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How West Nile Virus Nearly Ruined My Life

Most people get the disease and don't notice it. But it landed me in the hospital and out of school for a long time.

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Technicians with the Contra Costa County Mosquito and Vector Control District drive a truck through a neighborhood fogging with Pyrocide 7396 insecticide on August 23, 2012 in Brentwood, California. In the wake of the largest outbreak of the West Nile Virus in the U.S. history.

I was in my first month of college in 2005, and I had a weird rash on my back and my legs that couldn’t be cured with Benadryl or any other lotion. It seemed to spread the more I scratched it. My roommate, who was pre-med, told me and my other roommate that I had West Nile virus. And like any sane college students, we ignored her and blamed the rash on allergies and my recent loopy behavior on alcohol and sleep deprivation.

But I did have West Nile virus — though I wouldn't get a correct diagnosis for weeks. And in that time, my symptoms got so bad that my parents weren't sure I'd ever be the same.

When West Nile virus returned to the news this summer (this time because of its largest outbreak ever in the U.S.), I braced myself for a flood of gchats, email, and phone calls from my parents and college friends reminding me to wear bug spray and avoid mosquitos at all costs. The virus, which normally causes mild illness in most people my age, has been deadly to hundreds of elderly, infants and other at-risks populations since it first became a cause of alarm a decade ago. But when I was an otherwise very healthy very normal 20-year-old college junior, it morphed into West Nile encephalitis, landing me in the hospital for days and leaving me sick for two months I don't even remember.

After a few days, the rash got worse, my head began to hurt and I was too exhausted to really move, so I went to a doctor on my campus near Chicago. She diagnosed me with strep throat and sent me home with a prescription for antibiotics.

I remember a few things that happened over the next two months of my life, but mostly I've pieced it together from things I’ve been told: I slept for most of the day and didn’t go to class, the school newspaper where I was an assistant sports editor, or sailing team practice. I had started to get migraines the year before, so when my roommate offered to take me to the hospital, I declined, figuring it would pass. When a visitor offered me Advil and even went so far as to put it in my hand, I stared at it, letting the red color of the pill bleed into my hand before deciding to dump it behind the bed. Finally, after an alarming phone call to my parents and enough strange behavior to scare my roommates, someone called an ambulance.

When the paramedics knocked on the door, I remember thinking it was the police who were coming to break up a party we were having (it was a weekday afternoon). I remember politely letting them in and profusely apologizing. Then, I offered them a beer.

Once transported to the hospital, I’ve been told I got a spinal tap and at the time was so delirious that I giggled through it (spinal taps, which I learned the second time I got one, are incredibly painful and not giggle-worthy). I went through a bunch of other tests. My mother, who had been flying into Chicago for a conference anyway, came directly to the hospital, where she and later my father spent two sleepless nights until I was discharged. They took me home to Baltimore for a few days, where I was supposed to rest up for a week before heading back to school. At this point, they had been told I had non-fatal form of meningitis, which I would have recovered from much more quickly.

But when I got home, it was obvious I was still very sick. My father watched in horror as I made Kraft macaroni and cheese incorrectly (I dumped the powdered cheese into the boiling water with the pasta and stirred). I threw up all the time. My head hurt worse than anything I’d ever felt before. I didn’t know what day it was or often where I was. When my friends called to check in on me, I told them I had just come home to visit my favorite ice cream shop (it wasn’t open anymore). When my mom tried to take me to the movies, I had to leave early because the noise was so overwhelming. And my spatial reasoning was so bad, it made getting on and off escalators incredibly difficult for months.

The tricky part, at least for my family, was that after the initial symptoms subsided, I didn’t understand how sick I was and at times I masked it very well so they didn't know just how much I shouldn't have been allowed to do. After a week or so at home, my parents thought I was well enough to send back to school and arranged my return for the following week. A day before I was supposed to go back, my mother let me drive the car to go get my hair cut only to have me turn to her on the highway and ask, “Which one is the brake pedal again?” My trip back to Chicago was cancelled.

Finally, a doctor referred my parents to a neurologist at Johns Hopkins who correctly diagnosed me, prescribed me more medicine (including steroids which I refused to take because in my confusion I decided they were similar to the Soviet-gymnastics era ones) and told my parents that in time, I would be fine.

After more weeks of sleeping, being incredibly confused, then finally eating a ton (I had lost a lot of weight which meant I could binge on ice cream and those thousand calorie bagels from Panera), and slowly getting better I was well enough to venture outside of the house on my own. I got a job folding clothes at the local Gap. I went to the gym. My dad’s a professor so he had me sit in a full class of his co-worker’s to see if I could do it. And finally, when the next semester began, I went back to school.

Once the proper blood tests are run for West Nile, it's pretty easy to diagnose. But because West Nile encephalitis is so rare in people my age and meningitis is so common, it's doubtful that the doctors at the first hospital I was admitted to bothered to run the tests for it. My parents are also pretty sure at least one of the nurses at the first hospital I was in believed I was faking the whole thing to get out of school.

It’s been long enough since I was sick that I mostly laugh about it – in between the awfulness, the swelling in my brain made me extremely goofy and made for some funny moments — in retrospect anyway. But for many people who have West Nile encephalitis, life is never the same. Some die, some are left with permanent brain damage. Others have kidney problems. I was very lucky and other than emotionally scarring my parents for life, never really had any lasting effects. Except for the constant reminders to wear bug spray.

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