The story I shared live at the Spoonie Collective storytelling event in Bristol, VT
Some kids’ parents brought home ice cream to eat as a family while watching a cool TV show. My dad brought home a beaver carcass to dissect and then leave for the maggots to clean up so that he could harvest the skull as another decoration in the living room. Which is just as well because ice cream makes me ill and we didn’t really have TV. I feel so fortunate to have grown up in the woods with a wetland as my backyard. I was too introverted for friends, but it was fine because I had two beaver dams, a fox den, and infinite birds to keep me company. I especially loved the days when my dad would bring home animals that had been hit by a car. We’d cut them open with his veterinary surgical tools and he’d tell me about the organs and how they functioned. It was so organized and systematic. There was a mechanism for how everything worked. I wanted to know more about beaver tails, so he got me a dead one and we found the answers inside.
When I wasn’t chasing frogs in the pond or sitting for hours watching spiders create webs, I went to school. At school, kids chatted about their home lives, and I learned very quickly not to mention the animal skulls over lunch. I began to realize that what seemed quite normal within the comfort of my home was actually seen as quite abnormal.
By the time I left Vermont to go to college, I found pride in my quirks and my upbringing. and decided to be more true to myself and find friends who could accept me for that. But as I became closer to my peers and experienced living in a dorm, I got an intimate look at other people’s lives and, more specifically, how their anatomy functioned.
My body was always kinda weird, but just like my pastimes, I didn’t notice it too much because my family was just as quirky. Sure my GI tract was a mess, but it wasn’t that much worse than my family’s. Yeah my joints popped and hyperextended, but everyone in my family had that to some extent. Maybe I got migraines and ulcers and dry eye and fungal infections… but then again, so did one of my parents. So I just figured I was normal, yet somehow a wimp for not being able to handle life the way everyone else in the world seemed to.
But in college, I noticed that no one else got horribly ill after ¼ beer. No one else ate 4 or 5 plates at the dining hall and kept several granola bars on hand at all times. No one had migraines that lasted for 10 days or ulcers in their throat, eyes, and genitals. I distinctly remember, while living in a suite with 8 girls, I stood up to walk out of my room and, like often happened to my sister and I, my vision blacked out, I lost all feeling in my limbs and face, and crumpled to the ground. I waited a minute for it to pass and then bounced back up, shook it off, and smiled at my suitemate who had apparently witnessed the whole ordeal. She looked utterly shocked and said “you’re freaking me out.”
So, ok, my body’s not normal, but that’s why we have science! Science can bring me evidence, answers, definites… I just needed to look inside to find the answers.
I had MRIs and ultrasounds and x-rays and echocardiograms and cameras shoved in almost every orifice; I kept a detailed scientific journal in which I recorded everything I did, ate, and excreted. I took my blood pressure and heart rate and recorded dozens of results. I read books and websites, contacted specialists, interviewed a friend who had similar symptoms... I was determined to find the answers.
A million panic attacks, road trips, and doctor-induced traumas later, we finally found a diagnosis. I was PUMPED. But… it’s such a newly discovered disease, that the science was spotty and inconclusive. Every doctor had a different take on what it meant.
I went mad with uncertainty. I needed to know, but it was an impossible challenge. I never found the answers. Honestly, I don’t think it’ll ever feel resolved. My symptoms change constantly as it continues to evolve.
But that’s actually what I love about science -- exploring the unknown! I truly believe we will never have all the answers about nature, brains, other galaxies, or even our own cells. But that’s what drives people to become ecologists and neuroscientists, to go to space, to build better microscopes. There’s always something more to explore. I just need to rediscover the thrill of the quest.