Okay, I'm going to be honest about a tough thing... not the toughest thing ever in my life, but the current challenge: rheumatoid arthritis. It came on last summer after my thyroid swelled up and shut down. Thank god my mom had the same thing happen to her at the same time; she provided the road map. The backdrop is a thousand well-meaning people advising me to swim and do yoga, not understanding that this condition is an incurable autoimmune disease.
And here's the part that hurts the most: my hands. My typing hands. My connection to the world, my way of finding my own mind. I can feel it now as I type these words. Middle joint of left thumb, top joint of right index finger, other smaller aches elsewhere among the web of knuckles and the wrists.
Writing is the joy that saves me. It is better than any other activity for my pain because it reminds me who I am and keeps me in touch with all my past selves. It reminds me to look beyond the pain. (Oops, I tried to straighten my posture and the right shoulder and left elbow protested in response). Sitting up straight and the hips fire back.
This is a chronic condition but I'm in a flare up after diagnosis, which is supposed to be the worst part. I've graduated from pills like methotrexate and am waiting for a biologic injection treatment to begin, the new round of expensive wonder drugs that may put me in remission.
Some days I am grateful for my narrowed focus, pushed in on either sides by pain. "No" is much easier to say these days, but it comes with grief. Half the time I say no to things I wish I could do but know my body can't handle. This is not an old-person's disease. It is a chronic pain thing, and the presence of the pain is complex, interesting, and also maddening. Pain is a forest. Pain is a forest it's hard to navigate through when there's a seven year old on the other end of the couch nagging me to look up on Google the cheat codes for Mahogany City on Pokemon HeartGold on his DS. I feel like less of a mother. I had to miss most of a chess tournament yesterday. Probably even writing this is going to send me into the hell of pre-existing condition when I try to get new insurance. But it is what it is.
Yesterday I had a thought that comforted me, that spread relief through my body. I'm sure this thought would be maddening to many people who have a warlike combative stance toward their illnesses. But I don't "have" rheumatoid arthritis, because as a Buddhist I think I don't "have" a separate and encapsulated self. Instead, rheumatoid has become part of who I am. That's the route toward true acknowledgment for me. And that adds a layer of curiosity. What does a rheumatoid woman do? What does the rheumatoid body want? What is rheumatoid's favorite color? It's my body "attacking" itself, but even that language puts a conflict inside me that I'm not sure is there. It's a sign, instead, of my body misunderstanding itself, and oh lord is that an old story. That's one I can live with. It's hard, in a culture where solutions and blame are offered daily as our soul-food, to find space to become this rheumatoid woman in pain, a foreigner who doesn't want to do battle with her body.
