Fran’s School of Hard Knocks

May 20, 2014

Difficulties (2)

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Sending off all my pet hates, sealing up my worries, discarding my concerns takes great discipline.  You would think I could just get on and do it – hop out of the cage and be done with all this negativity stuff, but it doesn’t seem to work like that.

Bad news and habitual difficulties have a habit of clinging on, a bit like the smell of mouldy old clothes – and there is a prize there for anyone who can spot the pun. Actually, this is one of my favourites, sent to me in a dream many years ago. I need to get rid of my bad habits, my old hang-ups. It would be good if I could just discard them for ever. Or box and send them off to the sorting office in the sky. Slap on a stamp and send them away, so that they cannot contaminate, and maybe so that someone else might fix them.

Old messages are part of an old record, with deep grooves, so it takes a while to notice how deeply buried are the old, tired repeats: “I can’t manage…I have to do everything alone….” Out-of-date litanies these may be, but still, they spool round, and on bad days, in tense times, can spill out and threaten to soil the new growth.

Maybe that thought of ‘trying to quit’ doesn’t work so well, because the universe prefers positive formulae. How about, “I am consistently fortunate. Good fortune is all around me, all the time.” I find myself warming more easily to positive words. I find them easier to wrap around me like a cosy blanket. It feels more welcome to embrace the good news than shun the bad: when we try to shun the bad, we have to remember what the bad is, which defeats the purpose of trying to shun it. I think I will stick with the positive stuff. Much easier to work with, and eventually, the hope is that the good news will smooth over the old stuff and allow the positive to flow more easily.

‘Living mindfully’ is a phrase I used to hear a lot. I think it means, remembering not to slip, to go back to the old, deep tracks that are so easy to tumble into. Patterns of defeatism, failure and self-hatred are seductive often because they have been our companions for such a long time and their voices are familiar: which is why discipline is so useful. The refusal to go back there, to slip away un-noticed into the strange comforts of familiar brutalities must be a conscious decision. That conscious choice takes determination and a lot of patience. But the first step, as always, is to decide.

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May 16, 2014

Fire Escape

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Recently, there has been a rash of fire drills: one at my place of worship, another at my husband’s work and one at my daughter’s school. I heard that our evacuation was “slow” because one of our elderly members walked down the stairs. And we have a lot of stairs at our Meeting House. It is a complicated business, arranging a fire evacuation, requiring room sweeps, checklists and timings.

Our elevator is mainly there to help those less able. But, in the event of a fire, I have always been taught not to use the lift, only to use the stairs, the traditional fire escape with the steps round the back. I can manage them fine, but I take longer, so, l would normally be instructed to collect with other less able users, remain in a place of safety, and wait to be evacuated from the building last, so as not to hold up other able-bodied users on the stairs. If I hold up those behind me, I risk getting crushed.

Set test drills against what might really happen in a genuine emergency, and a whole new range of possibilities raise their heads. Less able users may be authorised to use the lift if the fire was well away from the lift shaft. In a ‘real fire’ scenario, I would be reluctant to await rescue, fearing that I might be overlooked.

My husband, who has arrested hydrocephalus, was, a propos of his disability (which is not something he ever discusses with anyone, not even me) instructed to move to a designated place and await collection, just as if he were a piece of lost luggage.  His disability in no way affects his speed of travel, and, like me, he disliked being singled out for this dubious attention.

It might be possible to stipulate that every building should have two stairs, one for use by the able bodied, and the other reserved for use by the less able. But if there are two stairs, the users of the building will insist that they use both, and in a real emergency, I don’t fancy trying to stop them, do you? I would not want to, even if I could.

Perhaps it makes sense to evacuate the less able users first. Of course, that would take up precious minutes. So, I guess that means we less able users will just have to take our chances. Don’t fancy it, though.

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May 2, 2014

Fran

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The last hours of the term had come and gone, and with it the last day of her schooling: The faded purple jackets, the wrinkled socks, the scuffed shoes, the bare legs beneath prickly tweed skirts. All these things were at home only in her memory now, as well as the sounds and calls that went with them, the slope of the ground in this spot, or the shade next to these bars. All in the past. Next year it would be someone else’s turn, and she was too old to do any more of this.

With a small sigh of longing, she walked to the gate, always one of the last to leave. This time she was old enough to take herself home and did not have to wait to be collected, as her mother forgot: nineteen next birthday, she was old enough to get home alone, even if she took a long time. There was no hurry, she didn’t start at her new studies until October – so long! Almost four months.

Suddenly she heard a voice: “Fran!” and felt the arm of her friend, the teacher, over her shoulder. A close goodbye: A real hug! Her spirits leapt for this sign of love, “Good luck, Fran, you will be fine!” and a heart-wrapped embrace in strong arms, the sort Fran would fall for. Now, no-one would say anything, there were no raised eyebrows. It was all okay. There were kisses on her cheeks, and she smiled up into eyes which glimmered. They said nothing, though both meant, “Thank you. If I don’t see you before, see you in heaven!” and it was finished.

Raised up, Fran was happier now, and more confident. She knew it would be all right. And that next year, although it would all be different, unusual, to be learned again, no matter. The bruises of lost friendship were already healing, fading.

Fran was used to moving, to change, to a feeling that nothing lasts. And yet, her friendships meant a lot to her and anchored themselves deeply. Nothing much could really be said – it was all a look, a smile, a passing word – but the resonance stayed, hanging like a perfume, and was never forgotten. Fran, for all the rooting up and re-setting, each time weaker in a new place, was a deeply loyal woman, and knowing. She knew what she was doing, when she gave her heart so easily. She knew that she would not stop loving those she fell for. And time, distance, age meant nothing. Death was not the point. It would all work out, it was all understood, allowed, agreed at the end. She knew she would see her friends, her lovers, even those she had adored from a distance. She would see them all again.

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April 30, 2014

Lopsided

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Okay…so now to put on shoes.  Gingerly, she dried her toes, being careful not to let the towel flop into the sopping puddle beneath the bench.  Though she instinctively tilted to the other direction, it was important to remember to put her right sock and shoe on first, so that the broader, flatter foot could then support the weight of her left leg lifted over her right knee to put on her left sock and shoe. Done the other way, her left foot bent uncomfortably outwards, trying to support the weight of her right leg as she lifted it over her opposing knee. That caused warping and damage of all the wrong sorts, so it was important to remember the right order of things.

Collecting her towel, costume, shampoo bottle and comb, she was grateful that she travelled light. Given her body’s lopsided lurch, could she pass through that gap? Would the floor be slippery? Was she risking a drop into the pool? Only one way to find out – “Excuse me!”  All right this time.

Passing through the swing doors, she balanced carefully so that the door weight would help rather than hinder, and carefully negotiated the stairs down. It looked easy enough, because she had been coming to this pool for almost forty years, but, put her at another poolside, and the vista became more frightening, less certain. She had patterns, places she went and could visit, because they were familiar. Remove that relaxing element of knowing what came next, and she floundered. It all became a bit predictable after a while though. She did long to go somewhere different.

People are not symmetrical, naturally, and there is no harm in that. Mostly, our hips and backs are able to compensate for minor differences, such as one leg slightly longer than its neighbour, or a slightly off-kilter spine. But put the whole mishmash together, and some days, she just wanted to dissolve into the water, so fed up was she with her short-sighted, just about can’t quite get it life. This morning at the pool, for instance, putting on her top and jacket, she leaned against the wall of the cubicle and tears just sprang up and kept coming. She was grateful for poolside noises echoing, which disguised her gulping sniffs. The yearning for release was so intense that she could hardly see her way to leave, to walk down the steps and out the door. But no-one commented as she reached the car, sank into her seat and wept shamefacedly, until she forced herself to stop. Got to go. Lopsided or no, must get on.

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April 25, 2014

Anything for a blue badge

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Anything for a blue badge.

Now the Local Council had got in on the act, sending her a forty page form to renew her blue badge.  She sighed.  Such bureaucratic heavy handedness used to be reserved for the alphabet people, the DLA, PIP, WTC, HMRC, TLA agencies.  But now, even the suits in the downtown offices seemed to approach parked cars with a cudgel.  Since when had parking become so contentious?

Yes, she qualified for a DLA exemption, and here was a copy of her current letter of award.

Yes, she had a disability, although when asked to indicate its precise nature and extent within the boundaries of the small box provided, she was unable, sorry, to provide the entire requisite details.

Yes, she had always had a disability, still had it and always would have, God save her soul from its crushing drudgery.  She would have loved to lose it, say, or leave it behind unclaimed at a lost property somewhere, but no.  Perhaps it would be fairer to indicate how, in her own words, her disability had had her.

No, her disability was not progressive, but Yes, its effects did vary though again, she was unable to indicate the full nature and extent of its variableness even within the box outlined or on the extra space provided overleaf.  How does one articulate loss, sorrow, heaviness, isolation, poverty, pain, humiliation and sheer boredom?  She did her best, indicating that there were days she didn’t feel like getting out of bed, but she had to, nonetheless; that there were times when she had to crawl, because walking was impossible.  That the wind and rain often put paid to her plans for some fresh air.  That the complexities of driving into town were only made possible because she knew a place to park nearby.

She filled in the form, doing her best to suppress mounting irritation.  She posted it off and within a few weeks her new badge came, all shiny and laminated, and with a picture of her unhappy visage on the back.  It was a valuable, vital piece of kit for travel into town, her badge of freedom.  Such a pity that she had to reveal so many personal details in order to get it.

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April 23, 2014

Stereotypes

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I stand corrected. And mute. And grateful. At my husband’s church, I have been reminded that stereotypes are unacceptable: gently, kindly and without the slightest hint of rancour.

Getting carried away with the joy of all Easter egg hunts and too much sweet chocolate, I had just blurted out, “Let him be, he’s just getting it out of his system, just like all boys…”

In reply to the mild rebuke, not entirely seriously, I resorted to that age old defence, “What about testosterone?”

But that is no answer, and never has been. Strange, that I should need reminding, that stereotypes don’t bear in them any grain of truth – they merely allow us to continue with lazy thinking, with “them and us” mentality. As soon as we resort to generalisations, we forget to see the individual smile, or to remark on its particular meaning.

You would think that I would know that. I have spent years defending my particular capabilities and weaknesses against the ravages of careless stereotypes, the casually flung cruelties, “Oh, I thought all spastics, were, you know……” and even against the assumptions that I must feel differently, have a particular point of view, a special take on something, or a particular weakness. Well, no, I just want to be treated like the rest of common humanity.

Like everyone else, I have my failings, even, those you might not expect to see. If that small exchange has taught me anything, perhaps it is that we learn constantly. In each particular moment, it becomes a discipline to consider what we mean and what we say.

Writing excuses my more clumsy verbal mistakes. But I cannot hide forever. If I wish to be taken up, as the rest of humanity is, then I must train my words and actions to be more careful, more considered. I cannot expect to be excused, merely because my frailties are conspicuous. We all have frailties to contend with. I have much to learn, in realising that while you manage to deal gracefully with life, I am still learning to do so.

I am grateful for the reminder.

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April 22, 2014

Forty Years of Finger Food

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Forty years of finger food.

She started out with lovely hands, just like those of her sisters and friends. Then fear came knocking; and cheerful certainties were replaced with doubt. Her heart wavered, and the pulling started. The assaults crept up, vicious and swiping, creating bloody pain. Though her skin crept bravely back again and again, and relentlessly hopeful sinews showed her a better way, fearfully she attacked, each time swearing it was finished and each time returning to stare balefully at the scene of devastation. Her sister wept unseen, for such frantic sorrow and ugliness.

She learned to sit with her hands folded in, the thumbs covered, to hide ridges of crenelated repulsion, spirals witnessing to her despair. And always, hope reached and grew out again, as her father whispered rebukes or blustered about the state of her.

“What you are seeking is stillness,” said a new friend, who knew: Self-expression allowing smiles to remain open; courage to sing a few wrong notes and stay serene; not swoop to self-hatred for her frailties, but, as another reminded her gently,

May you love yourself completely, and with great kindness, just as you are now, no matter what happens… offering a meditation which is intended to be repeated, until it is believed. Such generous permissions as these, over time extended hope like a new hand, setting her free and renewed, to explore the reality of forgiveness and fresh release. Thus, true silence began and held, gently and then firmly.

Wisdom, so clear and obvious, finally showed her how to be still, how to wait patiently, and with hope. While waiting, her skin knitted quietly and her hands grew peaceful.

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April 17, 2014

Sounding Plausible

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It was in her training, the way she had been thought to consider and reason. It was in the daily round of telephone calls and interviews, people asking questions and expecting her to know the answers. It was in her genetics, and in the diplomatic pedantry that her father taught her.

“Father, why are you wearing green wellington boots?” “Well, now, lieveke, that depends on whether you would like to hear the practical reason, the medical reason, the environmental reason, the aesthetic, the pragmatic or the spiritual reason…”

“Just why?”

“Well, you see, my other shoes, the only ones I brought with me are not practical for wandering around garden centres…these boots are also more comfortable, since my toes are aching, and they are waterproof, which is useful on a day like today. I do not want to spoil the leather on my shoes. Also, since I forgot to bring my polishing set, and we are going to Tante Mieke’s funeral, I shall need to keep my shoes clean.” He smiled archly, enjoying the verbal game.

So, it was her habit, when making polite conversation, to attempt answers to most questions. When a guest at her sister’s “House cooling” party asked, “Why is the Earth round?” she answered easily, “Because round is the optimal shape. Leave a bunch of elements suspended in air, and they will naturally pull together in a round shape.”

He nodded agreeably, and then, fixing her with a stare, challenged, “Is that true?” to which the only honest reply was, “I’ve no idea, but it sounds good, doesn’t it?” so that he gave a grudging nod. She was not dishonest, since she would readily admit she was simply playing with ideas; but, ever and always in her professional career, she had made a living out of sounding plausible.

 

 

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March 24, 2014

Gratitude

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What a strange week it has been. Emotions all over the place, and feeling like a ship tossed on the high seas. The peaks and troughs of having a real job to go to; the agonies of intimacies and private sorrows spoken calmly into a microphone; the kindness of the engineer with his humour and support, his business-like attitude keeping us both on track. At the same time, very generous and lovely reviews for “Trapped” on Amazon UK and Amazon US are posted, which make me feel very emotional gratitude, for different reasons. For added spice there is also have the occasional disappointment from people I don’t even know, who cut off contact with me, for daring to critique their work.

Sorry, folks, but I have kinda got used to critiquing literary works, as politely as I know how, and am rather surprised, these days, to having my comments taken quite so seriously. Whatever I offer is only my opinion, and I am quite happy for people to disagree with me, without feeling the need to go for the full excision. Can we not agree to disagree and remain friendly? Not always, apparently. In the same batch of emails, comforting and lovely news far outweighs the dubious, so after a few careful deletions, I think we can all get on with our lives. It has been a very strange week.

In the mixter-maxter, I feel a lot of thankfulness, too, lately. I am so pleased and thankful to anyone who posts helpful comments, adds lovely reviews and sends supportive love. It means the world to me. Check out these lovely reviews, and add your own.

http://www.amazon.co.uk/Trapped-My-Life-Cerebral-Palsy/dp/1628737611/ref=sr_1_1?s=books&ie=UTF8&qid=1395592429&sr=1-1&keywords=fran+macilvey

 

Daffodils_in_a_vase

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March 19, 2014

I Must Not Be Selfish

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Just when I reach one of my lowest ebbs, there come two pictures of daffodils posted on Facebook by a lovely friend. I gaze at these and determine that what I most need is not courage or resignation, but discipline. And so decided, I don my scarf and coat and go outside for all of ten minutes in search of elusive daffodils nearby. It is windy and cold, a blast of spring air. As I gaze up into the sullen, darkening sky which mirrors my mood so neatly, I realise, This is not about me. I must not be selfish.

In writing my book, “Trapped: My Life With Cerebral Palsy” and now in narrating it for the audio book, I have at last accepted fully that, regardless of how humiliated I may feel, there is more at stake here, than my privacy or my sense of personal dignity. Other people are working hard for me, it is true, and many of them do so for little tangible reward. But the picture is bigger than this. I can read, and write, and I have a wonderful life. I have freedom to move and the space to express my preferences. I know that, most days, I do not do enough with that freedom, but at least I can move away from here. I have always known that, in life, it is having options that matters most.

There are millions of people in the world who suffer in silence, who endure cruelty, exclusion and neglect, and who have no-one to speak for them: millions of children who are misdiagnosed, misunderstood, pigeonholed, forgotten and overlooked: millions of adults who can do nothing about the places they find themselves in. As I write in my book,

“How many others with issues like mine are languishing in the shadows of institutional ignorance because their families listen politely to advice which owes more to prejudice and speculation than to hard facts or compassion? If it wasn’t for my mother’s decision so often to disagree, to go it alone, I would be in a “home,” possibly dead, having led only a teeny little bit of a life. No one would have known anything about me, or uncovered the thoughts lurking behind my eyes. The smallness of my life would have remained a hidden loss, overlooked, as the lives of so many disabled adults are overlooked.”

If my book can strike a blow for freedom of conscience, self-expression, human dignity and compassion, then the small terrors I have to endure are well worth the price. God will give me the strength to do as I must. And, with that faith, together we can all join and create miracles. I do so hope you agree.

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