I’m twenty-four and I’ve been sick since I was ten. I got sick on the first day of fifth grade, and nobody believed it wasn’t because I didn’t want to go to school. A month later my parents pulled me out and I was homeschooled. I went through countless doctors, and that’s terrifying when you’re an adult, let alone ten. I found a nutritionist who helped me get well enough to go back to sixth grade, but by then I had many allergies and physical weaknesses that kept me from really fitting back in.
I stayed mostly healthy until eighth grade, when I got sick all over again. I had to leave school in the middle of the year. I was having panic attacks (of course it was all in my head!), short breath, vertigo, and I always felt like I was going to be sick or pass out. Another round of doctors ensued, one of whom wanted to admit me to a mental facility because he was convinced I was suicidal. Tell that to a fourteen-year-old.
I finished eighth grade at home and continued to homeschool, but I also continued to get worse. Finally, my family found out our home was infested with stachybotris, a deadly toxic mold. We moved, and we have nothing today that we owned before fall of 2001. It was a miracle that we got out relatively unscathed. We thought all our health problems were over.
We joined a church, and I joined the worship team. I loved it. Then I started getting sick again. I was too nauseous to go anywhere, too dizzy to sleep in any position but sitting up. It got so bad I spent nearly a year just sitting by the toilet. I’d often sleep in the bathroom. I’d just turned sixteen. I couldn’t go out and learn how to drive. I couldn't even think straight.
Finally, a doctor tested me and diagnosed me with Lyme. It was anticlimactic but the freshest air I’d breathed. I wasn’t crazy! I wasn’t making it up for attention. And there was a way to treat it. I was fortunate that the doctor who diagnosed me knew what Lyme really was. He put me on oral doxy and I stayed on it for two years, but didn’t get better. He put me on Mepron and I knew another kind of hell, hallucinating that I was awake when I was asleep and vice versa. I didn’t really have friends during this time. Everyone I thought was a friend didn’t know how to deal with my pain and so they stayed away. I didn’t leave the house except to go to the doctor.
I didn’t start getting better until I stopped taking antibiotics and started taking mega doses of probiotics. I got a lot better within three weeks, and stayed on the probiotics for several years. I’d lost too much school and by that time I was nineteen, so I dropped out and got a GED. I’d been in the gifted class when I was younger. To have to drop out and have a GED on my record was hard. Not to be able to think as sharply as I could at the age of nine was even harder.
When I was twenty-one I got my first job as a webdesigner, and the stress of it triggered the Lyme again. I went downhill until I got three months of IV Zithromax, which helped some symptoms, but created many others. I didn’t have medical insurance because I had no job. That was a year ago.
Now, I’m barely maintaining. I can’t drive because of the vertigo. I’m a novelist, but I can only write for short periods of time. I’m an illustrator, but I only have a small amount of energy to complete each project. I have so many food allergies that my daily meals consist of maybe ten foods and combinations thereof. I get a five-day migraine every time a storm comes in--and storms come in often where I live. I have TMJ so bad my teeth don’t even touch anymore. I’m looking at another round of treatment, but am sick with anxiety over the stress involved with it.
I used to dream of being an actress, but now I’m allergic to makeup. I dream of being a published novelist, but I have to tread carefully to avoid stress. I was a pastel artist for ten years, but now I’m allergic to the chalk. I used to play the hammered dulcimer well enough to perform, but now it hurts too much to play.
I can’t support myself, and I look healthy. I look good, don’t I? Everyone I don’t know thinks I am fine. But the Lyme under my skin tells a different story. The Lyme Wars have another battered soldier.
Of course, I’ll never surrender.
Holly Heisey, Pennsylvania