"Survivor" is a term—a title if you will—that's thrown around a lot these days, and I'm not truly sure if I want to own it. But, for lack of a better description, I guess I fit the bill. The reason I'm not overly fond of the term “survivor” is that it denotes living through and beyond mostly what folks describe as negative experiences. However, a lot of positive philosophy and understanding is spawned from negative physical experiences. For example, I grew up poor. Therefore, I learned humility and how to be thrifty. I also gained a sense of charity and compassion for others. I have a brother that is just 18 months older than me who has autism and mental retardation. This made me wonder about all sorts of things. It gave me curiosity and a love for learning. Growing up with my autistic brother also made me ask questions such as Why him? Why not me? What's going on in his brain that words don't express? What does he feel? What does he think about?
Trying to answer these questions made me buckle down in school and start to study. When I decided to become a student, I entered an essay contest to win a complete 24-volume Encyclopedia Britannica. I thought if I had these books, I could become a scholar and attend Harvard some day. I was just 14 years old at the time. The contest was open to all students entering ninth grade through 12th grade in New England. The topic was, "What career would you like to pursue and why?" I wrote about my desire to figure out the mysteries of the brain and find a reason and cure for autism. I won. This would be the first of many essay contests I would win that year. My grades in school soared, and I was on the top of the heap. I was even nominated to participate in the Miss Teenage Pageant of Massachusetts.
It was 1972; I was in ninth grade, and my whole family attended the pageant. I truly believe they had a much better time there than I did. I had this looming dark cloud feeling the whole weekend that I could not explain. I had been used to winning in my small school community in Malden, Ma. And, finally, against all those older and more sophisticated teenage girls, I was no competition. A lot of them were much more versed in the trends of the day. They smoked, wore make-up, had boyfriends. I was a studious type that loved ballet, biology, getting good grades in school and pleasing my parents. I felt a bit like a socio-economic misfit at the pageant. All my clothes were borrowed from a younger cousin, and my mother sent me to two sessions of "charm school" to learn how to walk, talk and apply make-up. I hated that! I thought I walked and talked just fine! Long story short: I came home with no trophies or accolades. My parents both experienced health “incidents” that weekend, which I learned about much later. Four months after the pageant my mother would succumb to ovarian and uterine cancer; 10 years after she had suffered breast cancer. My father followed her to the grave just 46 days after with a massive heart attack. She was only 55 years, 41 days old. My father was just 10 days shy of his 52nd birthday. Today, at 55 years old, I have out-survived them both despite having had breast cancer myself at the age of 47.
I actually first came in touch with my own mortality when I was 35 years old. I was diagnosed with Rheumatoid Arthritis. I have experienced so many treatments—a story of “survival” in and of itself. Without going in to a lot of detail, I can tell you that I learned about the mysteries of pain. At one time, I depended on a quad cane to get around. It's astounding that today with all the new discoveries in medicine, I am so fortunate to be able to not only walk without a cane but run marathons!