cerebral palsy

August 19, 2015

Mumsnet

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My friend, my good friend Clare Flourish notes at the side of her blog that she is a member of the Mumsnet bloggers network.

It was Clare who gave me the idea, which has been simmering, of asking if Mumsnet would find an article from me worthwhile, and Josephine who looks after such matters – bless her! – said yes.

'Thank You' by Moeez, July 2014
‘Thank You’ by Moeez, July 2014

Bless Mumsnet, which is an interesting, amusing and hugely informative network of information and ideas for like-minded souls. MN even have a jobs section, where you can ponder your next career move. And they post into my IN box a regular news update which helps to keep me informed about all the latest news and views.

I am delighted to be a member of such a wonderful community, and to have at my fingertips a resource of advice, companionship and almost limitless ideas. Here is my article, ‘I have cerebral palsy but refuse to let it define me’ which was posted yesterday afternoon.

Please pop in to comment, share and tweet (and do whatever else you would like to do – the site is so engrossing that I can happily spend a morning just browsing….)

 

A rose
A rose

Thanks so much for reading!

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August 10, 2015

Playing by the rules

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I never find it especially easy playing by the rules. In any case, I have always assumed life is meant to be fun.

Light traces of a carousel

I turned up at the pool very early on Saturday, found the main door open, so went in and changed. I forgot my purse, but then, I am on a membership, so no cash would be changing hands, and I figured I would clear it with them afterwards. I’ve done that before. There was no-one at the desk. I went in anyway, surprised it was so quiet, and then, as I was starting a second length, a guy came and told me I should not be in the pool.

The supervisor then kneeled to tell me he was really upset and angry, and confessed he could lose his job over it. He could not hear my side of the story, but had to leave, to get over his upset. All of which …… really devastated me. I still don’t know what to think. Is it likely, that a small thing like being in the pool ten minutes early could lose another person his job? Or was my tearful, fearful reaction merely a symptom of my disconnect from normal life: the usual back and forth of frightened employees, banter, words spoken in rixa that other people would simply shrug off? Perhaps working alone, I am less able than I used to be to take such statements as they come and bat them away. They sink in….

The door wasn’t closed, the desk was not barred, the pool was not switched off….none of the usual STOP signals were in place to jog my realization that actually, I was not supposed to be there until eight thirty.

We are all becoming tired of negotiating rules, regulations and restrictions that are enforced, but not all the time; some people are stricter, and more deeply upset, by perceived contraventions, but, though I may be careless, I am not malicious. Other people leap and splash over my head, wondering, what is her problem….? I just wish I could get warm, be somewhere easy to be….to be peaceful. I am sorry for the harm I cause, though perhaps that kind of comment reawakens feelings in me that go much deeper, back to a time when I felt useless, in the way, and frankly, unwanted. No wonder I was upset, then.

I am surprised. I thought I had grown through all that. But clearly, place me in a swimming costume, in a pool, and have someone say something sharp, and I go back to being small, vulnerable, and unhappy. Surprising, that.

Thank you – so much! – for reading.

 

 

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June 1, 2015

All Together Now

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Hello my lovely friends. I’ve not been writing as many blog posts as usual, mainly because I’ve been so busy doing articles, following up leads, and setting up talks and readings which are coming up later on this year, as well as dealing with end-of- year stuff at school and a child who is hyper about the approaching summer holiday. Schools in Scotland break up at the end of June.  In the meantime, over the last few months, I have been learning so much, not only about what works, but how to keep moving forward in the best way. ‘All together now!’ shouts the sergeant at the front of the line. S/he may be right.

Often, we invest time and energy, and we have no notion whether they make any difference to the outcome. It is my experience, however, that whenever I act sincerely, small steps of faith take me forward and deliver unexpected gifts when I am not looking for them.

Recently, an article appeared featuring yours truly, for which I am most pleased and grateful. Thank you to ‘All Together Now’ who featured this piece.

Writing about how disability encounters the mainstream, it’s not so much about statistics, though these remain fairly daunting. Neither am I especially keen to tell other people what to think or do: we all want as good, honest, happy and fulfilling lives as we can achieve. Yet, to harness all ability so that everyone can make the most of life, there is still room to improve awareness about the effects of disability, as well as improving accessibility, education and attainment levels. Where these are on the table for discussion, I encourage and motivate in any way I can. With small steps of faith, we all make a difference.

 

Earth, the Moon and Callisto
Earth, the Moon and Callisto

Thanks for reading.

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May 18, 2015

Ten Things You Never Knew about Cerebral Palsy

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Ten Things You Never Knew about Cerebral Palsy (or Were Too Embarrassed to Ask)

When I started writing this article, I was thinking, ‘What do I know about CP? I’m just a woman who tries to ignore that side of things and get on with life.’ I always have been, and I maintain that a gentle, light ignorance of ones weaknesses is probably as good a way as any to get the best from life, which often feels fickle, even in our happiest moments. But the more I wrote, the more I found myself remembering details and ideas. I found lots to write about.

Being disabled has made me rather more introverted than is perhaps best, so actually raising my head and noticing that others are often interested and keen to learn more about CP and about disability in general, is a great way to widen my perspective. And I am so pleased if I can add humour to a subject that many people shy away from, feeling unsure and awkward. Life is variable and not really awkward, but because we are wary of being explicit, misunderstandings crop up all over the place. I try to write these out, so that I can more easily learn to accept my failings, without falling into the trap of hating myself.

One of the annoying things about CP is that it is as variable as we are. One of the wonderful things about CP is that it is as variable as we are….. which can make it difficult to explain.

Miranda - by John William Waterhouse
Miranda – by John William Waterhouse

 

For giving me the opportunity to explain, I am indebted to Lucy Walton-Lange, Editor at FemaleFirst who has published my blog post ‘Ten Things You Never Knew about Cerebral Palsy (or Were Too Embarrassed To Ask)’  on 13th May. Thank you, Lucy!

If you have any questions or comments, please do add them at FemaleFirst, or contact me.

Thanks for reading

 

 

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May 5, 2015

What Writing Means to Me

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Recently, I have been reflecting on what writing means to me, and whether my time is well spent. I mean, seriously, what is it all about? Why have I put myself through five of the most difficult, emotionally draining and – let’s face it – financially unrewarding years of my life? If I was an outsider, considering pros and cons, on the surface, I would conclude that Fran Macilvey is peculiarly driven: driven to work all-nighters while her family sleeps; driven to continue with the next project, the next hope, despite setbacks, illness and puzzlement from those more sober and grounded citizens of my acquaintance who really would prefer that I would apply my energies to a proper, reasonable, sensible and obvious job. Why, for goodness’ sake, must I always be different?

Because I am, is all. I make that sound nonchalant, easy to say. But if my life has taught me anything, it is the total futility of trying to keep up with other ‘ordinary’ people who have ‘ordinary’ jobs. I’ve tried that – really, I have – and it has only led to heartbreak and loss of a different kind.

In the old days, the pain was about not belonging, never fitting in, and never really understanding what was going on; I had that sinking feeling which made it plain that I never would understand, no matter how hard I might try. Nowadays, though there have been a few disappointments and false starts, I am more certain that I understand the basics and will continue to make progress. On my present path, every difficulty lends itself to a purpose, for a reason. It is easier to notice the ways in which unexpected outcomes serve a longer-term goal.

And above all, I write so that I may share my experiences with others. I can write, and so I should. I can explain, and so I do, in the hope that those who may read my pieces know that I understand something of their loneliness, their anger, even their desolation. It is not unusual to have these feelings, it is not peculiar or suspicious. They are just part of life.

Gradually, writing had revealed that our ‘bad’ experiences often complement the ‘good’, making our lives a tapestry which, when we look back at it, hopefully fills us with gratitude and optimism. That is how I see myself making the best of life’s knots, at any rate.

Thanks for reading.

 

 

 

 

 

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February 23, 2015

Capability Scotland – The Great Scottish Book Off

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'Girl Reading' Jean-Baptiste Camille Corot
‘Girl Reading’ Jean-Baptiste Camille Corot

 

Books, in one form or another, have been lent and borrowed for thousands of years. In the modern age, when kindles are all the rage, we cannot swap electronic devices so easily, when we wish to share our discoveries. ‘Real’ books remind us of the joy of sharing and engaging with others as we discover new reads. Books are made to be shared.

In the run-up to World Book Day on Thursday, 5th March, Capability Scotland are running the Great Scottish Book Off, inviting us all to dig out a few books we have read, and arrange a book swap event with our friends. The idea is to organise a get-together, charge a modest admission, and then pass any funds raised to Capability Scotland.

I am delighted to announce that on the evening of 5th March from 6.30 – 7.30 pm at Blackwells Bookstore, 53-62 South Bridge, Edinburgh, EH1 1YS. I will be giving a reading from Trapped and answering questions. Please join us if you can.

I am very grateful to Capability for inviting me to contribute to their fundraising campaign, and I am looking forward to a lively and friendly event.

 

"Narciso (Narcissus pseudonarcissus), Jardín Botánico, Múnich, Alemania 2012-04-21, DD 01" by Poco a poco - Own work.
“Narciso (Narcissus pseudonarcissus), Jardín Botánico, Múnich, Alemania 2012-04-21, DD 01” by Poco a poco – Own work.

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November 11, 2014

Riding Again

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Haflinger Foal, photo by Behringer, Friedrich

I started riding again last week. Today was my second lesson with the RDA at the Drum Estate out of town, where I used to ride when I was a youngster. Starting again after a break of over thirty years, I feel a curious mix of familiarity and strangeness: Strange to feel as I felt back then, a mix of yearning, excitement and trepidation; odd to feel nostalgic about the familiar scents and sights, and to realise how much time has passed.  It is reassuring to know that I am now a grown-up and can meet and greet as I choose, with the freedom to be myself.

Posture is the big thing. I enjoy the discipline, and feel shaken to my core by the pain in my thighs, reminiscent of earlier, uglier agonies. All my nerves jump around as they try to discover a different and straighter equilibrium. I am assured that this will get easier and improve. Now, without the teenage angst and uncertainty pulling me back, I can listen more trustingly, and believe what I am told about how to sit, how to move, and about breathing deeply. If I breathe calmly, my mount will pick up on that, and we can be relaxed together.

I love to be back, and I welcome the new friendship, where I discover, yet again, that I have so much in common with others. They too have frailties and physical issues that they ignore, work with and endeavour to get past. I am not alone in that, or in anything else. The realisation that I am in such excellent company makes me at once tearfully grateful to be reminded, and sorry that I wasted so much time in isolated regret. Thank God, I am waking up. At last, I am getting over myself.

Now – sit up straight. I don’t want to waste this chance I have been given.

 

Two wild horses, equus ferus

 

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September 26, 2014

Bernie Leslie

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Bernie Leslie
Bernie Leslie

 

Today I am pleased to feature Bernadette Leslie. Bernie Leslie is a Scottish writer who was born with Cerebral Palsy. She’s an ex-Parasports athlete who represented Scotland and Great Britain, winning a bronze medal with GB in the 2006 Boccia World Championships. She’s writing her first novel. In her spare time, she loves going to see her favourite football team play and loves animals.

In her blog, ‘The Wheel Perspective’, Bernie shares news and insights of her life. She is a passionate supporter of ‘Riding for the Disabled’ with whom she rides regularly.

 

Welcome, Bernie, and thanks for featuring today. I know that we will be sharing more posts, but, first, I would be really interested to learn about your experiences with Equus. How did you became so interested and involved with horses and their language?

It all started with my mum actually! A year ago, she read an article in the September 2013 issue of Oprah and when she finished reading it, she came through and she said: “There is an incredible article about horses this month and I think you would love to read it.” Somehow it struck a chord with me. Martha Beck, a life coach, was describing the Equus experience of a client who worked with Koelle Simpson, equine trainer/life coach, to resolve the issues that were plaguing her.

Strangely enough, the very next day, Mum and I were visiting some relatives’ graves. Now there had always been a horse in the next field, and I’d always wanted to say hello, but never could because it’d mean my electric wheelchair would be trudging through grass and leaving a right mess everywhere, not to mention getting stuck if it’d been raining.

I need to give kudos to the local council for this one because I noticed they had made a path up to the fence and I decided to see if the horse would come over. Thankfully she did and it was really through her that I began to see for myself just how horses perceive not only ourselves, but how we feel too. That started a journey of discovering everything I could find out about horses!

 

What teaches you about spiritual truths?

Equus is a non-verbal language of horses in which these amazing animals — so sensitive that they feel the tiniest of things landing on them — let us human beings know how they’re feeling via their body language, which is interesting, because thousands of years ago, our ancestors were known to communicate through body language, until other forms of languages developed and took its place — the ones we know today as written and spoken languages.

Spiritually, Equus has been invaluable to me. I was starting to figure out, through being with horses, that negative influences were having far too much influence over what I was doing. I felt under increasing pressure, and forgot about how important it was to take care of myself and return myself to a blissful, peaceful place. Equus teaches me what leadership really means and how to remain centred when others try to drag you down.

Horses have helped me do this and now I feel more confident that I am taking the right path — horses and writing are a winning combination, for me at least!

Thanks so much, Bernie. It is so interesting to discover that horses have a language and that we can learn to communicate with them through it. All the best with your writing and your riding!

Lotus_india_cropped

 

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September 11, 2014

Visit to the Doctor

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Visit to the doctor.

Rarely, if ever, do I visit my doctor’s surgery on my own account. I have found an accommodation with myself that works well, most of the time, and I know that as I get older I am finally learning to listen quietly, to suspend judgement and to live in the moment more fully. Problem is, I had a vivid dream, the meaning of which was clear, to me, at least. I have always had lots of car dreams: a car, in various states of repair, indicates my physical life and concerns. Small careering fast downhill with no steering wheel….that sort of thing.

So, a shiny, green car in good condition. Green = health, and there is lots of that. But open the passenger door, and under all green health, you can see that the hinge, the lynch pin, is rusted right away, and that the door is only just hanging on. I took this as a warning, that one of my joints needs attention, and made an appointment to ask for a referral to X ray. But my darling GP, whom I have not seen for six years, is unwilling to expose me to any more X rays than is absolutely essential – and I would agree with her, normally – so she gently declined my request, tested my joints and told me there was no sign of any damage that would either show up on an X ray, or affect my range of movement significantly.

She said she would request a referral to physiotherapy and OT, for an assessment, to see if they can make any recommendations. The problem is, as anyone who has read ‘Trapped: My Life With Cerebral Palsy’ will know, I have an insane and quite unreasonable detestation of ‘assessments’ by medical professionals. The very idea is upsetting and I fear that if I go I shall be defensive and upset and probably burst out crying. I need my privacy. Surprisingly, the fact that I have CP appears no-where on my GP notes, but has been documented elsewhere extensively, so while my GP is entirely oblivious of my emotional fragility on the matter, I cannot explain. In this particular instance, I would have preferred a referral. I could hardly sit there and say, “Well, my angels sent me a dream, which means….” So, I am no further forward, except, perhaps, that now I am certain that I should probably go swimming every single day for the rest of my life.

Conclusion 1: Wild Horses will not drag me to any assessment.

Conclusion 2 – I am more or less back to square 1.

Conclusion 3 – I shall need to start taking more care of myself.

Conclusion 4 – So, no change there, then.

I have been swimming this morning and yesterday, so we are making progress. Maybe that is what Spirit were trying to tell me – get moving, girl! Look after yourself. So I shall be cheerful and hope for a miracle. In the meantime, does anyone have any other suggestions?

 

in a town near Jenin
in a town near Jenin

 

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August 11, 2014

Abject humiliation

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Easy, get down off the boat’s slippery gangplank, only have to raise my right foot a bit higher and be careful in the rain. There we are, now, ready to start the climb up the stone steps to the island. Done this sort of thing a million times before, but usually alone, so that I can get the angle right, the exact tip needed. If I don’t quite make it first time with the foot-lift, I can have another go, while others behind me surge amicably past making friendly, reassuring noises.

Not this time. Thinking to be polite, and needing a bit of help with balance, I solicit the help of the friendly bloke clad in the regulation fluorescent jacket, on hand to offer assistance. Believing it needful, he pulls me forward, as if I am like a child and he can hoist me up. Except that, at this new angle, lifting right foot high enough to reach the step becomes impossible. I fall before I get started, and am heaved upright by two or three very willing persons. For me, an ageing, gentrified lady of fifty, the whole experience is exasperatingly familiar.

I hope you didn’t hurt yourself when you fell? Thank you, I am fine, and don’t feel in the least put out that I was effectively pulled off my feet and then raised up like a heavy lump. Being a heavy lump is scarcely a consolation, and if I let it, it could become the latest abject humiliation. Instead, I let the whole thing slide off me and disappear. Result! I have another blog post in the bag.

Except, – Oh God!- there are no handrails on either of the stairways up to the old and dignified room that remains intact amidst the general, geriatric ruination of this castle. So I stumble up and around the spiral staircase doing the landlubbers equivalent of the doggy paddle. Then all of a sudden, as if he knew exactly what I would like the most, a lovely young man appears at my side and offers, “Here, you can lean on me” and we proceed together, happily upright, me moved more than I care to admit. In the general mishmash of emotions bubbling away, it would take only a little something to start me crying. Oh, God, that is lovely music, where is my hankie? There are times when I just want someone to lean on.

Going down is the familiar story in reverse and even less dignified, filled with eddies of fear and uncertainty, while I work out what to do with my elbow crutch – it is dangerous, inflexible and in the way, so eventually I throw it down the stairs ahead of me, just to be rid of it – and then the rest is easier.

Is this yours? asks another helpful lady.

Yes, it is mine. Would you like it?

Brodowski - Portrait of a woman
Brodowski – Portrait of a woman

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