How to survive a flare-up
July 12, 2022 § 2 Comments
Last month, I had a draft of my newsletter ready to go when something happened. I had a flare-up.
This flare-up wasn’t exactly unexpected. I had recently started another treatment for my ongoing Lyme disease, and my doctor had warned me that as we killed these “bad bugs,” as she calls them, I might feel worse before I felt better.
Feel worse I did, and Sunday evening found me lying on the couch trying not to move because movement exacerbates the nerve pain in my arms and legs (pain I once described to my husband as akin to the Cruciatus Curse in Harry Potter).
It sounds bad, and it is, but I’m also used to it. I have these flare-ups about every few weeks to every few months, and I’ve learned some tricks to manage them.
I cancel everything for the next few days. I schedule an appointment with my favorite osteopath. I take medicine that usually alleviates the pain within 36 hours. And in the meantime, I wait. I do my best to limit the TV (truthfully, there are only so many times I can watch even my favorite shows before I start to feel my life slip away). I perhaps write a few words using the dictation software on my tablet. I pray a little. I read.
This time around, I found myself returning to an irony that struck me early on in my experience with Lyme: as hard (read: at times, horrific) as it’s been, this battle with illness has pushed me further toward Truth with a capital T than just about any other event in my life.
Why is this ironic? Because (with some chagrin) I’ll admit that not too long ago I was convinced I should devote my entire life toward knowing the “Truth with a capital T.” This was why I got a philosophy degree. To some extent, this was why I became a writer (I would write my way toward Truth). All this even though at the time I was also convinced there was no way to be certain about anything (think, Matrix-style: could this all be a dream?).
A lot has changed since then (conversion from agnosticism to Christianity, for one; maybe I’ll write about that another time). But what is this so-called Truth that having Lyme disease revealed to me?
The truth is nothing new, not really. It’s that the world is broken. Or wrong. Or somehow off. You choose the phrasing. Whatever phrase we use will likely sound like a platitude anyway, something tossed around so many times its lost all meaning. Nonetheless, there’s something to it. There’s a reason it’s been said so many times.
When we are not going through a crisis, it’s easy to walk around like everything is basically fine, like you and I and the rest of the world are not deeply messed up (I could use another word here, but I won’t). It’s like when my flare-ups cease, and I have a hard time imagining I was ever in that much pain. Could the world really be so bad that I could hurt that much?
But having a disability or an illness, when the brokenness is your very body, you can’t escape that. You can’t free yourself from your own physical form. You’re forced to reckon with the reality that something is very wrong within the created order, you know it in an embodied way, in your very bones.
And this, in turn, reveals other truths. You see with new clarity that all along your life was tied up in the lives of others, the ones on whom you are now so clearly dependent. You see that at the end of the day you need something other than yourself to save you. You need medical intervention, to be sure. You may very well need God.
What’s neat, of course, are the moments when this brokenness is made right. When a bit of the Kingdom of God, if I may, breaks into a sick body. As in, when the meds start to work, and I can go back to yoga. Or when I have a “good day” and can cook an entire meal standing up in the kitchen. Or when I can type this letter to you without my hands hurting. All of a sudden, we have the resurrection inside our very veins. We feel the difference between the wrong way and the right way, and know how easily it could all go south, but for just this moment it doesn’t, and grace takes on a whole new meaning.
There is a lot that’s terrible about long-term illness, and I am fighting tooth and nail to get better. Though I have a lot of hope for my future health, it could still just as easily be me who’s sick for a lifetime. For now, I find these kernels of reality, of truth, a kind of consolation.
Next month, maybe I’ll share that neatly edited essay. For now, what I have is this musing hastily written on my iPhone late at night. I’ll end with yet another platitude that’s nonetheless true: I do hope you’re well, wherever this note finds you.
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This post originally appeared in my June newsletter.
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May 31, 2022 § Leave a comment
Friends, it’s been a little while since I last posted on here, and a lot has happened since then! Last year I took a sabbatical from professional writing for my health, and while that sabbatical continues, I have slowly, tentatively begun to follow my urge back into writing. To that end, I’d love to invite you to join me in my latest writing endeavor!
| I suppose a better title for this newsletter might be something along the lines of, “a note from the candle-lined, Epsom salt-filled bathtub” or, “a note from the mint green couch under the third story apartment window.” Or even, “a note from the bed, where I sit propped up by a handful of linen throw pillows.” Because in truth, it’s been nearly a year since I last sat at a desk. I can’t sit at a desk, not really, at least not for now. I have yet to find the right chair to correctly support my back, the right way to position my hands at the keyboard, the best spot to place the screen that will allow me to sit long enough at any desk to write without my nerves flailing out of control. I don’t share this to illicit pity. I share this simply to be honest, and because I have a great deal of hope that one day—hopefully sooner rather than later—this note can rightfully be called “a note from the desk” because I will be well enough to sit at one. Preferably the handsome wooden corner desk my husband bought for me when we were dating—the one that’s a bit scratched and scuffed, the one with the coffee mug ring in the corner. I love that desk. And I have every intention of using it in the future. And that is why I’ve titled this newsletter “a note from the desk.” Because even though I come to you from the tub, the couch, the bed—nearly every spot in my apartment but the desk—I have hope that one day I will pen this note to you from a desk where I sit without any pain (or, really, less pain—I’m not asking for perfection). |
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Something I’ve learned during these years with Lyme disease: some kinds of hope are easier to have than others. And having chronic illness, and remaining hopeful, perhaps not for the correct treatment, but at least for a life that does not circle entirely around the sad and tough components of illness—that is a very hard hope to have. That is hope that takes some real muscle. Some courage. Some inner strength. And frankly, it’s a hope that’s a whole heck of a lot easier when you don’t have to do it alone. I have found it a lot easier to hope when I’ve acknowledged just how hard it is to hope when you are sick and have been sick for a very long time. Perhaps this is you? And maybe it’s not illness, but something else. And I won’t pretend to have the answers for how to keep going, though somehow I have kept going, and if I can do it, I think you can, too. |
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This newsletter is an experiment in hope. I don’t know what the next months will bring—greater health or another flare up. I have come to expect surprise rather than certainty. But I’m stepping out, nonetheless. It probably won’t be easy. And I don’t care what they say. I would very, very much prefer easy. But that’s not the road I’m on. And God promises that even on the narrow path—the difficult one, if you will—there are still opportunities for lightness, for ease, for joy. If I’m anything, I am determined to find that light yolk Jesus speaks of. I’ll be like Jacob; I’ll wrestle it from his grasp. One thing’s for certain: I do hope you’ll decided to join me (see above about how it’s so much better not to go it alone). |