I’ve been drafting this post in my head for the last several days, so I might as well try to capture it “on paper.” It’s an official snow day, so that carves me a little extra time.
It’s been a crazy busy quarter, the way fall quarter always is. A whirlwind of fast-moving classes, evening extracurricular activities that I feel (or am) obligated to attend, trying not to lose the momentum on my research and writing, and generally busting butt to keep it all together. Unbelievably, we’re already in Week 7 of 10. In the background is this new reality of Rheumatoid Arthritis, this mystery disorder that medical science doesn’t understand, which crept up on me when I wasn’t looking, wandered around the joint(s), and decided to set up camp, mostly but not exclusively in my left wrist. It’s a nasty character, let me tell you, and the scariest thing is that most of the info out there points to it potentially getting much worse, but who knows when or if.
It’s like a scruffy, unassuming regular in the bar, who no one knows is a master vampire.
I’ve made a conscious effort to learn as much as I can about the “disease,” talk to people who live with it, and do my best to make empowered, informed, and proactive decisions in the larger context of a medical system that is anything but empowering. I’ve sifted through a frankly overwhelming array of websites, support forums, medical journal articles, alternative healing resources, and a book about the less conventional theory that R.A. is caused by an infection that can be treated with antibiotics and diet/lifestyle changes. At present, I’m experimenting with the latter approach, which means I’m on 100 mg/day of an antibiotic called Minocin, and have drastically reduced dairy, sugar, processed foods, non-organic meats, caffeine, and alcohol. (Can’t hurt anyway, right?) I’ve also begun a rigorous Bikram (hot) yoga practice, started taking a variety of dietary supplements, and paid a lot more careful attention to how stress impacts my life. In short, I’m experiencing something of a paradigm shift as a result of R.A. I’m not quite at “grateful,” but I do think it’s worth denoting some of the lessons. For instance:
The words “chronic,” “degenerative,” “disabling,” and “incurable,” are extremely unhelpful. It is a real exercise in discipline to consistently come across them and not freak the f*ck out. I notice that a lot of people, and a fair number of professionals, seem attached to these words, though the words also get paired with “treatable.” That’s a bit more encouraging, except that it in turn is paired with “chemotherapy” and “biologics” and “indefinite,” and other scary words. I have searched well into the 10th page of Google searches and found precious few stories of individuals “overcoming” or “curing” R.A. I must say that I hold onto these stories for dear life. Anyway, the challenge is batting the ugly words out of my consciousness, so as not to be paralyzed by them.
I am grateful to have R.A. over the alternatives–like M.S., Lupus, joint cancer, fibromyalgia, and other very frightening stuff that can have similar signs and symptoms. Compared to those, R.A. seems manageable. Related to this,
R.A. increases my compassion for my own and others’ pain. I’ve never been much for pain–which is to say, I’ve never felt as attached to my physical pain as others I’ve known, nor has it been a way for me to secure attention. (Emotional pain, I have a more complex relationship to, and I’m aware that that may, in fact, be linked with the R.A.) Of course, this relative freedom from pain-identity is partly because I’ve been lucky enough to have lived a mostly pain-free existence for 40 years–thank my incredibly lucky stars. But since R.A., I’ve been living with pain–gnawing, regular, always-there, wakes-me-up-in-the-morning pain. It increasingly hurts when I write at my keyboard, which is frightening because that’s about 99% of how I earn my living and feel my own creative presence in the world.
It takes some getting used to. At first it made me cry, especially in the mornings. But I learn that I can, in fact, live with pain–at least so far. I’m kind of getting to know it, abiding its presence while managing it as best as I can. I feel freest from it when I’m doing Bikram yoga, even though some asanas make me acutely aware of it. I also learn to release it, and to let my blood and body flush it through, let it go, while also trying to honor its signals. I become aware of how hard we all work to avoid pain, and how much additional negative stuff is generated through that avoidance. Now I try to breathe through pain, to move a little closer to rather than away from it, and when I do that, it somehow calms, has less power.
Through R.A. I realize that my pain is the tippy top of a gigantic iceberg relative to what other people live with every day. And each day my respect grows for the ability of so many human beings to endure pain gracefully. There is a woman in my building, whose name I shamefully don’t know, a professor with some kind of muscular disability, who looks to be in considerable daily pain. She moves extremely slowly, with the help of crutches, and her face reveals years of effort. But she always smiles and says something warm to me when we pass. How does she do this? How does she not give up?
I am allowed my experience, but I have comparatively so little to complain about. I don’t just know this rationally; I feel this as a result of R.A. People suffer hunger, homelessness, emotional neglect, disfiguring disease, chronic depression, endless war, intimate violence, massive disability, exile, death of children, loneliness. R.A., in the context of all that I have, is nothing. I have love, support, health care, 99% of my physical body still very much intact. I have all my faculties, education, a satisfying career, children in my life, sweet, understanding friends and partner and family. I have everything in the world, and even if R.A. gets worse, it’s not going to take those things away from me. What I feel, instead of unlucky, is fortunate beyond the bounds. Sometimes I get cranky and forget. But mostly, R.A. reminds me.
R.A. teaches me to listen inward. There is so much information out there about what I should do, what I should change, how I should behave, who I should listen to. But I somehow know that the only real answer is to listen inward. And to be able to do that, to access that quietest inner voice, even that faintest, whispering body-voice, I really do have to take control of the way I am living. I can’t hear the voice over the crescendo of stress about email and appointments. I muffle it if I am running myself ragged. I lose it if I am lying in bed at night, worrying over everything. But I can hear it in each second of concentrated, sweat-dripping attention in yoga, as I look at myself in that big mirrored wall and remind myself, as often as I can, that I am strong, beautiful, and able to move into each challenging posture. After 90 solid minutes of showing up in each moment to the practice, for me and no one else, but with compassion beyond me, I can hear my body in the silence. I can feel where it is out of whack, and I can attend to bringing it back to center. In those moments, it feels obvious that the more I can live this way, the more change is indeed possible from the inside out.
I’m not saying I wouldn’t give the R.A. right back to the bestower if I could. I’m saying it’s a teacher, and I’m learning.