I haven't been around in weeks and I've missed this place. I've been pretty sick the past six or seven weeks, but when I woke at 4 this morning to throw back a dose of the HIV cocktail one of my docs in a "Eureka!" moment thought might help me whip this illness and learned that the Senate plans to drop the public option from its health-care reform bill, I could not possibly go back to sleep.
As some of you know, I was diagnosed in August/September with Cushing's disease, caused (in my case) by a tumor on my pituitary gland. And my insurance company, Blue Cross Blue Shield of North Carolina, has been a real pill. And I don't mean the good kind. I'm sick as f*ck and still have two full-time jobs, sick as I am, because if I don't try to keep that up, I'm going down.
Cushing's comes with a bright and starry constellation of medical intrigues, one of which is an immune system that's out of whack. So when my college-age younger daughter came down with mono, the Epstein-Barr virus antibodies in my blood from my own youthful case of mono were reactivated and triggered an automimmunological firestorm that swiftly became a bacterial infection as well as a viral and retroviral mess.
Until last week, I tried to keep myself in the two-job game. I worked short hours at my weekday job, because I had put in a kabillion-jillion hours earlier this fall on a massive project and had goodwill comp time. I worked very short hours at my night/weekend job, and my employers (a trio of local families who own the arthouse theater where I'm marketing director) have been saints, continuing to give me a paycheck that reflects way more than the work I'm able to put in. They also hosted a fundraising weekend when we opened Michael Moore's "Capitalism: A Love Story."
But last week my docs finally grounded me entirely. The nurse who has been calling me every day to check on me said I could either drive home immediately or she was sending an ambulance. She talked with my college-age daughter, who took all the brooms, mops, rakes, and other cleaning supplies out of the house and asked my neighbors to hide them in their garage so I wouldn't work at home while she was at the university or at work. (She's a hoot and she's mighty, but I did win the brooms back.)
My voice has gone underground since late October/early November, though I did manage to get a bit of a croaky one for a couple days in November and used it to canvass for health-care reform when Organizing for America arranged a North Carolina Obama Campaign Reunion Canvass in my honor, with former campaign staffers flying in from all over the U.S. (Seattle, Chicago, New York, California, etc.) for a day of knocking on doors and making calls to support robust health-care reform featuring a public option.
I still make my weekly calls to selected senators and representatives, starting calls with a caveat about the laryngitis and increasing weakness of my voice. The calls and postcards are exhausting, but for some reason there are opponents to sensible health-care policy and they've turned this into a marathon battle and I'm not about to play the attrition card.
Several Kossacks and other political community members have visited, called, written, and otherwise offered support. They've brought books, books on CD and audible.com credits (sometimes I'm a little too weak to hold a book for long), tea, soup, hotdishes, fruits and vegetables, candles, juice ... the list is endless. One of my blogging friends even brought a tabletop Christmas tree and helped me rearrange my living room so I could sit in a place where I could see the tree and my growing little rain forest of plants from my easy chair.
The astonishingly beautiful and meaningful quilt that Sara R and her sister Ann made for me with the help of the Kossack community is here in my living room, keeping me snuggly warm. Every time I look at it, I see new details that Sara and Ann selected: buttons that remind me of my grandmother's Depression habit of reusing buttons from worn clothing, squares that feature animals of fierce strength and wisdom, plants and flowers to keep me filled with the wonders of continual growth, fruits and vegetables for health, popcorn and film reels signifying my cinema job, and books to signify the education writing/editing job.
Last week, I had a follow-up call from one of my state representatives, who's looking into a matter of insurance law in North Carolina. She stopped midway through a sentence and said, "MsSpentyouth, just tell me what to do. You've put in your share of work on this and you're tired. Just rest. Let me take this from you for a while. It's my job." I cried, though it must have sounded a wreck to her, this croaky old wheezy woman sniffling into the phone. And the next day I had a call from the N.C. Department of Insurance with information I needed, and a turkey tetrazzini and greens-and-berry salad dinner delivered to my door from my representative.
My local newspaper and its community have featured me several times in articles about people who need health-care reform and need it quick. Even weeks later, I still frequently get calls and letters from people who, like me, are battling their insurance situations (or lack of insurance situations) to get the care they need. I have no voice to speak with them, but I listen and whisper my encouragement for them to stay strong and link with the support of others to share the fight. Sometimes it's a wonderful thing to not be able to dispense wordy advice or state an argument but just to listen and be present for someone who is struggling so fiercely and in such great need of care. On Thanksgiving Day, a 75-year-old former teacher found my telephone number and called in tears because she was too weak to finish cooking her family's Thanksgiving dinner without her medications, which she had foregone this month to be able to pay for her great-grandson's asthma medications and two doctor visits after his mother had lost the job that insured him and couldn't afford the COBRA payments. I sent my daughter over to her house with information about HealthWell Foundation, which offers stipends to qualified people who cannot afford medications or the copays on their medications.
It's taken me several hours to write this update. But I'll be damned if I'll give up the public option without a fight to my dying breath. Sick or not sick, I'm still an American, goddammit, and I should not have to leave my country or just let myself and others die because we cannot afford health care.
So I'm still in this game. And I'm not giving up. You want another Brain Tumor Bake Sale at your office to shame you for not talking to your constituents about what they want and need, Senator or Representative? You want that press about how your sick constituents had to set up their own freakin' folding table outside your office to raise awareness about the public option because you couldn't be bothered to talk with real people? Well, you're on. Voice or no voice, exhausted or not exhausted, too weak to read or rake my own damn lawn, you're on.
The card table's already in my car, my posters are ready, the Moon Pies are just a grocery store away (ready to be labeled with the stickers "We're not asking for the moon, just quality health care that's affordable and accessible to all. Call your Congress member at 202-225-3121."), and I know where your offices are. You might have to strain to hear my voice, and I might not be able to be out there for long, but you're on.
We will not lose this fight. You're not driving me out of my own damn country, and I'm not abandoning others to the fates left to them by bloodsucking insurance companies and the lying liars who get lobbied by them.