Tag Archives: Health

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.

 

 

Getting “Closer to Fine”

My friend Anne and I saw the Indigo Girls at Wolf Trap in 2015. I could barely move that summer, and going to the concert was a big deal. Before we went, Anne told me she’d ridden her bike to a pool, swum laps, and read a book that day. I couldn’t believe it – like, she could sustain concentration long enough to read a book? When was the last time I’d read a book? Swimming and biking were beyond me, so I didn’t even think about them. The book, I fixated on that. Reading seemed like something I should be able to attain – I have a master’s degree in English Lit. I’m a professional reader. And yet, when Anne spoke to me, reading a book from start to finish seemed as impossible as climbing Mount Everest.

The month of the concert, a weird rash had erupted on my legs. Before the rash appeared, I’d been following my father around Cleveland Metroparks, climbing railroad bridges and doing other outdoorsy things that would have made my mother panic, if she were still alive. I didn’t think to check myself for ticks – I don’t know why. I just didn’t. I was caught up in trying to understand my father’s boyhood, the events that made him the man he became. I was writing my way closer to him, and I did not think about myself. (This is a pattern.)

A few weeks later, I wore shorts and sandals and hiked around Multnomah Falls with Carl. I didn’t check myself for ticks there either. I was having a spiritual experience, completely blissed out on the woods and Portland. Why on earth would I stop and look for ticks?

And then, the rash appeared. Weird pinprick splotches on both calves, just below the knees. It looked like I was bleeding under the skin. And my GP tested me for Lyme and told me I didn’t have Lyme, even though I was too early in the testing window to know. And I didn’t know enough at the time to even know that detail I have just written. My doctor alluded to chronic Lyme as being a completely made up thing, the medical equivalent of a unicorn. Only crazy people had chronic Lyme disease.

I tape recorded him as he spoke because I didn’t trust him. Or I didn’t trust myself.

On the recording, I sound so smart and confident, completely opposite of how I felt in the moment. I do not sound like a person who tape records a doctor because she’s afraid he’s gaslighting her, because gaslighting is what she expects from men in authority. I sound like a person who is relieved because the doctor tells her what she wants to hear –– she’s healthy.  So she ignores all the terrible symptoms that wax and wane and escalate. They are all in her head. They are hormones or hysteria. They are something else and something else and something else. She accepts his version of reality at the expense of her own. (This is a pattern I’m learning to break.)

Anne came with me to a follow up appointment because I needed someone else in the room, and that night we saw Indigo Girls.

We sat outside, our feet touching the grass. We drank wine and ate chocolate and sang “Shame on You” and “Closer to Fine” and “Galileo,” and so many songs that spoke to us when we were younger and had no clue how our lives would unfold. When I think about that summer, I don’t think about all the hours I spent in bed, confused and scared. I think about that concert, about the songs of my past that held such promise for my future.

I’m writing a spiritual memoir and am getting closer to finishing — or “Closer to Fine” – as Anne wrote on Twitter the other day. My treatment for chronic Lyme disease is working, even if my symptoms are still scary and still make me feel like I’m losing my grip on reality. Chronic disease can also feel like gaslighting. I don’t trust my perception of reality. My perception of reality is distorted by a disease that impacts my senses and central nervous system.

This week, to calm myself, I watched Indigo Girls performances from the 1990s, and I rewrote the first chapter of my book, which is about what it means to trust in the multiple paths that carry us forward.

At the end of the 2015 Wolf Trap concert, Indigo Girls sang “Closer to Fine,” a song from their second album, a song that has defined their career. This song is also about what it means to seek, to trust, to take refuge. There’s more than one answer to these questions. 

The chorus of “Closer to Fine” inclines toward the mountain top, the “look out,” but my spiritual awakenings have always begun on the ground. That’s where I go to meditate, or where I lay when I’m too tired to stand. On the ground, I let go of ego and expectation.

This week, I was so tired, I fell asleep on my meditation cushion. I found myself thinking of that song title, the words Anne tweeted –– Closer to Fine –– about how writing and spirituality can be a movement toward something, but not a finish line. This isn’t the answer I – or my students – want to hear, but it’s a liberating truth I need to hear. In this confusion, or darkness, my friends light the way on the journey. They remind me that wandering isn’t the same as being lost.

Indigo Girls 2015
Anne & me seeing Indigo Girls in 2015