Like many of my most poignant personal stories, my Lyme disease story starts in the forest… During the summer of 2015, at the age of eighteen, I left behind my friends and family, crossed the Long Island Sound by ferry, moved my belongings into my new student apartment at Connecticut College, and spent the summer as a student at the Eastern Pequot Archaeological Field School in North Stonington, Connecticut. It was my first time living away from home and I was determined to prove myself. This field school proved to be one of the most rewarding and exhilarating experiences of my life – and it set the stage for all the historical research I would later undertake. To me, there is nothing quite like the rush of doing archaeological fieldwork for the first time; there’s no feeling like pulling a nail or a broken piece of ceramic out of the ground and knowing you’re the first person in several hundred years to touch it. This experience opened my eyes to the necessity of collaborative research, the impact of my own white privilege, issues of Native sovereignty, and to the rich history of Native persistence in New England. [1]
But archaeological fieldwork is not without risk. In fact, archaeologist Joseph Flanagan wrote that, “The perils of archeology are not restricted to collapsing trenches. Archeologists risk exposure to Lyme disease, valley fever, rabies, hantavirus, cryptococcosis, and an assortment of toxic wastes.”[2] Lyme disease, in particular, is a huge risk to archaeologists working in New England. During my fieldwork there, we were well educated and well warned about the perils of this disease. My professor at the time told us stories about his own experience with Lyme. He even recalled that one summer, after receiving a tick bite, he suffered from debilitating exhaustion and fell asleep in the field against a tree. When he woke up, all of his students were packed up and ready to return to their student housing; he was almost left behind!
We took every precaution during the fieldwork: we did frequent tick checks, pulled our socks as high as they would go, wore long sleeves and long pants in the field, steeped our clothing and gear in permethrin (an insecticide recommended for use against ticks), sprayed ourselves with bug spray with a high DEET content, and hoped for the best. Between the ticks, poison ivy, rocky soil, mosquitos, and summer humidity, archaeology in New England is physically exhausting work. At the end of the day, we all piled into the field van, returned to our apartments, checked ourselves for ticks, showered with copious amounts of Technu (an over the counter skin cleanser which removes urushiol oil after exposure to poison ivy, oak, or sumac) and collapsed into chairs around the dinner table. At the end of the summer, I packed away my trowels and left field school mostly unscathed- aside from some poison ivy scars, mosquito bites, and a heat rash that took a few days to go away.
A photograph of Erin working on the field that summer.
Upon my return to ‘real life’, I was dealing with crushing homesickness. I missed the forest, I missed my friends, I missed living and breathing my passion and I missed being around people who understood me at my nerdiest, my most studious, and my most excited. Outside of the field, I was an anthropology student surrounded by engineering and computer science friends on very different paths. I was also going through my first major heartbreak with an unrequited crush (side note: it turned out to not be so unrequited. Reader, I married him. It just took a few years!). My studies took my mind off this to some extent, especially as my work grew more demanding.
To fulfill general education requirements, I enrolled in a Disease and Public Health in American History course. From my very first glance at the syllabus, I was fascinated; I was especially interested in the different historical conceptions of disease and the ways humans have understood the processes taking place within and around the body. For our midterm, we were told to write a paper on a disease in American history. With my mind still fixated on Connecticut, I wanted to write about Lyme disease, as I wanted to know if, historically, Lyme disease had any identifiable impact on the Native peoples, or on colonists in New England. Could we trace their fatigue in the historical record? Did they write about that characteristic bull’s-eye rash?
However, my professor talked me out of writing about Lyme disease. It was too ‘new’ of a disease, too historically invisible of an illness.[3] Instead, he pointed me towards another vector-borne disease: Rocky Mountain Spotted Fever (RMSF), a life-threatening illness caused by Rickettsia rickettsii.[4] Today, it is the most common tick-borne rickettsial disease in the United States, and is potentially fatal even in young people. While writing my paper about RMSF, I also learned a lot about Lyme disease, as both diseases had similar mechanisms of transmission and some treatments in common.
I did not realize it yet, but my connection with tick-born illnesses would extend beyond the classroom…
That same semester, I went hiking to complete an art project for my eco-aesthetics class. Ever mindful of safety, and after deploying all my tick prevention precautions, my friend Rebecca and I explored Connetquot State Park. We got lost on our hike, accidentally hiked several miles in the wrong direction, and lost cell reception. Five hour later, we emerged in the parking lot, hot, sweaty, tired, and hungry. Before diving into our post-hike pizza, I noticed that a minuscule tick (scarcely bigger than a poppy seed) had embedded itself into my forearm. My mother removed it, called the doctor, and secured an appointment just a few days later. Even before that appointment, I began to notice signs of extreme fatigue, aching joints, chills, hot flashes, brain fog, worsening depression, and that telltale bullseye mark: all characteristic of Lyme disease.
I couldn’t believe it.
I was angry with myself and the situation, and got only angrier when the doctor didn’t believe me. She dropped the ball on my treatment, and it took several courses of antibiotics to get it under control.
A photograph of Erin on the day of the tick bite.
The following semester feels like a fever dream. It only comes back to me in disjointed flashes.
I’m meeting a friend at the Starbucks on the second floor of the Roth Center on campus. My feet feel like lead in my shoes and grow heavier with every step. But Joe has extra meal points to burn and has offered to buy me “lunch” (code for caffeination and a small snack that I’ll have to force myself to eat so I can take my antibiotics). I have no appetite and can barely keep my eyes open as I suck down a Trenta Pink Drink and pick at a pecan tart, down my meds, and loop my backpack strap around my ankle so no one can swipe it. I fall asleep on a couch of questionable cleanliness while my friends watch over me and my things with looks of concern.
***
I lean against the register counter during a shift at the campus bookstore, feeling absolutely crushed beneath the weight of my fatigue and flushed with fever. My fingers move too slowly during my transactions. I mention the dizziness, the heat, and the numbness to my friend at the next register. My boss overhears and sends me home- and then cuts my hours for the next week. I don’t know how I’ll pay for food next week, but at least I have time to sleep in the library between classes.
***
“You were like a car that couldn’t get out of first gear,” one friend remembers, “you didn’t seem overworked, it seemed like you were running on fumes constantly.”[5]
That semester, I attempted to pull all-nighters to write papers and complete assignments. I cried over my laptop because it all seemed so out of reach. It was a period of crushing depression, unbelievable fatigue, anxiety, and of pushing my own physical and mental limits. I was a first-generation college student – the first in my family to pursue an undergraduate degree. When you don’t know the acceptable threshold of normalcy in academic settings – or, even, that you can ask for help and accommodations – the deck is already stacked against you. Especially at such a large, math/science geared university, the impact of “push through” culture is pervasive. After a few months, and a few rigorous courses of antibiotics, my Lyme disease symptoms faded. Somehow, I pushed through that semester, but I was so incredibly burnt out by the experience. Unfortunately, burnout is all too common in universities, especially amongst women, and even more among first generation students.[6] This experience set the precedent for how I would later handle illness, especially during my first semester of graduate coursework.[7]
I had finally reconciled with my undergraduate experience and the impact of my time with Lyme disease, when COVID-19 hit and, once again, we were redefining our relationship to our bodies, the spread of disease, and to the environment. Could it be spread by touch? By interacting with our pets? Was it airborne? Were we already infected and just didn’t know it yet? It is a terrible feeling to not trust your own body. We donned masks and gloves at the gas station, ordered groceries via Instacart, FaceTimed with our grandparents, and moved holiday celebrations to Zoom. Every sniffle brought anxiety. I weathered the COVID-19 pandemic, but lost a step-grandfather, an aunt, both grandmothers, and four of my volunteers at work in a little over a year. I hunkered down in our one-bedroom apartment with Alex, my fiancé, while we both worked from home and worked on graduate degree programs - I earned my Masters in Nonprofit Administration in December 2020. To get our minds off of the anxiety, we turned to the outdoors.
I still love hiking. Especially during the height of the COVID-19 pandemic, Alex and I packed our rescue dog into the car and hit the road, seeking out fresh air, sunshine, and some socially-distanced recreation all over the island. We hiked Blydenburgh County Park, Camp Hero State Park, Sans Souci Park, Hecksher State Park, and Cold Spring Harbor State Park. Lyme isn’t the only prevalent tick-borne illness in our area: In Suffolk County, ticks are also known to transmit Ehrlichiosis, Anaplasmosis, Babesiosis, RMSF, Tularemia, and Powassan Virus; their bite can also trigger Alpha Gal Syndrome (AGS). We’re always careful, but no precautions are 100% effective. With the rise of global warming, it’s very likely that we’ll be seeing more and more vector-borne illnesses encroaching northward.
Erin, Alex (her husband), and Hawkeye, October 4, 2020, Camp Hero State Park, Montauk
I know I am one of the lucky ones when it comes to Lyme disease. It’s been six years since that disastrous semester. I graduated with my BA in Anthropology and History in December 2017, and my Master’s in History in 2018. It took so much time to find myself again afterwards; I don’t think I truly recovered from the burnout, until I left academia. Emily Nagoski and Amelia have written on the cycle of overwork and exhaustion in women and their book, Burnout: The Secret to Unlocking the Stress Cycle as the one self-help book that I found true value in.[8]
This experience deepened my understanding as a historian and also strengthened my resolve to be an empathetic, inclusive, and fair educator who understands that diseases don’t have to be visible to be valid. Students shouldn't have to risk their mental and physical wellbeing to attend class. Inside and outside of the classroom (or the workplace), students are humans who are worthy of empathy, dignity, and respect.
These days, I grapple with a different set of invisible illnesses – namely ADHD, anxiety, and depression. I was diagnosed with ADHD at at the age of 25, after struggling with severe executive dysfunction. I’m still learning to be kind to myself, to know my limits, to set boundaries, and to not get so burned out that I get knocked down. And, whenever fatigue rears its ugly head, I still ask the doctor to draw my blood for Lyme.
Just in case.
[1] Collaborating at the Trowel’s Edge: Teaching and Learning in Indigenous Archaeology. Ed Stephen silliman (University of Arizona Press, 2008) [2] Joseph Flanagan, “What You Don’t Know Can Hurt You”, Reclaiming Hanford (Summer 1995). Vol 8. No 2. https://www.nps.gov/archeology/cg/fd_vol8_num2/hurt.htm [3] Some Lyme disease researchers think the recent emergence of human Lyme reflects ecological change (climate change and land use change over the last century) rather than an evolutionary change of the bacterium. For more, see: Katharine S. Walter, Giovanna Capri, Adalgisa Caccone, Maria Dvik-Wasser, “Genomic insights into the ancient spread of Lyme disease across North America,” Nature Ecology and Evolution (October 2017): Vol 1. No 10, 156-1576 [4] Filipe Dentas-Torres, “Rocky Mountain Spotted Fever.” Lancet Infectious Disease. (2007) Vol 7, 724-732. [5] Personal communication with Joseph Caccavale (November 29, 2021). [6] Glenny A Valoy, College women in the 21st century: a closer look at academic, family, and work demands on levels of burnout, PhD dissertation (Yeshiva University, 2012) Pro Quest. [7] I nearly ended up in the hospital after burning a hole in my stomach and esophagus after experiencing severe acid reflux and attempting to push through to attend class. [8] Emily Nagoski and Amelia Nagoski, Burnout: The Secret to Unlocking the Stress Cycle (Ballantine Books, 2020).
Erin Becker-Boris is an independent historian from Long Island, NY. Her research interests focus on the convergence of women, labor, and the environment through a global extractive maritime economy. Her work in museums grapples with investing local peoples in their resources as stakeholders through outreach, education, and the development of new public programming. She has written for Gotham Center for New York City History, New York Almanack, Read More Science, H-Net Environment, and Global Maritime History. She can be found at @ErinE_Becker on Twitter.
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