I lay there in the dark, strategizing how to get to my landline on the other side of the room.
Eventually, I mustered up the strength to roll over, and then I slid off the side of my bed onto the carpet. It took about half an hour to crawl-rest-crawl my way over to my phone. It was late, but I couldn’t wait any longer to make this call.
I could hear the panic in my mom’s voice when she answered.
“I feel like I’m dying,” I sobbed. “I want to come home.”
I don’t know what felt worse at that moment—the “flu” that wouldn’t go away or the fact that I was failing out in “the real world.”
My parents came to get me early the next morning, and Mom drove my car so I could have it with me when I felt better. Despite my fears, part of me still believed this was all just temporary and that I’d be back in action in no time.
Beauty school dropout
I barely moved for 6 weeks.
Whenever I’d get up to walk, the room would start to go black. Even standing in the shower was risky, so I’d just sit on the stall floor and let the water wash over me. I didn’t have the energy to care about bathing anyway.
I eventually started feeling better, but I think it was more sheer will than genuine health. I knew if I didn’t go back to cosmetology school soon, I would have to forfeit my enrollment—which wasn’t an option in my stubborn teenage mind. The moment (and I mean the moment) I felt like I could make the trip, I packed up and headed back to my apartment in the city.
I made it three-quarters of the way there before I totaled my car in an accident that I was lucky to walk away from. Granted, it was a confusing intersection that was notorious for collisions, but I should never have been driving that day.
A nearby family member gave me a ride to Portland, and my roommate Brad met me in the lobby to help me with my bags. As we headed up to the apartment, I caught a glimpse of myself in the elevator mirror—pale, sickly, and scraped. Neither one of us said a word, but the judgment was palpable. I was a mess.
Despite my pitiful state, I tried going back to my classes. It might’ve been for a day, maybe more. I don’t remember anything except the cold, gray concrete bathroom.
I had no choice anymore. It was time to officially withdraw from cosmetology school.
If I remember right, I stayed in Portland a few more weeks until I finally admitted I was too sick to take care of myself. Once again, my parents came to get me, this time, indefinitely.
I spent the next several months in bed or on the couch with what felt like the never-ending flu.
I had a fever, debilitating fatigue, and a strange ache under my left rib cage, but the worst part by far was the nausea. It was constant and got worse with everything I ate—which wasn’t very much. My once hearty Maine diet was now reduced to bird-size quantities of Cream of Wheat, mashed potatoes, gravy, toast, Saltines, and Ginger Ale.
Mom was desperate for answers and was willing to do ANYTHING to help, so she and my step-dad shuffled me from one doctor to another, while they ran just about every test imaginable.
First, there was the Upper GI Series, which involves drinking a chalky white substance that lights up your stomach under x-ray. Mom tried convincing me it was like drinking a milkshake. It wasn’t.
Then there was the endoscopy where they put a camera down your throat to scope things out. I was terrified of this one, even though I was told I wouldn’t remember a thing due to the amnesia drugs they give you. I even asked the doctor, “You say I won’t remember any of this, but will I experience it, to begin with?” He just stared at me blankly. I finally surrendered and fell into a deep, merciful sleep.
And then there was the “radioactive oatmeal” test…
As I entered the cold exam room, I was hit with a familiar waft of barium and sanitizers. Nobody was around, but it was obvious the food sitting on a steel tray was intended for me. I sat down and stared at the bowl of oatmeal, which was topped with a thick layer of clear, viscous liquid. I’m not sure how long it had been sitting there, but the oats were as cold as the canned peaches served with it. Thank goodness for the little paper cup of brown sugar, which was the only reason I got down four bites of my special breakfast. I didn’t eat oatmeal again for a long time.
Despite all of these tests (and many more), nobody could figure out what was wrong with me—aside from vague assessments like irritable bowels, slow motility, and delayed gastric emptying. The most conclusive diagnosis I ever got was Chronic Fatigue Syndrome from the Harvard doc who coined the term. His exact words were, “Whatever this is, you’re a classic case of it.”
Regardless of the diagnosis, the treatment was always the same—more antacids, PPIs, and antidepressants, which only made me feel worse.
And then a tiny drop of blood changed everything.