The Lived Experience

I read a blog post recently suggesting that those of us with metastatic breast cancer are unfairly protesting the lack of research dollars spent on research on metastatic breast cancer. The author talked about the improvements in lifespan for people with metastatic breast cancer than we were 10 years ago, and thus we should be glad about that.

The problem is, the actual data is that the median survival from diagnosis with metastatic breast cancer has barely improved, and is still only about 3 years. Which is why my immediate reaction to the article was “excuse me for not being excited that my kids will be traumatized by my death a few months later than if we were going through this 10 years ago.” I’m sorry, cancer research community–I know you’re trying hard, and I appreciate your efforts. But it’s not enough. It’s just not nearly enough. You need more resources, or I am going to die of this disease.

I get that it SEEMS like people are living a lot longer with metastatic breast cancer. Because, there ARE some women who are living with their disease for 10 or 20 years, and those are the women you meet who have metastatic breast cancer. But the reason those are the women you meet? Yeah, that’s because the other women are dead. Let that sink in for a moment, and then tell me science is doing enough.

I was watching MSNBC the other night, and Joy Reid was on talking about the case of a black teen who was the youngest person ever executed in America, and how a judge exonerated him this year, decades after his execution. And she started talking about race in America today, and how there are many people in the white community who look at how far we’ve come from, and say, “You should be happy about that.” But for the black community, their lived experience is how they see race relations in America, and their lived experience of racism is still pretty awful. That’s why they are marching in the streets.

My lived experience with cancer is this: short of being hit by a bus (which isn’t appealing), I am going to die of this disease. I have to wake up every day knowing that unless there is a miracle scientific breakthrough, my children will be left without a mother before they reach adulthood. I will not live to see my grandchildren. And people have the gall to say that we’re doing enough? Because my life expectancy has improved by a few months vs. women diagnosed 20 years ago?

When someone is struggling and they are begging for help, and you say, “But it’s so much better now than it used to be, you should be glad about that,” please don’t be surprised when their reaction is an angry one. Don’t be surprised when they start a movement like ACT UP, or Occupy, or they march in the streets demanding justice for Trayvon. That anger comes from their lived experience, and their real pain that is happening now. Suggesting things are better than they used to be means ignoring people who are suffering now, and no good can come from that.

One thought on “The Lived Experience

  1. Why do Americans try to put a positive spin on everything.freakin’. thing?!? Sorry I missed you yesterday, but there are more visits in the works!

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