Bugs in my brain

I lost my wallet the other day.

That was only one of two reasons I couldn’t pick up a prescription that was waiting for me. The other reason: I was at the wrong pharmacy.

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Lyme disease bacteria, in some of their many forms. Photo: Journal of Neuroinflammation/Creative Commons

I pulled out of the drive-through lane and into a nearby parking space, trying to figure out what to do next. The wallet must have fallen out of my jacket pocket, I realized. I turned on the interior lights and looked around inside the car. No luck. I texted my therapist to see whether it had turned up in her office, one of the three places I had been that afternoon. While I waited for her reply, mind buzzing with anxiety, I tried to think straight.

Should I drive home (without my license), make sure the wallet wasn’t there, grab some cash, go to the right pharmacy, and pick up my prescription? Should I retrace my steps in hopes of tracking down the wallet? I tried calling my husband for his common-sense advice. The call went straight to voicemail. I decided to drive back to the location of the yoga class I had just left and look for the wallet there.

It was after hours and the building was locked, but I followed some other people in. Climbing the stairs to the third floor, I found the door locked, so I walked back down to the second floor and took the elevator. In the makeshift yoga room, my wallet was nowhere in sight. Meanwhile, my therapist texted back to say that she didn’t find it, either.

So I went home, trying not to freak out. My husband was there, calm and reassuring. “Maybe it’s in the car,” he said. By that time, it occurred to me to use a flashlight. With the help of two flashlights and two pairs of eyes, we spotted the wallet and extracted it from its hiding place, between the driver’s seat and the center console.

Crisis averted. Time wasted: about an hour. Anxiety level: maybe 5 out of 10. Errands accomplished: 0.

This is my brain on bugs.

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Season of return

Elul arrived on my doorstep this year with unwelcome baggage.

The last month of the Jewish calendar, Elul is a time for reflection, for looking back on the past even as we look ahead to the coming new year. It’s the season of return. That’s the literal meaning of t’shuva, the seasonal theme usually translated as repentance.

leaves

As summer turned toward fall, as the earth turned away from the sun, as leaves turned brown and lifeless, I felt a deep sense of loss. That was four weeks ago. Now Elul itself is ending, turning toward Rosh Hashana and the month of Tishrei. And the sadness remains.

In the past four years I have lost so much: my father, my good health, my energy, my self-image as a competent, hard-working person who can be relied upon to do what needs doing.

This new year of 5777 starts out as another year of health problems, another year of not knowing exactly what is wrong or what will fix it. Another year of fatigue and muscle pain, anxiety and disrupted sleep. Another year of unpredictable ups and downs. Another year—the beginning of Year Five—of diminished capacity and diminished self-image. Another year of not feeling like myself.

But my self is more than a bundle of health problems. This season of introspection calls me to step back from my frustration and notice what has changed, what has gotten better, not just what remains challenging and discouraging.

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The gift of fatigue

After a few weeks of increased energy, my old companion fatigue reappeared yesterday afternoon. With it came the telltale backache—characteristic, for me, of this type of fatigue—that urges me to lie down on the floor on my back and just … rest.

Sometimes these bodily instructions include a little flat-on-my-back yoga. The gentle stretches and twists soften the pain, but they don’t make it go away. For that, I need rest.

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Photo: Joseph Renger/Wikimedia Commons

And for rest, I need patience. I can’t force myself to feel better, and then move on to whatever I want to do next. I have to allow my body to feel better on its own schedule.

It’s not a nap; it’s not vegging out. It’s conscious, deliberate rest, in which I must allow both my body and my mind to become still—and to stay still for as long as necessary.

That’s the gift of this kind of fatigue: it helps me surrender.

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What have you done for me lately?

“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.”

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A time to sit

This morning I paced around my house, as I often do, trying to settle into my daily prayers.

Most days I’m distracted by my to-do list and the feeling that I should be getting on with the day. This morning, tired and achy and a little sad and lonely, I could tell that it was a day to take it easy. A day to quiet my mind—the voice pestering me to get things done—and listen to the slow, sad, tired voices of my body and my spirit.

It’s been almost a year since I quit my job and launched this blog to chronicle my journey. Inwardly, it has been a year of exploration and discovery, even revelation. A year of deep valleys but also some peaks, or at least foothills.

Outwardly, though, it looks like a desert year. A year of unemployment (semi-voluntary though it is). A year of illness and long-term treatment that is only beginning to show results. A year of slow progress on this Mary Oliver Challenge, the challenge of learning to be myself and to love what I love.

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From my narrow place

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Photo: Douglas B. Barbour/USFWS

Min ha-metzar karati Yah
Anani va-merchav Yah.

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.”

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Patient

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.

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The hail and the cherry blossoms.

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.

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