Left of Tomorrow

by Wendy J. Lyons

  Published in Australia by Sid Harta Publishers Pty Ltd,

  ABN: 46 119 415 842

  23 Stirling Crescent, Glen Waverley, Victoria 3150 Australia

  Telephone: +61 3 9560 9920, Facsimile: +61 3 9545 1742

  E-mail: author@sidharta.com.au

  First published in Australia 2010

  This edition published 2010

  Copyright © Wendy J. Lyons 2010 Cover design: Alli Spoor

  Typesetting: Alli Spoor and Chameleon Print Design The right of Wendy J. Lyons to be identified as the Author of the Work has been asserted in accordance with the Copyright, Designs and Patents Act 1988.

  The information in this book is based on the author’s personal experiences and opinions. The publisher specifically disclaims responsibility for any adverse consequences which may result from use of the information contained herein.

  All rights reserved. No part of this publication may be reproduced, stored in a retrieval system, or transmitted, in any form or by any means without the prior written permission of the publisher, nor be otherwise circulated in any form of binding or cover other than that in which it is published and without a similar condition being imposed on the subsequent purchaser.

  Lyons, Wendy J.

  Left of Tomorrow – A Journey of Stroke Recovery

  ISBN: 978-1-921642-45-6

  Digital Editions Published By

  Port Campbell Press

  www.portcampbellpress.com.au

  ISBN 9781877006418 (Epub)

  Acknowledgements

  This account would never have been attempted or completed without the help and assistance from some very special people in my life. I do not have enough words to express my appreciation and how much I owe them all.

  To Alli our youngest daughter, whose encouragement, enthusiasm and advice kept me on the right track. I quickly discovered with her help that I could express myself on paper and share my story.

  To my daughter Rae, whose generous offer to transcribe my scribbles into print, I immediately accepted. Unable to feel the pen in my hand or move my wrist, my writing had deteriorated considerably since the stroke. I expressed my doubts on her ability, but she dismissed my concerns with a laugh.

  ‘I have spent twelve long years translating lawyers handwriting, there cannot be anything worse than that,’ she countered. Well I tested her skills to the limit and there were not many words that she was unable to decipher.

  Thank you Rae, thank you Alli from the bottom of my heart.

  To my husband Graham, who took over the typing of the next installment of memories and reflections. Then with Alli’s patient and willing tuition I became computer literate and was able to type the second half of the book all by myself.

  To Nola, my good friend from Stroke Support Group, who was my first mentor and gentle critic, and for her positive and intelligent comments on my work.

  To all my other dear friends I met through the Croydon Stroke Group who helped me on my journey of recovery.

  Finally to the rest of my family and friends whose support and interest in my ramblings kept me from flagging and gave me the determination to complete this task with humour and a light heart.

  Thank you all so much,

  Forward

  Left of Tomorrow is a journey of life and of hope. The journey shared by the author, Wendy Lyons, is an inspirational response to the challenge of stroke as well as a celebration of life.

  I believe we can all learn and benefit from it – stroke survivors, family and carers, and health professionals alike. The passion, insight and perseverance that the author brings to the challenges faced is remarkable and gives hope and direction to others who may experience similar challenges. The take home message ‘…never give up or settle for anything less than our very best selves’ is one we should all keep in mind and have as a common goal.

  For the stroke survivor, the author highlights that there is choice in how we might respond to the challenge of stroke: that we have to embrace the new and find strategies to make the best of it.

  A number of strategies are identified, such as humour, positive thinking, problem solving and resolve. These are creatively and humorously played out within the author’s journey.

  The book also offers constructive insight for health professionals to view how their comments and actions are perceived and how they might best work with stroke survivors towards the common goal of ‘achieving the best’, in a respectful and productive manner. Self-management approaches are obviously critical to this. The last section ‘brush strokes’ exemplifies what can be achieved when everyone works together towards a common goal!

  The author insightfully captures the many dimensions of stroke through the titles and definitions of each section of the book. I think this helps us all to reflect on the multidimensionality of stroke and how we might choose to respond to it. It opens new perspectives and hope that the stroke survivor may not have been able to contemplate early after the stroke.

  The marked changes in sensation that the author experienced following stroke are hidden from view, and as such are often not appreciated by family or health professionals. The ‘unseen’ challenges of getting out of bed, reaching for an object, or knowing how to move in water when you can’t feel where half your body is, are difficult, if not impossible, to imagine. The author’s ability to relay this in a sensitive yet impactful way is critical if we as health professionals and family are able to step back, learn and work together to address the challenges in a constructive manner. To my knowledge this is one of the first books to address this hidden problem.

  Finally, the language and the sights and sounds portrayed help the reader to experience the journey with the author, as well as capture how they might feel in a similar situation. The author instils hope and provides an example by which others may also ‘take charge’ of their own recovery. It is a gift to be able to make such a strong connection.

  I hope many others get the opportunity to benefit from sharing this journey.

  Leeanne Carey, PhD

  Head, Division of Neurorehabilitation and Recovery National Stroke Research Institute, Australia

  Introduction

  We accept our lives for what they are and consider it is our power alone that has sculpted ourselves so far. Then a lightning bolt strikes us and suddenly all the parameters change. What we once were and what our lifestyles were are no longer relevant. Now we march to the sound of a different drumbeat. There are new boundaries to face and we must mould ourselves into these limits. It comes as a great shock when suddenly from one minute to the next we are who we are, and then we are not.

  For all of those who have suffered a stroke, there is no choice about this condition. However, we do have a choice as to how we face it and live with it. We can accept it as an opportunity to discover new aspects of our personalities that now have the chance to express themselves. We need to say goodbye to the old self and let it go, accepting regretfully that it is no longer appropriate and embrace the new with all the promise of a greater, better person through this adversity.

  My bolt of lightning arrived without warning on the eighth day of August, 2000.

  I have written this record of my journey through recovery to enlighten, encourage and uplift others who identify with me that there is life after stroke, and with optimism and a sense of humour, life can still be a ball.

  Part 1

  Inward

  Dawn crept silently and persistently into my confined space gradually transforming the mysterious surroundings into something less threatening. The growing light spread over the black and foreboding shadows just beyond my reach and piece by piece and bit by bit they slowly revealed their dark secrets to me.

  I now could see what throughout the
long night I had only felt and heard. My right fore finger was gripped by a shiny white contraption with its long snaking umbilical cord connecting me securely to the apparatus behind my head. A large cuff covered my left upper arm, and every now and then it would pump up itself with a great whoosh, squeezing my arm with a powerful grip. It would hold its pressure for a moment. Then with an audible sigh, expel out the air and deflate itself. A myriad of fine wires draped over me spewing out from the equipment on the wall, each one attached to me by a sticky pad holding its electrode firmly in place.

  I felt like an unfortunate fly caught in a spider’s web, fearfully awaiting my fate. Would I survive this unexpected attack on my life or would I succumb to its elemental forces. I could easily identify with how an astronaut would feel floating in outer space with only his lifelines connecting him to the mother ship and safety. I too was adrift in an unfamiliar and alien environment. Some force greater than my own had thrust me into this nightmarish hellhole. Not only was I pinned down like an insect, I could not move away from all this apparatus even if I had wanted to do so. Steel bars imprisoned me and kept me captive.

  The end of a hospital bed and its attendant paraphernalia slowly materialised in front of me. Through the bars surrounding my space I caught glimpses of other beds, other pieces of equipment. As the weak sunlight filtered through to me I realised I was not alone. The occupant in the bed next to me was still. The only sound I heard from that direction was the hissing and spluttering of the oxygen as it escaped from the sides of his facemask. On the wall opposite my bed I could make out two other hospital beds, and from the activity around them determined that they also contained similar life forms. It was no dream. It was becoming clear to me now. I was a patient in the acute stroke ward of this major hospital in Melbourne.

  The curtains around my neighbour’s bed obscured the rest of the room from my line of sight. However, the sounds pounding on my ears told me that I was in a large ward and each bed’s occupant was suffering from some degree of neurological damage.

  The muffled sounds that had kept me company during the night now intensified once the day shift arrived. There was a cacophony of different noises and the activity increased as each staff member went about their assigned tasks. Three staff moved swiftly as they bumped past my bed and tenderly lifted and turned the man next to me. This figure stretched out on the bed, someone’s husband, father, grandfather, so far away from them all now with just a tenuous hold on life.

  It was interesting to lean back and to reflect on all that was happening around me and to see where I fitted into this scenario. First and foremost, I had to acknowledge that I was alive and that I could still recognize myself. This was who I was; a daughter, a sister, a wife, a mother and a grandmother, quickly approaching my sixtieth birthday.

  Just as the dawn welcomed the new day and a new shift of workers into our room, it also heralded a new beginning for me. During the long hours of the night I had reluctantly said farewell to the old me and today was the first day for the new me to move forward. I could choose how I was going to take the first steps on the path to recovery.

  Slip, slap, slop

  Our ward became busy with the shift of new staff attending to the needs of the other occupants of the ward. Then it was my turn. The sides of the bed were lowered, and I was disconnected from the machines. My internal workings were no longer an item of interest, and I was sent off to the bathroom for a shower and toilet. This was a far greater challenge than I had first thought. Only five steps to the ward door and six more steps past the nurses’ desk and into the bathroom. I knew I could do that, but I had not considered that my right side might have a different agenda. I hopped out of bed left foot leading, happy that I had achieved this much, but where were my right leg and foot and would they, when I located them, actually hold my weight and convey me to the bathroom?

  Staggering like a drunk, and holding on to anything that was more stable than myself, I reached the bathroom and closed the door behind me. I was advised that if I required any assistance all I had to do was press the call button and a staff member would come to my rescue. However, I jumped at the opportunity to be on my own after so much attention and looked forward to enjoying my privacy as I endeavoured to carry out my ablutions.

  I glanced around the room and was pleasantly surprised to find it was quite a generous size for its function. The toilet and washbasin stood side by side in a small alcove and the rest of the room was empty except for a rather wet plastic shower seat. There was no shower stall in place, instead the walls of the room were fully tiled. In the centre of this space a shower rose was installed and its accompanying hot and cold water taps. There was enough room for at least three or four people to stand in front of the shower rose. My first thought was that it must be for communal showering or perhaps it was arranged so the nurses could save time by setting up a production line of their patients. We could all line up on the left and be processed past the shower and moved out towards the right in a continuous line until the task was completed and we were all clean and sweet smelling again. Although, on second thoughts it probably would not work, someone would mess it up, or turn left instead of right and there would be utter chaos.

  The floor of the bathroom sloped down from each wall to a centrally placed drain. I concluded that if I wanted my clothes or towel to remain dry and not become saturated from the spray of water I would need to use the basin or the toilet seat to keep them off the floor. Sitting on the toilet, I discovered I could feel only half the seat with half a backside. My right hand felt like a dead fish flapping about at the end of my arm totally divorced from my mind and following its own stream of consciousness. My right foot seemed more like a solid block of ice, no shape, no form, no feeling. For a person who was incredibly right side dominant it came as quite a shock to discover that not only could I not grab the toilet paper, I could not feel it, if in fact I had captured it at all. Numb hand on numb bottom was a totally useless exercise and suddenly my left hand became an important appendage for the first time in its life.

  Now it was time for the shower. Have I not done this exercise every day for decades more than I wish to remember? All I have to do is go through the same processes as before. Position myself, turn on the taps, left hand only, pick up the soap and set to work. Wrong, my right side cannot feel the water on my skin or its temperature. I must learn to lead with the left, best foot forward, and I had always considered my right side, my best side. Now it is left side, only side. There are no more comparisons. It was like a Charlie Chaplin movie, slapstick comedy at its best or worst.

  I grabbed the soap with my left hand but quickly remembered that this side was dyslexic. I have never been able to comb my hair, do my teeth or put eye make up on with my left hand. I inevitably would brush air, miss mouth and land in eye, not around eye. I transferred the soap to my right hand, images of washing the walls, rather than me, appearing in my mind. Not so, the dead fish hand could not feel the soap and dropped it onto the floor. Here I am in the shower, water splashing everywhere, only one leg to stand on, and the soap has shot from my hand and was half way across the floor. Stagger, hop, stagger and I have the soap again grasped, so I thought, in the most useful hand, when whoosh, away it went again to the other side of the room. I had never known such a persistent piece of soap, so anxious to escape from me. A brand new bar of Sard Wondersoap; the only soap my husband, Graham, had found in the bathroom in its own cardboard container, so useful for eliminating stains and marks on clothing but unwilling to give up its suds to me and cleanse me from this pox.

  The call button looked tempting, and I considered reaching for it, but the picture I presented was best left for the imagination and for my sight only. I was sure that the person who answered my call, would in fact, be able to join with me in seeing the funny rather than the sorry side of the situation. However, just in case I could detect the slightest bit of sympathy in their eyes, I was not ready to risk it by pressing the button. It was better to laug
h alone at my crazy antics than it was to feel sorry for myself and start to cry. I do not know how long it took but at last I had systematically soaped and rinsed myself to a satisfactory degree and turned off the taps.

  A new challenge now presented itself to me. How to dry oneself with a towel and only one functioning side. But holding the towel in my left hand, I grabbed the other end with my teeth and clenching onto it tightly, draped the towel around my right side and across my back. Nodding my head up and down and manipulating the left end of the towel with my good hand I managed to dry myself. Well, at least I no longer felt wet.

  Short one hand

  We never acknowledge how much we take our bodies and their functions and movements for granted until we lose a part of the mechanism. Do we ever consider how many movements are required for each action? Or how much work the brain does to initiate a task?

  I had experience of this in 1994 when I broke my left arm after fighting a stubborn weed in the garden. Neither of us won. As I ended its life, it caused me to fall back onto the path smashing my wrist on the concrete. So I knew there was a limited wardrobe available to the one armed. Zips, belts, buttons were off the list, so today’s effort was tracksuit pants and a loose top.

  But first I needed to tackle the bra. This was definitely not designed by a one-armed man, who needed to wear one. Doing it up at the back was out of the question, although this is the correct method and the shape and design of the bra all work on the procedure. Bend forward, fill the cups, stand up, do it up at the back and the engineering should work. Today I would have to do it up in the front. However, could I actually manage this with my left hand? Twisting it around until it sat where it ought to sit, supporting what it was supposed to, and would I know if I could not feel, if it did or did not do its job?