I wrote this in March, sitting in a parking lot in downtown Seattle, scribbling on a yellow notepad that I’ve kept intentionally out of view since then and just pulled out from under a pile this morning:
Today is the day I will start healing. I don’t mean resting, which is what I’ve mistaken for healing since January of 2004, when I was first diagnosed with lupus. I mean healing. I don’t mean sleeping a little more and waiting for new symptoms to pass, only so I can redouble whatever efforts I’ve put on hold on the days when I feel a little more energetic. I mean healing: treating my body with kindness and care until I feel better once more, and then nurturing a constant awareness of and reverence for my symptoms so I can function happily, comfortably, and calmly with as few drugs on board as possible.
It was in the idea pile; I’d put it there thinking someday I’d write the whole story. I’d write about not having the strength to hold a coffee cup with one hand in the fall of 2003, and explain how I wrapped my forearms around the refrigerator handle because using just my fingers simply didn’t work. I’d remember sitting in an emergency room in San Diego, just married, wondering why they’d tested me for cancer, pneumonia, Lyme disease, rheumatoid arthritis, and a million other things, when I thought I just had a bad, bad case of carpal tunnel syndrome. It was in that hospital that I admitted, silently, that I knew something larger was wrong.
I’d write about how much lupus has guided my life’s path since then: how I chose personal cheffing over restaurant work, and now writing over personal cheffing, because The Wolf, as I sometimes call her, made it plain that daily physical strain was a bad idea.
I’d write about how she often dictates how much time and energy I put into cooking, how she insists I find food that comforts me, and how she and I clash every so often, me pushing hard toward some loosely defined goal and her barking at me to slow down, slow down or I’ll bring you down myself.
It might have made a great story, and still might, someday, packaged into a nice little bundle with a beginning and an end and a cute photo of her on the cover that somehow conveys how she can be both a loving, caring (if not slightly high-maintenance) creature and a complete terror at the same time.
But here’s the thing: there’s no ending yet. She’s still here, and she probably always will be here on some level, which means I should treat her as part of my life instead of as a story, an episode, a 3-year-long body-wide bout of PMS. To a certain extent, writing about a so-called lupus experience might suggest that it shouldn’t be part of my life, that it’s somehow all just an unfair misunderstanding.
But it’s not unfair, and for now, I feel that writing about lupus would in some ways be a failure to incorporate it into my life in the way I think I should. My wolf is not the temporary visitor I’d always hoped her to be, but she’s not really all that bad. Lupus is not usually fatal, or even really all that problematic; it’s nothing compared to what some of my friends and family have gone through. It’s a little like having an ill-behaved pet (and I should know); she just needs the right care.
It’s been almost two months since that day in March, and these days I really do feel more energetic, which means now I begin to find out how hard it is to listen to The Wolf when she’s not actively tearing me to pieces. Now, I learn. I learn how to live harmoniously with her, how to walk and sleep and eat and breathe and cook with a wolf.
Now I start healing.