Lupus is a creation of mine, its own story really, not one of which I am proud, as its writer, but I have been its source of life for the last 35 to 40 years, maybe even longer.
It is not possible to note the day my lupus gene switched to on nor is it possible to know why I have the gene or what activated it, if anything. It simply is. That part of the story has never mattered to me, even before I knew about the Tao or Zen.
It took me most of my life to understand I am not my lupus and that autoimmune disease is its own story, one steeped in imitation and deceit, usually disguised as flexibility and malleability. Separating what is the lupus story from all I am has been delicate and sometimes, seemingly impossible.
Through the Tao and Zen, I have come to believe my body is my soul having a physical experience, which gives me, a writer, the luxury of viewing lupus as story, a structure I do understand. In all the ways I have viewed lupus, it never occurred to me to view it as a story until very recently.
Lupus really does have plot points, conflict, a protagonist and an antagonist, all tools of my trade on my turf. I just may have the advantage here for the very first time.
In some ways, I have had a long life with lupus, if knowing lupus by other names counts. Lupus’ ability to mimic so many other illnesses along with my gullibility in believing one misdiagnosis after another are extraneous chapters but there is this: my heart never believed any of those labels.
In the lupus story, my heart is the protagonist and my brain or ego is the antagonist, the one that drives the conflict in every story, and all stories have an antagonist and a protagonist locked in a conflict box.
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As the lupus story opens, my immune system produces antinuclear antibodies to fight infection and viruses, just as it should, until we reach the first plot point: a normal immune system turns on itself and begins to attack the very body it defended for years, for no apparent reason.
This relentless war for the body continues for years under various guises–multiple sclerosis, migraines, mixed connective tissue disorder–until Sjogren’s wipes out the salivary glands to pave the way for lupus.
As we reach the midpoint of the lupus story, the brain discovers that it, too, is under attack and turns to the last bastion of hope, the open heart, the remaining connection to the spirit that animates the soul’s body.
I do know that in any story there is one more major plot point before the conclusion, and the lupus story is no different. I don’t know the last plot point nor do I know the conclusion but I have this: the structure of story has given me some of my first moments truly away from the physical battle, and I know I am so much more than the lupus story.
ROW80 Sunday Scheduling
I finished reading The Night Circus by Erin Morgenstern and may write a review for an upcoming blog post; however a very fine writer, Stephanie Carmichael, wrote an excellent review that you may read here. I cannot imagine what I could add to this review. The Night Circus is one of the best novels I have ever read and am considering purchasing it (I borrowed it from the library) as it is a book to read and re-read.
I continue to write at least 500 words a day, mostly nonfiction, and I reached my goal of scheduling blog posts so I am not writing to deadline on Sundays and Wednesdays. This next week will be the dismantling of my novel’s first draft, which I plan to have finished by April 22, 2012 as well as a rough outline of its scenes so I may begin “plotting” the novel’s major points. Unlike the lupus story, I actually do know how this story ends.
For the rest of this round, my goal is a weekly total of 2500 words, as I do not know how long it will take to plot the novel so I do not know when I will start the actual writing of the second draft. You may read more about my second Round of Words in 80 Days here.
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