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,
Sammy
