Monday, September 29, 2014

I Am Not a Cancer Champion, I Am a Cancer Survivor

I spoke at a fundraiser for cancer research earlier this year and the other survivors and I that spoke were called “cancer champions.” I felt uncomfortable with this term. I had certainly survived cancer and overcome cancer but I never felt like a “champion.”  To me, in order to be a champion there needs to be a competition. Since my cancer, like anyone’s cancer, was made of my own cells, it seems strange to think of myself as a champion in a competition against my own body. This term also made me feel like the most important thing about me was that I had “won” against cancer.

This title reminded of other ways that as a cancer patient I felt idealized or simplified as a person because of my disease; times that my diseased status was put ahead of anything else about me. I know that when someone has cancer or a severe illness it can be hard to know what to say and I do appreciate that people were trying to be supportive, but there are a few things that began to grate on my nerves as a patient.

Something people often say when talking to or about children with cancer is, “You are so brave/ a hero.”
I have mixed feelings about this one. I understand the sentiment and truly appreciate the support. However, these statements always made me feel awkward because I never really felt brave and I definitely wasn’t a hero. I was doing what I had to do to survive. To me this was not an extraordinary choice. It was extraordinary situation, but it was an ordinary choice. I chose to survive; I chose to live.Statements like, “you’re so brave” can make it seem like people with disease never have bad days and that they’re always “heroic,” “strong,” and “positive.” That’s how I felt anyway and it felt very disingenuous.  On my CaringBridge I tried to keep my posts positive. I didn’t want anyone to feel bad for me. If it was a bad day, I didn’t write or I asked my mom to write an update, but I had bad days, plenty of them, and sometimes when things got bad I asked, “why me?” I often felt bad, like I was misleading people or something. (Esther talks about this in the video I included in my blog about her) I was not a heroic pillar of strength and bravery all the time.

Another thing many people said was something along the lines of, “I would never be able to… do treatment… drive to Seattle every day… do what you are doing.”
The only reason I was doing any of that was because if I didn’t I would die. This is typically the choice when it comes to pursuing treatment – do it (despite the horrible side effects) for the chance to live, or don’t do it and possibly die. I know this may sound melodramatic and morbid, but it is a life or death situation. You have to do what you have to do to survive. So, everyone, please give yourself some credit, you probably could do what I did. If you were in my shoes, you would likely do whatever you had to do to survive too.

Also, when I was sick many people changed the way they talked to me. The best way to explain it is to say that people talked to me like a sick person. I was treated with great care as if I was very fragile and would break.  It seemed like people would only see my illness and not see the whole complex person underneath. To me this was exemplified by the change in the way some people greeted me. Instead of saying Hi, how are you?” people would say “Hi, how are you feeling?”
This seems like such a little thing, but it was big to me. I know people were concerned about me and wanted to see if I was doing okay. But, it made me feel like my illness was the only important thing about me to other people. It made me feel somehow reduced and separated from others. This is how you talk to the sick girl and this is how you talk to the normal people, so to speak. Also, I just wanted to talk about something besides my illness all the time.

All of these things built up over time and I appreciate that people were trying to be supportive.  I guess it felt like I was being masked by my illness. Like the cancer girl was all many others saw. To me my cancer status was not the only or most interesting thing about me.

I don’t mean any of this to sound harsh or that I am blaming anyone.  Because of my experience I have worked hard to see people with illnesses and disabilities as whole people and to look past what can be seen on the surface. It is my hope that by sharing my experience I can encourage others to do the same.

Mischief Managed,

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