A note to friends, family, rattlesnake hunters, debt collectors, doctors, business partners, famous film directors, prospective lovers, people who are acting like idiots at the moment but don’t always, and every dog on every corner now, forever, once upon a time ago:
As some know very well and some do not, depending on proximity and relationship, I am going through the very most difficult medical moment of my life right now at the exact same time that my father is trying to choose the appropriate moment to step out of his body. I am living five minutes away from my folks’ house, but my housing situation is not as stable as it needs to be, and I have been through three months — not three, really nine, or a whole lifetime, depending on how you count — of nonstop medical emergencies, both my own and others, lots of movements around the planet, and a constant reshuffling of medications, priorities, and all of the other things that make life such a fun and sometimes tricky game to play.
This is the trickiest time I have ever encountered, with the most important things in my life at stake — my own health, other peoples health, things I have worked on all my lifetime, or for years or months, by myself or with beloved pals — many, many, being very close to being funded or illuminated by just the people I want to fund and illuminate them.
Some of this is agony, and some of it is total, deep, lovable, hilarious, rolling, orgasmic, World Series-winning, whatever you want to call it fun. This is just a brief update to show you my face and tell you how I am, and that I love you, or that I’m about to punch you in the nose, depending on who you are to me. Aloha, mahalo, keep the aina ono and the malama pono, smooch, wow!
Almost five years ago I was diagnosed with CIDP by a neurologist in Palm Harbor by the name of William Huntley. The diagnosis has been confirmed and reconfirmed, by every test available and by other neurologists, including my current one, George Powell on Maui. The photo of lightning within and without a volcano above is the best representation I can offer for what CIDP feels like in the human body. It is an electrical fire throughout the body, it never stops, and the pain is unbearable. I wrote about it a bit on Facebook earlier this year.
Three months ago I returned from Maui, where I was well medicated for the pain of CIDP, which is genuinely agonizing, to Florida to try to help my mother get my father to the end of his life. He is in hospice care for pancreatic cancer and lung cancer.
My health insurance is Obamacare. It is the next best thing to having no health insurance at all, In spite of the fact that I have one of the most expensive policies they sell. The only medication that addresses my pain is ketamine. In order to try to have it here, I have spent hundreds of hours on the phone or in person with nine doctors here, with my insurance company, with the doctor who was treating me with prescriptions there, Riggs Roberts, who will now no longer prescribe for me because my prescriptions there have to picked up by a friend and mailed to me. That’s illegal under federal law, so Dr. Roberts would rather I die twisting and writhing in pain than potentially imperil his license and his right to print money by writing prescriptions for others.
Friends who could help me now do not. John Kiriakou, who I have written about for years here and elsewhere as he fought off the worst tortures of the American government for his heroic act in naming Bush and Cheney as the sources behind America’s torture of Islamic peoples, has recently sold two new series, one to AMC and one to the History Channel, one about his life in the CIA and the other an original creation about a mental hospital.
I have had a career as a screenwriter in the past, my agent at that time was Jeremy Zimmer, who is now the CEO of UTA. I am entirely capable of contributing magnificently to these projects, as a writer, a producer, a director, and in return receiving a paycheck, health insurance, a chance of living. Despite my stalwart support of my friend John while he was in prison, after, and every day since I knew his name on this earth, he does not know me now. He is a big shot, and little shots like me have to be left behind at times like this, evidently.
I can’t negotiate this pain and this monumental bureaucratic nightmare of being an American citizen in pain and trying to get out of it with zero help any longer. I’m fitty-eight, a honkie, sort of middle class. You’d almost think they’d care about me, absent as I am of pigmentation, kinky hair, or foreign languages, culture, beloved familial connections across the globe (I confess, happily, I have a few of those).
They don’t. They don’t just read what I write and run out and cut off my head for hollering at them as I do because they have a half an ounce of respect for him.
As they should, or more:
Or maybe they don’t care at all, that would be far more their style. Who are the devils around us, and who are our angels? Most importantly, how well do we know our angels?
I will be leaving my life in a way and of my choosing. If you have anything to say to me, anything you want from me, if there is anything I can do for you, now is the time to express yourself to me.
Good luck, everyone. I love the earth, but can not stay.
Leonard is asking a very good question here: just who the fuck are you, Lord God Allah Buddha Jesus the river the sky and the Great Mystery?! What are you intentions here, ffs?