Busy doing nothing

I used to ascribe my almost legendary ability to sit still, to a simple – or perhaps, not so simple – realisation of the physical effort of getting a life.

If, as I do believe, it takes me a lot of energy to do a thing, that tends to mitigate against doing it. Thus, I have spent a lot of my time doing little except either reading about other peoples’ exciting lives, or worse, watching other people doing things.

Perhaps there is another factor at play.  

My family, and especially my parents, were and are opinionated. That is, generally, a good thing; and nothing new. My mother however, has also been and remains, incredibly contrary. So, I share a family joke that goes,

Fran: Mum, you realise you contradict everything I say.

Mum: No I don’t! That’s’ just not true…

And I notice afresh how often what I say will be met with contradiction. For example, if Mum has had a good night’s rest, she will say she doesn’t need or want night-time carers. Conversely, if there were no night-time carers in place she will just as easily complain of having had a bad time of it, and that the long watches of the night are dreadful to endure alone… It may well be that the progress of her illness exacerbates an existing underlying trend, so that what was previously accepted as the sometimes-amusing quirk of a contrary nature now becomes glaringly obvious.

But in the particular context of what this means for my own behaviour, I have to conclude firstly, that – well, yes! – if one grows up knowing that whatever one says or does will meet with criticism or contradiction, one learns it is best to do and say as little as possible; and secondly, if I don’t wish to replicate that pattern of learned uselessness in anyone else, I must never criticise anyone, nor comment too forcefully on what they choose to do.

After all, I do know, intimately, how hard it is to do anything when one is watched with eagle-eyed interest, and one’s every action and utterance is subjected to pointed comment. It’s only recently that I have realised that (a) it wouldn’t matter what I chose to do, the response would be the same; (b) it’s a habit so ingrained that it’s totally not personal; therefore (c) not only may I follow my own path, but I must do so.

Thanks so much for reading.  

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March 31, 2021

‘Me Before You’ – concluded

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‘Me Before You’ – concluded

I can testify that there are few things more soul-destroying than the awareness that one cannot do physical, active things one yearns to do; a realisation that dogged me for decades and which frequently left me suicidally unhappy, burdened as I was by so many conflicting hopes and realisations, dreams and disappointments. That I am still alive today is testament to the love of those around me, and to my writing, which have enabled me through the years to gain and keep a kinder perspective on life in general and my good fortune in particular.

That Will Traynor chooses to end his life while he was still young may be considered a pity. Perhaps if he had grown old, he too would have become reconciled to his limitations. But there are shadows all around him: His life is endlessly monitored, his health is fragile and I gain the impression that, if Will is lucky, he may manage to claw his way through a few more years of precarious life in considerable pain. Some commentators object that the story portrays impairment as burdensome, bothersome to families and in such a light that it might encourage others to think of suicide as a way to escape. Actually, I sincerely doubt whether the film is this powerful. Nor do I think that life and its lessons are so easily snuffed out.

Two of my close family members opted for euthanasia, my brother in his final hours finally succumbing to his illness so that euthanasia proved un-necessary. It does seem to me that, where one has endless choices to make and is free to make them, the rest of us will do well to look with compassion on the complex dilemmas that euthanasia presents us with.

In ‘Me Before You‘, in both the book and the film, Will’s physical pain – and indeed the unattractive aspects of being wheelchair bound – are somewhat glossed over. But why should the characters not keep their dignity? There may be a patina of unreality in the whole story too – The Traynor Family own a castle, for goodness’ sake, and are described as very wealthy, so we don’t have to witness any grubby realism, the poverty that so often accompanies disability. And I have wondered, if Lou Clark’s family so need her income, where does she find the money to dress with such panache?

I’ve read literally hundreds of novels and seen dozens of films based around novels, in which the characters are all unfeasibly rich, beautiful and extraordinarily talented, able to pick up prestigious jobs and an amazing array of abilities with consummate ease… And that, I conclude, is all in the nature of novel writing and film-making. ‘Me Before You’ does at least offer us the reality of Will’s spinal cord injury which will never mend. I think – though I may be wrong here – that few of us often question the able-bodied world’s embrace of dreamy unreality that often stretches credibility to the max. The community of the differently-abled also deserves some escapism.

Not all portrayals of impairment are duty-bound to be ‘gritty’, ‘true-to-life’ and ‘inspiring’. If Will Traynor and Lou Clark can offer me a thoughtful view of life lived well on a small canvas, I accept it with open arms. The best thing about this story is that Lou actually does love Will and hardly considers his disability when dealing with him. She holds him up to the same standards of decent behaviour as she would anyone else, and her blindness to his impairment is what finally gives Will some zest for living: Yes, he can be kind, he can be courteous even when he is depressed and even though he may be in a lot of pain. It is heartening indeed to see a Will and Lou fall genuinely in love; and however Will’s impairment is – or is not – portrayed, that simple message of hope is worth a lot to me.

Thanks for reading.



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March 29, 2021

‘Me Before You’ by Jojo Moyes

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‘Me Before You’ by Jojo Moyes

I’ve read ‘Me Before You’ by Jojo Moyes, and seen the film, several times now. Indeed, I bought the DVD last week and have been watching it. And I’m puzzled I haven’t reviewed the book or the film yet, given that the story very obviously features a disabled main character. So, despite the controversy – or perhaps because of it – here goes.

I wasn’t even aware that there was any controversy around the book and film. The portrayal of a disabled character by an able-bodied actor raises a few hackles, as, does the – apparently – underlying assumption that ‘living with a disability is such agony, it’d be better not to…’ I’ve heard these arguments before, and listened to them; and at different stages in my life, they have hit home very hard.

The story concerns a formerly able-bodied, now wheelchair-bound man, Will, who was injured in a collision with a motorbike and is now paralysed from the neck down. Louisa is employed by Will’s mother to provide some hope of hope for her son. Despite their subsequent obvious love for each other, Lou does not change Will’s mind that he wishes to die. And so, Will goes to Switzerland and ends his life, as he planned to do before Louisa ever came on the scene.

I know that many disabilities, cerebral palsy included, often shorten an ordinary life-span. I also know that being disabled, one has to live with and through lots of painful assumptions, such as – and I’ve debunked a few of these in my time – ‘I thought all people with CP were, you know, mentally retarded’, ‘It’s easier for you because you were born disabled’, ‘She’ll not amount to much’ and, ‘If I were you, I wouldn’t want to live’… which are a painful mix of tosh and ignorance.

When it comes to fictional portrayals, I don’t think there is any need for hostility around either the book or the film. Certainly, the author makes assumptions about disability, but so do many of us, whether able-bodied or disabled. If Moyes’ novel is to be (a) shorter than ‘War and Peace’ and (b) entertaining and enlightening in equal measure, she has to cut a path through the complex maze that is reality and realism, and leaven it with fictional lightness that will make her book good reading. And I think she manages the tricky balance well enough not to be accused of insensitivity. Humans being complex and varied creatures, there is nothing unfeasible, unrealistic, patronising or unattractive in an – admittedly young – character deciding to end his own life because he was formerly very independent, active and sporty and because he finds the prospect of now living with unremitting pain hard to bear.

(To be continued)

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March 1, 2021

More discoveries in lockdown

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More discoveries in lockdown

  1. Finding any reason to laugh and stay positive is more important than…almost anything.

    If, like me, you live in a small flat with minimal privacy or free space, it becomes immensely important to get along. And in doing my best to get along, I’ve rediscovered my sense of humour, and a willingness to compromise and let go of things that previously, I had a view on: take-away for supper? Fine… Coke with that? Fine… Watch repeats of favourites all night? Fine… And in letting go, I find that my relaxed attitude encourages cheerfulness all round.

  2. Time spent with people we love is always a good idea.

    In common with staying positive, falling into a gentle pace with those nearest and dearest to us is a choice I welcome and more consciously deploy. So I have less privacy, fewer opportunities to do my own thing? Then I’ll make the best of whatever “me” time I do have. I discover I don’t need, or enjoy, being on-line or watching Youtube all the time, so I do much less of that and instead go out for walks or read books from my favourite authors. And when others are nearby, I do my best to enjoy their company. They – let’s face it – have as little freedom to choose their home companions as I do. I have no right to make them miserable, so I do my best to enjoy being fully present with them, often in small ways that add up to something valuable.

  3. When I’m feeling confused, I ask myself, “If time was short, what’s the first thing I would do?” and then I try to go and do it first.

    Whether it’s re-prioritising my morning routine – “wash dishes or eat?” – or deciding what piece of work I’ll tackle first, I spend less time wondering, and more time doing, so that my pile of small, conscience-driving tasks gets dealt with quickly. And so, I enjoy all my time more. If I’m really confused, that’s often a sign that I’m overtired, so I’ll take a break. I’ve discovered that most work I attempt while in a frazzle is often not worth much.

  4. It’s never too soon to relax and see things differently.

    Being forced into confinement for well-nigh a year, one has to re-organise one’s expectations. So I’ve taken my chances to refresh my ideas of what is worthwhile, based on a decided preference for being relaxed, and taking one day at a time. Slowing down and honestly reflecting on what I prefer, produces surprisingly calming results.

  5. Worrying wastes precious time.

    More discoveries in lockdown continue apace. Meantime, instead of worrying and obsessing about the news, I’ll look for the positive or do something to change my mood: go for a walk whatever the weather, write that letter, make that call, do a job that may need attending to, jump on the spot for ten minutes, bake a cake. And for the rest, I don’t want to spoil what opportunities may come my way by worrying about the future. Instead, I find it easier to reserve judgement, grin, and bear it.

Thanks so much for reading. I welcome all your suggestions, comments and ideas.

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November 23, 2020

Focus of thought

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Focus of thought

I was privileged recently to be part of a zoom call organised by a writer on Facebook; It was attended mostly by US writers, so while I was pondering the making of supper, my colleagues across the pond were just getting into their morning stride. But that’s the wonder of live internet communications.

In the course of our discussions, I gleaned that yes, it is very okay to write for twenty minutes at a time; and yes, we can indeed, and often do, listen to music while working. Obsession with particular pieces of music is, it seems, as valid a way of coaxing writing as an obsession with writing itself.

All of which I find so reassuring and helpful in getting back to some kind of work. Until fairly recently, I had come to believe that “writing” means being a devotee of the art, spending days immersed in other worlds, research and writing. Not so. We can have other interests, hopes and dreams, we can be involved in other fields – it is good to be, since that informs our writing – and we can apply focus of thought to write in shorter bursts of twenty minutes or half an hour at a time, providing we focus for that time and do not answer the phone.

Who is going to grudge me twenty minutes of writing time? Who will even notice? It’s not the amount of time we have, or spend, at work, but the direction and application we apply to our efforts. Realising that – and realising how much good thinking can be the result of a few minutes’ concentration – is, for me at this time, the most important thing to hear.

I’ve been stalled, rather ill, and unwilling to consider anything except dealing with the basics. So it’s heartening to realise that I don’t need to have acres of time at my disposal in order to be effective; nor, in order to write, do I need to exclude every other aspect of what makes life interesting. I can mix and match, do a bit here and there, and hope, while I am currently mired in a strange kind of confusion, that the little steps all add up to something worthwhile. That I cannot yet see any kind of end point, may not, at the moment, be the point.  

Thanks for reading.

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October 5, 2020

Taking a longer view

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Taking a longer view

My mother’s health is failing. Finally, after several years of painful struggle and wishing that things could be different – I’ve not quite lost sight of the woman who was content in her domain and saw the purpose in carrying on – my mother’s light is fading.

In watching this long-drawn out process, taking a longer view, many emotions surface. And though I don’t know on any given day which will be uppermost, and which will lie dormant and sabotage me as I sleep, I know that this period of waiting will simply have to be endured, as all painful things are.

Certainly, there is regret, and a patina of peculiar relief, as we both accept the inevitable: I can’t make things better in the way she would like them to be: herself able and competent, living in France, her son alive, well, and, (in the dream she would have liked) living a happy life… I can’t put back the clock, and I’m not sure, even if I could, that it would be a wise course. Would all the things that have happened in the intervening five or so years have to happen again? I’m not sure we could cope with that.

There is comfort, as there always is, in knowing we have succeeded in coming this far together, in peace, and finally in a clearer understanding.

As a kid and a young adult, I often felt my parents to be remote, living by adult rules and logic to which I was not, nor expected to be, privy any time soon. Now, since I see Mum most days and have a hand in keeping her affairs in order, I have, I think, proved my claim to be as content, happy and competent in my own life as most of us are: my mother can relax now, knowing that, although I’ll never reach her heights of scholarship or astonishing grasp of detail, there is enough of her in me to ensure that I’ll be okay. Different, but okay.

Thanks for reading.

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September 23, 2020

Stories of Personal Courage

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Stories of Personal Courage

My friends like to share stories of personal courage with me that they have themselves read and been inspired by. And there was a time – a period covering roughly thirty years – during which I was fascinated by them, mining individual stories of personal strength for nuggets of inspiration and advice when I needed it most. Some of the accounts I have read, I have taken to heart, and they have undoubtedly played their part in keeping me sane and alive.  

Nowadays, I feel as if I have found more of my courage, and so, I simply want to live as happily as I can, one day at a time. Does this make me unsympathetic? Not at all. When I am asked a question, or spoken to, I listen, as I hope I am listened to. But I also want to live freely, untrammelled by feelings of regret or pity.

I would not, and do not, want anyone to pity me; and therefore, while I do sincerely admire people who are living examples of courage every single day, I want not so much to admire them, as to enjoy their company, share their jokes and wish them well.

All of us, whether heroine or oppressed worker bee, at heart just want to be seen for who we are: not placed on a pedestal, nor looked up to, nor discriminated against or judged unfairly as we grovel trying to pull together our dignity from way down the queue.

I want to live on the level with others. I am not a mascot for the “unfortunate”, mainly because I don’t characterise myself or others as unfortunate, nor do I have unique access to spiritual insights, wisdom or empathy. There may be times when I feel I have something I want or need to say, perhaps voicing the views of those who may find it harder to speak out or be heard; but in this, as in most things, I cherish the hope that we are all alike in campaigning for what is meaningful to us.

Are my ambitions at risk of sounding flaccid and pedestrian? Perhaps, though while I do have ambition, my stamina is not always up to par; and for me, walking on the level is an achievement in itself.

Thanks for reading.

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