honesty

April 11, 2014

I Had No Idea

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Reactions to my book, “Trapped: My Life With Cerebral Palsy” have been overwhelmingly supportive and loving, with thoughtful and generous crits and reviews being posted on Amazon UK, Amazon.com (USA), Goodreads, Facebook and other websites. I am very touched and pleased that my story has already reached so many readers.

Interestingly, a great many people whom I would count as good friends, react surprised, saying, I had no idea. They are really astonished that so much can have happened of which they have been unaware, though of course, being introverted, depressed and solitary for so many years, it is unsurprising that, until now, only little fragments of my life and times, my thoughts, have surfaced to reach the light of day.

I counted it an important necessity to maintain peaceful dignity, but often that is a way of staying away from the helping arms that others willingly extend towards us. We do need to show our weaknesses, our frailty, and allow others to understand. I’m sorry that, for so long, I have been unable to share intimacies, or to trust that the reactions of friends and family would be supportive. I regret the missed opportunities to share more fully, because, at the very least, sharing would have helped me to notice that we all have stuff to deal with, we all struggle and suffer together in this melting pot called “Life”. Seeing that more clearly before now, would have given me the courage to make more mistakes, be more outspoken, to take more (small) risks so that I might move more freely and help others more often.

Today is a new day. And these resolutions build up slowly, gently forcing my hand. Thank God for the kindness of friends and strangers, and for the love that you have shown me. Thank you.

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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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March 18, 2014

Reading with Ariel

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Reading with Ariel

I hope readers of my blog will forgive me: I have not posted anything this week, because I am narrating the audiobook of “Trapped: My Life With Cerebral Palsy”. Doing so is heart-wrenchingly difficult.

The audio producer kindly asked me if I would like to read. The word “like” suggests enjoyment, fulfilment. So when I said ‘yes please’, that was fine, and doubtless they see no reason for me to be unhappy about it. Of course, I would do it, even if they asked me again, I would give the same answer, but that does not mean it has been easy.

Writing about the painful episodes of my life – that would be from the age of five to about forty-two, then – is one thing. There is something reassuring in writing that conveys meaning which, while it may have to be spelt out, nevertheless maintains a dignified silence. Articulating the same passages with sound, brings a whole level of new pain to the experience which can hardly be appreciated by those who do not have to endure it. Actually, I am familiar with being told what to do, and my obedient persona complies easily with requests to repeat difficult passages. These are the worst, of course, because they are the hardest to get right, to do calmly, and so have to be done again. I pray continuously, not to break down and weep. I ask for help from my guardian angels. I clench my fists hard and beg, and swallow and wait and hope for the next storm to pass, because there are timetables to meet. Because there are only so many times I would like to cry about this, again.

Brosen Bielsk - Podlaski Aniol
Brosen Bielsk – Podlaski Aniol

It has something to do with feeling humiliated, and having to expose truths and lies that I have held beneath a dignified silence for so long.

Whatever way I might have chosen to play this, there were always going to be disadvantages and benefits. I learn, the storm passes, and a smile is always waiting to lift me up. Thank God.

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March 10, 2014

Fear

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Optimism, faith and relaxing with Life were yesterday’s theories. God bless Sundays.

Today, I am wondering about the wisdom of having shipped out copies of my first book, “Trapped: My Life With Cerebral Palsy” to my long-time friends. I worry that they will read my story, and, filled with a new and worrisome incomprehension, they will flee from me, and possibly never speak to me again.

The older, wiser me steps in and attempts to arbitrate this fear, “Ah, but is fear of the reactions of others – even our friends – ever a reason to not do something which we feel impelled towards?”  And I know, of course not, no. If we let our fears of disapproval dictate our actions all the time, we would have very small lives. Ruled by fear, what do we become? Mere shadows. Intellectually, logically and spiritually, I know this. I know too, that my friends like and love me for who I am. In most cases, a mere book will probably not come between us. But emotionally, I am less robust, frightened of my steps into the unknown, this uncharted territory. My resolution wavers wildly, and I am prone to unexpectedly fierce bouts of weeping. How will my kith and kin react to this latest bout of independent action? When my neighbours see me again, will their minds rove constantly to the sorrowful and shameful revelations of my story? Will their eyes flicker in disbelief or widen in disgust? I doubt it, yet part of me is sorrowful in fear.

The answer is in what I have written earlier, that the Universe is constantly conspiring to work things out in our favour. So then, everything I do is part of that process, in which there is nothing much to think about, far less actually worry about and a great deal to enjoy. Okay, that sounds gentle and reassuring, so it works  meantime. Now, who else would like a copy of my book?

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March 6, 2014

Brian 2 – continued

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Brian 2 – continued

I wis a good kid. In primary I did well and enjoyed bein’ at school, but at the end of second year in the high school, I got bored. There was too much banter in class, disrespect and not what I was used tae, so I just left. Started bunking off a couple of days a week, but I would amuse myself, you know, go to the museums and that. I used to read all about everything, and I remembered a lot o’ it. That was interesting, not like being in class where the teacher threatened you all the time and the boys never sat still. Which was worse than doing nothing, really. I got used to making do for myself, and though I have no exams and that, I did well, learning to cook. It was just something I could do easily, after watching my ma cook for eleven of us all those years. It came naturally to me, and I enjoyed thinking what I could do with food. So I got a great job in one of the big hotels, really good money, got all the stuff, you know. I had the wife, the kids, the flash car and the great house. I used to think nothing of going for a drive with ma wife on my weekends off, somewhere to a nice restaurant for lunch, maybe. She would look at me as if I was mad, said she could easily cook us up something, but I liked treating her special when I got the chance. I always told her the money wasnae a problem and it wasn’t, not while I was working and bringing in maybe hundreds of pounds a week, especially with overtime and bonuses and all that. It was going well for me, and I was still young. When you’re young you feel like nothing can get to you.

The job was stressful. I recon I was sweating maybe ten hours a day, making meals over and over, and you just get to feel strong, a bit like a machine. Just plug it in and on we go. So when one of the lads started larking about with the white stuff, I took a hit and thought nothing of it. I could control what I was doing and anyway, that first time was a Saturday, after my shift. I remember it so clearly, now, that I didn’t even really think. I never had that feeling of, “What are you doing here, do you want to do this?” Nah, I just took what I was given and said, “Ta, mate” and “I’ll see you right” and all the things you say, when you think someone has done you a favour.

I got on with my life, with going home to the family and getting into work, but now I had two secrets. I had the drink, which was creeping up on me, and I had the new drug, which I didn’t take often, but then, you don’t need to, do you? It is never the same as the first time, though, and you have to keep taking more to get the same high. Just tiny bits more and more, so you hardly notice. No-one said anything to me, and my wife just thought it was the booze. A couple of times her face swam in and out of focus when I was driving, so she took the wheel, but she just let me cool off after. It crept up that slowly, by the time she noticed, I was far gone and didn’t care about anything much except earning enough to keep my habit going. As far as I knew, I was earning, so that was alright, and so long as I could do that, no-one could complain, could they?

Until the boss found me weaving about the kitchen, sweating and swearing and brandishing knives. Paranoia is not good in any kitchen. Straight away he knew what it was, and he warned me, said he would be within his rights to fire me on the spot. Can’t have chefs threatening to slice open the waiters, can we? But he gave me one more chance and, of course, I blew it. I was all mixed up, completely out of control most of the time. Charging around like a demented dog, it is no wonder I was run out of there very quickly after he found me threatening to slice a delivery man into pieces. That would have done nothing for the reputation of his hotel, would it? I can smile now, but actually, I feel ashamed that people have given me such good chances and I’ve let them down.

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March 5, 2014

Brian 2

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Brian 2

“Oy! Watch where you’re going, won’t ya?!” Suddenly, there was this woman yelling at me to keep out of her way, rolling forward on the balls of her feet and standing over me, the bulk of her body blocking out the draining light of a late afternoon in August. She had a fag in her fingers and the smell was drifting unpleasantly up my nostrils, but you know, the burnt heat of it sort of woke me up. Dozing on my patch where I always sit, she had just walked up and almost past me, about to kick me and then thinking better of it. “Gerra life, ya lazy bag of shite…” she mumbled, suddenly aware of her mistake and that I was alert and not actually a dope-head. I pulled on Gazza’s chain and just waited.  Maybe she hadn’t seen him tucked under the blanket at my side, or maybe she felt caught out, but she mumbled, hocked and spat just next to me, and then moved on, taking her shopping bag, her dripping fag and her bad attitude away with her.

I am getting used to it, but after more than twelve years on the streets, and being settled here where most people know me and respect my patch – I leave theirs well alone, too – angry outbursts from stupid people are getting a bit predictable, you know? Like, I have a brain in my head, I have good eyesight, and I know all the best places to get a warm bed or a meal for under a fiver. I can spot trouble at forty paces so I’m quite savvy enough. It’s a wonder to me, that people see me sitting peacefully here, just minding my own business, but they think I’m out of it, a fuck-head, witless, away with the fairies. I’m not, as it happens, and what happened to me could happen to any of youse, too.

I was the youngest of nine children. Me mum was always after me to tidy my side of the room, to brush my hair or my teeth, wash my face, make myself neat. Though her pestering annoyed me, something must have stayed, because I find myself becoming more house-proud as the years pass, which is daft. My house is currently a static caravan looking out onto a field in Midlothian. I’m renting it, courtesy of a friend of my da’s who has two of them, and lets me have that one for me and my dog.  It looks out onto a big field at the back. And I have my pitch here, just next to the bank and down from the High Street. It is a good place to sit, though I would not call it comfortable being on my arse for hours at a time. I’m thin under my padded jacket, I know, and I don’t much like it when well fed people point that out to me, either. It’s not as if I don’t know about food, after all.

People sometimes don’t see me, like when it’s crowded, like just at this time of year when the streets are mobbed and nobody’s looking where they’re goin’. They really don’t notice me down here and I get kicked in the shins. My dog, he gets stepped on, which isnae fair on him. People throw things too, bottles, cartons of half-finished food, they just throw them down and expect the Council to collect them up and take them away. Or they leave half-finished bottles of alcohol on the sill next to my head and the smell sends me back a few years.

I was a drinker, but it wasnae that did for me. Not really. Yes, I was mixing my drinks, drinking at work, but it was the coke that finally got tae me. One mistake. Really, that’s all it was, because with some drugs, ye just cannae dae it the once and expect tae leave it. It comes efter ye like a cloud of promises that make your mouth dry and your body sweat and your eyes see things that areney there. That’s the worst, the not feeling right and not knowing how long it will tak tae feel solid again.

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January 28, 2014

Life With Arial

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Life with Arial

I see life clearly in Arial twelve point, when I am typing. My mother says it is too basic a font, unrefined and rather ambiguous. But I see it as straightforward, smooth and undemanding, generously allowing me get on with what I want to write, rather than having to work through the sweep of clever lines and blocking corners. Times New Roman, for example, feels quite alien to me and rather overblown. Since everyone chooses to use it, it seems to have become rather full of itself.

Perhaps my preference for the Arial typeface merely reflects the differences between my mother and me. While I enjoy a challenge, at times I can find myself too easily unbalanced and overthrown; I need to be able to see where I am plotting my path, well in advance and with no nasty surprises. Keeping going can be a rather tedious, short sighted sort of preoccupation, so that the last thing I need is life with extra knobs on. My mother, on the other hand, seems to be able to dismiss complexity easily. “Darling, it’s nothing I haven’t seen before.” It makes me smile, broadly, but I keep my loyalty to Arial. Besides, Arial sounds like its brother, the Archangel Ariel, whereas Times New Roman sounds like an oppressive, imperialist stride.

Before long, I’m going to start narrating for the audio copy of my first book, which is being published on 4th March. I’ve never done anything like that before, but it will get me out of the house, make me work, and focus my mind on producing a good sound. When I write, I like to talk through my work anyway, which I hope has been good practice for what happens next. In a sound-proof booth I shall be speaking into a mike, a sound engineer working with me just beyond the glass. Hopefully, just me and her. (I was going to say “him” but I threw that in there just as a little surprise.)

I’ve been busy preparing an audio script, double spaced, lots of room to remind me to slow down, and in twelve point Arial, which will feel familiar and soothing. I like the thought of an angel with me, when I am speaking aloud the most intimate details I have ever shared – an unusually emotional challenge. It is easy to write confessional material late at night in the privacy of home. But speaking it aloud, how will that feel?

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January 22, 2014

I have a dream

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I have a dream

A dream I had recently seems set to plague me. I am slumped over on a roundabout, in the middle of five lanes of cars all moving extremely fast, fluidly and confidently along the motorway of their lives. I am crouching down, just barely seated on a concrete traffic island in the middle of this, and there is no-where to go. My face is bashed and bruised, and my spectacles are crooked, broken. To have fallen, that would explain the bruises.

Beside me there are two older men, dressed in torn rags, drinkers, I suspect, from the look of their faces. They would have been loved once, when they were younger, fitter and less broken by the ravages of their street lives. Now, they are hardened street bums, and over us all stands a policeman in a smart blue uniform, eyeing us warily.

The cop thinks I am like them. He thinks I am a waster, a loser. Because I cannot get up and walk, because I would stagger and fall into the traffic with fatal consequences, I cannot move. Meantime, another one of me is in a cool, quiet hotel lobby, explaining to a reporter….

“I just got a life, and now they have taken it away from me. While everyone else seems to be going places, here I am stuck on the roundabout, because now, I cannot leave the house. I had such a small life before I had my car, and now, what little freedom I managed to discover has been taken away, as if I am unworthy to be part of the stream of life that others just accept as their due.”

Instead of asking people if they can walk, those who dole out financial assistance and monitor its value in the lives of disabled users, should be looking at the difference it makes. Without a car, for example, I would be stranded at home, staring out of the windows. It is difficult, expensive and rather dangerous for me to venture outside. Without the freedom to drive a small way each day, venturing outdoors becomes exhausting and ruinously expensive. Most of us who currently have the use of a car will, if it taken away from us as a result of the latest welfare reforms, find ourselves cornered at home, having no wish to get run over, or to bankrupt ourselves or the family.

While the government talks about austerity cuts, they forget that most people who currently benefit from free vehicles depend on them utterly, to participate in life and make living meaningful and active, despite disability.  Without a car, my life choices shrivel and I become morose, depressed and exhausted. Austerity may be necessary, but taking away vital tools from those who depend on them, is like cutting off a limb or two. No-one, in this latest round of cost saving, is forcing the able-bodied to surrender their freedom. Yet without a car, there is precious little choice left to the rest of us between having a life and a living death.

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January 13, 2014

Emotions all over the place

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Emotions all over the place

Suzie could see herself, snapping and snarling as she wiped the tiles behind the cooker, which streamed with steaming rivulets of water. The entire back wall had to be wiped down fast, her arms carefully navigating behind hot handles, sticky bottles of oil and damp teabag boxes containing unused chamomile infusion. She could hear herself getting angry, and wanting to stop, but why could Ali not see what needed done? Why was he leaving her to do all this now, while he tucked into steak pie? Why had he burnt the curly kale, left the potatoes to boil to mush? She had been gone only ten minutes.

Squeezing out the heavy, hot cloths, she abandoned her scrubbing, wiping and sniping, then sat reluctantly with a heavy thump and salvaged what she could of her own meal – charred kale, cooling potatoes and hummus – while her husband and daughter carefully finished their steak pie. Maxine slipped out of the door and Ali quietly waited for the storm to pass. Suzie had to decide what to do.

“I want you to -” she tried to explain, “And I get cross, because you never …”

Ali nodded, “Yes. That is true. I don’t”

“And you will always be just yourself, after all.”

“And I do love you.”

“I’m sorry I left the kitchen, but I thought you knew.”

“Knew what? You never said.”

“Not to burn the kale, to add water.” At this, she was hard pressed not to cry aloud, thinking that without her to tend to this kind of thing, her husband and daughter would live on pies and bacon and eggs. Her heart heaved with sorrow at the loss of veg. Without her there, he would manage meals in his own way, but would that include any green stuff? It was a worry, of sorts.

Then she recalled her sister, burning onions, and a small, wry, smile lifted her face.  Even the best cooks forget to tell each other, “The soup needs a stir in five minutes, I’m just out to the garden for a moment.” Even the best of intentions get caught up in conversations, as we stand with our backs to a pot bubbling up over the stove. Accidents happen when we have other things to do.

“I’ll tell you, next time I go out.”

“And I’ll try to watch more closely.”

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