“Stop Assuming I’m Lazy—I Have a Chronic Illness.” That’s the headline on an article I read last night by Esmé Weijun Wang, a writer with persistent Lyme disease. It’s not readers who assume Wang is lazy. It’s Wang herself.
Despite “fevers, moderate to severe nausea, weakness, fatigue, and a cornucopia of other symptoms,” Wang manages to work part-time and even travel on business occasionally. Yet even as she lies in bed, too sick to sit up, she fears “that I’m secretly slothful and am using chronic illness to disguise the sick rot of laziness within myself.”
Right now, Wang tells herself, her work is taking care of herself. But “I continue to live in a society that praises the art of getting things done over all else—including wellness and rest—and these are values I can’t seem to shake.”
From the narrow place, I called: “God!” God answered me in the wide-open space. —Psalm 118:5
Life is a journey, they say, and that has never seemed truer to me. This phase of my life bundles so many transitions: from child-rearing to my daughters’ independence; from the job I left last summer to whatever comes next professionally; from perfectionism to a kinder, gentler approach to myself and the rest of the world; from nagging unwellness through diagnosis to (I hope) restored health.
Notice how I conceive of this journey. Each transition has a “from” and a “to,” a beginning and an end. A destination, if not a goal.
But that’s not how life’s journeys really unfold. Often I don’t know where I’m going, let alone how long it will take or what will happen along the way. Sometimes I don’t know where I’ve been until I’ve left it behind.
And now I’m learning what can happen when prayers are answered and a narrow place—an unbearably tight spot—gives way to wide-open space: confusion. New fears. Bewilderment, which sounds an awful lot like “wilderness.”
A couple of weeks ago, we had glorious spring weather. The cherry trees blossomed. Then, last Monday, it snowed. Not the here-this-morning, gone-by-afternoon flurries we expect in early April, but snow, hail, and sleet that kept falling all day. After that came temperatures in the 20s. I took my long underwear back out of the drawer. I’m wearing it now.
Hang in there, we tell each other. Spring will return. We just have to be patient.
And it’s true. February-in-April won’t last. It’s in the 40s now—not balmy, but at least the pipes won’t freeze.
Here’s my problem: this unpredictably nasty weather is a discouraging echo of my health. I’m feeling better—oh wait, now I feel crummy again. My fatigue has lifted. Nope, this morning I lay in bed for 20 minutes before summoning the energy to sit up. My back pain has lessened. But now my legs hurt. The memory problems are worse than before—as far as I can remember.
The last couple of weeks have been kind of rough. I started antibiotic treatment for one or more chronic tick-borne infections. (In my last post, when I called the diagnosis chronic Lyme disease, I spoke too soon. It’s probably another infection, Bartonella, and maybe persistent Lyme as well.)
As advertised, the antibiotics are producing something called a Herxheimer reaction. My body’s reacting not to the drug itself, but to the dying bacteria and the toxins they spill into my bloodstream. Typically, Herxheimer reactions intensify the underlying symptoms. In my case, that mainly means fatigue, muscle pain, sleeplessness—when the back pain keeps me awake—and headaches.
It’s all pretty yucky, but none of it is absolutely horrible. And it means the antibiotics and my immune system are doing their job, killing bugs. There’s no way around it; I just have to ride it out.
In 2012, I found a tick on my leg, got sick, and tested positive for Lyme disease. It was diagnosed promptly and treated according to the mainstream protocols, which supposedly means the infection was cured.
That was three and a half years ago. That’s how long it’s been since I felt healthy. Three and a half years since I felt like myself. Now, finally, I know why.
This week, I had a long-awaited appointment with a Lyme specialist. After hearing my history and my symptoms, he said I have chronic Lyme.
Chronic Lyme is an incredibly controversial diagnosis. Many doctors think it doesn’t exist; they don’t believe the bacteria can survive antibiotic treatment. So when I saw my brand-new internist two days after the Lyme doctor, I more than half expected to get a lecture about unscientific diagnoses and quacks who want to take my money and give me harmful drugs. Instead, she concurred 100 percent with the specialist’s opinion. I wanted to hug her.
I’m still sorting through my thoughts and feelings about this news. Treatment will begin in a couple of weeks, after my lab results are in. It will be a long haul; it could make me feel worse before I feel better; and it might not be a total cure. But I will get better.
When I began this blog, I deliberately set no expectations for when or whether I would post on it. A key part of this Mary Oliver Challenge that I have set for myself is learning to distinguish what I really want, at any given moment, from my own expectations or the ones that (I perceive) other people have for me. The seemingly simple question—“what do you want, Carole?”—gets so tangled up in what I think I should do that it becomes hard to tell the difference. So I have been determined not to let the blog become a “should.”
Still, I feel bad that I haven’t written here in more than a month.
“You don’t have to find yourself,” says the sign at the yoga studio. “You have to create yourself.” But I think I do need to find myself.
That’s not to pick a fight with the sign at the yoga studio. There is no ready-made, off-the-shelf self waiting to be discovered, like the perfect wild raspberry hidden along the trail. Finding myself is not a matter of practicing the right asanas, chanting the correct prayers, or following the proper program. It will take a lot of creative effort. So maybe we’re on the same page, the yoga-studio sign and I.
Still, “finding” is a central part of what I need to do. When I lost my father, I lost a part of myself. Three years later, I’m still not sure what that part is, let alone how to find it.