If only life had warning signs . . .

I was in pain, but that couldn’t fully account for my mood: crabby, desiring more than anything to be alone and unbothered, sadness welling up, tears pooling suddenly so that I’d have to blink blink blink to keep them in my eyes where they belonged.

Then she said, “I imagine you’re still grieving.” And I fell apart, sobbing in the middle of what was supposed to be a meeting about church business.

Back home, I googled “arthritis grief.” On Annette Beach’s blog I read: “Obviously the disease makes it difficult, but added to that is knowing the old Annette is gone and she’s never coming back”—again I burst into tears.

Grief, indeed. What a disappointment to realize that in the six months since my diagnosis all my courage and optimism was really denial.

Six weeks into my treatment with methotrexate, it had been like someone flipped the arthritis switch off. I was the old me again, nearly pain-free. Right on! I was beating this! Then, six more weeks and someone flipped the switch back on.

It began on a Saturday when I slept most of the day away—two stretches of 4-5 hours each. The next day, the pain started ramping up, and by Monday morning I could barely walk. When the pain didn’t let up after a couple of days, I finally emailed the doctor. He put me on a six day burst of prednisone (which, I discovered, totally messes with my emotions—think PMS with an emphasis on weeping). The prednisone hammered the flare, and I felt good again.

But then, in the weeks that followed, the pain and fatigue crept back in—this time in stealth mode so I wouldn’t recognize what was happening and bring in the big guns again. Add some discomfiting new symptoms—an electric current down my leg; a tendency for my left foot to drop so that I’d step on the side of it and just about put myself on the ground; and a sensation of cold on my left hip that had no correlation to the actual temperature of my skin. Every night, pain woke me, a stone in the center of my sleep. And the more exhausted I became, the less I could cope with the pain.

Undone by lack of sleep, I called the dr. again. He prescribed neurontin (a drug that works on nerve pain) and hydrocodone (vicodin) to get me some sleep. He also tested me for adrenal insufficiency—a sometimes after-effect of steroids which can cause fatigue and (WTF?!) joint pain. The results: adrenals armed and ready. So what about the pain? I asked. What pain? said the medical assistant. Helloooo!! Is anyone listening?

And that, my friends, is when the walls of denial began to crumble in earnest. This thing is not going away. My body has changed. The future I've imagined must be revised, except I don’t have any way of predicting the parameters of that future. Or, as my late mother would have said: Shit!

What does grief look like in a chronic illness? For me it looks like bitchiness, impatience, and spontaneous weeping, all tucked beneath a pasted-on mask that says, I am fearless, strong, and trustworthy, and all is well. But that mask is laced with cracks, and nothing makes people more nervous than when our social masks begin to show some wear and tear.

And then there is that blessed complication: the good day—or two or three—when the pain lets up and your joints feel lubricated, and you walk and stoop and turn like a normal person who doesn’t have to think about every movement to ensure you don’t stress a joint or increase pain. The clock runs backwards and your joints are 43 again. And you start to think maybe it’s not so bad, and really you’ve been exaggerating. Or better yet, maybe the doctor has it wrong. Maybe you’ve imagined the whole thing. Everyone has aches and pains, right?

But those good days are at best a tease, at worst the basis for total delusion. Sometimes this feeling—of being normal again—lasts a day or more, sometimes it lasts an hour. But it never lasts. And no matter how much analysis you apply, no matter how many explanations you invent, you can’t figure out why you’re hurting again. And with the loss of that good day or hour, the grief starts all over. And it’s intensified by the fact that you realize—again—that you have virtually no control over this disease and what it’s doing to your body. Sure, you can eat well, exercise, listen to the doctor, take the meds, but no one—not even the doctor—knows what the disease will do to you. You’re just along for the ride.

The only comfort I’m finding these days is the knowledge that grief does run its course. And while this kind of grief will run its course over and over again, the few folks I know with autoimmune arthritis—including my father—show me that one gets more skilled at navigating grief. At the YMCA therapy pool, J tells me that you never stop grieving. Every time you lose one more thing you get to do it all over again. And sometimes, it’s the little things, J says. She wobbles between two arm-braced crutches on an ankle so destroyed she must wear a brace to bear weight on it at all. Yet for J, grief undid her when she could no longer step into a car, but had to sit on the seat, then pivot her body around.

I understand this. The reality that it will never be safe for me to ride a motorcycle on my own, and that we’re not even sure if I can tolerate riding behind my husband—these things are discouraging. But it’s those increasingly common days when I have to sit down to put on my pants—as opposed to standing on one leg then the other—that make me want to weep. Please understand: it’s not the loss of that minor ability itself that I’m grieving. Compared to J on her crutches, my needing a chair to get dressed amounts to a big boo-hoo. Call the waaaah-ambulance. Rather, it’s what that loss of ability represents: a future that is largely defined by forces I can neither see nor control.

And really, we are all in that same boat aren’t we? At the mercy of unpredictable currents. But most of us get to pretend we have a hand on the rudder, and often we convince ourselves that the currents will generally be kind. Autoimmune arthritis strips that delusion away. No wonder there’s grief. But perhaps there’s also some value—some redemption, even—in being forced to face the reality of our powerlessness. I think of Saul on the road to Tarsus, his three days in darkness. I don’t imagine it felt good or safe until after the scales dropped from his eyes.