The first leg on my journey to learning the ways of my expanding world began at home, under the direction of Mom, for the most part, with Dad following the progress from the sidelines, occasionally wearing his doctor hat when the situation warranted, particularly when it came to me and my early years as I settled into growing up with cerebral palsy. My 7 siblings, whether they realized it or not, were great teachers as well. From them I learned a lot of fun and useful things, so I can only imagine the fear and trepidation my parents felt at what the next pair of influential adults were in for, courtesy of Cyclone Carla. After testing the patience of parents and elder siblings and their various teaching methods, it was time for my introduction to a larger gathering -- a group of my peers in a formal, sit down and be quiet, no-nonsense setting --- the classroom; a room with rows of uncomfortable seats and slippery floors. There was no pre-kindergarten or kindergarten introduction to such rigid structure; I was thrown into the deep end, virtually head first. Grade One, here I come! Would I be ready for them? Would they be ready for me? Though I lived only a short distance from school, I was driven by car, mostly by my mother, and as elder siblings got licensed, they’d occasionally taken me. Once delivered inside that first institution of higher learning, there’d be no escape until Mom collected me. I noticed a large stone slab on my way inside the school building. That stone would become MY stone, but at the time, I didn’t know it. Children running up the stairs and down the stairs, moving freely about the classroom until instructed to sit down. I was already positioned; already seated. Already feeling different. If only I could climb and run. I’d be out the nearest window and home! Safe with my books and my imagination. No, I didn’t have an imaginary friend. I did a lot of thinking about a lot of things. I still do!
This second leg of my education began at primary school under the tutelage of Mrs. Frances Murphy and Mrs. Flora DeMerchant, both lovely women who no doubt were challenged by the scrawny kid, legs encased in waist-high braces and wearing exceedingly unattractive cat-eye glasses. The things I used to do with/to both of these ‘therapeutic’ aids! That’s a story for another time. I was the only child with disability to grace the halls these two ladies walked during that period. I can’t recall if there was another after me in primary school; possibly several years after me there were one or two other students who were to be challenged in much the same way that I was. I do recall the banker’s teenage daughter, Libby, who lived with Down Syndrome, but I didn’t meet her until Grade Three when I became her reading coach; that classroom was in the elementary school, a building also a short distance from home. She attended school for the socialization. I will always remember her pretty dresses and the special relationship she had with our third grade teacher; a friendship that would last for decades.
One leg, two legs; home and school, each offering a unique education. Those two legs, along with my own two legs of the flesh and bone variety, would take me places, with lots of physical and emotional twists and turns.
The fact that in primary, I was ‘the only one’. made me uneasy. Would I be accepted? Would I fall down? Could I get up on my own? Would kids laugh? The teachers wouldn’t laugh, but they’d obviously wonder what to ‘do’ with me. Mom made it clear from the outset that I wasn’t to be treated differently because of my disability, the mobility disorder identified with a certain degree of familiarity as CP. Undoubtedly, some things would have to be modified to accommodate me with regard to safety, but anything that was exclusively tied to learning and academics needed no such adjustments. The only issue with academics, to which time would attest, was my own lack of interest in following rules. I didn’t like being singled out, called upon, noticed. I preferred to sit quietly and read, color, print, whatever. I preferred to feign a lack of intelligence, if it meant I would be left alone to do what I wanted to do. Just leave me alone! Though I did not like school, I loved. The fact that in primary, I was ‘the only one’ made me uneasy. Would I be accepted? Would I fall down? Could I get up on my own? Would kids laugh? The teachers wouldn’t laugh, but they’d obviously wonder what to ‘do’ with me. Mom made it clear from the outset that I wasn’t to be treated differently because of my disability, the mobility disorder identified with a certain degree of familiarity as CP. Undoubtedly, some things would have to be modified to accommodate me with regard to safety, but anything that was exclusively tied to learning and academics needed no such adjustments. The only issue with academics, to which time would attest, was my own lack of interest in following rules. I didn’t like being singled out, called upon, noticed. I preferred to sit quietly and read, color, print, whatever. I preferred to feign a lack of intelligence, if it meant I would be left alone to do what I wanted to do. Just leave me alone! Though I did not like school, I loved learning.
I was the only one like me, the only one who had to be help here, helped there, helped to sit and being positioned so I wouldn’t flop over, helped to stand -- it made me mad; nothing about those early days and years was easy. No sane person would take all that angst sitting down, but there I sat, having no choice. I couldn’t run away, though I was boiling on the inside with nowhere to go. Did I mention that IT made me mad? The ‘its’ that were impacted by living with cerebral palsy were many, but with the passage of time, which is the same for everyone, I’d learn which bits were going to need work, and which I could simply move on from, move away from, and accept that they were not necessary for me to live a happy and productive life.
Dad told me years ago that people don’t get mad, dogs get mad. People get angry. Okay, I was angry! It took me a long to time accept that being angry was okay and that I’d learn to calm the savage beast that clung to me dirty blanket in need of a good wash in hot, soapy water. The hot soapy water came over and over again to wash away the blackness of ‘can’t do’, as I was challenged by one experience after the other that would test my resolve to press on; I was learning to channel my frustrations more productively, abandoning the wishing and hoping for ‘normal’ legs. I learned to better trust what I could and could not do. Time on my stone helped formulate those little plans of attack as I grew up and got on with things.
My brothers and sisters had told me about recess and snacks; I knew I’d like that. My enjoyment of food continues today and I can eat anything I want and not gain an ounce. Don’t hate me because I’m a stick chick. I can’t help it; goes with the territory of being a spastic, lopsided person who walks funny. But I digresss -- getting back to recess – that daily break in the routine of primary academia would prove my salvation. Recess meant going outside, fresh air, people watching – I loved to do that. What else would I do during this brief respite from learning tables and getting acquainted with Dick and Jane? I knew that the girls skipped rope and played hopscotch and did other things that involved lots of moving about – I couldn’t do that. The boys would play catch or climb trees. I couldn’t do that, either. What about me? My first grade teacher, Mrs. Murphy obviously thought about it, too. What do to about/with Carla? And then I saw it again – the stone slab off to one side; out of the way. I wanted to go there. I’d watch the other kids. I’d be fine. Don’t worry about me! Mrs. Murphy assisted me to MY stone, and I unlocked my braces with the knee releases, so I could bend my legs. As a child, on an open area/seat, I would prop myself up with my hands, though that rather limited playful activity. I got myself off the stone and onto my knees and created my own solitary play game with a stick and rocks. I don’t recall having fallen on my face, so those first days must have gone alright. Though, I don’t remember, I’m sure some of the girls I attended Sunday Mass with interacted with me. When I was in Grade One, my brother Robert, older by a year, was in Grade Two, so I’m sure he checked on me; being close in age created a certain understanding; a camaraderie.
Two years of recess reflections as I sat on MY stone gave me an opportunity observe – to people watch. To see who talked with whom; to see which boys pointed at which girls, with sometimes toothless grins, and vice-versa. To notice how children resolved conflict, to see how boys and girls decided who would be their friend and who they would exclude. Even at that age, kids ‘fell in love’, had likes and dislikes when it came to people. Were those choices rooted in a family history of previous choices made by older siblings? By parents? Would I be influenced by the choices of my siblings who came before me, as they moved beyond the primary school to take their place in elementary school, then high school? Families gravitating towards some families while having no relationship with others. I don’t recall being pointed at by children; I do however recall being pointed at by adults; and their concurrent whispers. Rude? Ignorant? I was never sure. With regard to children, I’m sure once parents learned I was going to school with their little darlings, they advised their own to be kind. That was what was done in a small town. Don’t point and stare at that ‘poor thing’. And so it was, a learning of lessons of a different sort while seated on MY stone. My view of the world might have been narrowed by my lack of physicality, but it was very broad with regard to what I took in, what I absorbed about how children acted, reacted and interacted. I was creating a mental file cabinet of lessons.
How I utilized them would be dictated by maturity. A greater freedom came as my physical body grew stronger and my legs more sure as my walking improved. I’d always have a clumsy gait, but I would learn to heel-toe, heel-toe in an anatomically/physiologically correct pattern. Where the walking of my peers was an innate milestone learned between 9-14 months of age, my walking was taught through years of therapy, whether I liked it or not. Mastery of walking would never be as important as the lessons I learned about people and how they felt, what they thought about and why they behaved the way they did. My early understanding of this was borne out of the time I spent on my stone. Recess was over. Time to be carried back into the classroom to finish the first day!
If it wasn’t bad enough that I was the only one who ‘walked funny’, being left-handed added an interesting dimension. When I was in school, teachers often discouraged left-handedness with raps on the fingers from a well-worn ruler, directing the student to the right. Printing and cursive writing were nightmares. I was never directed/forced to change at home and I could print all my letters just fine! I was the only one of the 8 children in my family who was ‘gauche’. Apparently, Dad advised the teachers not to interfere with my handedness, as brain dominance would determine walking potential; as luck, or fate would have it, being left-handed was, for me, a good thing; had I been right-handed, the likelihood of learning to walk would have been impeded. Most persons living with spastic diplegic cerebral palsy, it turns out, are lefties. YAY. A plus for me!! Another plus is that most persons who are left-handed are gifted artistically – either musically, or in the area of writing. Double YAY! The seeds of my writing were planted very early on, from those first days of sitting with Mom and being read to, to watching my sisters in the kitchen making fudge, as I sat, on the floor, tucked out of the way of their moving about. I watched. I listened. I learned. More stuff for my mental file cabinet.
I think one of the things that truly angered me over the years was Dad’s penchant for comparing his children to other children in the community; we never quite measured up with regard to academics, though an elder brother and elder sister did very well academically. Dad never compared me to anyone either inside or outside the family, though he did say that I demonstrated a ‘quiet intelligence’. I do not believe he ever comprehended how his attitude about academic ‘excellence’ impacted his children. It was something that was never discussed, though I did ask him once years later when I was long out of university. There’s yet another story within the context of that conversation, yet to be written. During a short period of each of my days in Grades One and Two, as I sat on a stone, Dad sat on his own stone, self-isolating, keeping people at arm’s length, and would only venture off it, just as I did, when prodded and poked and cajoled. He and I – we were a lot alike in many ways. I think he rather liked that one of his children was noticeably like him but I’m sure it pained him that the one who shared a lot of his qualities, mostly those that involved a flare with words, written and spoken, had to be impacted by a condition that would limit future life choices, career choices. It’s a shame we never got to share a stone and articulate those fears and anxieties. Time is a great teacher, but he and I didn’t have long enough when it came to really getting to know each other. Most of his knowledge of me was rooted in my life as a person with cerebral palsy. I was the patient, he was the doctor. The father-daughter dynamic didn’t develop as it should have, as it could have. Perhaps he would have benefited from a few recess sessions on a stone, away from the hospital and his job, and away from the house and all the noise of family life.
I suppose, in retrospect, with regard to academics, I could have done just as well, or possibly better than my siblings given I would have lots of time on my hands; time not taken up with extra-curricular activities like basketball, hockey, or volleyball. The upshot was that I didn’t want to study – I wanted to read, to work on crafts, use my hands, create things, to listen to music, to study the art books that Dad had in his personal library. I liked talking with adults and listening to them engaged in lively discussions. I liked sitting on the floor with encyclopedias scattered around; I’d think of something and then grab a book, and off I’d go - exploring. For me, what was missing was ‘normalising’ play activities outside the home on a regular basis. I didn’t have the ‘right stuff’ with regard to the physicality required for the sorts of play activities popular during my childhood, so I had to find other things that would shape the me I would become, legs be damned.
I was not an easy child. Ask any one of my siblings and they’ll be front and centre to tell you all manner of tales about the bratty Carla. What they and I didn’t know during my formative years was that my brattiness was more tied to frustration than actually being a brat or a mean-spirited child. At the pre-verbal stage, I couldn’t articulate what not being able to ‘do’ things meant. As I became more aware of myself and my body and my differentness in relation to my brothers and sisters, I became angry. That anger manifested in tantrums, sometimes rage. Feelings of not fitting in and feeling that I never would impacted how I reacted and responded to situations. Now I know. Now they know. The mini me was a terror; the grown up me is a terror, but only in a different way. I have been and continue to be a strong advocate on behalf of those whose voices are not often heard; the persons with disability who simply sat down and withdrew because he got tired of fighting; got tired of doing battle with the ‘haves’ who then, and sometimes even now, are not listening, just don’t get it, and keep them and us on the periphery, whether they realise it or not.
My escape was books. I loved to read and I had a steady supply of the popular books of the day and my personal library included a range of stories for both young girls and boys. I loved The Hardy Boys – I wanted to be one! As I grew older, I developed an interest in British history – must have been the Crown jewels and the dresses! I also enjoyed word games with my brothers and sisters. I loved all manner of board games with Monopoly being a favorite. Those activities didn’t require me to move about a lot. I could just sit down, be still and let my hands and eyes do all the work.
As my sitting balance improved, I learned how to knit; a leftie learning to knit would be a trick so my mother thought. As it turned out, I was a quick study, learning to knit right-handed, while sitting on my Nana’s (Dad’s mother) lap. From there it was rug hooking, decoupage and a range of other crafts. I also learned how to type and got my first electric typewriter when I was 10 years old. Various of my crafty projects grace the homes of siblings. No legs required to create them.
The days of primary school recess stone sitting are long past, the school is gone, MY stone is gone but all are remembered fondly. I went on to sit on other stones – the stone steps of elementary school and high school, the many stone steps of university, the steps of various buildings that housed places of employment. The steps of homes I created, a few on my own and one with my husband, where I live today on my own; my age dictates limiting the use of steps, stone or otherwise. I can’t so easily sit on a stone now, but I will carry on with the memory that I did it, every day, for two years. Standing to sitting. Down and Up. Movements so taken for granted, but for some, like me, often a struggle to accomplish without practice, practice, practice.
I believe that I am what I was meant to become and where I am meant to be going based on those early years under the guidance of Mrs. Murphy and Mrs. DeMerchant. From the first time Mrs. Murphy plunked me down on MY stone, she opened the doors of what could be, what would be for me, and I’m glad, on a home visit, when she was a very old lady, I got to thank her all those years later, for her part in allowing me to be me. Her smile and a nod said it all. We both had a win.
I also believe that those fellow students watched from my stone, some of whom may have watched me, learned something from me whether they were aware of it at the time or not. It’s very likely that some among them went on to marry and have children, perhaps one like me – a child in need of a stone; a safe place to just be. I often reflect upon those times, hopeful in the knowledge that lessons learned will continue to carry me forward to the next chapters of my life. May they be just as enriching.
From Fred Hazel, former editor of The Telegraph Journal: Carla: I’ve been busy with computer housekeeping and there’s company here tonight, for dinner, so I just had the chance for a quick look at your first report about your personal story. I couldn’t stop reading it. A bombshell! This is about a person with disability but written with such an understanding insight. No bitterness. But a real interpretation of what it’s like and a relationship with other people. I think you’ve got a book to write. The important thing you’re telling readers is not just that you’re a person who had problems, but how you were able to deal with them. I’ll get back to you later – after the company’s left but I have to tell you the Stone story was a real gripper. F.H.
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