Ed note: This blog post was originally published on Adventures in Living Terminally Optimistic, Tom Marsilje’s blog, and is reposted here with permission. Marsilje’s incredible story, including the development of an app to help cancer patients find suitable clinical trials, was recently featured in Newsweek. In Science 37’s quest to represent the voices of the people we serve, we are grateful to share this post, which highlights a widely discussed topic in cancer patient communities and underscores the importance of participating in clinical research.
What Makes a Hero?
There is some debate in the cancer community…is it right to refer to cancer patients/survivors as heroes? A burning building/emergency responder argument is sometimes used. If a person wakes up in a burning house and struggles their hardest to try to find a way out safely — that person may be a survivor but he or she is not necessarily a hero. They found themselves in danger and they are just trying to survive. An emergency responder, on the other hand, who intentionally runs into a burning building to save someone, is most certainly a hero due to that conscious choice — to put themselves in danger in order to help someone else survive.
The analogy to being a cancer patient is obvious. We don’t choose to be in our “burning buildings” of cancer, we just find ourselves in there one day — and we do everything we can to get out of it alive. So are we automatically heroes?
That burning building analogy aside, most cancer patients/survivors (and related caregivers!) I have met are, in my mind, heroes!
Why? Although the hero moniker may not be automatic, I think how you approach a situation, even if you are there without choice, can designate you as a hero. I see evidence of that every day…every direction I look…in the incredible ways I see fellow cancer patients/survivors/caregivers approach their “burning building” of cancer and how it brings out the hero in them…
Musings on a Text Message
My thinking on this topic this morning was caused by a text I read when I woke up. It told me I was a hero for the advocacy work I do while being a patient myself…I read the text immediately after waking up at about 4 a.m. (all semblance of circadian rhythm has left my body) and in my continued half-asleep state, I texted back with the response below. It explains my viewpoint of what I am doing when I do my scientific and clinical trials advocacy. Looking back at it, I thought it was closer to a blog post than any 4 a.m. text should be — so here it is (with editing for non-4 a.m. improved clarity sake):
I may be doing some heroic things but I think so many people I have met are no less heroes.
I have been blessed with an incredible scientific background & knowledge to help myself upon diagnosis. My initial thought a few years ago was: how could I not share that background & knowledge with my cancer friends who are in need? What kind of friend wouldn’t?
And then my next thought was: how is it fair for me to share just with some people in need (my friends) that “just happen to know me by chance” & not any other fellow cancer patient-survivor-caregiver (everyone) also in need?? How was that fair?
So by logic & basic human empathy, there was only one choice I COULD make – and that was to try to transfer my knowledge to AS MANY fellow cancer patients/survivors/caregivers AS POSSIBLE.
BUT…I am a strict believer in the basic good of the human race…I believe if other patients were in my shoes, if they had my background & knowledge, most people would do the exact same thing. Specific activities aside (not everyone is a writer), they would use their knowledge to help others. People are intrinsically good.
So am I a hero? Maybe in some ways I am one — by being in the right place at the right time (my unique scientific/clinical trial knowledge in the midst of a fellow patient/caregiver community in need of it) — but I am a hero no more so than the multitudes of fellow patients/survivors & caregivers I see every day.
Many of them are acting as heroes in their own way, based upon their own unique backgrounds when this awful beast called cancer entered their lives.
Heroes of Different Flavors
As an active member of the colorectal cancer (and the larger cancer) community, being a member of that community has reaffirmed my faith in humanity on so many levels. I see so many fellow patients/survivors/caregivers, from all walks of life and backgrounds, approach the disease as true heroes, just of different flavors — from undergoing extreme acts of bravery to medically survive and not give up (acting as a positive and hopeful example for others to follow)…to more directly helping others (in whatever way their background sets them up to). It is truly an amazing thing to witness and seeing it is a real blessing of my disease.
Looking back at that text, I immediately thought of David Bowie (a cancer patient hero of mine!) and the line from his iconic song “Heroes”: “We can be heroes.” Although I am not capturing the original intent of the song, thinking about the word heroes, these hijacked lyrics jumped out at me in my very sleepy 4 a.m. mind — except as cancer patients/survivors/caregivers, we are most definitely not just for one day…
We can be heroes, just for one day
We can be us, just for one day…
Oh, we can beat them, forever and ever
Then we could be heroes, just for one day