By Kate Ryan
1987 seems like a lifetime ago now. Well it is really I guess, but the memories are as strong as if it were yesterday.
The Easter break of 1987, my mum, dad, brother and I went camping on the NSW north coast. What fun we had, bushwalking, boogie board riding and swimming at the beach next to the camp spot. My brother and I played with the other kids easily; running, bike riding and playing hide and seek. Our lives were carefree. The winter before we had been skiing and we regularly went swimming on the northern beaches.
Growing up in Sydney, I excelled in dance, sport and music. My family was socially active in the local community and so was I. Every afternoon I caught the bus home with my friends, did my homework and played with the kids next door. On the weekends, my brother, dad and I went swimming at the local beach or played with our neighbours – in and out of one another’s houses.
I remember it rained during our Easter holiday and I liked it, because I loved running and splashing in the puddles. I loved making new friends and learning new games to keep up with my new friends. Mum and I went bushwalking and I raced past her and ran up the mountain track. I yelled back, “C’mon, Mum!” My brother and I built the camp fire with our hands and collected sticks for the fire. I helped cook the meals on our small portable stove. Dad taught me how to make billy tea, using two hands and being careful of the hot tin. We read books and did crosswords. We told stories and did puzzles together.
Two months later, it was a cool June day. I did my normal school day. I went to school and had orchestra practice at lunch Tim. I caught the bus home as usual, too.
Around 4.00 pm I developed a really strong headache, not something I had ever really experienced before. Mum suggested I stay home instead of going to jazz practise but being the driven person I was, I headed off, regardless of my worsening headache. I stood with all the girls, doing our warm-up exercises but as we finished our neck exercises the headache struck like an axe through my head.
My teacher asked, “Kate, are you ok?” and suggested I go and get a drink of water. I went to do so and the next moment I found myself on the 1950’s wooden chairs at the front of the dance hall. The right side of my body was fitting wildly as oxygen stopped flowing to my brain. I had collapsed. The class was continuing in front of me with the music blaring and my head pounding like an axe. After two hours, the students asked the teachers to call my mum.
Mum raced me to the hospital, seeing instantly that I had suffered a stroke. I spent one month in Sydney Kids Hospital and many months following travelling two hours to and fro for daily physiotherapy and doctors’ visits.
Daily physiotherapy was heartbreaking. Imagine being asked to move your thumb and being unable to, when only weeks before your entire hand and body were capable of doing graceful movements in a ballet performance. My arm and leg were placed in plaster casts to stretch out the tendons which were slowly getting tighter and tighter.
I thought I was in a nightmare, and that one day I would wake up and everything would be back to normal.
But, instead, the weeks, months and years rolled by and this stroke became my life.
My new life
Living with a brain injury was more than adapting to the physical disability. For example, I could remember my phone number from my old house five years ago but couldn’t remember what someone had just told me. I was always confused and couldn’t understand directions for daily tasks. My brain now couldn’t follow along when reading to remember the text. Maths was very difficult. It was impossible for me to attempt a task like reading with a distraction such as TV or music in the background. Three decades later, these weaknesses have improved so much, and yet even today I can tell you the name of my best friend’s dog in 1985, but I couldn’t repeat back what you just told me.
The headaches continued to be dreadful. Anything gave me a headache, such as someone laughing or even brushing my hair. Headaches didn’t relent and life just had to go on. When I was 11 or so, I started having epileptic seizures yet they weren’t discovered until I was 14, when I experienced one in front of my history class. My “absence seizures” were often misinterpreted as “Kate’s being lazy” or “Kate, stop ignoring me” and “Kate, keep up with us please”.
I found that everyone had moved on with their life and it was presumed I would too, even though I was suffering crippling depression and undergoing painful and intensive physiotherapy everyday with constant headaches. The people around me, school teachers, school friends and acquaintances, lacked the capacity to understand because the awareness around stroke and disability was in its infancy during the 1990’s.
Learning to survive life with one hand didn’t come naturally to me. Firstly, I was so angry for this affliction, often saying “Why me?” Learning to rely heavily on my right leg with a large limp on my left was just as unnatural and upsetting as living with the use of one arm. Conformity, just as for every other teen, was a priority yet, when I couldn’t wear the right shoes and strappy dresses, I just didn’t fit in. Life would never be the same again. I was slowly coming to terms with this and trying to obtain a support network of friends who liked me for who I was, NOT how I looked. This proved difficult.
Although living with a stroke became my life, it never felt normal. I obtained employment but gaps in my cognitive functioning meant bosses became easily frustrated with me. I never really liked “work” because all I wanted to do was “dance”. I felt I should have been a ballet dancer as planned.
Work never got easier. Working in the call centre of a multinational company I found it difficult to keep up, especially understanding the numbers in the customer’s financial accounts. We had very short breaks, 40 minutes out of an 8 hour day, which meant fatigue increased and concentration was very difficult. There was no empathy from management because stroke is poorly understood and quite simply they had a business to run.
Two years ago, after contending with my stroke for 28 years, I achieved acceptance. Acceptance of my stroke. Freedom and recovery finally began to appear for me. I released a book to help other stroke survivors live independently with one arm and began speaking professionally; sharing my story and shedding well-needed light on stroke rehabilitation. I mightn’t be a celebrity but I am a superhero to my boys and a fairy princess to my daughter.
Kate Ryan is the Author of Beyond Stroke: Living Independently with One Arm: A how-to guide for living with freedom, independence and dignity. Kate also provides education and health talks across NSW and Victoria, as well as group facilitation and professional talks at charity events. For more info. firstname.lastname@example.org