(and other chronic conditions that ate me alive)
An Autoimmunebiography, Part 1
I’m shuffling through a box of old photos and stop on a picture of myself at age 17, sitting on a log in the wilderness, high above Spring Creek. It was summer, and we were outfitting Camp Number 1 for the upcoming hunting season. What always takes me back in time are not the details, rather, how I felt inside in that moment—all recorded on a curling piece of plastic-y photo paper.
By the way, who decided that photographs in 1985 needed an unnecessary linen-like texture and weird, round corners?
What takes me back was neither my totally awesome Flock of Sheep perm, nor my insanely hot teenaged Soldier of Fortune boyfriend, nor that a whole bunch of orange bailing twine and a big green tarp can make any camp space seem comfortable and safe. All I see is the exhaustion and the gravity pulling at my face. I read my face and remember exactly if it was a good day—or even more likely—a bad day.
This was a bad day. And, the start of what would be many bad days that would pile up in the wake of my long-term, undiagnosed, chronic illness. Nearly 30 years would pass before I would get an official diagnosis and could begin the process of healing. In that time, my health became a desperate and hungry dementor that I carried around on my back. Some days it was debilitating, dark and heavy, with claws dug deep into both sides of my twisted spine. Other days I barely knew it was there. Over time, however, it managed to affect almost every aspect of my life.
My first husband, who was from Mexico City, had a name for it. He called it, “No Puedo,” which means, I cannot. As in, I quite literally, cannot.
After nearly 20 years, my second husband ended up resenting me for it.
My illness started as a simple case of mono. I could try to blame the aforementioned hot BF, but he never exhibited symptoms. I’m guessing he was able to elude the virus under all that camo. And hotness.
Truth be told, there are so many ways the Epstein-Barr (EBV) virus can invade a body and slowly destroy immune health and steamroll other systemic functioning. It can sneak its way in by kissing, through tears or by simply sharing a glass. Hell, I probably re-chewed my best friend’s triple wad of watermelon Hubba Bubba when I was a kid, and anyone who really knows me will tell you I’m practically expert at crying.
Now I was falling asleep in 12th grade government class. Not because it was government—I was just simply too tired for living.
My mom initially suspected mononucleosis. She requested a mono test and was denied several times by my doctor because I didn’t have any of the other typical symptoms like swollen lymph nodes, a fever or sore throat. But, I had headaches almost every day and I was going to bed at 7 PM.
When it came to taking care of me, my mom was like a dog with a bone. And thankfully, she gnawed on that doctor until he agreed to test me for mono.
The next day, the very same, very apologetic doctor called to confirm what we already knew; I had mono.
I think my mom’s response was something along the lines of, “Well, NO SHIT!” … She’s always had a very direct and classy way of expressing her discontent.
Okay, so now what?
The image, “Dementor #1” is by Alexander Goncharenko.