Sometime in the last ten years, Jess got a tick bite. Maybe it was at our local park, where we would sometimes have picnics and watch the deer stroll by. Maybe it was that time we spent a night in Big Sur, our lopsided tent parked on a thicket of brambles. Maybe it was at Point Reyes, when she waded into a field of perfect golden grass for a picture. In the picture her hands are raised up in a classic Facebook “yay!” position, her face lit-up in a happy cackle. The grass tickles just under her armpits. It would be years before she looked on these forays into nature with any scrutiny. In the meantime, she became a scientist.
Jess knew at an early age what a scientist looks like. Her parents, first generation Jamaican and Guyanese immigrants, met at MIT, and they tried to instill a love for science in their children. “People ask me if I felt pressured into science–but I actually feel grateful to my parents for making it a very clear option.” She smiles across the kitchen table where we are whiling away a morning. “Sometimes it amazes me that anyone can get into science because it’s so intimidating. There’s this very specific idea of what it looks like to be a scientist, what it is to be a scientist.”
Making good use of our proximity to Stanford, in high school she began working in a lab that uses fly genetics to study how the brain develops. She learned how to mate flies and how to pull out their brains under a dissecting microscope. But the real impetus for her interest in neuroscience came from the community around her. “We were all super sleep-deprived, even in ninth grade. I just saw how it was affecting people.” Our high school was known for its high achieving students, but it was also known for less happy things – anxiety, depression, suicides. “I was curious why teenagers were like this – I knew the one thing that really defined us as teenagers in Palo Alto is that we were all sleep-deprived.”
Jess continued her studies in neuroscience at Princeton. She developed tools that allowed researchers to image neural circuits, making beautiful tangles of color. She also learned how to traverse the rarified world of Ivy League science as a black woman. “In many spaces, it’s not a priori obvious you should be there,” she explains. “You have to project confidence and a sense of purpose. … I’ve sort of developed that ability to always seem like I know what I’m doing.”
Throughout, she planned to use her training to study sleep. Jess is interested in sleep on a molecular level, and how sleep and psychiatric disorders are linked. However, in her sophomore year of college she started feeling fatigued. She would be worn out, like she was recovering from a cold, and wake up every morning with a headache. When she went to the doctor, he checked her for mono. When that came back negative, he told her to sleep more. She was a college student after all.
Despite the seemingly close relationship between sleep and fatigue, these processes affect each other in complicated ways. Muddling the matter is how we use fatigue interchangeably with tiredness and sleepiness in our everyday language. These symptoms can be caused by lifestyle or sleep disorders – someone who fights strong bouts of sleepiness throughout the day might need more sleep, or they might be narcoleptic. Someone who feels persistently weak, dizzy, and listless (signs of fatigue) might need more sleep, or they might be an insomniac. Beyond sleep disorders, both sleepiness and fatigue can be caused by acute infection (think flu) and chronic immune dysfunction (think lupus). As a symptom, fatigue can be crippling. As a tool for diagnosis, it is practically useless.
During Jess’s first year as a neuroscience graduate student at Harvard, her symptoms of fatigue started to get out of hand. It began to affect her work as a scientist. “[That] was the first time I consistently had moments when I looked at people, and they were disappointed in me,” she recalled. “That experience was scary.” After a year of rotations, Jess went on medical leave. She didn’t know what was wrong with her, and her health was going downhill. “It feels like you’re on a 21 speed bike but you’re stuck in first gear,” she explains. “You can go places, but there’s no way to work up momentum.” She thought medicine just might not have a solution.
Then in 2017, one of her doctors suggested she be tested for B. miyamotoi, a tick-borne pathogen recently discovered in the United States. B. miyamotoi is closely related to the bacteria which causes Lyme disease – but unlike Lyme, an infection is unlikely to cause a tell-tail bulls-eye rash around the tick bite. The Centers for Disease Control report fewer than 60 documented cases of B. miyamotoi in the United States.
Jess had it.
After a course of horse pill sized antibiotics, there are no more bacteria circulating in Jess’s blood–yet her fatigue persists. Since the apparent root cause of her sickness has been cured, Jess is in some ways back to square one. She has that nebulous diagnosis, Chronic Fatigue Syndrome, a condition without a cause. Nevertheless, she is heading back to graduate school. “You know, I’m coming back from medical leave but I’m not actually better. I don’t know if I’m doing the right thing. No one has answers for that.”
“Right now I’m trying not to be in my scared place.”