Madison Area Lyme Support Group

by Jennifer Crystal

In the current political climate, one is often reminded of Martin Luther King’s quote, a paraphrase of abolitionist minister Theodore Parker, that “The arc of the moral universe is long, but it bends towards justice.” The lesson is, though we may spiral through difficult times, we must remember that we are still moving forward, if slowly.

The same lesson is true for patients with Lyme and other tick-borne illnesses, especially those battling late-stage infections that take months or years to treat. Sometimes it can be hard to keep this long game in mind, particularly if you’re feeling worse today than you did yesterday, or worse, more sick this month than you did last month. It’s easy to feel stuck, or even to believe that you’re moving backward instead of forward.

In my worst days of suffering from Lyme and two of its co-infections babesia and Ehrlichia, I was without hope. Bedridden with migraines and insomnia, I wanted to pull my hair out. Some days I’d start to feel a little better, maybe gaining the ability to run an errand or type an email, and then I’d crash and spend the next three days in bed. I felt that I couldn’t take the suffering another second. I didn’t want to die, but I didn’t want to go on living like that, either.

Thankfully, I survived because my health got so much better than I ever thought it possibly could. Someone recently asked me, “What got you through those dark times?”

I thought for a minute and said, “faith.” “Where,” she asked, “did you get your faith?” “Friends,” I quickly said. “They believed in the long game even when I did not. They kept the faith for me.”

Friends who had gone through their own adversity, medical or otherwise, trusted in the possibility of my recovery. They reminded me of the gains I had made. “You drove to the post office today! Last week you walked to the mailbox!” These accomplishments felt insignificant and silly then. I couldn’t see how I could ever move from such baby steps to working or exercising again, especially when I couldn’t lift my head off the pillow, let alone walk to the mailbox.

But within a year of treatment, including intravenous antibiotics, my brain fog lifted and I started tutoring students. My friends had been right. I wrote an article for a local magazine. I traveled to Florida. After another year of treatment, I felt well enough to move out on my own (I’d been with my parents) and started an editorial assistant job. I did physical therapy and was working towards skiing.

Then, I relapsed. Despondent, I thought I’d lost years of gains and that I would have to start all over again. I envisioned another two years in bed, if not more. But a friend pointed out, “Before this relapse, you had six months of good health. You haven’t lost that ground. You’re not back to ground zero.”

She was right. In reality, it only took a few months for me to restabilize. My arc had bent towards wellness before, and it did again, but this time more rapidly. Though the relapse felt devastating at the time, I can now see that it was really just a big hiccup in my long game of Lyme recovery. Since then I’ve been in remission, with smaller hiccups, for more than a decade. I’m able to teach, write, ski, paddleboard, and live a happy life within the context of chronic illness.

I now teach a creative writing course called “Writing to Heal.” On the first day of class, I draw a spiraling arc on the board. The line starts in the lower left corner and moves upward to the right. Then it circles back on itself. Then it moves upward and forward again, then circles back again until there’s an extended helix. It continues to spiral like a staircase until it reaches the top right hand corner of the board. When I finish, I tell my students to look closely at the long, looping arc.

“This is the healing process,” I say.

I’m grateful I held on through my spirals, because the long game has been more rewarding than I could have ever imagined. Hard as it’s been, it has always bent towards wellness, and I have faith that it will continue to do so.

Opinions expressed by contributors are their own.

Jennifer Crystal is a writer and educator in Boston. Her memoir about her medical journey is forthcoming. Contact her at lymewarriorjennifercrystal@gmail.com.