Category Archives: chronic pain

There Is No Hiatus

I put this blog on hiatus in November 2018. I hadn’t posted in two months. I was working on other things. I thought I was clearing space to finish my book. I thought this blog was a distraction. I thought I’d get back to my book once I finished a few essays I’d committed to writing. I thought my Lyme Disease was under control.

But I didn’t get back to my book.

I wrote book reviews. I wrote grant applications. I applied to graduate programs. I wrote essays.

These were essays I needed to write. Without them, I wouldn’t be able to finish my memoir. With each essay, I saw the memoir’s possibility expand. I uncovered truths this book needed. I have a complicated process. Essays are part of that process. I told myself to follow the process. I’d get back to the memoir by spring.

But I didn’t get back to the book. In late February, I developed arthritis in my hands, with the worst symptoms concentrated in my left hand, my writing hand. I wondered if this was my body’s way of trying to shut me up? Of saying, don’t tell?

 I knew those questions were nonsense, but they were also important. They triggered my rebellious spirit. They reminded me to keep going. Bad things don’t happen for a reason. They just happen. To everyone.

My arthritis was just one more thing in a series of unfortunate things. But I remembered how I’d traveled alone to New York City the week of my Lyme diagnosis. I had dinner plans that weekend. I had a ticket to see “Tiny Beautiful Things” with my friend, Elizabeth. I was not going to cancel. Still, there was a moment when I lugged my suitcase through fresh snow in downtown Brooklyn when I wondered if I’d made a mistake. My legs wobbled as I walked. I could barely feel them.

But that weekend was also glorious. Elizabeth and I laughed and sobbed through the play, then met our friend Erika for dinner at a restaurant with the most beautiful pink walls I have ever seen. My friend Lauren showed me how the Manhattan skyline sparkled from a particularly snowy corner of Brooklyn. I also ran into my friend Javier, who I hadn’t seen since my mother died. We met for coffee my last morning in town, when we reminisced about our long-ago time as interns in D.C., and what had happened to us since then. I don’t regret this trip. At all.

I called on this same rebellious  adventurous spirit one morning in March while I drove to a writing workshop. As I wove through rural New Jersey, my wrists burned. I had never experienced this kind of pain before. It felt like someone was snapping a rubber band against my skin over and over again. It felt like someone was holding a lit match to my wrists between each rubber band snap.

This is bad. I said to myself. And I still thought the pain would go away on its own. I am so good at denial. Or hope.

 That night, I stood in the workshop host’s kitchen and told her what was happening. She opened a prescription bottle and gave me one tablet of Meloxicam. After swallowing the butterfly shaped pill, I slept without pain. Until the Meloxicam, I hadn’t realized how much space pain took up. I didn’t understand how pain took up energy I needed to sit at a desk for hours and write. I didn’t know how consumed I’d been by pain until I had a break.

When I awakened, snow covered the farm where the workshop was held. I walked around the cottage where I was staying and took photos of the gleaming countryside. Without pain, I could appreciate the beauty in front of me, the sense that I’d fallen into an Andrew Wyeth painting. I am always hushed in the presence of snow.

Then I realized I had to do something to manage the pain. How else would I finish a book?

The next week, I sat in a doctor’s exam room. This doctor was the one who had said, “I think you have Lyme Disease,” the first time we’d met. She’d ordered my tests. She’d diagnosed me over the phone in December 2018.

The diagnosis came five months after a pregnancy loss. Before my diagnosis, I had hoped to start trying again for a baby in January 2019, when I was 36. Instead, I began my first tri-antibiotic Lyme protocol. This past February, when I turned 38, I was down to two antibiotics and more than a dozen supplements. I swallowed upwards of 40 pills per day. I’d started to wallow too. In the doctor’s office, I cried. I don’t know why, but Lyme makes me cry harder, messier. Once I start, I can’t stop for a long time.

“Do you think you’re depressed?” My doctor asked.

“Who wouldn’t be depressed?”

Who wouldn’t be depressed?

In my doctor’s warm exam room, beneath paintings of New Orleans’ Jackson Square, I repeated the story I tell about my Lyme descent. It starts with an ER visit in July 2013 when I was 32. It meanders through years of doctor’s offices, lab tests, blood draws, and so much mansplaining. It always ends with the same line: I lost my childbearing years.

What a convenient story. There are clear heroes and villains. There’s a linear structure, a rock-solid timeline for childbearing. It’s a story that says the most important thing I could have been doing in my thirties was childbearing, mothering.

The problem with this story is that it ignores the essential things I did in my thirties, the ways I birthed myself. In those years of decline, I established my career, finished a degree, bought a house, strengthened my marriage, published, taught hundreds of students. I fought hard for myself.

I am undeniably different because of Lyme. My life is different, changed irrevocably. Going off gluten, dairy, sugar, and alcohol is really hard. Last night, Carl ate one of my favorite candies in front of me and I wanted to claw him. But I didn’t. I love him!

I’ve struggled for a few days with the question of how much to share on this blog, whether I should begin again, whether a hiatus is a good thing for me. I wanted to look “hiatus” up in the Oxford English Dictionary and interrogate its etymology in a way that would support my fear that the only hiatus in life is death. I realized it’s okay for me to have this fear, and I don’t have to validate myself with the OED.

This morning, I woke up at 6:00 a.m., fed the dogs, then climbed onto a bike I bought years ago with money I earned from travel writing. I rode down empty, golden streets while this blog wrote itself in my head. I couldn’t stop it. Why should I stop it? I don’t believe I’m on a hero’s journey, or that my illness makes me stronger or weaker than the person I was before. But it is giving me more to say and a greater sense of urgency. I’ve never been good at holding back. Or performing a different life than the one I live. Words, like truth, find a way.

So the blog is back on. The book is back on. Thank you for caring enough to read.