Joking About Cancer is OK - Sometimes

Katy Nowoswiat

Katy Nowoswiat, a graduate student at Clark University, was diagnosed with a retinoblastoma when she was almost 3.  She is a member of the American Cancer Society New England College Advisory Team, and this is her story, in words:

It wasn’t until I started college that a majority of the people who met me knew I was a cancer survivor.  Before that only a few close friends knew and understood fully its impact on my life - namely, that having retinoblastoma (RB) left me with a prosthetic eye. 

I was diagnosed with RB just before my third birthday.  I had surgery to remove an eye in order to remove the tumor. I was lucky, I didn’t need to have chemo or radiation since the tumor was basically contained within my eye.  Before I became more open with this information, I had queries from others about why both my eyes didn’t move and my supposed “lazy eye,” but I usually shrugged off these comments with a half-hearted response.

When I started college and became involved in Relay For Life, I began to embrace more fully my status as a cancer survivor, which meant letting more people in on what had been my lifelong secret.  The majority of my friends, much to my surprise, were fascinated by the logistics of the whole thing, from how the prosthesis was made to weirder things such as cleaning it. At first I was slightly taken aback by this response, but slowly I grew more accustomed to my friends inquires and would happily answer their questions.

As I became more comfortable with the fact that my secret was now general knowledge within my group of friends, I began to, in a way, make fun of myself when something odd happened as a result of my prosthesis.  My favorite jokes involved pointing out to my roommate the times when I had “sticky eye,” which occurred when my prosthesis became really dry and my eyelid kept sticking to it, or pointing out my “squinty eye” that occurred often in pictures.  My friends would all laugh along with me and everything would seem okay.

I’ve never had problems with people making fun of me for appearing different, but this could be due to the fact that no one knew what was really going on with me. Recently however, one of my friends sent another friend a text one weekend night jokingly making fun of my eye. At first I laughed, because it was a joke I would probably have made myself, but then I realized how offended I was. To my knowledge, no one had ever poked fun at my eye without me present.

This incident struck a strange chord within me. I wondered if I was doing the wrong thing, making fun of myself. Was I inadvertently giving people the impression that this was okay to do even when I wasn’t around? I realized the only reason I can make these jokes is because I’m finally comfortable with who I am; they’re not a mask, or a distraction technique as some might think. I joke because, as my mom says, if we can’t laugh about it we’d cry, and living my life in a series of pity parties is not something I’ve ever wanted to.

The friend who sent the text and I are still on great terms, but I did ask her to be more conscious of how her words can be perceived by others. As for me, I’ve realized that acceptance is the hardest part of my whole situattion. It is something I’ve already achieved and it won’t change - even if I am the butt of a cancer joke.