Trapped: My Life with Cerebral Palsy

Trapped: My Life with Cerebral Palsy

by Fran Macilvey

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Overview

Trapped: My Life with Cerebral Palsy by Fran Macilvey


The true story of one woman’s life with cerebral palsy.

Living in the Belgian Congo with her husband in the 1960s, Fran’s mother became pregnant with a daughter. However, right after she gave birth in the hospital, she felt strange. Unbeknownst to anyone, another daughter was on the way, but before anybody responded, an hour had passed. Because of the delay, Fran was born with cerebral palsy.

Growing up with her siblings in Africa, Fran always felt different. When everyone else was playing and having fun, she would watch and wish she could join in. After the family moved to Scotland and Fran grew older, her hurt turned into anger, self-hatred, and suicidal depression. Then one day, someone looked at her and saw a woman to love, and that was the start of her journey to self-acceptance.

Fran has written the painful truth about her life to help readers understand how disabled adults really feel. In her revealing account, she shows just how hard it is to maintain the appearance of a “normal” life. More importantly, out of her million and one mistakes have come lessons in real acceptance, peace, and joy, which she would like to share with her readers.

Product Details

ISBN-13: 9781510704121
Publisher: Skyhorse Publishing
Publication date: 07/12/2016
Pages: 192
Sales rank: 1,258,706
Product dimensions: 6.00(w) x 9.00(h) x 0.70(d)

About the Author

Fran Macilvey was born premature and disabled in the Belgian Congo in 1965. Returning to Scotland in 1972, she spent eight years at boarding school, then qualified and practiced as a solicitor for ten years before returning to her first passion, writing. Apart from Trapped she has written two further books drawing on her experiences with disability. When she’s not catching up on her sleep, she reads, writes, sings in the shower, and dances where no one can see her. She lives with her husband and daughter in Scotland.

Read an Excerpt

Trapped

My Life With Cerebral Palsy


By Fran Macilvey

Skyhorse Publishing

Copyright © 2014 Ann Forsyth
All rights reserved.
ISBN: 978-1-62914-129-9


CHAPTER 1

"Are you all right?"

This is my all-time favorite question, usually asked by concerned strangers with creased brows. Every time I fall, a flutter of enquiries greets me. Yet the chances are, if you are bending over to check whether I am all right, I have just tumbled hard to stony ground. Once again it has come up to meet me in a familiar, rough embrace, scraping skin off my knuckles or palms, which are now embedded with gravel, adding spots of blood to the muddy mess on my cuffs. Am I all right? I guess not, though I probably will be in a while.

It is good of you to ask and you are being very kind, but I am flat on my face. My spectacles are bent at a jaunty angle on my forehead, or are lying somewhere, glinting underfoot. Quickly, I grope for them before they get stepped on.

My daughter and I often traipse along the narrow canal pathway on the "school run," a welter of bikes, prams, dogs, and joggers whisking narrowly past. In the midst of wheels and staring schoolchildren, I make light of my body spread-eagled on the concreted towpath. I turn up my head and fix on a smile, the grin that suggests I am having the most marvelous time down here. If it is a quiet morning, I quip, "I am trying to get a tan!" or "I just fancied a rest," so that passers-by feel reassured. Once they are out of sight, I pull myself laboriously to my feet, sigh, and shuffle off again. Over and over this happens. I hate it, but have no choice.

I am not exceptional — only a middle-aged woman. I have almost forgotten that when I was younger I lived in Africa and ate home-harvested mangos, paw-paw, and passion fruit for breakfast. In the days before long-haul package holidays and well- meaning documentary makers crowding the game parks, we watched sentinel flamingos at dawn, yawning hippos stretching after a snooze, broad elephants placidly pulling breakfast from the ground nearby. We ate, slept, and lived in luxury, but not always happily.

Our family has had its share of problems, as all families do. But when I came along, everyday difficulties and disagreements skidded to the sidelines, while I and my problems dwelt unwillingly in the limelight; because I suffocated at birth, I have cerebral palsy, which makes walking in a calm, straight line impossible. My gait swings me from side to side. It is only with the helpful arm of a friend or an elbow crutch that my walking appears at all normal out of doors. Even then, I resemble an intransigent triangle, taking up more room than I should. In ultra-modern sneakers, I wobble like a drunkard, though other shoes are too uncomfortable to wear outside. As long as I have something to lean on, my wobblers help to straighten my back and take the strain off my knees and feet. They help me with the effort of walking.

"Excuse me!" puffs yet another sweaty jogger at my shoulder. I try to shrink myself further into the undergrowth, not because I aim, necessarily, to oblige; off the path, I stand less chance of being run down. By now I have sweat in my eyes and a stitch in my side, so I snatch a rest where no one will "'scuse me" for a few seconds.

My beloved daughter, her golden hair glinting in fresh spring sunlight, walks ahead and then waits patiently, wishing her daddy had brought her. When we start out in the streets around our apartment, it is all right for her to hold my hand. But the towpath is less roomy; and in any case, she doesn't want to be seen with me so much and would rather go by herself to school. Who could blame her? She walks with an easy, slim grace. I admire her strolling gentleness and wonder how such a calm, smooth creature could be my daughter. I, by contrast, sweat and inwardly swear, wishing I was anywhere but here.

Occasionally I ask myself whether I might prefer oblivion with its teasing mirage of soft comforts, but I have stopped saying, "I wish I had never been born" or "I wish I was dead" since these words do not help me to live a happy life. I used to run these phrases continuously in my head, before I understood how dangerous that is.

Welcome to my average day. All my days could be like this, especially when I forget to turn my tap of cheerfulness up to maximum. I must make a very deliberate effort not to cry, especially after I have fallen down somewhere public, busy, and humiliating. Landing untidily among nettles, plastic bags containing dog shit, potato chip bags, and half- empty beer cans is routine. I could write the definitive thesis on "How to Fall Safely" (most situations catered for). Even so, I regularly graze my hands and knees, or smear them with nameless messes that other people discard. I usually remember to take a hankie to help clean myself up. I cannot carry a faucet and towel with me. What would Seline say if I unbolted the kitchen sink and hauled it onto my back? "Come on, Mum, hurry up!"

On a good day I almost bounce. Once I fell head first down six deep stone steps at our local swimming pool and then got up and walked away, politely reassuring the astonished receptionist that I was unharmed. Though I felt like a circus performer, I make light of this talent simply because I have been falling since I first stood up. I am well into my forties, so the novelty of tumbling gracefully has worn off, replaced by a grim knowledge that I am no longer so good at mending. How long before I break a wrist, fracture a femur, or crack open my head? The question is beginning to feel old, as is the assorted patting, groping, and the sneers of the few folks who walk straight past me with their noses in the air. They must hear me muttering and decide that I am not right in the head. My bad temper is not aimed at them, but at falling yet again — I'm angry at life!

There are some who think I am a total disgrace to be collapsing drunk "at this time of day." Once, I pretended I had been drinking. I was a student — a young, smooth-faced girl with closely cropped hair, whom everyone mistook for a boy. On that morning I was walking home from the crowd of shabby stores on the main road, where you might find beer, discounted food, haphazard hardware: useful for a packet of fries or a jug of milk. I was going to get breakfast, when I tripped, flew, and — flump! — landed on the sidewalk. It was just my luck to have been seen by two well-intentioned habitués of the local bar, who assumed I had drunk too much amber nectar the night before and was just beginning to sober up. Before I knew what was happening, this pair of gentle gents hoisted me to my feet and, keeping their arms firmly under mine, decided to walk me home and make sure I could get the key in the lock of my front door. It wasn't far to go, just a block or two. They were joking so kindly, "Aye, lad, yev had a few too many last night, eh?" that I decided I would let them off. I didn't feel like being sniffy, hoity-toity, so I sank my voice as low as it would go, and carried on chatting in the local brogue, "Aye! O' righ'— Ah hiv 'n au! A wis stoopi' wis'n A'?!" Once they saw I had my key, they went away shaking their heads, pleased with theyselves for having bin so kind to this young man … shame he wis such a drinker, though.

When someone kind comes to help me, I believe in being as nice to them as possible. That can be a real challenge when I am sore, dirty, bleeding, embarrassed, and worried about my wrists. I have fallen hard on concrete perhaps fourteen thousand times. So, if you ever pick me up off the ground, please try to understand that any crossness that escapes from my well-controlled exterior, any apparent bad nature you may glimpse, has nothing whatsoever to do with you and everything to do with how I have to get by in this life.

Later, while my daughter is at school, I deal with a seemingly endless stream of household chores: washing, drying, cleaning, tidying, considering what we might have for supper. I ponder whether I must go out shopping. I have developed an intense dislike for the repetitions of domestic needs, yet I cannot seem to get away from them: carpets that need vacuuming, sheets to change, taps that leak, the plug that resists pulling and then slips from my fingers to roll uselessly on the floor.

The tasks to which I lend my attention feel pointless: endless petty patterns serving only to feed, wash, wipe, and mend. Feeling guilty for not being happily domestic, I hate hating it. But I have begun by inches to accept that small daily needs can serve, by their smallness, to mend a mind.

My mind is not broken — it never has been — yet my desires are so achingly wide and breathlessly high and my reach for them seems so futile, that sometimes only the basics can help, like making a cup of chicory coffee or starting another load of washing.

With an effort today to make a change of something, I choose a piece of music to keep me company, some of the Bach organ music I adore. Every time I hear this music, a picture of my father comes to mind, and I thank him fervently for making me sit and listen to these recordings when I was six years old. I have a date with Joh Seb Bach in heaven. When I meet this stout, wig-clad gentleman who speaks a clipped Thuringian German — which of course, I will understand perfectly — I will sit quietly beside him while he plays the spinet. I will tell him how much the music he left behind helped me to feel loved, to feel bliss and peace.

While throbbing, intimate threads of music build and recede like breathing, my mind flits uneasily to the past, wondering how to place on the page a reflection of my struggles, so that others can understand why it is that, despite my health, an apparently easy life running in straight lines without the complications of teenage pregnancy, divorce, or poverty, I still often wish I was someone else.

There are two women inside me. My first is the Fran who walks "in the public" and whom you think you understand. She is Seline's mom, who sorts her school bag and removes apple cores when they start to decompose, who cleans some of the clothes left lying around her bedroom floor. She is Eddie's wife, who dutifully turns up to school plays and parents' conferences (the thin, sloping head-teacher allows her considerable latitude in lateness for appointments).

This is the Fran who is met with smiles and "How are you?" and who has learned to answer dishonestly, for after all, some people have real hassle going on in their lives.

Should you look a little closer — though who among our friends looks really close? — you might notice what I don't talk about. With girlfriends I never mention sex, though I am happy to let them talk. Carefully, I allow them to overlook the fact that my contributions to conversations are not about me.

I know I am pretending. I pretend that I live a life like everybody else's. I pretend that my upbringing was straightforward; that my school days were filled with games, sports, girlish confidences, lipstick, love, and drama; that any time I want a job I can just go and get one; and that I have a sex life that is fairly normal.

By pretending, I gift myself the appearance of a normal life, and I begin to believe that a normal life is what I have achieved. So part of me feels good, happy, ordinary. The rest is often angry, antisocial, and unhappy. Anger comes in surges, sweeping painfully through my head, throbbing behind my eyes. I have an energy that flares dangerously, or lies limp and lost, like a pile of gray ash, exhausted.

Perhaps one day, standing beneath the unfurling crown of a vast tree in the rain, I may become friends with the water pelting across my shoulders. I might even melt and vanish. For a bright second or two, this bone-tired body would be weightless, and I would feel myself soaring.

CHAPTER 2

A deep breath, and it all begins. A deep sigh, some loving impregnation, and voila! I am on my way. The healers and angel talkers I consult later say, "Your soul made a choice to come into this world as you did." Some of the books I have read mention karmic debts, wheels and roundabouts, cause and effect. These answers strike chords within, and in my dreams, I get some replies to anguished questions: vivid colored slates of meaning sent for me to read; shapes and puns. So now I can almost accept. On waking each morning, remnants of the old sorrow stir uneasily in my chest. Unless I push them firmly to one side, ancient voices may come creeping, repeating, "Why me?"

I am a mere slip of a girl, a forty-something mother, yet each dawning day feels etched into my skin, and my sorrow for all the times when I have lived less than gently with myself and less than happily, pushes down over my shoulders. My face appears youthfully misleading, framed with abundant dark hair trying to lift into curls. I have fair skin and a smile that charms anyone who comes up close, until I fall or stagger awkwardly. No one seems to want to hang too near after that, in case my bumps and the few glimpses of caress I venture turn to clutching, revealing deeper needs.

How does anything start? Nobody is perfect. I am Fran, born on the second of January, a stupid birth date that Mum often overlooked. Each turn of the year the question would surface, "What on earth have I forgotten?" and rest uncomfortably between her shoulder blades. "Oh, for God's sake! The twins' birthday!" And on the fourth or thereabouts, when we had regained some enthusiasm for parties, there would be presents rescued from around the house and wrapped afresh. My mother is a genius at improvisation. I make light of this fate, the chance that gave my sister and me as a New Year's present to a woman who already had two children under four years old.

Mum has not spoken to me directly about the night before I was born. Like many of her contemporaries, she does not talk openly of what has gone before, but rather in apologetic snatches when she thinks no one is listening. My father will not speak of things long past. He must think, by now, that I know.

So perhaps they will excuse me if I ad lib and suggest that my mother would have been feeling tired after celebrating Christmas with the time-honored formality of most well-heeled Europeans living in the tropics: endless, rather pointless parties fuelled by locally brewed alcohol or an unreliable supply of imported gin. Crates of soft drinks found at the local markets were a particular help, as anything not obtained nearby had to be freighted in from Europe — medicines, alcohol, candles, matches, clothes, and food — and a container of goods could take many months to arrive, transported first by sea to the west coast of Africa and then up the wide Congo River to Kinshasa. Even so, hot on the heels of Santa and his reindeer, yesterday's New Year blowout fell on a Friday, offering a perfect excuse for yet another "do," the night before my sister and I made our appearance.

In the golden glow of dozens of lights strung artfully under the eaves of the terrace, strangers would have been lounging, their faces dimly lit — assuming the generator was working. When the power failed, flickering candles lit the pathways.

Raucous celebrations disguised a constant fear: The Belgian Congo during the 1960s was a powder keg of intrigue and clandestine assassinations. Reckless alliances were hatched among careless guests and visitors who spent evenings hovering anxiously on the fringes of parties or getting drunk poolside. The hostess of this party would rather have been taking a well-earned rest in a cool bath, alone and peaceful.

Having left school at the top of her class, Estelle pursued medical studies with distinction before giving them up to marry Kristof. It seemed very romantic at the time, but on discovering that her husband, newly recruited to the Belgian diplomatic corps, was being sent to the Congo, she wept: If a white man had any desire to die young, a posting there in the midst of a simmering rebellion would shorten his odds considerably; and if he was Belgian, to write his will before he set off was sensible, no matter his age.

But against the odds, Kristof Freyerling and his wife put down shy roots in the deep, welcoming African soil. And despite their northern habits, the seductive brooding power of Africa cast its spell over them.

Beyond the warm cocoon of flickering lights, in the deep shadows of night, frogs and toads croaked by the pool. Dogs howled at the moon, while in the humming darkness, tree dwellers crept on silent tiptoe among swaying branches. In this vast continent of dripping tropical forests, surging rivers, and blazing skies, nights are deep velvet blue, richly scented with the sweet fragrances of wide open flowers wilting softly, their scents enticing a sonorous assortment of winged visitors.


(Continues...)

Excerpted from Trapped by Fran Macilvey. Copyright © 2014 Ann Forsyth. Excerpted by permission of Skyhorse Publishing.
All rights reserved. No part of this excerpt may be reproduced or reprinted without permission in writing from the publisher.
Excerpts are provided by Dial-A-Book Inc. solely for the personal use of visitors to this web site.

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Trapped: My Life with Cerebral Palsy 5 out of 5 based on 0 ratings. 2 reviews.
Anonymous More than 1 year ago
Fran's story is a down to earth description of living with the physical and mental aspects of cerebral palsy. Through her I have gained a humble appreciation of the courage and stamina people have to employ in this and similar situations in order to survive, let alone thrive. To read how Fran struggled with, then overcame, her demons is one of the most uplifting stories I have read. She shows that to aspire to and achieve the ordinary life most of us take for granted is a triumph. Congratulations, Fran, and thank you for sharing your life, your struggle and victory with us!
crescentkat4 More than 1 year ago
Fran Macilvey has written a poignant and revealing book about her life with Cerebral Palsy. Fran tells her story with raw emotion and honesty. She writes about her difficult birth, struggling to fit in and be accepted, perseverance, her successes and her dark moments. This book will make you laugh and make you cry. Hopefully it will also make you think about how we treat and value each other, disabled or not. Thank you for sharing your life with us, Fran.