This journal is based on both my personal and clinical experiences working alongside patients and families at near-end-of-life. However, I have learned over the years that a person’s near-end-of-life journey does not start at the time of a final life-threatening diagnosis. The value of understanding a patient’s life journey – their experiences, aspirations and goals – is vitally important in supporting their care.
The only real-life experiences I have of the journey from birth to near-end-of-life and death for this journal is my family’s. I decided to take the risk of telling my personal story leading up to the start of my community practice for patients at near-end-of-life, as well as how I faced the deaths of three family members. I thought it was only fair for me to take the same risk I was asking of my patients when I asked their permission to share their journey with my readers.
When I look back on my life, it is interesting that events that felt relatively insignificant, including decisions made with little thought, would turn out to be very important. Conversely, other events that seemed monumental turned out to be minimally significant. This push and pull of life forces over which I had little control shaped my journey.
My mother and father were born just after World War I, lived in rural Quebec, and married at the end of World War II. Had there not been a second world war, my father, with a university mining engineer degree, would have worked in the gold mines in South America, likely bringing his wife and children with him. Instead, he joined the army – and his children became not only ‘baby boomers’ but also ‘army brats.’
Army officers and their families followed the ‘army rules’. In times of peace, soldiers and their families were required to switch to the different army bases across Canada, changing locations every one to three years. For my siblings and I, it meant that our only stable relationships were the members of our nuclear family. With each move, we lost all our friends. With each move we changed provinces, and therefore changed educational systems. Some provinces offered education in French, some did not, and each province had a very different approach to the curriculum. Often, we were a year ahead in some subjects and a year behind in others. Our parents quickly assessed the difficulties we were facing and compromised, placing us into the English public school system which they knew was available in each province.
To preserve our French language, our parents required us to speak French at home. Gradually, over the years, my parents continued to speak in their comfort language, French. We listened and understood the French language, but we responded in English. In this way, we maintained the French language throughout our lives.
After 12 years of moving across Canada, my father was posted to Ottawa and resigned from the army two years later. He and my mother decided to set up permanent residence in Ottawa since four of their children were about to finish high school and apply to the universities or colleges easily accessible in the city.
I have little memory of my early years except a recall of adapting strategies within my nuclear family and to my new circumstances every few years. I was the fourth of five children. My three older siblings were a year apart; I was two years younger, and my youngest sister was five years younger. My mother was busy all day taking care of her five children; my father was busy working.
I was often left in the care and company of my siblings. I was introverted. I did a lot of ‘observing’ as to how they did things, overcame difficulties, what was successful, and what failed. So, when it was my turn to try a new task or ask for a privilege, I had already learned how to avoid failure and had many strategies for success. I also used this approach each time we moved. I reviewed in my mind the successes and failures of my behaviour in previous situations. I observed the differences in the new location and decided how to set up new behaviours for the present situation. It was the one benefit of no one in your new school outside of your family knowing who you were and how you had acted in the past. There was no option for all of us in our family. We had to adapt to each new location and situation. These strategies would support my decision-making as an adult.
My father taught us very early, “Always find the ‘elegant’ solution to any problem you face.” In Grade 5, one of my teachers commented that my writing would be much better if I used my right hand. I thought about it, started to experiment, and found my elegant solution. I developed a new way to write, with my left hand, which earned me the prize for the best handwriting in the school by the end of the year. Who knew this fundamental skill would make a difference in the future?
In one of our later moves, we lived close to an army base in New Brunswick. Two army officers noticed that a group of early teens had little recreational activity during the summer. They loved to play tennis and there was an unused tennis court close by.
They set up an experiment by buying a few dozen tennis racquets, bringing them to the tennis court on Saturday mornings and giving lessons to all the children who came. My siblings and I came every weekend. That small experiment, added to the emphasis on sports in our schools in New Brunswick, triggered a lifelong love of sports that helped us find balance in our future lives – another simple but elegant solution.
When we made our last move, to Ottawa, Ontario, my older siblings were placed in an established high school while I was placed in a newly opened high school closer to our home. Due to the very different curriculum from New Brunswick, the school officials did not know what to do with me. Even though I had just completed Grade 8, they decided to put me into Grade 10, knowing that I would be a year behind in Mathematics, English and Latin. They felt I would be able to cope if they placed me in a ‘non-academic’ general stream where Latin was not offered. It was determined that I would be able to catch up in Mathematics, English and Typing (which replaced Latin). With this solution, without my parents’ or my input, meant I would not likely pursue a university education.
I needed to evaluate my new circumstances and find an ‘elegant’ solution to this complicated situation. I was in a new city where I had no friends and most of my classmates were not ‘super keen’ on achieving at school. I was still timid – a strong introvert. On the other hand, I loved school and the opportunities to learn new things.
I went into my ‘observer mode’ for most of the first year working on my survival strategies. I needed to continue learning and doing well in my classes without calling attention to myself. Early in the year it was not much of a problem because I realized, and my classmates knew, that I was not performing as well as they were in Typing, and I struggled in Mathematics and English. In other subjects, I answered only a few questions in class despite knowing most of the answers and I never revealed my marks on tests. I then decided to improve my knowledge in mathematics by asking my sister, who was a year ahead of me in the other school, and a genius in Mathematics, to tutor me in the evenings. To improving typing skills, I asked my teacher if I could practise my typing after school hours. None of classmates knew of my extracurricular academic activities. Finally, I used school sports as an outlet for my mental and physical health. In New Brunswick, I had developed above-average skills in tennis, badminton, and team sports. In this safe environment, I made good friends with students who had similar views on education, sports, and the future as I did.
My coping strategies proved successful through to the end of high school, building the base for the skills I would need for my future. I learned to write clearly and type quickly, both tools necessary for clear and accurate communication.
Though my path for the future had been decided for me by the educational authorities, I found strategies to move my path into directions I decided for myself and aim for a university degree.
