Finding a Voice

by Kim Hood

  When Chris had gone home from the hospital, before he knew he was going to get his equipment, they had made the same mistake I had – thinking to use symbols to help him communicate. He had refused of course. The next time someone sat down with our system he had given them an ‘earful’ – an even longer ‘text’ than the police officer had gotten.

  It was the first thing I was shown when I visited Chris at his house. Alison had written it down on card – with corrected spelling and grammar – and gotten it laminated, so that any new people would know how he felt.

  Don’t show me symbols. I won’t use them. I HATE using the picture exchange symbols. When I was eight I picked a car symbol. The teacher asked ‘Did I want a car ride? Did I want to go home?’ I WANTED to say I had seen the coolest 1960s Ford Mustang that morning, but I wasn’t sure if it was a ’68 or ’69 – could she show me a book where I could find out? The day I can say this with a symbol is the day I’ll use them.

  True to our deal, I had spent more time at Chris’s house, and while I still thought it wasn’t a place I would want to live, I was starting to see that Chris didn’t mind it as much as I would have.

  ‘Do you want to watch this channel, Chris?’ Mary had asked after dinner the last time I had been over. She had wheeled him over to his routine spot by the television. When he had indicated ‘no’, she had flicked through nearly twenty more, with Chris saying ‘no’ to all of them, before I had interrupted her.

  ‘Maybe, Chris, do you want to do something else?’ I had asked, and he had indicated ‘yes’. ‘I’ll get your computer and you can tell Mary what you want.’

  Mary’s slightly impatient sigh gave away just how happy she was to oblige Chris in the middle of a busy evening where kids needed to be bathed, lunches had to be readied for the next day, and medications needed to be administered. Some things were unlikely to change.

  Still, the fact was that Chris needed people who could take care of all those kinds of needs. I had learned the hard way just how complicated his physical needs were. Chris had helped me understand how he felt one day at lunch, when I half jokingly criticised his home life.

  ‘Any great conversations last night or was it the cartoon channel as usual?’ I had asked.

  He had frowned at me and then spent ages on his computer writing something, not pointing his eyes to the ‘speak’ icon until he was finished.

  ‘It’s not fair, Jo. I feel safe home. My body, it’s not easy. They know without asking what makes me more comfortable. Even you don’t know that,’ Chris’s electronic voice, several versions of voices ago, had spoken.

  Plus, I could see that his home staff did really care about him. They tolerated me hanging out and giving hints about how to treat him didn’t they? I had even been invited to go to Chris’s next group home planning meeting, which apparently was about discussing what things he might want to do or plan for in the next six months. It would be the first meeting where he would actually be able to tell everyone what he wanted.

  The teacher came into class and had us take out the novel we were reading. Chris was joining the class when we were in the middle of a book, but I had prepared him for that as well, with John’s help. He had an e-format of the novel loaded on his computer, so that he could read it without anyone needing to turn the pages for him. He had read the whole thing already, even though he only had to read the first half.

  ‘Okay, so, Jason, will you pick up reading the first page of chapter eight please,’ the teacher said.

  I tried to pay attention, but I had already read this chapter too. My mind drifted as Jason read. I smiled to myself, thinking back to Freddie, Mom’s community nurse, coming by the night before.

  ‘Hello!’ he had called out as he knocked and then bounced into the house without being invited. ‘How are my favourite girls?’

  He always greeted us like this. I had come into the kitchen, just to see what he was wearing. I had never met someone with so many clothes, all of them brightly coloured and slightly wacky. Yesterday he had had on a pair of red flared pants and a matching red suit jacket. The topper was his purple bow tie, atop his only plain piece of clothing, his white shirt.

  Freddie had started to come by our house when I was still in the wheelchair. His weird exterior had immediately put Mom at ease, and his easygoing sense of humour could soften even her most intense days. Usually he came by three times a week, but he had assured us both that he would come over more often if Mom hit a rough patch.

  ‘This is how it works, girlfriends,’ he had explained on his first visit, snapping his long, brown fingers. ‘My job is to bring the sunshine when the clouds get thick. How much sunshine you need, depends on how dark the sky is.’

  Yesterday could have been one of the really dark days. I had come home to find Mom still in bed. Usually I would have spent the evening alternating between trying not to disturb her and worrying that I should be getting her up. Instead, I had just called Freddie and he had come over an hour later.

  ‘So where is that mother of yours?’ Freddie had mocked. ‘Shall I kick her lazy ass out of the bed?’ He had knocked on her bedroom door and then waltzed in.

  And I had stayed right out of it. I hadn’t worried though. For some reason, Mom tolerated Freddie telling her what to do, when she needed it, where she would have gone ballistic if anyone else had attempted to do the same.

  They both had emerged in the kitchen, Mom kind of groggy and Freddie full of life.

  ‘Now you sit down here, my dear,’ he had said to Mom, ‘and Jo and I are going to rustle up some dinner. I’m inviting myself over; it’s the only way a poor overworked civil servant like myself is going to get a break tonight.’

  So we had ended up having dinner together, Freddie managing in his way to make us all laugh by the time he had left two hours later. It wasn’t perfect, it was never going to be perfect, but it was going to be interesting and maybe that was better.

  ‘Jo, can you pick up where Jason left off?’ the teacher asked.

  I tried to skim the page to find where we were. I looked over at Chris who had the novel up on his screen. He minimised it and then wrote something quickly.

  ‘Page 103,’ his voice said.

  A few kids giggled, and the teacher opened his eyes wide in surprise. I smiled at Chris in appreciation and then turned the page in my book to begin reading.

  It had taken awhile for Chris to figure out how to use the equipment that John set up for him. At first, it took him much longer to say anything, and he would get tired and stop using it altogether. John kept coming in to school every few days though, tweaking his eye-controlled mouse, and helping him to figure out short cuts. The more John helped him, the more he was determined to practise until it worked. He still made lots of mistakes, and he was still asking for improvements, but every day his ‘tech’ was giving him more of a voice.

  I would remember forever the first full sentences that Chris had spoken to me with his new voice. I had come in to have lunch with him, struggling to pull out a chair so I could sit down and set aside the crutches. Chris had just finished a tutorial session with John.

  ‘He’s dying to tell you something, Jo,’ Florence had said. ‘No one else apparently warrants a word until he speaks to you first.’

  ‘Okay, go ahead, Chris,’ I had encouraged, excited to finally hear Chris out loud.

  He had taken a minute or so to position the cursor over the speak icon and so I had jumped a bit when the voice started to speak.

  ‘Thank you for my voice, Jo. I hope you will be my friend for a long time because I will have a lot to say to you. My first thing to say is, please, please, no more spontaneous trips. I was never in a river before and I don’t want to go again.’

  I hadn’t known that you could laugh and cry at the same time before that moment. The thing I didn’t say that day, but I will yet, is Thank you for my voice, Chris. I’m still finding it, but Chris helps me every day. See, my voice is hidden in the things I don’t say – and Chris h
as known that from the beginning.

  I had felt I knew Chris before I ever heard him speak, but now, a couple of months later, I knew there was so much more of him to get to know. He was imagining so much for himself. This English class was only the beginning. He would have to prove himself again and again, but I knew he was stubborn enough to take on that challenge.

  The class was over now, and so I got up to put Chris’s equipment away, before our slow hobble back to the SE wing.

  When I looked up from unplugging his computer, there were three girls standing in a group, a couple of desks away. I had sat in class with them every week since September, but I had never really spoken to any of them. I self-consciously continued to put Chris’s computer in its case and slung it over the push bars of his chair.

  There was some whispering and one of them stood forward as I went to back Chris out of the tight space his chair was in.

  ‘Excuse me,’ she said shyly.

  ‘Yes?’ I asked.

  ‘We were just wondering,’ she continued, ‘if it would be all right to say hi to him. I mean, the computer thing is so cool …’

  I looked at Chris. His smile spoke louder than words.

  ‘Sure,’ I invited. ‘Meet my friend Chris.’

  I never set out to write a book dealing with ‘issues’; usually when I begin to write it’s because imaginary people in my head won’t stop talking to me – but I don’t really know them when I start to tell their stories. So I didn’t know what this story was about when I started to write it. I just knew that Jo was unhappy and that I wanted her to get happy. Chris came along after and, to be honest, he was a bit of a surprise.

  Though Jo and Chris, and the story they told me, were what compelled me to write the book, there are some definite themes in Finding a Voice. You might be interested to find out how I know about some of these themes and why I think they are important. I’ll try to answer.

  ON NOT FITTING IN

  Even though I didn’t have any of the challenges Jo faced in her home, I was a kid who never fit – at least that’s how I felt. Like Jo, I spent a lot of lunch hours alone, wishing with all of my might that I could figure out how to be ‘normal’. I was shy and awkward and odd. Guess what? I’m still odd. I still don’t like small talk all that much. I can be an introvert at times. But I’m okay with that. I don’t even want to be normal any more. And the truth is, I’m not sure there is a normal. Certainly my closest friends are not normal – but I would say we are all interesting!

  If you feel at all like Jo does (and I did), please believe me when I say: IT WILL GET BETTER. Really, it will. I’m not sure exactly how, or exactly when, but hang in there.

  And if you aren’t like Jo, and you’re surrounded by friends and happy as a lark every day at school, will you look out for the Jos and Kims of the world, please? You might find that you like them if you give them a chance.

  ON DISABILITY

  Though Chris is fictional, his story was inspired by a real-life event.

  When I was nineteen I took a summer job working as a group leader at a camp for kids with disabilities. One of my first groups of campers included a boy who had no use of his arms or legs and couldn’t talk. Not much information was given to us about him. I assumed he couldn’t understand much.

  Each morning there was a breakfast buffet, with lots of choices, but every morning I chose pancakes for this boy, because I thought they would be easiest to swallow and who doesn’t like pancakes? Every morning he kept kicking me – until I figured out that he didn’t like pancakes. I’ve now worked with children and adults with various challenges for twenty-five years – and I’ve tried never to forget that lesson. DON’T ASSUME. It turns out the boy ran a shop in the hospital where he lived. He was better at math than I’ll ever be. He usually used a communication device, but he didn’t have it with him at camp as it was being repaired.

  Everyone has a story that you can’t possibly appreciate and understand unless you take the time to know them. DON’T ASSUME. Get to know someone different from you. You might find you have more in common than you think.

  ON MENTAL ILLNESS

  Like Jo’s mum, most of the people with mental illness I have supported have been interesting, complicated people. Mental illness is an area that has always fascinated me, probably because people’s experiences are more often different than they are the same. For some people, like Jo’s mum, there is something amiss that medication may help alleviate, but IT’S COMPLICATED. In one way or another life is COMPLICATED for everyone isn’t it? The most important thing is to accept people for who they are.

  ON NON-TRADITIONAL FAMILIES

  I guess you could say I grew up in a traditional family. I had a mum and a dad and two sisters (still do). We all lived together. Normal right?

  Now my family includes my partner, my daughter and my stepdaughter who lives on another continent with her mum. I know kids with one parent, no parents, two parents of the same gender. Normal right?

  As a grownup (well as grown up as I’m going to get, which isn’t that grown up) I seem to have a lot of conversations about family. As different as families are, everyone experiences good and bad within their own. Whatever your experience, there is someone out there who relates. THERE IS NO NORMAL, but underneath it all we all care about a lot of the same things.

  These themes are ones that have woven their way through my life and so it isn’t surprising that they emerged in Finding a Voice. As the saying goes, ‘write what you know’ and I guess I did just that.

  You can find me at kimhood.com.

  About the Author

  KIM HOOD grew up in British Columbia, Canada. After earning degrees in psychology, history and education, she wandered through a few countries before making the west coast of Ireland home.

  Her eclectic work experience in education, therapy and community services has presented endless opportunity to observe a world of interesting characters. She has always had a passion for trying to understand life from the perspective of those on the fringes of society.

  Finding A Voice is Kim’s first novel.

  Copyright

  This eBook edition first published 2014 by

  The O’Brien Press Ltd,

  12 Terenure Road East,

  Rathgar, Dublin 6,

  Ireland.

  Tel: +353 1 4923333;

  Fax: +353 1 4922777

  E-mail: books@obrien.ie.

  Website: www.obrien.ie

  First published 2014

  eBook ISBN: 978–1–84717–708–7

  Text © copyright Kim Hood 2014

  Copyright for typesetting, layout, editing, design © The O’Brien Press Ltd

  All rights reserved. No part of this publication may be reproduced or utilised in any form or by any means, electronic or mechanical, including photocopying, recording or in any information storageand retrieval system, without permission in writing from the publisher.

  Cover image courtesy of iStockphoto

  The O’Brien Press receives assistance from