A Question About the Blog

I tend to be sensitive to language, and the sublet messages that it conveys when people write or say things. 

A lot of this sensitivity comes from spending my career in the disability community. Language can be incredibly oppressive to people with disabilities. So many people use phrases such as "she is confined to a wheelchair". On the surface, it sounds like it makes sense - a person needs a wheelchair to get around. But, in fact, the message behind that is that wheelchairs are somehow confining, restrictive and, ultimately, a bad thing. The people who I know who are wheelchair users are not "confined" by their wheelchairs - they are confined when they can't get their wheelchairs serviced and repaired. 

This carries over into attitudes that people hold about people with disabilities. Many people view disability as somehow "inspirational" - the fact that a person with a disability goes out andlives their life is something inspirational to others. But again, the message here is that disability is the most horrible thing in the world, and that if a person with a disability manages to actually do something other than stting in front of the TV, they are an inspiration. 

People have often commented to me how they find my story inspirational, that I started losing my vision and yet still went on and had a career. I always ask: "what choice did I have?" My eyes started failing, and I still had to support myself and family, raise my children, and have a life. There is nothing inspirational in that, it is just how life works. As people, I think we tend to do the best with what we have.  I have no intention to be an inspiration to anyone - I am just trying to get by, day by day. 

So how does this relate to the blog?

Several people have asked, "Why is it called "Dances with Cancer?" I have been asked why I use the word "dance" instead of the word "battle" or "war" or"even just "fight."

If you have ever seen me on a dance floor, you know I am not a dancer. But then again, I am not a fighter. 

If I talk about how I am at war with cancer and battling cancer, it sounds like I have made the decision to defeat the cancer, and that I can in fact make that decision. I believe this is a fallacy.

Yes, I have decided that I am going to do what I can to heal and get past this horrific moment in my life. I hope to get back to some semblance of normalcy, whee I can have cancer-free time and not be so sick. I want that.

But if I start describing it as a war, the dynamic changes. 

The issue for me is, I know a lot of people who have had cancer, and HIV, and other serious diseases. Many of them are now gone. If I start describing my interaction with cancer as a war, it implies that all I have to d is be stronger than the cancer. If I can be tough and fight the good fight, I will survive.

But the reality is, what about the people who do exactly what I am doing and do NOT survive? There is an implication that there is something wrong, that they made a mistake somewhere and that, had they only used better techniques and been stronger, they too could have survived.

There are plenty of books about this, and I think they are mostly crap. There seems to be a belief that, if you have the right attitude, the right fighting spirit, you too can defeat anything. But what if you don't? Do we go to the memorial service and say, "Poor Daisy, she just didn't have the right stuff to fight cancer"? 

The reality is, cancer is random, and horrible, and inhuman. I can't fight it, because I can't even see it.  

what I feel I can do is try and dance with it. I'm trying to match its steps, maybe even get out in front and lead for a while. I'm trying to stay on top of the myriad of issues that arise as part of having cancer. It is not a battle, it is a dance, and if I can be responsive to what is happening inside my body, maybe I can ease my own suffering. 

I want this dance to end, because I'd very much like to sit out a few rounds. It's a very awkward and ungainly dance, believe me. At the moment, it feels like my dance card is very very full, and I'm trying to face each new step with some courage and grace. I don't know how well I'm doing with that, to be honest. But I'm trying my best, and I'm getting support from my friends and family. It's exhausting and painful, but I'm still on my feet, still swaying to the music and trying to keep up. 

 I hope this is something everyone else I know gets to avoid. No one wants to participate in this dance, believe me.If it didn't feel so overwhelming, it would be pretty much funny, the odd positions and the weird jumps and the stumbles. At some point, I'd like to sit. Walk. Run. Anything but dance.

So I'm going to bed, and hoping to get some rest so I can resume the dance tomorrow. As long as I'm dancing, I'm still here.