Heidi Redl - A Quiet Roar: Living with Multiple Sclerosis

A Quiet Roar

Copyright 2017 Heidi Redl

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 prior permission of the publisher or, in the case of photocopying or other reprographic copying, a licence from Access Copyright, the Canadian Copyright Licensing Agency, www.accesscopyright.ca ,

1-800-893-5777, info@accesscopyright.ca .

Caitlin Press Inc.

8100 Alderwood Road, Halfmoon Bay, BC V0N 1Y1

www.caitlin-press.com

Text and cover design by Vici Johnstone

Printed in Canada

Caitlin Press Inc. acknowledges financial support from the Government of Canada and the Canada Council for the Arts, and the Province of British Columbia through the British Columbia Arts Council and the Book Publishers Tax Credit.

Library and Archives Canada Cataloguing in Publication

Redl, Heidi, 1962-, author

A quiet roar : living with multiple sclerosis / Heidi Redl.

ISBN 978-1-987915-37-2 (softcover)

1. Redl, Heidi, 1962-. 2. Multiple sclerosisPatientsCanadaBiography. I. Title.

RC377.R43 2017 362.1968340092 C2016-907719-5

Living with Multiple Sclerosis

Heidi Redl

Caitlin Press

This book is dedicated to my children: Ben, Sam and Lexie. It is also dedicated to all the people who are fighting MS right along with me.

When you come to a fork in the road, take it.

The highway sloped down and curved gently to the right when I heard myself break the silence in the car. If its a brain tumour and its removal would mean I become a vegetable, I dont want it removed. Id rather die than be a vegetable.

Lets just take it one step at a time and see what the doc says, Tom answered calmly. Then he added, I get where youre coming from, though.

It was 2004. My husband Tom and I were driving down to Kamloops from our ranch home in Miocene for an appointment with a neurologist. It was a beautiful May day and through the car windows I could see thickly treed hills with patches of rolling grassland on their sides and in meadows at their feet, the same grassland patches I used to ride my horse Lucky over. I hadnt been riding for more than a year but I still dreamt and even daydreamt about riding, and today an imaginary black horse galloped along beside our car, racing over the hills and fields in the sunshine with me clinging tightly to its back. My daydream world was quite different from my reality. The past year had actually been spent searching for answers to the question of why I suddenly couldnt walk with a normal gait.

My left leg dragged and my left foot dropped, until I would trip over my own toes. Added to that, I was always exhausted.

It will be better to know what the problem is, I said, but I didnt know if I really believed that.

Tom nodded in agreement. It will be good to know what were dealing with.

Mile after mile flowed by. On both sides of the car, summer was slowly coming to the Cariboo, our area of BC. While Tom eyed up the hayfields and wondered aloud when the first cut would happen, I looked at the same hayfields with a rather more jaundiced eye and wondered quietly if I would be alive to see another harvest.

We arrived in Kamloops and went together to a floor in the hospital where I would undergo preliminary tests before my appointment with the neurologist. The tests were unpleasant. A nurse attached electrodes to my feet. The sharp stings when they fired were not nearly as hard to stand as the nurse herself, who was obnoxiously cheerful. She insisted on telling us about her horses and her lovely horseback rides. It was as if she was rubbing salt in a wound. Riding horses had been impossible to do for the last year. Maybe now it was no longer possible, forever.

Everything is normal here, the nurse chirped with a smile, tugging off the electrodes. I sensed right away that this was not good news. If my nerves in my legs are normal, I knew, that meant the problem was in my brain.

When the nurse finally left, Tom and I waited in the examining room for the neurologist to come. I still sat on the examining table in the green hospital gown and Tom moved to stand beside me. I think he put his hand on my shoulder but I was too nervous to respond. The room smelled of disinfectant, sharp and noxious. The smell added to the ill feeling swirling through my gut and my head. When he came in, the serious-faced neurologist ran through some more tests with me: touching my finger to my nose, repeatedly, flexing each finger, and so on, ad nauseum. With each test, I could see the evidence of some sort of brain injury mounting. My left hand didnt move as quickly and surely as my right hand, I stumbled when I walked to the door across the room, and my eyes moved like windshield wipers as they followed Dr. Mosewichs pen across my field of vision, one lagging behind the other as they no longer moved smoothly together.

Finally, when I could not physically do another test without vomiting from fear, Dr. Mosewich sat down on a stool and faced me where I was perched on the edge of the examining table.

What do you think it is? he asked me gently.

I think its multiple sclerosis.

He raised his hands, palms upward, let them drop back in his lap and with a rueful smile said, I dont like to drop bombs on people. I think youre right though. How did you know?

I thought about it. I had actually known for a while. True, I hadnt known the specific name of the disease on my own, but I knew it was something serious that was wrong with me. Since that day, Ive learned that people with multiple sclerosis often know that something is wrong in their bodies for years before the first symptoms show up and usually by the time we get to a neurologist, the diagnosis only confirms what we already knew.

In my case, I had known since the night I dreamt of the airplane crash, more than ten years before. In my dream I was standing on the road by Rose Lake on a brilliantly sunny day, looking up the hill when a large white airplane emblazoned with red letters spelling I AM roared through the blue, blue sky over the treetops and then crashed into the crest of the hill. I turned to the dark green house behind me and saw a fat, old, grey-haired woman sitting in the basement eating cherry pastries. Later, still disturbed by the vividness of the dream and doing some psychological reading and research, I learned that the basement of a house signifies subconsciousness and all people you meet in your dreams are parts of your own personality. The fat, old woman sitting in the basement was me, stuffing myself with the sweets I love in defiance of the disaster unfolding in front of me. I AM signified my ego, and my ego, my sense of myself, was crashing with the advent of holes, or scleroses, appearing at random in my brain.

I had gotten the actual name multiple sclerosis from a physiotherapist who watched me closely while I walked down her hallway on one of my desperate searches for help back in Williams Lake.

Thats MS, shed said. My sister has it and she walks like you do, dragging the left leg. I know youre not supposed to shoot the messenger but nevertheless, I havent been back to her practice since then. I havent been able to forgive her for telling me I have MS.