Writing About Lyme: Jennifer Crystal’s Experience Writing Her Story

Jennifer Crystal shares her journey of writing her memoir about Lyme disease, reflecting on healing, creativity, and the power of storytelling.

Since my memoir One Tick Stopped the Clock came out in September 2024, people have been asking me, “What are you writing next?” The answer, proudly, is “nothing.” Of course, I devote creative energy to my daily work as a writer, including this blog. But instead of jumping right into crafting another book, I am relishing the publication of this one—enjoying finally having a hard copy in my hands, giving talks and connecting with readers who feel seen in my words.

Birthing those pages was a marathon akin to battling tick-borne illness. Both journeys were full of ups and downs, of false starts and small victories, of hope and defeat that ultimately—following years of hard work—led to great healing.

I first learned about the genre of “writing to heal” during my senior year of college, when I wrote a creative thesis about the last year of my grandmother’s life. I learned what it meant to put pain to paper, to process through grief in writing, and to memorialize someone on the page. I learned how cathartic it can be to create art out of adversity.

But I couldn’t apply the same passion or vigor to writing about my illness journey, at least not at first. During the years I was bedridden with Lyme disease and other tick-borne illnesses including babesiosis and ehrlichiosis, I barely had the energy to hold a conversation. I struggled to read or write a complete paragraph before brain fog swept in. My joints ached when I typed or held a pen.

Eventually, as antibiotics, other treatment, and adjunct therapies granted me more good days than bad, my passion for creativity re-emerged, but I still didn’t have the energy to write about illness; I was too close to the situation to reflect on it, and felt overwhelmed by telling a story I was still living. As I would later describe in my book, my dear friend Patrick reminded me that we don’t have to take an all or nothing approach when sick: write a book or not write at all, attend a party or stay home in bed, watch a full movie or watch nothing. He encouraged me to apply that attitude to writing, something that could bring me joy even in small spurts. He played writing games with me, sending me a few words and having me create a story from them, or asking me to tell him about my day using only three syllable words. The activities helped me pass the time, distracted me from my pain, and showed me that a writing spark still flickered inside me.

I started trading memories of my time studying in Paris with Patrick and other friends, emailing funny anecdotes that provided laughter (critical social medicine!) and reminded me that I was once a vivacious person who could travel around other countries. Writing those stories made me feel more like myself than I had in years. Eventually, those little anecdotes became longer chapters that ultimately became my first book, Et Voilà: One Traveler’s Journey from Foreigner to Francophile.

Writing One Tick Stopped the Clock happened in a similar slow-build manner. First, I simply penned a list of wishes, including:

I wish my body wasn’t achy and feverish

I wish it weren’t an issue to walk up a flight of stairs

I wish people could see on the outside how my body feels on the inside

I wish my body was well enough for my mind and heart to be light.

I didn’t actually start writing the book until fall 2011—14 years after my tick bite and 6 years after my diagnosis—when I began a Master’s in Fine Arts in Creative Writing in Boston. Away from my sickbed, physically healthy enough for my mind and heart to be light(er), surrounded by a community of writers sharing their own stories on completely different topics, I finally had the distance and safety to begin writing my story.

I didn’t start at the beginning. As with Et Voilà, I began with moments in time—random memories from the journey that felt important. Some were chapter-length, some were a few pages, some were a few paragraphs. I didn’t know how or if they’d ever come together. My professors told me to not worry, to just keep writing.

For three years of graduate school, I did just that. I wrote scenes. I wrote chapters. I wrote angry moments that I knew I’d never share with the public but needed to process through for myself. I responded to the prompt “and after that, nothing was ever the same,” and out came the moment of diagnosis, now the end of a book chapter. I gained new understanding on people and moments in my story, perspectives that I couldn’t have seen if I hadn’t gotten the musings in my head out onto paper.

Out of fear and post-traumatic stress, I avoided writing about my 2007 relapse until there was no alternative. When I finally did, I had to pace myself slowly, taking breaks to ground myself in the present. What came out was, of course, an incredibly intense chapter. But woven in was also an older, reflective voice that led a classmate to note, “I see a lot of post traumatic growth emerging here.” Finding the words for the lowest point of illness helped me to literally come to terms with it and to chart the growth I experienced since that dark time.

By the time I earned my MFA, Part I of my memoir was complete, and I had a clear outline of how the rest of the book would flow. Many of the early scenes and chapters did end up fitting into the puzzle. Others hit the cutting room floor but were still part of my own healing. Over five more years, I finished the next three parts of the book, completing a first draft just before the pandemic hit.

I landed a big-time agent who I hoped would land a big-time publishing deal. The response we got from editors was a request to contextualize my story in the larger narrative of chronic illness. Suddenly, I had a context that I certainly would never wish on the world, but getting COVID-19 helped me to consider how various long-haul illnesses—and patients—are treated. The pandemic gave me fodder to write an Introduction that sets my story within that much larger narrative and to fold universal truths about chronic illness into the book.

The memoir eventually made its ways to a smaller press, one focused on personal narratives of healing, exactly the home I believe the book needed. The story itself became exactly the version I believe was meant to be out in the world. I’m always telling my students that to revise is to re-vision, to look at something anew, and I’m grateful for the re-visioning that has happened for my story, both lived and in print. Perhaps someday there will be another book to write, but for now, I’m enjoying living in the moment of this one.

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