Category Archives: Chronic Illness

Difficult Choices

As a younger person, I lived in terror of making the wrong decision. When my mother was still alive, we’d dissect every option in front of me before I had to decide. I’d call her a handful of times a day. Tell her my problem. She’d steer me in the direction she wanted.

You belong here not there. You should do this not that. Make a list. Evaluate.

Hearing her tell me what to do provided tremendous relief. She was my mother. She wouldn’t steer me wrong.

But she was just guessing too. She was relying on her instincts, her biases, her fears, her expectations of who I was and who I should be. She was not teaching me how to make choices on my own, or how to be confident in my ability to discern what’s best for me at a given time. This dynamic is 100 percent normal.

Becoming an adult means learning how to steer your own ship.

No one can predict the outcomes of a choice. Sometimes choices can feel like life or death. Sometimes they are life or death. And yet, we have to decide. We have to go left or right or backwards or forwards or nowhere. We have be uncertain. We have to not know. We have to wonder and guess. We have to Google and stop Googling.

Being human is hard.

A therapist I used to see told me there were “no wrong decisions, only choices.” There’s truth in that statement. It’s also a little bullshitty. There are wrong decisions. We usually know what they are, even if we rationalize them. I’ve made a handful of terrible decisions. Sometimes I regret them. Sometimes I don’t.

I’m being vague in this post because there’s a difficult choice I need to make by summer’s end.

I will not go into the details. I will only share that this decision involves treatment for an autoimmune disease I have developed either as a result of Lyme, or concurrently with Lyme.

Thank you for not asking me for more information. Thank you for not saying “Get well soon.” Thank you for not talking to me about “getting control of inflammation.” My bloodwork shows no inflammation. I have worked so hard at getting control of inflammation.

Thank you for not foisting miracle cures or supplements or prayers on me. I’ve read the studies, the latest books. I’m an expert researcher and a smart person. I can understand and negotiate complexity.

Thank you for respecting my right to process difficult experiences through writing and to make decisions regarding my own medical care. Even though I am overwhelmed by this news and the choice I must make, I trust my ability to steer my own ship.

I do not feel sick. I do not identify as ill. I run multiple times a week at 6:00 a.m. I ride my bike whenever I can. I lift weights and take long walks and marvel at beautiful birds whose names I don’t know.

I visit with friends and binge-watch historical dramas on Netflix. (This one’s so good!) I plan vacations and write syllabi and enroll in classes and work on my book, which I swear I will finish and publish.

If I seem a little bitchy or defensive today, it’s only because I want to share this news. It’s too much to hold on my own. But I also cannot hold how this information is received. I cannot manage other people’s ideas about chronic illness. Being an adult means holding your own junk without spilling it onto other people. Writing helps me keep a tight lid on my junk. Writing helps me remember I am strong.

The last night of her life, my mother and I talked by phone about a difficult decision I needed to make. We talked about her illness too, how she’d started dialysis at a new place.

“I’m going to be okay,” she’d said. That was the second-to-last thing she ever told me. It was one of her last gifts. Hope.

I’ve carried this gift when I’ve gone left or right or forwards or backwards or nowhere without her.

It’s the map I’ve read a thousand times.

It’s the lamp I turn on in the middle of the night when I can’t call her.

It’s the song I listen to when I’m deciding what to do.

It’s the silence between knowing.

And not knowing.

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.