Jane is a ten-year survivor of a very rare form of cancer Myelodysplastic Syndrome. She has enjoyed several exciting careers including a librarian, counselor, teacher, and writer. She loves to write about surviving cancer, overcoming hearing loss, and her hearing ear service dog, Sita.
A cancer survivor urges all of us to express our concerns, and assist each other through our individual and collective voices.
Recently, I was shopping with a friend and came across a pretty sign that stated, “Be a voice, not an echo.” We stared at each other, I said I had to buy it and she conceded “this is you!” Later, I found out that it is a quote by the great Albert Einstein.
I have been an advocate for people with disabilities my entire life, starting in my 20’s. I always become defensive if I perceive someone with a disability being made fun of or taken advantage if. Part of this is because I was bullied as a child in school, as a result of being the only person there with large ugly body aids. I later received a master's in rehabilitation counseling, a doctorate in counseling, and taught graduate classes on the American with Disabilities Act. I constantly am coaching people on their rights, have written several articles, and conducted workshops on assisting people with disabilities.
Along came my service hearing ear dog. I became an even stronger advocate when refused entry in public places and constantly being questioned about why I have her since hearing loss is an invisible disability. I even had one woman yell at me that I did not need a dog as much as her mother because my hearing was not as bad. Really!
Then along came cancer. Like most people diagnosed with this insidious disease, I spent a long time simply processing that I had an incurable and terminal kind of cancer and coped with how to go about fighting it. Then the chemo, side effects and the battle to just stay alive happened. Gradually, like most survivors, I figured out that I needed to take life day by day. All of us do, but cancer teaches us this even sooner.
I was stunned by tactless remarks made to me like, “I get tired too,” or “Well, you have already lived longer than you are supposed to.” I could not believe how people blurt things out without thinking.
After several years I began my writing and started to be honest about my feelings. The response I received from other survivors astounded me. We are expected as cancer “victims” (I use that word in quotes because I never say that) to be accepting, to be grateful, to be angelic with this disease. It is a burden to bear.
I found out from my oncologist about CURE® and took to it like a duck to water. Here was an entire group of people sounding off about how they really feel about cancer. They describe their emotions of anger, fear, bewilderment, sadness and much more.
My very first article was titled “Being Vulnerable With Cancer Is Ok.” I confessed on Facebook how scared I was and was overwhelmed by the love and support that came pouring out. I wrote about this experience. In all my writing, I have been honest about my trials and tribulations and tried to break the stereotype of the meek and angelic patient.
The cancer center where I go for my treatments contacted me after I complained to the CEO of the hospital about a problem. They shocked me when I was asked to be on the Patient Advisory Committee. I realized they did want to address problems and hear our voices. I became involved with my co-conspirators, a wonderful group of survivors who bonded immediately, as we presented suggestions for the new cancer center. I remember saying at one meeting that the laboratories needed to be changed because the present ones, well, sucked. They are small and cramped with a constant flow of traffic, in and out, offering no privacy. The others on the committee laughed, and then offered their own suggestions— we have been assured by the architects that things will be different.
I have learned along with several of these survivors not to be an echo and say what is expected. Rather be a voice. And that does not mean complaining just to vent, because that helps no one. However, we need to be honest about our feelings, share with other survivors, and when appropriate make solid suggestions to assist all of us. As a group, we are an even louder voice and this ultimately benefits every one of us!