Jay Lake (jaylake) wrote,
Jay Lake

[personal|cancer] Why I write about cancer so much

Recently, in various online venues, I have been characterized both as oversharing and as being overly dramatic with respect to my cancer blogging. (No links, I don't want to embarrass anyone.) Beyond the cancer, I'm pretty sure I don't overshare otherwise, unless you happen to find my political opinions inappropriately strong or ill-expressed. If that is the case, I invite you not to read them. (I do [tag] my post titles for a reason.)

I have a very specific purpose in talking about cancer as openly and plainly as I do. That is to be as honest as possible about the long-term journey of being a cancer patient, without sparing any of the details. That includes the deeply personal, the downright embarrassing, the silly, and the icky. Stuff that's particularly TMI I try to remember to put under a cut so that, for example, my digestive and sexual dysfunctions don't just spill across people's desktops.

But guess what? Depression, fear, anger, terrible bowel problems and all the rest are part of cancer and its treatments. More to the point, they're a part of cancer a lot of people are very uncomfortable talking about. Including, in my experience, clinical practitioners in the field. For example, to date, four and half years in, I've met exactly one oncology professional who was prepared to have a frank and honest conversation about sexuality with me. That's after seeing eight different oncologists and about as many oncology nurse practitioners so far.

So in addition to the clinical stuff, I talk about the icky stuff. About the wretched cramps and the violent bowel movements and inability to reach or maintain an erection. Just like I talk about the depression and the fear and the social attenuation. Because this is what happens when you struggle with cancer over time. I put out a lot of clinical information about myself as well, mostly as a reference point and to provide context.

Who am I trying to reach with all this?
  • Anyone who has cancer.

  • Anyone who knows or loves someone with cancer.

  • Anyone caring for someone with cancer.

  • Anyone treating someone with cancer in any clinical capacity.

  • Anyone writing about cancer (fiction or non-fiction).

For some readers, this is oversharing. Well, ok. Read my writing posts and skip past my cancer posts if that's better for you. Don't take this the wrong way, but I don't care what you think about these cancer posts. Those posts on this blog are first and foremost for me, and as a close second, for the people who can benefit from them. Talking about my experience in exhaustive detail helps me cope. It also offers insight to people who sometimes desperately need that insight, or the words that come with that needed insight. This isn't my ego or my imagination talking, I know from the sometimes wrenching e-mails that I receive how much these words help some folks.

Is it well-socialized or polite to talk about this stuff? Hell no. Can it even be triggery for some people? Hell yes. But cancer isn't well-socialized or polite, and doesn't care if it's triggery. One of the very few positive things I can wring out of this miserable experience is using my skill at words to characterize the situation so that others can better understand. Oversharing, yeah sure. But it beats the hell out of shamed silence.

Welcome to cancer, one of the uglier corners of life.

As for being overly dramatic, see above. I'm talking about my experience. Sometimes my experience is dramatic — not in the sense of me being a drama queen and pitching a fit in a passive-aggressive bid for support, but in the sense of fearing for my life in a literal and immediate way. To the extent that I can do so while trapped inside, I document my emotional experiences as well and carefully as I document my medical experiences. Cancer isn't Interesting Soap Opera disease where one becomes artfully pale and acquires special dying person wisdom to dispense to one's family and friends before passing gracefully. Cancer is dirty and messy and ugly and crazy-making, a thief of body and soul. I talk about my sense of alarm just like I talk about my moments of acceptance.

It's my experience, damn it.

Besides which, cancer isn't trivial. It's the second leading cause of death in the United States (after heart disease), and something between a third and a half of people who are diagnosed with cancer every year will die of it as a result. It's not dramatic to be freaked out about having cancer, it's normal.

So follow along or not as it pleases you. I'll think no more or less of you either way. But grant me the integrity of my own experience and my right to document it regardless of your approval.

Tags: cancer, health, personal

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