I've always thought of Lupus as the wolf inside me. In a support group early on, the moderator said that I should think of it as the wolf that walks beside me, rearing up it's head, but I can't quite buy that imagery as it swells me up like an eggplant and eats away at my bones. I just read about an English actress who documented her struggle and decline from the disease in a film called "The Wolf Within." She presented with symptoms but it took 4 years to diagnose, and, by that time, her kidneys were so damaged that there wasn't anything doctors could do. Like me, she was told that her symptoms were psychosomatic, and doctors dismissed her many symptoms as too diffuse to be a
"real disease." Most of the people I know with lupus refuse to be victimized by it, and it's the same with this young lady who chronicled her death to bring awareness to this crazy ass disease.
It's interesting, too, that she and her mother, who helped her film, talked about her personality changes--how she went from happy go lucky to anxiety ridden. This could be explained by being sick with a chronic illness, but I firmly believe that it's part of the illness--that it changes brain chemistry, too, though there isn't as much research as there should be on this subject.
Of course we try to make sense out of thing we don't understand, we humans. We try to create something out of disaster and despair, and I've seen so many inspirational people with the wolf inside do just that until their last breath and beyond. I know a woman who has the worst case of lupus the world has ever seen--the disease has affected every system in her body. The wolf gallops through her as it pleases but she's never let it own her. She laughs, and flirts and keeps everything on a positive tip, and, when I first met her, I wanted to be just like her. But I've come to recognize that my showing and sharing my sadness and despair comes with it's own kind of grace. I've been encouraged to "accept"my wolf, to become some kind of willow in the wind and bend as it runs through me.
But
I
can't.
Because it's a wolf--sly, wily, hungry, feral. One day it responds to acupuncture needles along it's back, sometimes it backs off with steroids for a few weeks, a precious month, and then there are the periods like the last six months where it paws and bites, nipping and growling, and puffing up, it's ruff standing on end. Times like now when I'm awake with the pain at 3 a.m., gritting my teeth and unwilling to break into the narcotics stash. How do you stop fighting?
