Q3 and me

Screen Shot 2019-09-29 at 3.28.14 PMIt’s autumn. It’s the autumn of my life, and that cliché is falling upon me like a ton of dead leaves.

On the yearly calendar, it’s the very beginning of autumn. The trees are overwhelmingly green. As I type this, sitting on the deck, I’m wishing I wore shorts instead of jeans. But time moves fast: When I began writing this, our autumn sedum was light pink. Just two days later, it is approaching the deep red it will soon become.

On the calendar of my life, I am deep into the third season. That doesn’t sound right, but I can’t dispute the numbers.

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The light in the middle of the tunnel

B’orcha yireh or: By your light, we will see light.
—Psalm 36

I love it when a blog post starts writing itself in my head. I’ll interrupt what I’m doing—sometimes even my morning prayers—to scribble some notes. Once I dictated most of a draft on my phone while walking in the park.

But sometimes I have only a phrase or an image, with no clear notion of what I want to say and, crucially, no idea how to start the post. Having a good opening (the “lede,” as we call it in journalism) is like kicking off from the swimming pool wall: it feels smooth and powerful, and the momentum can carry me a long way.

House in Fog
“House in Fog,” Francisca Verdoner Kan, 2007

This post started without a lede. The phrase above from Psalm 36—B’orcha yireh or: by your light, we will see light—struck me months ago during my morning prayers. What does it mean? It seems redundant, circular, absorbing the light of inquiry rather than revealing itself.

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Though my father and mother forsake me

Though my father and my mother forsake me,
The Lord will gather me in.

These plaintive lines help usher in Elul, the last month of the Hebrew year. As we prepare for the new year through reflection and self-examination, we recite Psalm 27 daily. It’s a masterpiece of hope and yearning and soul-rattling fear, bravely masquerading as faith.

Five years ago, Elul arrived just two weeks after my father’s sudden death. Those lines evoked my pain, my feeling of abandonment.

Rear Window 1958
My parents, Rita and Ray Smith, in 1958. May their memories be for a blessing.

In the past couple of years the bereftitude receded, and I could focus on other parts of the psalm. But I knew that eventually, my mother would also have to leave the land of the living.

That time came this summer.

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Blebruary

Four weeks ago I started a new course of treatment for my Lyme/Bartonella/Babesia/whatever the heck I’m battling. These new drugs are kicking my tuchus. It’s the strongest reaction I’ve had since the very first round of treatment, last … February.

I knew, I know. February is a tough month for everybody. That’s why some kids at Yale started Feb Club way back when, throwing a party every night of the month. But I’ve never been much of a carouser, and anyway I’m sick. I can’t party like it’s 1983.

bleb-b
The arrows point out blebs. Photo: Journal of Neuroinflammation

So I thought of something just as fun: I can celebrate February by learning some science — and then imparting it to you, dear readers.

Our topics today are Herxheimers and blebs.

Yes, these are actual words. I would love to claim I made them up, but that would be a lie. And science is serious stuff — no lying allowed.

I chose these topics because Herxheimers and blebs are not only fun to say, but also interesting and important. To me, anyhow: they are making me miserable.

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Invisible woman

I’m afraid of disappearing.

afraid-of-disappearing

I fear that like the Lyme bacteria inside my body, which change their shapes to hide from my immune system and my antibiotics, I’m becoming a tiny round ball: curled in on myself, invisible to the rest of the world.

This illness saps my energy and keeps me from working, from volunteering, from circulating in my community. And so I’m afraid that people will forget about me. I’m afraid they already are.

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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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