Speaking Out and its Price

I’m exhausted and stressed and sad and angry. I try to keep my posts here focused and positive, but it’s really hard at this point.
I was contacted last week by the Organizing Director of a healthcare advocacy group to see if I would be willing to be called upon to speak to media or politicians about the loss of the ACA and what it would mean to me. I said yes.
I saw a tweet last week for two journalists writing an article about how the repeal of the ACA affects game developers. When I pinged one of them, he said he didn’t have many people with employer insurance willing to speak and asked if I would do an interview. I said yes.
There’s a flurry of Facebook posts and tweets debating whether the ACA repeal is REALLY choosing money over life. I feel obligated to speak in those situations because the answer is a clear YES. They are choosing to save money over saving people’s lives.
Why am I taking all of this on? I’m constantly aware that my choice to speak about my health situation means I have a voice where others don’t. Many people with chronic conditions are afraid to say anything in public because current or prospective employers could find out. The situation is much worse for people with deadly conditions, and then unimaginable for people who have terminal illnesses. Just finding a way to keep living in that situation is very difficult. And now we’re dealing with the immeasurable fear of losing our health insurance.
I choose to speak because I have to. It’s the deal I made with myself when I was first diagnosed with cancer in 2012. But every time I speak out, I have to say the words “incurable cancer” again. I’ve probably said those words a hundred times in the past week alone. I’ve cried more in the last two weeks than I have in the past six months.
I’ve seen my friends speaking out too, and I appreciate it more than I can say. You’re helping to bear the burden of those who can’t speak, or whose voices are so weak and tired from the simple struggle to survive that they can’t be heard above the shouting. Please keep fighting–knowing you’re there beside me is what helps me keep going even during the most difficult times.

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