Shadows on the Ceiling:
a memoir of disability and abuse
By Susan Wheeler
Smashwords Edition
Copyright 2012 Susan D. Wheeler, BSW
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Table of Contents
Chapter 5: Why I Wrote this Book
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Introduction
In Canada, we have June bugs. They’re black and shiny and grow from half an inch to two inches in length. The name is somewhat misleading because I have seen them in July, even late August. They are easy to kill; one squash is all it takes.
The first time I heard the word incest, I mistook it for insect, and the nasty June bug immediately came to mind. It was an innocent mistake. It made sense to me to compare my experience with a squashed June bug. Incest happened to me long before I knew what it was. This is not something an eleven-year-old girl thinks about. At least I hadn’t.
My mother must have foreseen a potential for it affecting my young life, because she made strict rules about when it was safe to talk to my father. It depended on how drunk he was. There was drunk, which meant, “Don’t talk to him, just ignore him so he will go and sleep it off.” There was not drunk enough, which meant he would either be argumentative or feeling sorry for himself. This was the more dangerous phase, because he’d cry and say, “Nobody loves me”. I would sometimes give in and speak to him, even though I promised my mother I would not talk to him, NO matter what. I felt sorry for him. At first, he would be gentle but gradually he would hug and squeeze me too hard, then I’d have to struggle to try to wiggle out of his grip. My mother would intervene and pull him away from me. This ignited terrible physical fights.
She was no match for him - a strong farm worker. She was a woman, a woman with a neuromuscular disability. All hell would break loose. My two older brothers would try to protect her from his rage. I was simply swatted away like a fly. There is nothing more heart wrenching than witnessing someone you love being beaten. Afterward, I would cry myself to sleep wishing I had kept quiet; it was my fault. When would I learn to stay quiet?
Soon after my mother’s death in February, just three days short of three months to be exact, my life changed forever, even more than I ever thought it could. That particular night, a part of me died that was not yet born. Innocence lost, ‘squashed’ and replaced instead by feelings of sheer terror and shame. This is not how a first sexual experience should be; I learned to stay quiet.
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2006
It was a spectacular January day in the Caribbean. The sun’s warmth penetrated my shoulders; in fact, I could feel it burn my skin. Aside from the water slapping against the rocks, all was quiet. There wasn’t a soul around; I was completely alone on the resort’s property as I sat on the main dock in my scooter wheelchair. It was at this dock that hundreds of cruise ship passengers arrived almost daily in small tender boats and were welcomed ashore to the island’s one-day resort. Most days the resort was abuzz with activity from the moment I awoke. Staff arrived early to prepare designated stations along the beach to sell souvenirs, organize water activities, do food preparation and stock two bars. A one-man calypso band could be heard from mid morning to dinnertime. However, today was a ‘free day’, meaning no cruise ship was scheduled to stop.
I was a guest of the resort managers who lived on-site. They left earlier in the day to do errands in town while I stayed behind to enjoy the beach in solitude. They were kind to extend this winter break for me, considering we were only newly acquainted.
The gap between the dock platform and the water varied from five to six feet or maybe more. It would be impossible for me to climb up the dock’s posts from the water with my limited physical strength. Swimming around the long dock to the beach area would also be unachievable. I knew, with no one around to come to my rescue, that if I stepped off the dock it would be the last step I would ever take.
I maneuvered my scooter close to the dock’s edge and stared down into the deep, turquoise water. The sound of the water whooshing against the rocks was hypnotic. I closed my eyes, inhaled the intoxicating, salty, sea air and became mesmerized by the ocean’s gentle rhythm. It was inviting me. One step … just one step. My heart and soul were colliding.
It occurred to me how much inner strength it takes to honor feelings of despair. I decided a few years prior, that I would end my life when my neuromuscular disease advanced to a degree where my personal definition of quality-of-life felt diminished. I equated this choice to be a selfish act of strength on my part. Having made this decision with a clear mind and with the respectful support of those closest to me gave me a sense of comfort. I felt power over that which has always overpowered me. This disease is progressive and has been a life-long companion. It was a genetic gift from my mother who died at the age of 39 when I was 11 years old. Now, at age 48 I can honestly say that I never minded having this disease because it gave me a heart-felt connection to the mother I lost. Oh sure, I am frustrated by the inconveniences and physical limitations that come forth as I age, but overall I embrace the enriching lessons that it affords me. Whenever I am asked, “What’s wrong with you?” I’m not offended because I believe living with Charcot-Marie-Tooth disease is not a wrong way to be in this world, it’s simply a way of being.
At this point I can still walk a short distance, if assisted by someone, while using my cane; zip around on my scooter wheelchair. A breathing ventilator assists me at night enough to restore my ability to breathe and talk unassisted throughout the day. Challenges are certainly ever present, but my quality of life where my disease is concerned is still relatively good. Yet, here I was staring into the ocean wanting to end my life.
It was as if my world was on pause. I felt a sense of peace knowing that I was only a breath away from being reunited with my deceased mother. Just one step off the dock was needed. I gripped my cane, stood up, and held on to my scooter with my left hand. Did I really want to die? Was I ready to let go? Where would I go to, would my mother really be there on the mysterious other side of life? The water whooshed back and forth, back and forth, back and forth. I stood as long as my legs would support me and then sat back down on my scooter.
Leaving life now, like this, would be a selfish act of weakness. How could this be my legacy after the many obstacles I had overcome? Strength is the one word most often ascribed to my character by others, but where was my strength now? What about those who had helped me, those whom I loved?
I thought of Judy. Would she feel that she had failed me? If she did, that would be terribly wrong. I feel privileged to have her support as a psychiatrist; the Canadian health care system has served me well in this regard. But after some twenty years together, I seldom thought of her in her professional role. She weaves in and out of my life, always there for me whenever I need her without me having to ask outright. We like each other and there is genuine love between us that stems from our evolving respect for one another. I believe she sees me unlike anyone else despite the shameful secrets. It was with her guidance that I finally grew to understand what it is to feel safe and worthy. Judy sheds light where there is darkness, I trust her above all others. “Bad things happen to good people” she would say. A simple concept in theory but one I continue to grapple with emotionally.
What of Lynne, my mother-like friend? If only her last email wasn’t telling me of her own mother’s death. She was 92 and we expected it soon, but then there was mention of her friend’s suicide as well. If I added to that score, she would say, “Things happen in threes.” Although, after more than twenty-six years I had never heard her say or admit to loving me, I know that she does. Lynne is a doer not a sayer. Why else would she provide the security of a home for me in the country next to hers?
Years ago, I placed Lynne upon the pedestal in my mind where my late mother sits. Not a position of her choosing by any stretch of the imagination. Something about her reflects a similar quality of quiet strength but in a very different way. Lynne is no push over. It was clear to me right from the get go that earning her respect and trust would take some doing and I liked that. I felt we were well matched even though vastly different in every way. And unlike with many others, the presence of my physical disability does not grant me privileges nor impose limitations. Her late husband hired me and I knew at that time, that she did not want me to work and live in her home but I needed the job. When I arrived at the age of twenty-two, she unknowingly taught me a course in the running of a home; schooling that I had missed. With their help and encouragement, I moved on to university a few years later but I was not about to let go of Lynne’s maternal influence in my life. Over the years, we have grown into being family, just the two of us.
Then, there’s my brother Barry. Only fifteen months my senior, he was a gentle boy who grew up to become an even gentler man. We share the same disability and although we traveled down separate paths for a long time, our hearts were never far apart. Addictions helped him to forget some of what he did to help me when we were children, whereas I found no such escape. Since his sobriety, we have become close again. It has been wonderful to watch him over the past few years, work to change his life path. Now recently married, I’m glad he is not alone. He, more than most, would understand what led me to this troubled place today, but his heart would be heavy.
I know this feeling of not wanting to live and yet not wanting to die at the same time, all too well. My life is and has always been a senseless combination of too much and not enough all mixed together. Not enough trust, not enough safety, not enough love. Too much stress, too much pain, too much heartache. Every now and then, these opposites fueled by shameful secrets collide. As a result everything abruptly stops; the busyness, the pretending, the endless trying. My fictitious armor falls away and all I have left is a debilitating burden of silence and shame. Life becomes too much and yet death is not enough. As I thought of Barry, the first time that I felt this despair came flooding back. We were just two young children dealing with the recent death of our mother. It was so long ago, yet there it was, the painful feeling of loss as though it was happening right there and then.
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1969
“Susan!”
“Where are you? Come on … answer me. I know you’re here somewhere!”
Barry continued to shout as he slammed his way through the old barn. He was in the downstairs area where our few cows could come in for shelter and food. It was dusk outside and getting harder to see in the barn.
He walked around outside of the barn and rolled back the large sliding door. Rays of what remained of the daylight entered the barn along with his small, 12 year-old boy frame. He looked even smaller from my vantage point high up on the barn’s beam by the ceiling.
“Suz are you in here? Come on!” His impatience was evident.
“Up here. Look up.” I yelled reluctantly.
Barry spun around, cupped his hands over his eyes and looked upward toward the sound of my voice.
“You dummy! What are you doing up there? Get down!”
“I can’t. I’m too scared” I replied trembling.
“Well you got up there, just climb down the ladder!” He scolded.
“I can’t move.” It was the truth.
“Okay, okay I’m commin’!
…stupid girl.” He mumbled and swore as he climbed the wooden rungs of the ladder.
This large section of the barn was not used anymore except when we played there. Along the back section there was a second floor where hay would be stored. There were two ladders; both were affixed right next to beams that extended to the top of the barn. The ladder rungs continued past the second floor and ended by connecting to a thick wooden beam that ran across the width of the barn just below the ceiling.
I figured that with no hay or straw to break a fall from the ceiling beam, a small 11-year-old girl and her doll would surely be killed and then taken straight to heaven to be with her mother.
School had ended for the summer and the days without my mom since her death were just too long. I thought this was the only way to go to her and get away from my father and the awful things that he did to me.
I wasn’t exactly sure how falling down would end up taking me up to the sky but getting killed was getting killed and once that happens then God takes over. My mother never liked us to play in this part of the barn. She said it was dangerous and because of the ladders we could easily fall and get killed.
When I climbed up the ladder I needed both hands, so I tucked Muggle, my clown doll, in the front of my shorts and underneath my shirt. It took a long time to climb to the top beam and I was careful not to look down along the way. Once I reached the top of the ladder I sat on the edge of the beam and shinnied myself a little ways away from the ladder.
Looking down made me dizzy. I pulled back in fear. Trying to force myself to have an accident on purpose was harder than I thought. Now I didn’t know what to do. Maybe if I just stayed still somehow the accident would happen by accident. “Let’s count Muggle.” Counting in my head was a good way to not think about whatever scared me.
As time went by I slowly inched my way back toward the ladder and looped my arm around the back of the closest pole between two rungs. I hugged my side against the wood. I felt safe just sitting there holding onto the ladder, but the idea of swinging my foot over and into the rung below the beam so that I could climb down was scary. I counted to one hundred over and over and over again and sang songs in between too.
I was glad when I heard Barry calling out for me.
He reached the top of the ladder and held out his hand.
“Come on!” he yelled like he was talking to the horses.
“Hold the pole and don’t let go and give me your other hand.”
He didn’t seem to be scared at all.
I gave him my hand and he instantly tugged me forward and then quickly leaned his body over top of mine squishing me against the ladder. I grabbed the other pole; now I was holding one with each hand. He reached his hand around the back of the ladder and placed my feet onto the rungs.
We started our descent down the ladder.
Muggle became un-tucked the more I climbed down. I stopped to adjust him. After the fourth time Barry climbed up toward me, snatched him away from me and then tossed him down.
“Stupid doll.” He ranted. “Let’s go!”
I watched with horror as Muggle swirled through the air and landed face down on the wooden floorboards. If the accident had of happened by accident I would be swirling downward with Muggle.
How could Barry be so mean?
I forgot all about being scared and climbed down faster than ever. Once I got to the bottom I raced over to Muggle; he was fine.
I would not have been.
Barry was already half way out the barn door.
“Come on!” he yelled like he was talking to the horses again.
It was dark outside as we entered the back porch of the house but it didn’t matter because no one was waiting for us at home anyway. Much later, my father came home, not-drunk-enough and closed the door behind him when he entered my bedroom.
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The Drawer
Much to my surprise, I was awarded a seat next to the door in the back of my uncle’s car. This was unusual considering that an adult was accompanying my younger cousin Dee and me in the backseat. Then again, a lot about today was unusual.
The cool window felt comforting against my warm face. I pressed my left cheek against the glass and studied the city’s unwelcome snow. It was dirty compared to the white snow that lay in the fields by our farmhouse. The conversation of the other passengers was bothersome; I wished they would stop talking.
We pulled to a stop in the large parking lot. I immediately jumped out and ran ahead not waiting for the others. The entrance had been nicely shoveled and salted, but the door was so heavy that I had to use both hands to pull it open. Once inside, a powerful sweet aroma stung my nostrils. It smelled as though I had just stepped into every garden I had ever been in - all at the same time. A tall gentleman approached and quietly asked, “Can I help you Miss?”
“I’d like to see my mother, Mrs. Wheeler.” I replied earnestly. He looked puzzled, “Is anyone with you?” Directly behind him I noticed a sign next to a doorway with my mother’s name on it. Without answering the man, I leapt toward it.
The doorway was unusually wide; I stepped through hurriedly. The dimly lit room reminded me of my bedroom when my night light glows in the wall plug near my bed. I counted seven sofas but no coffee tables. Where did visitors put teacups and ashtrays I wondered? To my left against the back wall, large bunches of flowers sat on top of tall gold-colored stands. I had never, ever seen so many flowers at once. Immediately I understood why it smelt like many gardens.
Directly in front of the flowers there was a large wooden drawer; at least it looked like a drawer to me. It was the shiniest, dark wood I had ever seen. A long steel handle hung along its side and it had two lids. The one on the left side was raised open. As I moved closer, I saw puffy, white, pillows inside of the drawer; then I saw her.
My mother was lying inside the drawer wearing her favorite pantsuit. I was excited about coming to see her, but all of a sudden, a hot feeling started at my toes and went straight up to my ears, as quickly as it takes to blink. My legs stiffened and my chest felt like someone was squeezing me. I held my breath and stared at her face as I stepped forward.
Directly in front of my mother’s drawer was a padded green stepstool. I later learned that people used this stool to kneel on and pray, but at that moment I found it helpful to stand on, after all, I was small.
She looked lovingly familiar and painfully different at the same time. I was mesmerized. The curl of her thumbs, the dimple in her chin, the diamond ring that I wiggled from side to side on her finger; surely it was my mother, yet her hair was much grayer than the last time I saw her and she was wearing a lot of make-up, even on her hands. Her fingers were the straightest I had ever seen them. Our muscle disease makes our fingers curl up even when we sleep. I reached out and touched her ring. It didn’t wiggle.
My father came and knelt down on the stool, so I stepped off. I didn’t like the fact that he was there, but I knew enough to keep quiet. My grandmother was too upset to stand, so she sat on a sofa nearby, crying. My two bothers had just arrived. Barry was twelve-years-old, a year and a half older than me, and Marshall was fifteen and a half. I had never seen him look so scared. His eyes were stretched so wide I thought his eyeballs might roll right out of his head. Barry, bit his bottom lip and made sure to catch each tear with his tongue.
Dee, my nine-year-old cousin, came and stood next to me; she too was crying. I liked Dee. She was a quiet girl, always kind and fair to play with, not bossy or ever unpleasant. Last Easter, she shared her chocolate bunny’s ears with me. We never got chocolate treats. My mother said a good turkey dinner was enough of a treat. I agreed as long as there was dressing and gravy.
I stared at my mother’s face so she would know that I was there. Maybe she might move or open one of her eyes. I didn’t want to miss it if she did. Several people came forward to look at my mother briefly, but I stayed standing on the green padded stool next to the drawer.
Sometime later, my father came over to me and in a hushed but firm tone said, “You’re making everyone feel bad by standing in front of the coffin. Go sit down, NOW.” Reluctantly, I turned away. I tried lots of seats but settled on the second sofa right smack in the middle, but a little bit to the right. From that position, I could clearly see my mother’s face without stretching and no one would have to know or feel bad.
Glancing around the room, I counted 18 people. They stood together in small groups talking quietly, just like people do in the library, but as far as I could tell no one was reading so I figured there must be a rule about being extra quiet when people are lying in drawers. One of my aunts, from my father’s side of the family, bent over the side of the drawer and kissed my mother. I was so shocked that I heard my own breath make a sucking noise. Dee and I immediately looked at each other. We had been told not to touch her!
Without any words between us, we decided we would kiss her too. Slowly, we made our way toward the drawer and waited until no one was nearby. We both stood on the kneeling stool. I gently touched my mother’s face with my finger first. Her cheek felt cold when I kissed her, not the same as when I kissed her goodnight at home. If only she would wake up!
“Susan, come here,” my father called, so I stepped off the stool and walked over to him. He was standing with a man I had never seen before. Not looking at me directly, my father said, “Susan, this is your mother’s half brother, Doug. He wanted to meet you. Say hello.” I did as I was told. Placing his hand on my shoulder, my mother’s half brother, who I had never heard about before, smiled and said, “Well hello Susan, my goodness, you look just like your mother, Doreen, when she was your age.”
Maybe he did know her. I liked what he said. My aunt, Dee’s mother, who was my mother’s sister, came over to talk with Doug. I returned to the sofa and Dee. A lady who worked at this house came in with more flowers and arranged them on a stand, then walked over to us and asked, “Would you girls like to come and get a drink and cookies?” We nodded our approval. She asked us to wait a moment, walked over to my aunt and I heard her say that she was taking us for a ‘break’.
We followed her down a hallway and past other rooms just like my mother’s. People were crying, talking softly, and standing near their shiny wooden drawers. Once downstairs, the lady in the blue suit showed us where to find the bathroom and the kitchen. “There’s coffee and tea here at all times. Oh, I guess you would like something different” she realized. We nodded. “Well, how about hot chocolate?” Rummaging through the cupboard, she pulled out a can of instant hot chocolate. “Here are the marshmallows and you can have as many as you like, anytime.” Not thinking about what was going on upstairs; I smiled. “Anytime we want?” I asked. Right away, I felt bad for smiling.
“Yes dear and here are the cookies,” she said while pulling out the box. They were the sort of cookies we had on special occasions because they were too expensive for everyday.
Remembering our manners, we thanked her and made hot chocolate for ourselves, with lots of marshmallows. We brought the box of cookies with us into the next room. The air was heavy with cigarette smoke but there were lots of fancy chairs and coffee tables too.
Over the next two days, I spent a fair bit of time in the smoky sitting room. I wanted to be with my mother, even if she was stuck in that drawer, but I didn’t like so many other people being around. I was careful not to stand beside her for too long at one time because I did not want to make anyone sadder than they already were, especially my grandmother.
People said a lot of really stupid things about my mother being in a drawer. Like, “She looks “well” or, “just like she’s sleeping.” Obviously, they had never seen her sleep, otherwise, they would know she likes to lie on her side with one hand tucked under her chin, and she never slept with her glasses on. I wished she had a bigger drawer because I wanted to crawl in beside her and smell her Noxzema face cream, like I did at home.
I never knew what time of day it was while we were there, but altogether this special visit lasted two full days and two evenings too. All the rooms were dark with soft glowing lamps, even downstairs where people went for a break. Sometime during the second day, I overheard a conversation between two of my parent’s friends. Freddy said, “I wonder what will happen to the kids?” Joyce, his wife, who was crying answered. “I can only imagine. I will miss Doreen so much, but you know it really is the only way she would ever get away from him; she knew that too.”
After they went back upstairs, I came out of the kitchen. Sitting in the smoke-filled room, I thought about what they said and I knew it was true too. It had occurred to me that maybe my mother was pretending to be dead, or else, it was someone who looked a lot like her. How could I be sure? Thinking about this made me remember the week before she went into the hospital for the last time.
School had been unusually upsetting for me one day. Our teacher talked about birthmarks and how people can be identified in certain situations by their birthmarks. Most kids had at least one small dark splotchy birthmark somewhere on their body, but not me. My leg muscles are weak, so I was accustomed to being different because of the way I walked. I limp and walk on my tiptoes like the ballerina doll that stands on my jewelry box. My brother Barry and I inherited the same muscle disease that my mother had and kids at school teased us a lot. No one picked me to play on teams in gym class, and now to top it off, I could not find a birthmark anywhere.
When I got home from school, I asked my mother if she had a birthmark. She said that she did and showed me her small, but distinct brown blotch on the back of her thigh. “What about me?” I wailed in frustration. “Check me over; maybe I grew one since I was born?” Laughing, she said, “Trust me honey, I know every inch of you and you don’t have one.” “Great, how are you going to know it’s me if someone tries to fool you?” I asked.
“I’m your mother; no one could ever fool me. Besides, you may not have a birthmark, but not too many people would know that you have a freckle hiding in your left eyebrow.”
With that, I raced into the bathroom to have a look in the mirror. Much to my delight, when I pushed my eyebrow hairs up and over, I discovered that a lone freckle was nicely concealed. I felt better.
I wanted to look in the drawer to see my mother’s leg and her birthmark, and then I’d be absolutely certain it was really her.
The next day, February 26, 1969, was bitterly cold. It was the day I attended my very first funeral, my mother’s. A long black car drove us to a church and later to a cemetery. The cars that followed us had small flags on their hoods, to let other cars on the road know that we were in a sad parade. It took forever to get there, even though we were allowed to go straight through red lights.
Once we arrived at the cemetery, people lined up on either side of my mother’s drawer. The lid was closed tight now and I didn’t like that, but it was better than snow blowing inside on her. Before we left the funeral home we took turns saying goodbye to my mother, then a man shut the lid and took her drawer out to a long car.
Six men carried the drawer from the car and placed it on top of steel poles over a deep hole in the ground. A priest stood and talked for a long time. Snow was piled up everywhere and the cold February wind blew snow in wafts from time to time. My legs were freezing and shaky. I fell down to my knees and placed my hand on Mommy’s drawer, but someone quickly picked me up and passed from person to person down the line away from the grave. I pulled away and ran back up to the front and stool still.
People left right away at the end of the talking because it was so cold. When my uncle took my hand, I looked up at him and pleaded, “I can’t go. Mommy will be cold.” He leaned down and gently said, “Oh no honey, your mother can’t feel anything any more. She’s in heaven, and God will look after her forever. ”
Once seated in the large car again, I was glad for its warmth. I thought about what my uncle said. I believed him, but as soon as the car began to pull away, I wanted to jump out the window and go back.
If Mommy couldn’t feel anymore, then she would never have to be “sick of being sick, or tired of being tired.” She would say that sometimes as a joke. I thought about what I overheard Joyce say; “now no one could hurt her”. Right then and there, I knew that this was what was best for her. She was safe now.
My father was sitting in the front seat talking to the man driving. I looked at him and thought God made a mistake, or maybe he picks only good people for heaven. Either way, I wished it was my father who was in that drawer in the snow, because he was mean when he ‘wasn’t-drunk-enough’. This was a secret that we were not allowed to share with anyone. “You are not to talk about anything that happens within these walls to anyone,” Mom would say. It was a strict rule that my brothers and I obeyed, even though it didn’t make sense. Now that she was in heaven, I figured it would make everyone feel better if I just kept the secret a secret. My brothers must have figured this out too because they never talked about it either. A secret’s a secret.
****
Back to School
Everything changed after the funeral, even at school; starting as soon as the school bus picked Barry and me up on our first morning back. The moment we stepped onto the bus everyone stopped talking. The silence was deafening. No one so much as rattled a lunch bag. The silence lasted for a long time, but slowly kids started to whisper and soon were back to their romping ways. The same thing happened when I entered my classroom. After the announcements, Mr. Geogen my teacher welcomed me back. Everyone was being nice to me and it was weird. The bullyboys didn’t bug me. I was picked for teams in gym class. I was even elected to be the fashion editor of our class newspaper. Everyone felt sorry for me but I knew this sentiment would not last forever. I made the best of these kindnesses, even though it was difficult to keep my mind off my own thoughts.
Everything continued as though nothing important had happened at all. The school bell rang at the same time; snow continued to fall and the newspaper came to our house, even though my mother wasn’t there to read it with her cup of tea after supper. Papers continued to pile up because my father didn’t know how to read. That was another secret.
On occasion, he had to read something for work and called my mother to the barn to help him. The bill paying and paperwork was her job. If my father had to sign something important, we would have to be quiet so he could concentrate. Sometimes, Barry or I would joke when we were playing or doing homework and shout, “Be quiet! I have to write.” Of course, we never did that if our father was home. I guess he couldn’t help it; he said that he left school too early, but I think he just couldn’t learn. It did not seem important to him because he never tried to learn and with my mother’s help, he didn’t need to. Barry did the paperwork for him after she died.
Because of my father’s drinking, I could never be sure what kind of mood he was going to be in when he got home. It depended on how drunk he was. When he wasn’t drinking, he didn’t talk much. Oh, he would answer a question, but he’d never ask any. It didn’t matter to him if I was there or not. He worked hard in horse barns and outside all day, even in the winter, so I figured he was tired a lot. When he did drink, which was most of the time, it woke him up.
Drunkenness had three stages for him. In the first stage, he was talkative and lively with blue sparkly eyes. Sometimes he would shout at the television when he was watching a hockey game as though he was right there in the arena. He would yell, “He scored!” then rush into the kitchen to tell my mother and me which player scored a goal or was fighting … as if we cared. We thought this funny, but at least he enjoyed the game.
Stage two of drunkenness was the bad one. We called this, ‘not drunk enough’. It was clear that he had reached this stage, when he would say sad things, feeling sorry for himself, only to quickly change and start to brag about how great he was. Fights could happen at this stage and my mother made strict rules for us when he came home like this. “Do not talk to your father. Ignore him so he’ll go and sleep it off,” she would say.
Stage 3, the final and best stage was when he was ‘drunk-enough’; he would stagger right past us as though we were invisible and fall asleep on the sofa. It was important not to interrupt this process.
At bedtime, I always felt worried if he was not yet home, because I never knew which stage he would be at when he did arrive. If he came home too soon, he might hurt Mommy. Waking to fighting sounds in the darkness, always made me cry. I was afraid to go downstairs, but I was afraid not to, at the same time. My brothers woke too and seemed to know when it was just a yelling fight and told me to go back to bed. I never did learn to tell the difference.
If we were still awake when he came home, Mom would remind us firmly as soon as we heard his truck pull into the driveway, “Don’t talk to your father no matter what he says”. It was really hard for me to pretend he was not there and if he got to feeling sorry for himself, then I would feel sorry too and make the mistake of talking to him.
Luckily, my mother’s mood was always the same, because she only drank coffee or tea. Our house was always clean, “… spic and span” she would say. We had good suppers, packed lunches with treats. After school, she was right there in the kitchen waiting for me. One thing I knew for certain was, no matter what, she loved me. Whenever I would ask her how much she would say, “…with all my heart and soul.” No one ever hurt me while she was alive, but that soon changed.
****
Muggle
Muggle was my best friend. He was a stuffed brown-and-yellow clown, about fourteen inches tall, with a cone-shaped head and a white pompom on top. His body was soft but his face was hard plastic. Four painted tears rolled down his left cheek. I was the only one that knew he hid all his other tears deep inside. In fact, I could feel them, little clumpy lumps all over his body. I loved Muggle.
My Mom told me we called him Muggle because I could not say Snuggle when I was small. I talked to him every night and he knew all my secrets. Muggle was sad all the time, even though I assured him that I would make sure we’d be all right. My brother said I was too old to play with “stupid dolls” but I never thought of Muggle as a doll. Besides, he lived in my bedroom so no one knew about him. The best thing about Muggle was that he listened to me, even when I talked to him from inside my head while I was at school. He was always, exactly where I left him.
My family moved a lot because my father drank too much and often got fired from his job. There were plenty of rich people who owned horses, so he always got another job. He worked taking care of thoroughbred racehorses, so we usually lived in a farmhouse on a horse farm. I liked living on a farm. The world outside was big and friendly and falling down on grass didn’t hurt nearly as much as falling down on cement. Only sometimes I wished there was another girl for me to play with.
My father’s sister came to stay with us, right after the funeral. That lasted three weeks. She drank just as much beer as my father. The only difference, we got to watch her get drunk and she was never mean. My father drank at the Legion and only came home once he got ‘drunk enough’. This made his sister mad. The night before she went home she screamed at him, “I didn’t come here to be left alone all day and all night too.” I figured we did not count as being good enough company for her and she figured my father should stay home and drink with her.
Nanny, my mother’s mother, used to stay with us whenever Mommy was in the hospital, but I knew she was too sad to come and be with us. It was probably just as well; my father and she despised one another. They tried to hide it from my mother, while she was sick in the hospital. I always wondered if Nanny knew the secret about his meanness because she talked as though she did. I loved Nanny.
Apparently, being the only girl in the family meant that I should now be in charge of cooking and housework. It didn’t seem to matter that I was just eleven and the only thing my mother had taught me to cook was pancakes. I knew it was time to flip them in the frying pan when lots of bubbles appeared.
The first dinner I cooked turned out badly. I followed the meatloaf recipe in my mother’s Betty Crocker Cookbook. In a big bowl I mixed hamburger meat, a cut up onion, breadcrumbs, an egg, and three different spices together with a half of a can of tomato soup. Then I dumped everything into a loaf pan and put it in the oven to bake for an hour at 325 degrees. When I came back to take it out of the oven it was supposed to be cooked. Instead, chunks of meat were swimming around in liquid. I used frozen meat; the recipe did not say it had to be thawed. How was I supposed to know! Things got better with time, but I admit, not much. Cooking wasn’t easy. After our aunt left we did not have regular suppers anymore. When it was up to me, well, we ate a lot of toast with peanut butter, pancakes and scrambled eggs.
****
Being Different
By most people’s standards, I was considered small for my age. In fact I was downright skinny, especially my legs on account of my underdeveloped muscles. Each and every day at school, someone would remind me that my legs were like toothpicks.
Grown-ups often said that I looked like my mother; I liked to hear that. The biggest differences were that she had a dimple on her chin and I did not. My hair was much longer than hers and I kept it out of my eyes with a hair-band.
My mother took me, and sometimes Barry, to see different doctors. We didn’t know what was wrong with us; why we walked differently. My mother was told that she had Poliomyelitis, or polio, as a child, but apparently, it is not a hereditary disease. Either that was not true, or my mother never really had polio. It took a very long time to find out that we did not have polio. Each doctor we saw didn’t know what it was, so we were sent to yet another doctor who might know. This went on and on.
After each doctor visit, my mother would be sad and cry as we drove home. “Let’s not say anything to Nanny,” she would say. Soon after we got home though, she would call and tell Nanny anyway. It seemed like I was always having some sort of x-ray or test. Sometimes I stayed overnight in the hospital. It was very confusing for me; I thought I must be sick, yet overall I felt fine. I could see Mommy was upset about the whole thing so I tried to be brave.
My knees didn’t stretch all the way back and I walked on my tiptoes. Barry and I were the same, yet kind of different too. We ran, played, and rode a bike, but in our own way. Anything he could do, I figured I could do too.
The largest room of the farmhouse we lived in before my mom died was the kitchen. The fridge, stove, sink and counters were on one side of the room and the other side was large and open. The table ran along the wall and opposite that by the window was a lazy-boy chair where my mother read her newspaper. She called it her lazy-lady chair. The kitchen was my very favorite room.
One night after returning from one our doctor visits, I walked through the kitchen to go to the bathroom. “Put your heels down!” my father yelled as I walked by. When I returned, he grabbed my arm. “Come here. Walk from that wall to that wall,” he pointed, “and put your heels down!” I tried to do it but failed. He jumped up almost spilling his beer. “I tried” I quivered. “Wait!” he instructed. He pulled the thick Sears catalogue off the counter. “Here, put this on your head and walk, and don’t let it fall.”
I was confused; he didn’t seem mad, but he was firm. Just like when he tells Marshall how he should play at his hockey games. My mother came in to see what was going on. “Leave her alone.” She said. He put his arm up to block her from me. “Let her try, come on Susan, walk.” With each step the catalogue slid to one side or the other; I caught it with my hands. “Come on! You’re not trying!” Now he was definitely mad. “Put your goddamn heels down!” I dropped the book and ran over to my mother. He ran after me and grabbed my arm.
“Stop it; leave her alone.” My mother yelled at him and grabbed hold of his arm. He shoved her hard and she fell back onto the chair with me in tow. He went back to his beer and sat at the table. “You want her to be a goddamn cripple that no one will want?”
I felt scared and started to cry. He jumped up, retrieved the catalogue, and with his other hand pulled at my arm. I held onto my mother; she was doing her best to block him. “Stop it!” she yelled.
“Come here, suckie cry baby.” He taunted me.
He was so forceful, I flew across the room. He threw the book at me in disgust. My mother had intervened so now he was going after her. He struck her and she fell to the floor. Looking over to me, she pleaded, “Susan, go upstairs!”
She didn’t like me to see her get hurt. I ran to the stairs, “Marshall! Marshall!” I screamed as I raced up the stairs and barged through his bedroom door. He was playing his drums, which is why he couldn’t hear me. From the look on my face, he knew there was trouble; there was an unspoken knowingness between us.
Marshall, who did not share the muscle disease with Barry and me, flew downstairs barely touching them with his feet. I followed. By the time I arrived, Marshall was the target, dodging fists. Barry came in the back door and clued in to what was happening. He ran toward Marshall while I raced toward my mother.
When the three of them neared the back door, my father raised his right fist and shot them a mean look; the boys knew when to back off and this was it. “Bunch of fucking idiots …Get back!” He turned and walked out the door.
The sound of his truck tossing up loose gravel on the driveway assured me that he was gone. My mother slept with me that night because I was petrified to leave her side.
The next day it was business as usual. We went to school and I worried about my mother all day. She seemed fine when I returned. My father showed up for supper and acted as though nothing had happened, just like he always did after he was mean. We ate, with him finishing first as usual, and then going to sleep on the sofa. My mother did the dishes, made a cup of tea and read her newspaper in the lazy-lady chair. Things seemed back to normal, but for how long?
****
A Name
Possibly a year, or two before my mother died, we finally learned the name of the neuromuscular disease that my mother, Barry and I had: Charcot-Marie-Tooth Disease. Dr. Mercifer Rang, from the Hospital for Sick Children, explained to us that it is a progressive disease, meaning it will get worse over time and not better. He said it is a rare disease and that the symptoms are similar to those of Muscular Dystrophy. There is NO cure. Our legs and hands are affected. My mother’s fingers were curled up tight and she did everything that everyone else did, just in her own way. I guessed that Barry and I would eventually get tight fingers too when we grew up. CMT is a disease that can be passed on to children; Marshall was just lucky not to have it. Dr. Rang thought that surgeries could help Barry and I along the way as we grew. He said it was a disease that no one knows much about.
Although we finally had a name for this disease, nothing changed. We continued to see doctors, Mommy cried about it and we kept walking in our wobbly way. I was especially prone to falls and hurt myself often. Mostly I would sprain my ankles or bash my knees. I wasn’t physically strong, but in my head, I thought that I was, because I never felt like I was different. I would plow ahead and get myself into trouble.
There was a short period of time when I was five years old, that we lived in a regular subdivision. While playing in the park one day, I climbed up a tree. Eventually, some kids in the neighborhood had to go and fetch my mother because I couldn’t get down. It seems that my climbing up muscles worked a lot better than my climbing down muscles. Of course, my mother could not come up to get me, so she called the fire department to help get me out of the tree.
Although kids at school usually teased me, I never really minded having this disease because it made me more like my mother and I loved her just the way she was. I was glad Barry had it too because at least we could play together and watch out for each other. Barry was especially good at taking care of me.
In grade two, during recess, I was running a race and one of the bullies, purposely bumped into me and sent me skidding across the pavement. The left side of my face had lots of the skin pulled off. Barry saw what happened and heard my screams. He immediately ran into the school and got a teacher. I was taken to the nurse’s office, my mother was telephoned and then she drove me to the hospital where a doctor scraped bits of pavement and sand out of my face. It was painful.
At school, no one would tell which boy did the deed and no one was admitting to it. Apparently, all the boys got punished, but I’ll bet they didn’t hurt as much as my face. The good part was that I got to stay home from school for a week because it was very important to keep my face clean and let the air at it. Boy was it ugly, especially once it started to scab. The doctor told my mother, that I might need plastic surgery if it did not heal well. That sounded odd to me. On the way home in the car I asked, “Mommy, does that mean half of my face would be plastic like Muggle’s?” She smiled and assured me, “No Susan, they use your own skin to fix it, but don’t worry, I’m sure it will heal just fine.” Sure enough it did. Although, whenever I get sun burnt I can still see the outline.
****
Coping with Change
Barry and I spent a lot of time alone with one another after Mom died. My oldest brother Marshall was old enough to always be ‘out’; he practically lived at his girlfriend’s. Barry and I got pretty good at taking care of each other. I was in charge of getting us up for school in the morning, because Barry would just as soon sleep all day. We would tell our father when we needed to buy groceries and sometimes he might remember to take us, but mostly we had to ask the lady across the road. Mrs. Wilson spoke with an English accent and had lots of kids. She said she didn’t mind.
Washing our clothes was a problem because we never had to do it before; we learned by our mistakes. Barry was especially good at cleaning jobs once he put his mind to it.
We watched lots of television. He played boy stuff while I played girl stuff. Sometimes I’d play the boy stuff just so that he would play with me. I didn’t really mind because I was not a big Barbie Doll fan anyway. We played lots of games and got along fine at first, but ended up fighting; mostly because when Barry was losing he cheated and changed the rules. Oh well, he was still fun to be with, and other than Muggle, he was my only friend. If Marshall was at home, I didn’t stand a chance because being with his older brother was more appealing to Barry than playing with his little sister.
My father continued to drink even more than he did before my mother died. For the first two months he hardly ever came home until he was ‘drunk enough’, but if he did, we had to be really careful to follow the, “don’t talk to him rule”. On the weekends, Barry went to work with him and they stayed out late. I felt extra lonely when they did, but Barry said he was going to be a man soon and it was normal for him to go to work with our father. I could smell beer on Barry’s breath when they came home. I didn’t think that was normal.
****
Forever Changed
An awful smell woke me. I knew he was in my room. A mixture of sour beer, dirty horse farm clothes, body odor and stale cigarette smoke attacked my nostrils. At first, he just stood against the door. The house was quiet except for the roar of my heartbeat. When I heard the door shut I sat bolt upright. With a loud whisper I said, “Go away,” and with that, he pushed his hand so hard against my mouth that I fell back into the pillow.
“Keep yer mouth shut,” he slurred.
He pulled his hand off my mouth, placed his index finger up underneath my chin, and applied pressure. The pain was excruciating and got even worse when I tried to move my head or speak. I could not see his face. “Don’t make me push or I’ll break your neck.”
Forced to keep my head still and straight, I stared at the ceiling and then heard him undo his pants. With his other hand, he pulled up my nightgown. Kicking my knee up I managed to distract him enough to get my chin free. He grabbed me by the throat with both hands and shoved me back. I couldn’t breathe.
“Don’t make me mad,” he said with clenched teeth.
Tears streamed from my eyes and the sound of my heart beating screamed in my ears.
He stuffed a wad of the bed sheet in my mouth until I gagged and then, this time positioned his right thumb, up under my chin and again, pressed hard. The weight of his forearm crushed my chest as he moved himself on top of me. My nostrils stretched wide to take in as much air as I could. I couldn’t breathe.
I heard a small thud on the floor, rolled my left eye toward the sound, and saw Muggle looking up at me. My leg muscles don’t stretch; this prevents my knees from going straight back and I cannot open my legs very far apart. His knee was between my legs, his free hand forced my legs open too far, and pain shot straight through my entire body. I thought my legs were going to snap off like my Barbie dolls did. I struggled to get air in my nose and stared at Muggle. I screamed in my mind to him, “Don’t look!”
He was too heavy, my legs felt broken, there was a sudden excruciating fire in my private parts and choking on the bed sheet, I just couldn’t take in enough air. Muggle got blurry and faded into blackness.