The Long View

Last Sunday, rain clouds skirted us all day before breaking loose their burden into this unseasonably wet and cold spring. The skies mirrored another kind of weather: how I’ve been feeling—physically and, to some extent, emotionally—as my pain has worsened again.

Since being diagnosed with autoimmune arthritis, one of the hardest things to accept has been how freaking long it takes to measure progress. At first, I was puzzled and irritated when the rheumatologist scheduled my regular appointments two months apart. Didn’t he understand how much this disease was messing up my life? And when I had my “Mac truck” flare (after 6 weeks of apparent drug-induced remission) he took it in stride, called in a prescription of prednisone, and said he’d see me in a couple of weeks at my next scheduled appointment. I could barely walk. For him it was all in a day’s work.

His relaxed approach to what felt like an emergency bothered me until I realized it just takes that long. With the medications used for autoimmune arthritis—DMARDs and biologics—it takes one to two months before you know if they are doing a damn thing. And overlaid on this can be an ebb and flow of symptoms that are unrelated to any conscious interventions by patient or doctor. (For more on this, see RA Warrior’s description of common patterns of RA). In the midst of wondering whether a new treatment is working, a few good days raise your hopes. A string of bad days dashes them.

Six weeks ago the PA increased my dose of methotrexate. Give it a month, he said. And at five weeks, I started feeling better. Not all better. Not like the miracle of my first response to the metho. But I was taking less Vicodin, sleeping better. I dared to think it might be working. Maybe one more little tweak could get me back to near-remission. Maybe I could avoid adding a biologic and just switch to injectable metho which gives you 30% more punch for your dose compared to oral.

I felt better for several days—just long enough for me to start trusting it—then the pain and fatigue ramped up again, right back where I started. At my next appointment three weeks from now, if things haven’t gotten significantly better, the doctor will likely recommend adding a biologic.

The unpredictability of this disease has been teaching me about living in the moment. And yet there is a tension between being present to the “now” and living the long trajectory of this disease. It reminds me of how the stories in our Scripture often have integrity of their own, but find their depth of meaning in the narrative arc of the larger Story of God and His people. A good day may mean the beginning of remission, or it may mean nothing. It’s only in retrospect that the story begins to take its shape. But like many of us, I’m addicted to the long view.

A few weeks ago, I found a therapist who specializes in chronic pain and illness. (I’ve decided that I stand the best chance of living well with this disease if I tend every aspect of my health—from dental to mental—with consistency and thoroughness.) She asked me to start charting my pain against things like sleep quality, physical activity, and emotional or mental stress to see if I can uncover any patterns to the pain. I’ve tried this early on and found paying close attention to the ups and downs in my disease activity tended to tip me into depression. My therapist has encouraged me to try again, but to do so with as little expectation as possible. That is, to treat this as an experiment which may, or may not, reveal helpful conclusions. The challenge, then, is to avoid trying to make sense of every moment as it happens. Right now, I’m just gathering data.

We are creatures desperate for context, for meaning. Diseases like autoimmune arthritis don’t follow a play book. My challenge at the moment is finding a way to be proactive without craving a long-range plan. More and more, I’m finding moments where that seems possible. I count as progress those times I’ve found a certain peace in lying awake, sleep held at arm’s length by pain, the night stretching on and on. After I’m done fretting about what the lack of sleep will do to me the next day, after I’m done being pissed off—again—that I have this disease, and after I release—again—the worry that this pain is the outward sign of the inward destruction of my joints, after all this, I’m sometimes able to simply be in a way that I’ve never experienced before. In those moments, my pain doesn’t need to have meaning. It simply is. And there’s a trust that this long night contributes somehow to the arc of my life and to the way this life fits into God’s Story.