Wisdom comes in the simplest of words sometimes...
It started out as a tremor in my right pinky finger, a faint movement that was hardly noticeable and easily ignored. It was a busy time. I had just completed a medical residency in family practice and was expecting my first child. But eventually what began as a sporadic tremor became more constant and concerning. Within a few months what I had thought was a benign annoyance was diagnosed as an incurable, progressive neurological illness—Young Onset Parkinson's disease at the age of 27. And so began my own struggle, marked by denial, fear and anger, feelings that were further amplified a few years later when my father received the same diagnosis.
For a long time, I focused on the difficulties I faced on a daily basis and all that I felt I was giving up. Primarily because it was not my choice to slow down, I was not given the option. I was angry that at a time when life was so busy and exciting, I had to deal with this diagnosis. I became consumed with thoughts of the disability I was sure I was going to face. Would it put an end to my medical career? What about my plans to travel the world with my husband when we retired? Was I going to be there for my daughters as they journeyed through their life stages? And that’s where I was stuck for a long time – mired in my own negative thinking.
But then ultimately things changed. They had to change. It wasn’t after one specific conversation or event or after reading something particularly profound; it simply wasn’t in me to continue living a life of negativity. And in large part, this was due to my father’s influence. His gratitude for life and positive outlook was apparent throughout my childhood and then later in my adult life as I watched him deal with the effects of this progressive illness we shared.
Friends and family always commented on how alike we were and this diagnosis seemed to further confirm that observation. Truthfully in many ways I was flattered that people believed us to be similar; to be compared to someone who had such an amazing influence in my life.
My father’s story, like many of his generation, is a testament to his perseverance, adaptability and enviable work ethic. He came to this country with nothing but his degree and built a beautiful life for my mother and me, all while contributing to the educational fabric of a nation he called his chosen and true home. As an acclaimed educator, he was highly intellectual and also equally charitable and compassionate. He was a man of both faith and science and lived his life guided by optimism and a belief in serving others.
Through his example I learned the merits of determination, responsibility and perseverance. He instilled these values in me with gentleness and respect, often in forms of stories that he had heard, some he made up. This is one story that he shared with me many times as I was growing up. Years later, at a time he was learning to cope with his own Parkinson’s diagnosis, he put that childhood story to paper. Never did the lesson those words imparted ring truer than when I was trying to come to terms with my own illness. As I read his words now, how much he has influenced my own way of facing this battle, becomes so very apparent. I’d like to share this story with you…
“A poor man in Africa was walking barefoot on the pavement on a hot summer day. He could not afford a pair of shoes. He cast his glance upwards and complained, “Oh God,” he said “Why did you make me so poor that I cannot afford a pair of shoes? My feet are burning in the heat.: He continued on his way and soon came across a man crawling on the same hot pavement. The crawling man had no legs. That same poor man, who only moments previously had felt the pain of his situation, now thanked God for blessing him with feet on which to walk.”
And my father not only “walked” but he “ran” following his diagnosis of Parkinson’s, pursuing his life passion and starting new educational programs in the field of science as well as his own charity providing funds for educating the poorest children in developing nations. It was this kind of influence that allowed me to learn to accept this unexpected challenge that life has brought my way.
To recognize that although the diagnosis is not within my control, how I face this challenge is ultimately mine to determine. My choice – either remain internally pessimistic about life or abandon my fear of the future and begin living my present, just as my father had done.
With this change in outlook, I went from a position of helplessness to one of true personal power. And that empowerment continues to be liberating, allowing me to move beyond my disease, to focus on those variables in my life that I do have control over. To put into practice the lessons my father taught me.
I lost my father to a brain aneurysm about 3 years ago, a profound loss that I still feel acutely to this day. But his influence and optimism continue to guide my work, allowing me to contribute in any way I can in the field of patient education and advocacy, to serve those in my Parkinson’s community until that ever elusive cure is found – one of my life’s true passions.
Undoubtedly my father was a leader in his chosen field of education, and received much recognition for his novel contributions but more so, his leadership in my life, the values he instilled in me from the very beginning are the very tools that allow me to cope with this diagnosis, pushing me to not just live but thrive despite this incurable illness, and for that along with so much more, I am eternally grateful.