My Story

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I remember the moment I got sick. It was an icy Maine night in December of 1991, halfway through my senior year in high school. I was playing pool with my boyfriend in his parents' garage—smoking Camel cigarettes and listening to The Doors on cassette. It was my turn to take a shot when a wave of nausea washed over me. Not long after, it progressed into what I thought was the flu—body aches, fever, fatigue, the works. After several days in bed, ... Read More

Coming to a head

Graduation was just around the corner, and I had one thing on my mind—to move to the city and become a hairstylist. It was a dream I had since I was 5 years old. I'd spend hours giving my mom "free hairdos" in my imaginary salon. Then I started experimenting with scissors on my dolls, and then my own hair, and then my most forgiving friends and family. My ultimate goal was to become a runway stylist in New York City. (Yup, ... Read More


It was mid-November, 1992. I lay there in the dark, strategizing how I was going to get to my landline in the corner of the room. I finally mustered up the strength to roll over and then slid off the side of the bed onto the carpet. It took about half an hour to crawl-rest-crawl my way over to the phone. 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 ... Read More

Peeling the Onion

It had been over a year and a half since the day I got sick... The fever and nausea finally started to subside (hallelujah!), but I still felt queasy and bloated, and I didn't have the energy to get out of bed—much less leave the house. I had already been to 14 doctors, and I just couldn't stomach going to another one. And then my mother heard about a doctor who performed a special blood test—some kind of "alternative medicine." In an act of ... Read More

Leaving the Nest

For the first time in over 2 years, I felt like I was making headway. I finally felt good enough to write letters, cook most of my meals, and even leave the house occasionally, but something still wasn't right. No matter how much I ate, I kept losing weight (now dipping down into the 90s). I tried eating even more, but my weight kept plummeting—along with my newly regained energy. It was like my life force was returning and fading at the same time. ... Read More
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