Tuesday, April 25, 2017

Lyme Is Not the Problem

I was recently telling someone about what it's like to live in a dry climate after an entire life spent on the humid East Coast. A few weeks ago I visited the San Joaquin River Gorge, and as I lay on my back on a bluff above the river, feeling the sparkly air and looking up through leaves that are a slightly more yellowish shade of green than anything I remember seeing in the East, my body felt perfectly comfortable. I couldn't believe that I had never felt this way, and I realized that having spent my entire life in one climate, I had no idea what I was missing or that I was perhaps naturally suited to a different locale. I had adapted to humidity. I felt comfortable in it and was even worried that I would shrivel up in the dry West. (Seriously!) Instead, I discovered that in the foothills of the Sierra Nevada, things feel a bit like heaven.

The person I was talking to somehow took this story to mean that I was finally starting to feel healthy again. Since this is undoubtedly true—I am feeling notably better than six, nine, or twelve months ago—I took a moment to revel in celebrating my recovery with another person. But later, the exchange really bothered me. My river story wasn't about Lyme disease at all. It was about realizing that we don't always belong in the places where we are. Just because our families or cultures or other social groupings have always done things a certain way, or our ancestors happen to have lived somewhere for decades or centuries, doesn't mean that our current place or lifestyle is where we belong. Just because a way of life makes some or most people happy doesn't mean it will make us happy.

I struggle with two alternatives when it comes to assigning Lyme a role in my life. On the one hand, I feel a need to regularly remind people that I have the disease and that it sucks. Lyme is one of those invisible illnesses; when people look at me, they don't see a sick person. There have been times when people close to me accused me of being a lazy slacker because I wasn't working full-time. All they saw was me lying in bed all the time. They couldn't see the muscle weakness, brain fog, nerve pain, and bone-level fatigue. With Lyme, you can look awesome but feel like something way worse than crap. And even as I continue to feel better, I still have to live with the fact that over a decade of my life has now been derailed and distorted by this powerful illness. I can't get back my supposedly prime grad school, career, dating, and childbearing years. For women in our culture, that's a big deal. People judge you for not getting your stuff together before you turn 40. Heck, I'd be happy just to have graduated from college.

But on the other hand, there is nothing unique about grappling with the universe's harshest realities and needing to figure out a better way to live. Sometimes when I'm sharing an insight I've gained in the context of Lyme, or standing on my get-therapy soapbox, I get the feeling that people are thinking, "Well, that's all good for her—she's a sick person." Sometimes it even feels like people are just waiting for me to recover from this pesky disease so I'll go back to being the nice, quiet, dutiful, rule-following girl I used to be and quit upsetting their status quo with my weird new ways of having relationships and being a Christian and living my life. They blame Lyme disease for changing me when really it catalyzed necessary changes—changes that many people need to make, but won't unless something up-ends their world so drastically that they question everything and absolutely can't live with the way things are anymore.

Lyme is part of me but it's not all of me. And, I suspect, that's what other people might say about their divorce, or their job loss, or their accident, or their loneliness, or their bipolar disorder. We're all wounded in this world.

Some people reduce me to an illness, to an unlucky girl who failed to beat the system and instead got bitten by a tick. I think that's because they want to believe suffering is something that happens only to certain set-apart people—never to them. And they want to believe that the insights, the life changes, the transformations of suffering don't belong to them either. Because that would be just too hard. They'd rather stay where things are comfortable . . . even though comfortable may turn out to be the worst place of all.