lost-speech-slurring-words-lyme-disease

In 2016 in the midst of pretty bad Lyme disease fuckuppery, I told creativity to take a hike. I walked away from a publishing deal after I was told my completed novel Ever Glade was too literary. I shuttered a novel-in-progress, three quarters of the way through, about a woman who loves archery that inherits a summer camp—a book I once gleefully tackled every morning to meet my 500 word goal. I stopped listening to stories to appear in my mind’s echo chamber. I quit my writer’s group, The Tall Poppy Writers. I stopped observing people around me to figure out how they could fit into my imaginary worlds. But most of all, I silenced my brain.

At the time, I thought I was doing myself a favor. Tripe Love Score, a book I was immensely proud of and worked my ass off to promote, launched with little success. This book scored mention on Redbook, a good review from Kirkus, and placements on fifty different book review blogs. I hosted a book festival in its honor, River Reads, coordinating with 40 other authors to bring books to one of my favorite public spaces, Prallsville Mills. I worked hard in my marketing collective, The Tall Poppy Writers, feverishly promoting the work of my sister authors in exchange for the same. I did all the things an author is supposed to do to be successful. And yet—none of it mattered.

Couple this disappointment with eight different kinds of antibiotics (my favorite treated meningitis, too!), and extreme hair loss, and you may find a person at their literal wit’s end. As REM sings, I was losing my religion. I was a hurt, lost, and blinded fool.

The GRAMMY Award-winning "Losing My Religion" from R.E.M.'s critically-acclaimed, 1991 album, "Out Of Time" To learn more, visit http://www.remhq.com.


Elizabeth Gilbert in her exceptional treatise on creativity, Big Magic, talks about how if you don’t tend to creativity, listen to it, engage with its ideas, it will move on. She posits this as a caution—she hopes that artists of all ilk will honor that creativity (my assumption here—she may not care what we do with our creative impulses, but she certainly seems in favor of following them). But I took her words in a different way; I told myself I could turn it off. I could turn off the muse. The voice in my head that brings me stories. The spark that always marked me as weird and on the side of things watching and listening. Maybe I could escape the pain and frustration of having my creative efforts ignored by the larger world if I just stopped writing. If I stopped caring about story and let it all go.

For awhile, I would say this worked. I didn’t care. People would talk to me about working on their novels or writing their poems, the struggle of it, and I would chuckle inside. I put that down. I moved past it all. I was free.

But dear reader, we all know that story is a lie. No one can severe themselves in two and walk away unscathed. Once the shock wears off, you will eventually notice your missing arm and cry out at the tragedy. This summer my body finally sounded that alarm for me.

I’m a big fan of Louise Hay and her work on illness as our bodies way of speaking to us. I know these ideas are controversial, and some accuse this method as victim blaming, as in its all your fault that you got cancer because you didn’t think enough positive thoughts. I don’t see it this way. Instead, I look at it as being blameless in the activation of the illness of disease but having a responsibility as to how we respond to it. It we can take some of the emotion out and learn to look at the disease as something that can teach us, something we can learn from, or listen to, then we might be able to support all of the healing efforts both from conventional Western medicine and any alternative therapies we try. I don’t see it as wishing it away; I see it as accepting all circumstances as moments of grace where we can choose to learn or grow. (Hippie dippie, I know, but when you have a chronic thing like some bastard tick infection coupled with EBV that won’t go away, you need to develop a paradigm for dealing with it lest you drive yourself mad.)

As I was fixing to turn 45, I began to get signs that perhaps I needed to deal with “writing thing” in order to get past whatever was holding me back energetically. In my other life as an archer, I struggled with accepting success. The idea of winning made me nervous and afraid. So we began to look at other areas of my life where I walked away from pursing goals (We being myself and Joe Crisanti of Pure Space Hypnosis—my mental game coach for archery). The finished but unpublished novel on my desk stood out as a big candidate for exploration. After a hypnosis session, I came to the realization that I needed to clear the cobwebs. I decided to self-publish Ever Glade rather than let it rot in a drawer. I was going to own my power and let it be the book I wanted it to be—whether or not it was too literary.

I met with Karen Hughes of Open Door Publications and Eric Labacz of Eric Labacz Design and hired them to make this project happen. After years of ignoring this book, bitterly resenting the publishing marketplace, it felt great to see it come to life and move from my head and desk into the wider world. Over lunch to set things up, Karen asked about other books I might write, and instead of scoffing, something about writing about archery and how it is a tool for self-development slipped out of my mouth. I took note of this, and on my birthday, I made my way to the Book Garden and bought myself a fancy notebook. I vowed to start capturing this next possible stage in my writing career.

If you know writing at all, you know this is where the bad part happens. The heroine gets stalled in her journey. Perhaps meeting a dragon or two, or an evil king from another realm. Actually, nothing that dramatic happens—in fact nothing happens. I don’t write at all. The notebook sat unused on my desk.

But something else was happening; something weirder that I couldn’t put my finger on. When speaking, the ends of words would get stuck in my mouth. Sometimes, the sound would be off like I was putting on a long Island accent for show. Sometimes, I couldn’t say them at all. Typing was impacted, too. I couldn’t get some words close enough that spell check could pick them up (like just a few moments ago, it took me about three minutes to figure out how to spell feverishly). Or I would type a word—perfectly spelled—but not the word I was trying to type. Or I would say the wrong ones: calling my long time archery coach Dr. G instead of Mr. C or our neighbor, Deb instead of Bev. Or the scariest one when I was trying to read our license plate number to Avram, and I kept turning the sevens in Js, even though I was looking right at it and knew I kept saying it wrong.

Nothing could be scarier than not being able to speak to Avram. Being in conversation with him is probably the biggest joy of my life, and now, something threatened that, lurking around the edges and tripping things up. When I told my acupuncturist (the amazing Tamara Berisha) about all of this (plus some fainting in a gas station) she said, you realize that this is all neurological, right? And then she said, it’s not like you have Lyme disease. And then I reminded her that I had. Or did. Or whatever it means to have been exposed and not treated, then exposed again and treated but still present with symptoms.

I didn’t want this to be Lyme disease. I thought that the almost year on antibiotics would be enough. Then I thought the year on a herbal protocol would be enough. But I am learning that perhaps I thought wrong. I’ve found myself a new Lyme Literate Medical Doctor, and I just submitted myself to a battery of tests, leaving me in the wait and see category for the moment.

But as a Louise Hay admirer, I know I have to look at this situation. I work in words when it comes to figuring things like this out, looking to the metaphor of something in the body to see how it might apply to the larger whole. In this case, the metaphor reveals itself quite easily—I am losing my words. For a writer, there many nothing more devastating, except in my case, I asked that my “words” stop. I told creativity to take a long walk off a short pier.

So while I wait for answers from the LLMD, my spirit holds this other truth—I need to turn it on again. I said to Joe, I get it, I need to write—but what? No stories call to me. The unfinished novel fails to beckon. Share your view of the world, he said—people like to see something beyond normal. (I didn’t get offended at the beyond normal bit—I know that I was minted a weirdo at birth). And it hit me—the words I needed to write weren’t just any old story—they were my own.

I need to let words flow through me, the way they always did before. I have to accept that what I may write won’t find a reader or success (whatever the hell that means). It means putting myself out there. It means writing this. It means actually putting on paper about all of the things that light me up like learning from illness and seeking personal growth through archery and listening to intuition.

I also see the main roadblock in my way to doing this. I falsely believed I needed to earn some kind of credential before putting my personal story out into the world, that I needed to be some kind of noteworthy individual first before my voice would be worth recording for others. Like maybe if I won an archery tournament. Or had a story published somewhere exceptional. Or earned another degree. I waited on some external permission slip to capture my own experience on the page. Losing my words, watching them slip away from me in pieces at a time brought this idea of waiting for permission crashing down—what if I don’t have time to wait?

So it goes. I wrote this. I am open to the next idea that comes to me, and the one that comes after that. I am asking creativity to come back. I’m ready. Finally. Ready.

15 Comments