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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Not so tough

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Photo by Malene Thyssen/Wikimedia Commons

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.

But that doesn’t mean I have to tough it out.

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The diagnosis

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.

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The bacteria that cause Lyme disease. Photo: Centers for Disease Control

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.

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Cat and cow

My Grandpa O’Neil was a man of few words and even fewer stories. Although he lived until I was nearly 30, I can remember him telling only two stories. One, about the man who was so rich that he lit his cigar with a $50 bill, was quintessential Grandpa: always worried about money, and impressed by people who flouted that worry.

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My grandfather, John J. O’Neil.

Grandpa’s other story gave me a rare glimpse of his mother’s personality. Catherine Kelly O’Neil was born in Scotland to Irish parents. When people would say, “Oh, you’re Scottish,” she would retort: “If a cat is born in the barn, that doesn’t make it a cow!”

I guess Grandpa’s mother knew who she was, and who she was not. But I wonder whether her identity had more layers than the cat-not-cow story might imply.

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Stone by stone

 

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Photo: Daniel Case/Wikimedia Commons

“When you’re building a house from the foundation up,” my friend said, “each stone has to go in the right place.”

I loved my friend’s image of the way I’m trying to rebuild myself. Even more, I loved the empathy: the way my friend understood why this work is so hard, why it’s going so slowly, why it takes so much of my energy.

I am rebuilding my foundation, stone by stone. Sometimes the work is backbreaking. Sometimes it’s heartbreaking. Sometimes it’s mind-bending, and sometimes it just plain makes my brain hurt. Other people can help me find the stones, or help me figure out where to place them. But the actual rebuilding is my job.

 

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My false god

Chaplin_-_Modern_TimesI was on the phone with an old friend, catching up. He had read some of my blog posts and wanted to hear more about what’s happening in my life. And he asked some perceptive questions. Like this one:

“You’ve use the word ‘productivity’ a few times. Tell more about what you mean by that.”

Without stopping to think, I blurted out: “It’s my false god.”

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‘Soften where you feel the stretch’

 

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Photo by Sarah Bass

One of my current favorite yoga videos is 47 minutes and 32 seconds of slow, gentle stretching—no strength-building balance poses, no sweat-inducing vinyasas. Just deep, relaxing stretches.

That’s not to say it’s entirely easy. The loud groans you hear coming from my living room are the sound of muscles reluctantly giving up some of their tightness and soreness.

Or rather, they’re the sound of my mind reluctantly giving up some of its impulse to clench those muscles—a subconscious impulse, born of the subconscious feeling that I need to defend myself at all times. Somebody might criticize me. I will certainly criticize myself. So I tighten my jaw, my neck, my legs, as if that can ward off the psychological blows. In trying to protect my “soft animal” from mortal injury, I trap it in an iron cage, where it is impossible for it to love what it loves.

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A little joy

Lately I’ve been practicing a  meditation called metta, or lovingkindness, which is supposed to cultivate compassion for yourself and others. The classical formulation has four parts (with some variation): menorah

May I/we be safe.
May I/we be happy.
May I/we be free from suffering.
May I/we be at peace.

I adapt these to my needs:

May I feel safe.
May I feel loved.
May I feel softness.
May I feel joy.
May I feel at peace.

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‘Tell me about your despair’

Tell me about your despair, yours, and I will tell you mine.
Meanwhile, the world goes on.

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Photo by Raja Patnaik, post-processed and uploaded by Alessio Damato, via Wikimedia Commons

I didn’t blog at all for five weeks in September and October. The despair was too thick.

I knew it would happen. Drawing inspiration from the stunning first lines of Mary Oliver’s poem “Wild Geese”—the verses at the top of every page of this blog—I am trying to let myself love what I love, to accept myself as I am. But all along, I knew I would eventually arrive at the next, pivotal lines:

Tell me about your despair, yours, and I will tell you mine.
Meanwhile, the world goes on.

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A tale of two books

I’m reading two books: My Grandfather’s Blessings, by Rachel Naomi Remen, and John Green’s The Fault in Our Stars.

The first is on loan from a friend who (correctly) thought I would like its “stories of strength, refuge, and belonging,” as the subtitle says. The book defines a blessing as a “moment of meeting” and of wholeness—a mUntitledoment when someone or something helps you remember who you are, and when you do that for someone else. The author is a cancer doctor, and she talks a lot about healing.

The Fault in Our Stars is a novel about teenagers with cancer. I borrowed it from my daughter because she recommended it as a well-written and effective tearjerker, and I need to cry. A lot. I’m not yet far enough into it to start crying, but the two books do have me thinking.

The other night I read a scene from The Fault in Our Stars where one teenager says to another: “Don’t tell me you’re one of those people who becomes their disease.”

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