A friend of mine recently died. She was about my age, and had been battling brain cancer as long as I have. I only met her once in person, in Florida. She connected with my poetry and hooked me up with some publication opportunities. They were not for prissy Ivy League college journals. She got me published in a fairly hardcore mag, along side tattooed Rubinesque vampire chicks and hardcore satanic metal bands. My friend liked hardcore. She wrote some pretty intense stuff, snuff stories and such. That was just one of her facets.
In the brain tumor world, she assisted, encouraged, and pointed thousands of people in the right direction. She was kind and generous, always doing for others. She put off radiation until it was truly a last resort. I worried her decision would lose her to us too soon. Maybe it did, and it doesn't matter, because, really, now it just sucks that she's gone.
This is what happens when people cannot get access to the help they need when they get sick. The reason I say this is because before she got sick, she worked for a business whose owners embezzled payroll taxes. So when she applied for social security , she was denied Social Security Disability and Medicare. There wasn't a thing anyone would do about it. As exhaustive a researcher as she was, she never cracked that nut. She had Medicaid, and the family, beaten down by the recession (depression) skated along the edge all through the last years and days of her life. I never could get over how unfair it was that she couldn't ever get Medicare, and I did, and still do have it. And it wasn't because she didn't work, it was because her bosses were assholes, and her safety net had some pretty big holes in it.
As we debate national health care, think about people like my friend, who never really got a fair shake. She got herself into numerous clinical trials, but how much of the gold standard treatment she needed did she miss? A lot, I would expect. She liked the idea of possibly helping the others by participating in clinical trials.
I miss her, I miss the way she posted cool music videos on Facebook, her passion for intense poetry, the way she spread so much love. I just can't help focusing on how unfair it is that she never had access even to a meager safety net that she really deserved, and no one was able or at least willing to help. There are two kids who have lost their mother and a man who lost his true love. They're probably glad she's not suffering, but still, it's all so sad.
Where do we draw the line on promises to our own people? Niki didn't get to step past our line in the sand. We've lost her and we're angry.
