It's been months since I blogged. I watch students blog. I read others' postings and get sucked into Facebook discussions.
Was it three years ago when I started working on The Sweet Lowdown, hoping to change the world? The world was bigger and more ferocious than I had imagined. It didn't want to be changed. The wounds from Sweet Lowdown are slowly healing, but each foray into social media reminds me how hard the rest of the world will fight to maintain the myths and stereotypes. It's brutal out there.
Linking obesity with diabetes is so much a part of the culture. It's in every news report. Every research study must contain the phrase, whether it has anything to do with what was studied or proven or whether the evidence even refutes it. We could jettison the Holy Trinity from Mass sooner than omit this phrase.
I hate the phrase every time I hear or see it. It's a malicious and dangerous phrase, leading to misdiagnoses, denial of access to insulin, test strips and education. It sucks money away from researching areas we prefer to keep hidden: PCOS, famine-induced diabetes. It blames and shames and makes everything harder. If you just ate right.... If you just got more exercise....(You would cease to be a problem). If you were just like me: Perfect. Lucky.
It's driven by fear. Augusto Boal said that the Oppressed become the Oppressors in order to escape (temporarily) their terror and agony. One does not need to outrun the tiger, only the person closest to the tiger.
I thought maybe we had done some good. My first visit to my endocrinologist after she saw the play we talked about how my beta cells were functioning. But six months later, she had reverted to her mantra. (This is what she knows, whether it is true or false; this makes her feel powerful and safe.) And once again the wheels of the bus grind me under. I am a series of boxes on a screen. When they are ticked off correctly, she gets a Gold $tar.
I've made some resolutions: I stopped following the diabetes sites on Facebook. Any comments I want to make, I'll make here. I don't think anyone reads this, so I'm safe here. Last November, I stopped taking the Simvastatin and the Levothyroxine and I've opted not to undergo colonoscopies or mammograms. They have labeled me noncompliant, but then what I do is never good enough. I still get the warnings of dying a horrible death. But if I do everything they say, can they make me immortal? Can they at least fix what is wrong? I didn't think so. Let's fix what's wrong, or at least not make things worse.
I want my life to be more than numbers on a medical chart. I want to be the one who decides which numbers to ignore. I live with those numbers every moment of every day. They glance at them every six months and move on. Why do they ignore the Cobb angles of my scoliosis tripling? Why do they tell me to "eat less, exercise more, lose weight" but never look at what I eat or how many dance classes I take or the fact that my weight and insulin resistance both rose on the two pills? Only I am looking after me.
So no more advocacy. No more blindly doing as I'm told. No more explaining to those who refuse to hear.
Last year's resolution was to sparkle more. That's one worth renewing, intensifying. I need to sparkle. To shine. To dance and sing. To write crazy things and ignore the crazies who critique them. To embrace and believe in good things.