As many of you know, I was in Nebraska for a month, living and writing at the Kimmel Harding Nelson Center of the Arts.
Listen to me read the below here:
A brief note: I know that some of you may have been waiting for Part II of my mini-essay about remaining productive while living with chronic illness—that particular mini-essay has been delayed, and I think the piece will ultimately be better for it, though I apologize for the wait in the meantime. I’ve been mightily touched by the comments and emails I’ve received from folks about the topic; if you want to share your own experiences, please feel free to get in touch. And if you’re here because of my interview on Raise Your Hand. Say Yes.—I’m thrilled to have you! This (the Journal) is a good place to start, as is the About page. Hello!
As many of you know, I was in Nebraska for a month, living and writing at the Kimmel Harding Nelson Center of the Arts, with the good fortune of having been selected to receive a small stipend to work on some projects. I’d arrived with three major projects in mind: I was going to work on revising a 300+ paged novel; I was going to finish a draft of a big essay that was due at the end of February to one magazine; I was going to finish a smaller essay that was due in early February to another magazine. And I was also going to make the most of being alone—the previous few months had been a bit of struggle not only with my physical health, but also with my sense of self and some realizations about self-worth and how I feel about myself in relationship to disability. Big topics, in other words.
About a week before I left, I had some medical tests done. Background: I’d been diagnosed with fibromyalgia for years, and had been learning to live with a newly limited life with as much aplomb as I could manage (with much help from resources such as Grace Quantock and her Phoenix Fire Academy). In October, my issues with fatigue and illness reached new levels: I needed, at times, to use a wheelchair; I would become feverish and wracked with chills after searching for a pair of pants. After a phone call one afternoon with the brilliant writer Meghan O’Rourke, who’d written the pivotal (to me) New Yorker article “What’s Wrong with Me?”, I realized that it might be wise if I were tested for Lyme disease. And so I went to a Lyme specialist in San Francisco, had a consult, and arranged to be tested with the Western Blot, which is a highly sensitive Lyme test that I hadn’t had when I was tested for Lyme a few years ago.
So I was in Nebraska.
I took a lot of photographs. I didn’t go out much, but I did get lost one day in Nebraska City without gloves on in a dress with no tights on (the above photograph was taken on that day) and found out when I got back to the Center that it was actually -4° F outside, at which point I thought, “At least I wasn’t exaggerating to myself,” and sat in front of my cute little space heater so that my fingers could defrost.
I had an autoresponder on for email, so I didn’t deal too much with work, although I did have the beautiful privilege of spending some time working with The Darling Tree’s Jo Klima on the graphic design for my multimedia program, Rawness of Remembering: Restorative Journaling Through Difficult Times. As is the case with most things, we teach what we most need to learn; I’ve been doing more restorative journaling in the last 6-8 months than I can say. I’m sharing a tiny peek of what we’ve cooked up below, and if it sounds interesting, hop on over here to be notified of developments. My autoresponder gathered up all of the email that normally gives me palpitations, and put it in a basket in a corner of the room so that I could spend my 3:30 AM mornings (yes, that is not a typo) pit-pattering over to the kitchen to put on the kettle for a French press of coffee, doing a meditation, and sketching out my day.
It really was a beautiful time, and I was so grateful for it. I had a massive white board in my writing studio, which I made judicious use of, as well as a corkboard for my one hundred index cards about murder and schizophrenia. I finished the smaller essay, which is called “The Real Stuff” and was published in mid-February in The New Inquiry. I mostly finished the larger essay. The most extraordinary happening was realizing that I was going to—and I still can’t really believe I’m doing this—overhaul the novel, which has already taken up five years of my life, and apparently aims to take up a bit more. Oh, writing! I joke, but there are times when it feels like banging my head against an especially unyielding wall, and other times when I feel like I’m flying. While there, I also received a thank-you card from someone I helped with an application for a writing grant; she’d received $19,000 and wanted to let me know. So that happened.
Other things that happened: I ate hash browns and sausage in a giant restaurant where literally everyone in the restaurant knew the name of everyone else who entered it, with myself being the exception to the rule, and everyone would say, in chorus, “Hello, ____,” to each new person when the door opened. I had bad nights of nightmares and sleeplessness. I spent days in bed, unable to think or move much. I joined a postcard art project that another resident, who was a visual artist from Berlin, was doing. I began reading Demon Camp by Jen Percy again, which I’m convinced is one of the best books I’ve read in the last five years.
The day before I left—so I was rushing around doing laundry and trying to pack and getting rid of things that wouldn’t fit into my suitcase—I found out that I tested positive for Lyme disease. Most of what I knew about chronic Lyme at that point (and I only know a tiny bit more now) was from the documentary about Kathleen Hanna, The Punk Singer, in which we see the history of Bikini Kill and Le Tigre and then learn that Hanna essentially disappeared from the public eye because she was very sick, and finally diagnosed with chronic Lyme. There’s an unforgettable scene from the documentary where she’s obviously in excruciating pain, but has insisted on turning on a camera and recording the experience of her illness.
So I learned that the day before I left Nebraska.
The tremendous thing about that is the amount of abundance that has come into my life now—people are offering their own experiences and connecting me to other writers who have Lyme. And before I went to Nebraska, I was feeling very low about myself. My self-esteem was shot. I was insecure to a degree that I feel awkward revealing about myself.
Being alone for a month brought me back to myself, in a way. I don’t think that I would have been able to receive, either energetically or literally, the support offered to me after the diagnosis if I’d been in the same headspace I was in when I left San Francisco. In Nebraska, I learned, somehow, that I am worth caring for. I also learned that I have a pesky spirochete running rampant in my system.
What next? I don’t know. That’s life for you, I think.
A few pieces of news. (I know, more news!)
I’ve been illustrating quotes and selling them in the Print Shop. Here is one of them. I’d be honored if you’d bring one into your home, or gift them to someone you love—they’re available as greeting cards and prints and things.
While in Nebraska, I began to put the finishing touches on a workbook and audio package that I’m delighted to be able to share with you. The content is based on a self-developed methodology I’ve used for over five years in order to not only get myself out of creative ruts, but to begin new work as well. And yet Where’s the Electricity? isn’t a plug-and-play system, because creativity and artistry don’t work that way. Instead, the workbook and audio allow you to feed off of your own obsessions and themes in order to find the wellspring from which you can create your best work.
Find out more about Where’s the Electricity? here. Pre-order available.
And as of today, my appearance on Tiffany Han’s beautiful podcast, Raise Your Hand. Say Yes. is now available on iTunes and on her website. If you want to hear me chat with Tiffany about writing, creativity, resilience, radical sincerity, and the TV deal that almost was, visit the episode here.