My very first memory was waiting for my mother outside the hospital after she had suffered a stroke.
Most children start the process of producing memories with images of their father’s faces, or their favourite toy; I started with IV drip in my mother’s hand. As I began my first memories, my mother started to lose hers.
My mother’s stroke has made a significant impact on my identity. When I went to preschool, she bought me a book to try and explain everything: My Mum Had A Stroke. She tells me now that I proudly carried it with me everywhere, and however disturbing that may sound, it was because my mother’s stroke had influenced the way I saw the world.
It was also because I didn’t understand what stroke was.
However, this is the case for not only unaware toddlers – the stereotypical stroke victim has distorted the public understanding of stroke as the consequence of smoking, heavy drinking, obesity or old age.
Yet, my mother was a stroke victim. My healthy, non-smoking, light-drinking, 31-year-old mother.
Young victims of stroke can be casualties in a stereotype-based diagnosis procedure. Due to the typecast of stroke sufferers as smokers, heavy drinkers, obese or elderly people, young victims, such as my mother, may miss out on life-saving treatment because they don’t fit the stereotypical stroke profile.
Issues with stereotyping also arise with the common belief that paralysis or language problems are the only signs of stroke, and is a false condensation of a much larger problem. Different types of stroke affect different parts of the brain, therefore producing different symptoms. My mother’s stroke occurred in the parts of the brain responsible for forming new memories, vision, and navigation. She exhibited none of the traditional warning signs such as paralysis and speech problems.
Her lack of traditional symptoms and risk factors resulted in my mother’s misdiagnosis of a migraine, and therefore she was treated accordingly and sent home. It was not until two days later, when she returned to the hospital, when they realised she had suffered a stroke. However, it was too late; the permanent damage had already been done.
The most common form of stroke is when a clot forms, blocking off an artery in the brain. With no blood getting through, brain cells are starved of oxygen and die, and brain damage therefore happens almost immediately after the stroke occurs. Within minutes, a capable and intelligent person can be paralysed, get lost in their own homes, and forget the people around them. If the clot is quickly dissolved with drugs or surgically removed, the extent of the brain damage can be contained. Otherwise, the stroke’s size and severity can significantly worsen.
To this day, my mother still exhibits signs of her stroke. She often gets lost, misplaces things, or forgets people’s names; for years I have helped her find her way back to her car at shopping centres, or reminded her subtly of teacher’s names at parent teacher interviews. Even when her memory outwardly appears fine, she can forget entire conversations.
Nonetheless, her improvement from those first years to now is inconceivable. After the stroke, she didn’t know where she lived, got lost in her own home, and had trouble recognising me. She couldn’t look after my brother and I during the day anymore – at least, not for a while – because she had changed into a different person. She had a short temper, and understandably couldn’t cope with two needy children; myself, at two years and eight months old, and my brother, who was only 11 months when she had the stroke.
The most difficult moment for her after the stroke was around a year into recovery. My grandmother had been looking after us while my father was at work, and had taken over my mother’s role in our lives. One time, my little brother fell and hurt himself – my mother outstretched her arms to comfort him, but he ran to my grandmother instead.
While my brother had filled my mother’s role in her absence with someone else, I was old enough to recognise her as my mother despite her fluctuating presence. I cried whenever she left me, and learned to hate my aunt because she was always the one who took my mother to her constant appointments. It was a difficult time for everyone, including those in the extended family – the stroke put a halt on everyone’s lives. My mother was the sun, and we were all the planets, hesitantly orbiting her in fear she might explode again.
Recovery from stroke is difficult not only because of the physical barriers, but the emotional. For a long time, my mother was a different person. Stroke isolates its victims; because of her difficulty with names and directions, it was very hard for her to do the simplest things, like meeting other mums from school, because she could never remember who they were. Before I left for kindergarten, she would always memorise what I was wearing in case she didn't recognise my face when she picked me up in the afternoon. As a person whose intelligence had always been her main currency, the stroke’s debilitating effects impacted her identity significantly. Her recovery was not only to overcome the physical issues, but to reintegrate herself into society and regain her self-confidence.
Her most major step towards recovery, with encouragement from her neuropsychologist, was re-enrolling in the part-time science degree she had started at The University of Queensland after leaving accountancy when she had me. I remember her telling me how happy she was after she had finally pursued science, and that after the stroke, she yearned to return to her old life. She was determined not to let the stroke dictate the course her life would take.
My mother’s decision to return to university after the stroke was influenced by the few options for post-stroke therapy, due to her lack of the typical speech problems or paralysis often seen after stroke. Returning to study was the best option for her to challenge herself and recover.
The culmination of her determination to recover happened in a single moment with a life-changing realisation. While performing tissue culture experiments, my mother looked down the microscope and saw new mouse brain cells growing in a petri dish, right in front of her. It was in that moment she realised that if the mouse brain could grow new cells in a petri dish, what stopped that from eventually translating to regrowth in the human brain, even her own? Yet within this hope there was anger – anger that these new brain cells could so easily grow in a plastic dish, yet her own brain couldn’t repair itself.
During the course of finishing her degree, my mother met Professor Perry Bartlett, the then director of the Queensland Brain Institute at the University of Queensland. Professor Bartlett encouraged my mother in her studies, and supervised her through her Honours year and then her Doctorate.
Now, she is a post-doctoral fellow at the Queensland Brain Institute, where she is conducting stroke research to improve awareness and discover new treatments to help recovery options for stroke victims such as herself– especially with regard to memory problems.
To me, my mother is the epitome of self-driven recovery and a role model for other stroke survivors. The myth that stroke recovery only occurs in the first few years is an unnecessary burden for stroke survivors, as it limits their mindset for active recovery into a short, 1-2-year period. Although recovery is most obvious soon after stroke, it continues for the rest of your life. I can say this because I have seen my mother recover and grow more and more confident within herself over 15 years. Every moment of every day she is finding it easier to navigate and recognise people’s names and faces. Although she still gets lost and forgets things and conversations, it is a drastic improvement from the way she used to be. My mother believes recovery happens over a lifetime, and she will continue improving in areas of previous difficulty until the day she dies.
Although QBI is actively researching stroke, more can always be done. My mother is incredibly committed to the idea that there are discoveries to help stroke survivors yet to be made. This belief is the basis for her latest venture with Professor Bartlett - to raise enough money to formally establish the Stroke Research Laboratories at the Queensland Brain Institute.
This will be a collective of scientists dedicated to stroke research using different approaches in their research, but working towards the one ultimate goal: to discover new ways to improve and treat stroke victims. My mother hopes that the establishment of the Stroke Research Laboratories will provide a platform for a group of scientists to focus solely on stroke treatment and recovery, to improve the future for stroke survivors.