Monday, February 4, 2013

Day 956: World Cancer Day

Today is World Cancer Day. I'm not entirely sure what that means for someone like me, except that it gives me an excuse to write something here finally, and I haven't felt like doing that for a while. According to the World Cancer Day website, part of the purpose of this day of awareness is to dispel myths about cancer. I feel like I've done a pretty good job of that over the years, as evidenced by the high level of discomfort that some have felt when reading these posts. However, I am intrigued by the four myths that have specifically been laid out for dispelling today:

Myth 1: Cancer is just a health issue
Myth 2: Cancer is a disease of the wealthy, elderly, and developed countries
Myth 3: Cancer is a death sentence
Myth 4: Cancer is my fate

I'd like to put a few quick words to the final three myths, and focus most of this post on the first one.

So, for myth #2, I would say that I never knew that cancer was considered to be a rich person's disease; I guess perhaps poor people, or those lacking health care, just don't live long enough with cancer to make it into the news? And clearly I am living proof that it is not a disease of the elderly. As for the developed countries part, there are so many issues that feed into such myths that I would rather focus on those than the myth itself: cancer rates and mortality statistics are directly skewed by screening techniques, available medication, and such things as the existence of hospitals and health records.

Now let me speak to myth #3: God, I hope not. But to everyone who has ever been told the words "you have cancer," it sure as hell feels like one. Even if you manage to beat some of the odds and live a very long life, you will always be a person who had cancer and survived, and that is different than being a person who never had cancer at all.

As for myth #4, I don't really know what to say. Cancer is my fate, in the sense that I had cancer, and I believe that fate is what happens. I hope this myth doesn't imply that I could have prevented cancer, by somehow being thinner or more active or happier or more awesome. Perhaps this is just to say that cancer isn't all of you, it doesn't define you, but that seems obvious to me. It's interesting to ponder the fact that people who are blessed with things often define themselves in part by those things, yet people who do not have things do not define themselves by their absence. Let's say you are healthy, or extremely fit--you take credit for it and call it a "lifestyle." Let's say you have money--you assume you deserve it, that you earned it. Let's say you are in love--you might feel that that relationship makes you special, carves a space for you in the world. But if none of those things or similar things are true, you are still yourself and still probably happy and most definitely not blaming yourself for it and crying in your beer.

That brings me to myth #1. Cancer is definitely not just a health issue. It's a community issue, a social issue, a political issue, a sexual issue, a friends and family issue, a workplace issue, an identity issue, an it's between you and your concept of God issue. Cancer is about money and power, gender and race, shit--it's about death and taxes and everything else. But cancer is not alone in this. The concept of the "new normal," which I feel was the subject of almost every single one of my 2012 posts whether I realized it or not, has been coined for cancer survivors, but we do not own it.

I have been uninterested in writing lately because I have been feeling very verklempt. (As an aside, I am so grateful for that word. Perfection personified!) I have been feeling as I did when I was a senior in high school, when so many things seemed behind me as well as in front of me and yet I couldn't see how to let the old ones go or move on into the waiting world. I felt like I was literally crawling out of my skin, and my angst was not a teen angst, but one based in a real and adult understanding of the hardness of the world. So many difficult things happened that year, and I wanted to get away from everything, but I didn't think I would be able to do that. So I would shake in my manic little body and when I couldn't take it anymore I would just leave--just walk the hell out of school, or get in my mom's car and drive somewhere and sit by myself in the dark.

And I feel like that now--but where can I go? I have clawed my way into the life that I wanted to have 20 years ago, no matter how imperfect it's been, and I don't want to leave it. I want more time to stay in it, in fact.

So what is responsible for this feeling that I have today and many other days? I started thinking about this when I went to see Gangster Squad with a few girlfriends, and in the middle of that almost humorously violent movie, I learned something about myself. The main character, a war veteran, talks about how he doesn't know how to do anything but fight, and he can't figure out how to be a normal person.

And I thought to myself, huh, me too.

A lot of people feel this way after going through cancer treatment. You are so focused on fighting the beast, and then you kind of "make it" but you don't know if that means anything, and now you are supposed to pretend like nothing ever happened and it's really hard. But for me, it's even more complex. I found out I had cancer when I was ALREADY deep into a focus on my own body--because I had spent the previous 20 months carrying and nursing a baby. Men cannot understand the extent to which you dedicate your body to your unborn child--not out of love or maternal instinct, but because you have no choice. Those babies are parasites. They are beautiful, but your body becomes a vessel for the sake of them whether you like it or not. Having a healthy baby becomes the paramount issue in your life. And then, if you nurse, so much of your daily routine revolves around feeding your baby that you don't even realize how your body parts and what they can do can define you and constitute work. And then of course there's everything else--the epilepsy, the near fatal car accident, the other medical issues that might seem relevant to someone else but aren't even worth mentioning for me. There's the people I've had to physically fight, the circumstances I've fought, the arguments I didn't know how to stop out of stubbornness or apathy or hell who knows what. I even picked a fighting career; I built my resume based on the idea that a few people could fight enormous institutions and social forces and somehow be successful. I've defined my life since age 6 as one that involved defying expectations and not backing down.

So what now?

What do I do now?

I'm not ashamed to admit that I have absolutely no idea. I feel a little bit lost sometimes. I have such a hard time with the small bullshit of life. I have a hard time dealing with false drama or fire drills or other nonsense. I am probably hard to be around because I think there's so much nonsense and bullshit and people think I don't care about them which isn't true. Now, let me be clear--I am not ACTUALLY unable to deal with any of these things. I am coping just fine and I know how to do and say the right things and play in the sandbox with the other kids. But on the inside, I just feel completely set apart from the things that most people care about, even my closest people. I have vivid dreams about eating. I think about exercising or sex hours in advance, planning what I will do and how I will do it. I hate being at work when there's snow outside because I could be playing in it. I walk for long periods of time by myself and if I don't I get jumpy. I look forward to my nightcap. I wish I could hold on to the moment right before falling asleep forever. One of my favorite ways to bond with my kids is to cook for them or play vaguely inappropriate music too loud so I can watch them dance.

Everything I think about life is about the body. I spend large chunks of time focused on the most basic aspects of being a live human being: walking, eating, seeing muscles move, forcing myself into a new breathing pattern, lovemaking, sleeping, and, incredibly, waking up.

But we don't live in a physical world. We live in a fairly virtual world. I have a thinking job. There's not a lot of manual labor that middle class people in the first world actually have to do. It's not even necessary to connect with people in the flesh. We talk about bodies as if they are commodities--we give them names and talk about how to get new ones and all the time I'm thinking THIS! This body that still works!

And I feel like a fish out of water, all the time. That's in part because of cancer. Cancer isolated me in the same way that it does other people--I lost some friends, people changed their interactions with me. It also brought me closer to other people, and gave me a voice, I suppose. Or at least it gave me a platform for the voice I already had. It brought me into another new normal and gave me survivor's guilt. But that feeling of separateness is not due to cancer alone.

I don't know how to change 30 years of fighting. I don't know how to be different. Maybe it's more than 30 years, maybe this isn't about experience at all but rather personality. Maybe the year old baby who somehow picked the lock on her dad's briefcase when she thought no one was looking was just destined to be this person going through life with her dukes up--I don't know. I really, really don't.

So I continue to do weird things. A short while ago, we had this crazy 70 degree day in late January. We were all warned that change was coming with a huge thunderstorm and precipitous drop in temperatures. That evening after work I decided to take a walk. I didn't take an umbrella. Gabe went to get the kids. It was drizzling the whole time I was walking, and then it started raining more seriously. I stopped into a deli to pick up some sandwiches for dinner and when I left, all hell had broken loose. I was soaked to the skin within half a block. It started to hail. People were running for cover. And I just kept walking, laughing. The bag of sandwiches was drenched. I could barely see through the rain. Later, I would have to literally peel my clothes off. There were enormous bolts of lightning and I could have called Gabe for a ride but I didn't.

When I got home, I asked if anyone wanted to put their rainboots on and go jump in puddles with me. The kids thought I was crazy, because they had been terrified that I would be struck by lightning or something, and Gabe was all, um no, I'm staying dry thanks. So I sighed and started getting undressed but not before he took this picture of me in my soaked clothes. I changed into something warm and fed my kids dinner, just like I should have done. But I wanted nothing more than to be outside in a freak weather scenario in winter feeling my body get wet and cold.

And to the person who honked at me because I jumped with both feet right into the river of water covering half of the street, what were you trying to say? Come on, you must know it too:

This hasn't happened before, and it might never happen again.

This--all of this.

Blink and you might miss it--that's one thing I do know.


  1. You wonderful underdog you! I wish I had realized your invitation to play in the rain applied to me as well as the kids. I would have taken you up on it! 

    Keep fighting. Topple the inhuman and powerful. Love life.

  2. Whatever you do, write
    don't change.