I remember when a pile of leaves was a safe place to land and just that.
Autumn 2010 was the first fall that we didn’t make a leaf pile in the backyard. The first fall that the big rake stayed in the garage and we forewent the mindless fun that comes with just being a kid.
My 10th year brought a series of firsts for me.
I was 10 years old when I had first gone on a roller coaster without crying, tried deodorant, arguably a little too late, and learned what the words Lyme Disease meant.
Autumn 2010 also brought the first of a sea of diagnoses.
Upon returning from my first three weeks at overnight summer camp, I anxiously watched the last days of summer grow colder and braced myself for my glory days as a full-fledged fifth grader. It was that same August that the tick-borne disease crawled its way into my vocabulary.
To a sun-kissed 10-year-old who had the world at her fingertips, Lyme Disease was merely the reason mom gave us cash for the candy store because she was too tired to make dinner that night. Being 10, the blaring red flags were temporarily masked by the fact that, that night, my big sister and I got to race our razor scooters down the street, filling our bellies with Razzles and cookies and cream Hershey’s bars, instead of broccoli and baked ziti.
I envy the days that I didn’t realize how severe it all was.
Time would pass and Lyme Disease would steal more than home-cooked dinners. An unclear diagnosis for my mom eventually found its way to me and soon after, my sister.
Lyme is most typically contracted from a tick bite, which can be as small as the point of a pencil. The extremely limited knowledge on Lyme and its various coinfections leads most people to disregard how life-altering this diagnosis can be, or how common it truly is. Despite showing up in my mother, my sister and myself, the disease is not known to be genetic, but just wildly underdiagnosed.
While not overtly fatal, Lyme Disease managed to rip away the simple luxuries of life that I took for granted every day until that point.
Lyme Disease replaced mornings meant to be spent in school with countless vials of blood. Lyme Disease replaced running and playing outside with crippling joint pain and ever-present exhaustion. Lyme Disease turned a pile of leaves from a safety net into a place to get sick.
Something as simple as going outside would become a stress on our family as it was sandwiched between seas of bug spray and a thorough tick check.
And the worst part was, and continues to be, nobody believes you.
If Lyme Disease ever comes up in conversations it is most often followed by the denial of its existence or someone asking “Isn’t that what dogs have?”
As I have continued to grow almost 10 years later, the lessons of Lyme remain constant. My mom, who has become, for all intents and purposes, an all-knowing medical goddess, speaks to suffering strangers for hours on end, referring them to specialists because even their own doctors don’t know how to help them.
I believe that a life intertwined with such a complicated disease forced me to grow up on a maturity fast-track. While my family ensured that not an ounce of my childhood would be given up at the sake of the disease, each one of us faces the constant apprehension that the darkest days are only a tick bite away.
I am consistently troubled as I see similar suffering in our everyday world. I see overlaps with what Lyme patients endure and the #MeToo Movement. Not at all to equate the experiences of the two, but the concept that despite it being human nature to face unwarranted suffering to some degree, suffering need never be escalated by the nature of not believing. In cases of sexual assault, we have historically gone on to question the validity of stories of survivors, as if their personal trauma was not suffering enough, they must prove their pain to be heard.
Lyme Disease patients are more often than not turned away by doctors. The lack of medical research has led to a vicious cyclical of disbelief. Doctors who do not believe their patients exist as a result of pharmaceutical companies who refuse to cover the nuanced and underfunded disease.
Patients are then forced to question themselves. As symptoms cannot be seen and many times do not appear on the first or even second blood test, pain is delegitimized and suffering is perpetuated.
As someone who was lucky enough to have the resources to get healthy I believe I hold a responsibility to take time and understand the human condition with a little more sincerity. To understand that everyone, in some sense or another, has faced their own metaphorical leaf pile. A world that once seemed safe, and one day was not.
I believe that the understanding of one another even on the most minor scale can contribute to a better world, and maybe even give someone in need a safer place to land.
Emma Satin, ’21, is the opinion editor for The Brown and White. She can be reached at [email protected]