By Pegi Deitz Shea

In 2022, I’d been humming along, only having short flare-ups of Lyme symptoms once or twice a year.

Since my six-month delayed diagnosis of Lyme disease in 1998, the flare-ups had gradually become less severe as well. Usually within two months, I could begin slowly swimming and walking my dog without my occipital neuralgia (O.N.) headache striking.

Then I caught a “mild” case COVID. However, after two days, COVID sluggishness became Lyme immobility; the dull COVID headache faded, and the dreaded O.N. crept up like a silent King Kong.

What it feels like when King Kong grabs your skull

Is occipital neuralgia not your flavor of Lyme headache? Picture yourself standing on a mountaintop, arms wide to embrace the stunning view. Behind you, Kong thinks you’re a jet that will shoot him. He spreads his fingers, clutches your skull, and crushes it.

You survive! But Kong doesn’t let go. For months.

Lyme inflammation often attacks one’s weakest points. My neck, collapsing from degenerative disk disease plus sports injuries, was asking for it.

Sure, I’d had the normal joint pain, muscle weakness, and fatigue with my initial Lyme case in late 1997 and during flare-ups. But as a lifelong athlete, I could tolerate those conditions and they always faded first.

O.N. is a whole ‘nother beast

Occipital neuralgia—with its pain, fog and aphasia—is different. For example, Botox deadens my recurring trigeminal migraines. When I tried Botox on my O.N., Kong snorted and squeezed harder.

Since ’98, I had been taking nortriptyline, prescribed by my first neurologist, in varied doses along with other meds. He’d titrate up with a flare, then down as it subsided. Then my dear doctor retired.

In 2022, a new neurologist followed the same pattern of treatment but in smaller doses. My flare-up lasted six months. My husband, relatives, and friends reminded me: you’re older; you take longer to heal.

Following that bout, I had a fantastic two years—swimming, walking miles with my dog, traveling, publishing my first book of poetry for adults, landing more photographs in juried exhibits, writing a historical novel, and volunteering.

A new visit from COVID

Then Covid revisited in July 2024, triggering my Lyme symptoms again. It is now February 2026, and I’m still flaring. The body pain, fatigue, and weakness have faded. But Kong’s vice grip has not.

Every med and measure my insurance approved has either failed or given me only a few hours of relief. So, now a pain management physician is trying nerve ablation in my neck to disrupt the pain signals. The jury is still out, as I’m still having some really bad days. Thank God for medical marijuana.

Though, a funny thing happened en route to ablation: I wanted to kick Lyme’s ass on the page. Over 27 years, I had only written and published a few poems about my aphasia and seizures. Why hadn’t I written more? I think it was mentally too painful. Plus, jocks don’t whine.

I needed to ditch the magnifying glass of pain for a new perspective. After a few moments, I chided myself: Dope, you’ve made a career writing, publishing, and teaching children’s books. Just use your trusty child’s-eye!

Looking at all this with a child’s point of view

I took a deep breath and tried. Soon, I was eight years old again. I felt an odd lump on my dog Sporty’s back. Parted his coat. Saw a cloudy marble. Heard my father’s answer to my question, “What’s this?” Shined a flashlight as he plucked the tick with tweezers:

I follow my father outside, inhale the sweet butane

of his silver lighter, jump when he places the tick

on the sidewalk and sets it on fire.

Sizzzzle…POP!

A corona of blood on concrete.

“Thing about ticks,” Dad says,

“you gotta burn the suckers to be sure they’re dead.”

Writing about ticks became my strangest form of relief

My childlike curiosity kicked in: can we kill ticks in other ways? Can ticks laugh? Did they dine on dinosaurs? And then an inner Robin Williams—my crush in “Mork & Mindy,” my buddy in “Mrs. Doubtfire”—started tickling my brain and lessening my pain.

And apparently, I lost all creative restraint. For the past year, I’ve had the most fun writing in my life. I even heard Kong chuckling before he tightened his grip again.

As a nonfiction and historical fiction author, I can say that this book’s research was also the most fun. It gave me entomological gifts of vocabulary words to play with, images for visual jokes, and topics that demanded me to experiment with hybrid forms and genres.

To wit, learning that I (or you) could buy tick eggs online, I created a carnival barker as a speaker of an ad.

Studying the vicious cycle between ticks, mice, and spirochetes, I called forth Sartre’s existential play No Exit.

Diving into facts about the world’s 900 tick species, I thought only a World Tick Pageant could do them justice. And of course, Ryan Seacrest must host the pageant! Right? I’ll ask him as soon as I finish this.

Freeing my creative spirit

Only after drafting TiCK TiCK TiCK TiCK, did I finally feel ready to share my Lyme journey with others. I had been letting the “trip-tick” of pain / frustration / fear block my vision of creativity’s infinite landscape.

It took art, my child’s eye, and a dose of cosmic comic energy from the late great Robin Williams to launch me beyond. I’m hoping a few more laughs will make Kong let go.

Pegi Deitz Shea is an award-winning author of fiction, nonfiction, and poetry for readers of all ages. Learn more at her website. Her 36-page chapbook is available here. In March, the expanded edition (60 pages), which adds a second section of memoir poems about my journey, will be available here, as well as on Amazon in print and ebook editions.