From the moment I was first diagnosed, I was thrown in the common metaphor of being “at battle” with cancer by those around me placing their own labels on my experience. This has never sat well for me and often left me feeling isolated because I felt the complete opposite of how people described my “heroism” and “strength”. There was not an ounce of courage or warrior woman inside of me when I was given those labels. I was/am merely living with an illness as millions of other people do with other conditions and circumstances. I squirm at the suggestion that just living with my condition somehow equates me more to a fighter and warrior than anyone else.
More importantly, the battle metaphor sends the unsettling message that there are winners and losers… Yet, I am not winning while my dead friends have lost! Just because they died does not mean they lost any battle any more than we all lose to immortality. They lived with so much enthusiasm, uniqueness and passion, and should be honored in the same way as others are honored after life.
I never want my life experience to be chalked up to merely “losing my battle to cancer”… I am more than my cancer and refuse to have that define my life. If cancer is what ends up killing me, let that be the extent to which it takes from me. Let it be the unspoken circumstance in my obituary. Speak, instead, about my accomplishments that I chose to pursue, like my career, my passion for helping patients and families, my love for my family and beautiful wife. Speak about the joys and pride as I have identify them to you, not as you have identified them for me.
The pride and strength I do identify with regarding my cancer doesn’t come from the labels placed on me from outside the cancer community but rather from an internal assessment of my personal accomplishments despite the given challenges I’ve faced throughout my life. This is something everyone can relate to, whether you overcame your fear and attended that first day of school or stood up for what you believed in during your board meeting. You can take pride in your own strengths and achievements regardless of how society labels them. You aren’t less than me because you don’t happen to have cancer on your plate of challenges to manage.
By having conversations about what accomplishments were important to you in your life and how you’d like to be remembered, loved ones won’t be left guessing and can show their respects in meaningful ways that they can have confidence in.
It’s great if the battle terminology resonates with someone, as it does with many people. The issue I highlight is regarding those who feel the label isn’t something they identify with and yet feel it continues to be placed upon them by the general population. For those people, I try to be a voice. If you find your cancer to be a battle, then proudly continue walking with that. My thoughts are really a message about respecting each cancer patient or “survivor” as having their own unique cancer experience and not assuming that one label fits all of us. My point merely is that we are individuals first, not necessarily defined by our cancer.
I don’t appreciate walking into a community center, gym, or any group gathering and being given that look of admiration and respect because I happened to have had brain surgery and been diagnosed with brain cancer. I am just another diverse individual at the grocery store buying bread – not a walking inspiration poster. This gets a little off topic but I think cancer is seen in similar ways as physical disabilities, and there is a great Ted Talk about not being people’s inspiration. I am sure a lot of us can relate to this with our own diagnoses.
By seeing cancer patients or survivors in a unidimensional way as inspirational fighters, people prevent themselves from seeing us as relatable and equally fallible humans. As a result, I feel my emotions are perpetually linked to my cancer. If I’m happy, people are amazed that I can be so happy given my reality; and if I’m sad, apparently I have every right to be. And heaven forbid I sweat the “small stuff”, people psychoanalyze it as me grasping at straws to find something I can be in control of; poor thing. A good day is never just a good day anymore, just as a bad day is no longer just a bad day.
It’s no wonder I find such a deep need to be around others who have had cancer diagnoses. Regardless of where people are at with processing their diagnosis, I become human again when I’m in their company. Instead of trying to put this cancer stuff into the bottom of my closet and just bring it out for my doctors appointments, I’ve begun attending a young adult cancer support group and it’s been wonderful! So, in addition to communicating with loved ones about how you identify cancer as influencing your life and your identity, I encourage people to find others who can truly relate to your experience. While this isn’t a “club” any of us would have voluntarily picked to be a part of, we are really amongst some great company!
Tara Baysol is a recent graduate of Yale’s School of Public Health Masters program. Prior to pursuing her masters she worked in various project management and administrative support roles within healthcare, human services, and research settings. Inspired by her time in human services, Tara pursued an opportunity to explore health quality research in hopes of better understanding how we measure patient experience. During that time, Tara familiarized herself with the research field and developed a greater interest in quality improvement initiatives within health care. Since then, she has worked in community hospitals and practice settings to help improve systems and patient experience. As a graduate student, Tara focused on the Affordable Care Act’s impacts on the delivery of health care, as well as the challenges surrounding patient outcomes and quality improvement initiatives.