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The author during her stay at the Hospital of the University of Pennsylvania, where she was treated for encephalitis in 2015. “I do not remember this day,” she writes.
On Oct. 28, 2015, I left my high school teaching job early because I thought I had the flu. I had been feeling off for a while, but I chalked it up to seasonal allergies, run-of-the-mill headaches, and exhaustion from work and being a mom. The doctors I saw had a way to explain each lingering symptom, but by that day my head wasn’t just aching ― it was burning. I could barely move or open my eyes. I felt lightheaded and weak. I became nauseated by the slightest smell. I had still made my way into my second home, my high school classroom, hoping that if I pretended to be OK, I would be.
It didn’t work. At the school nurse’s office, I learned I had a fever and decided I needed to go home. I kept my head down to avoid the bright lights and stale smells in the hallway, and my teaching friends walked me out. I didn’t return for 15 months.
My ex-husband had my kids that day, so I immediately crawled to my bed when I got home. I drifted in and out of sleep, occasionally waking for sips of water or to use the bathroom. My fever continued to climb, and so did my lethargy.
I spent the next day in bed. I eventually remembered that my children needed to be picked up from school.
“I just need help getting the kids,” I told my mom. “Please do the pickup for me.”
“OK, I am telling your dad, too,” she replied. “I’m worried. Promise to get to a doctor. You need to get checked out.”
Hours later, I heard voices in my ear so loud that they jolted me awake. It was my aunt and grandmother, both of whom are deceased. It sounded like they were in the room, shouting. It was an experience that words can’t describe.
Then I saw black bats in the corner of my bedroom, flying around as the afternoon sunlight filtered through my curtains. “What the hell is happening?” I wondered. Was I dying? Was I losing my mind? Was this how that happened?
For the next several hours, I experienced waves of dizziness that terrified me. I never lost consciousness; it was just a constant warm and tingly weakness.
I was fading and knew I needed help. I remember thinking, “How can I explain this without sounding crazy?” I called my then boyfriend and calmly told him that I needed to go to urgent care. He drove me to the closest hospital. I stumbled into the emergency room, puked, collapsed into a chair and waited to be seen. When I finally talked to a doctor, he asked if I might be pregnant or if I could have been exposed to Lyme disease.
I had a CT scan, and after waiting hours for the results, the doctor said I had an apparent mass on my brain and needed further testing. My sister, who is a nurse, made some calls, and soon after I was in an ambulance headed to the intensive care unit at the Hospital of the University of Pennsylvania. The doctors there believed I had a brain infection, so they treated me with antivirals. My brain was quickly inflaming, and I was hours away from slipping into a coma.
The author and her two children the day after she was discharged from the hospital in 2015. “I was very sick and scared, but relieved to be back together,” she writes.
After several lumbar punctures and more scans, I was diagnosed with herpes simplex virus encephalitis . Worldwide, 3.7 billion people under the age of 50 have herpes simplex virus type 1 (HSV-1), which is commonly known for causing cold sores, usually around the mouth and nose. But there are a few people ― about 1 in 250,000 to 500,000 per year ― in whom the virus travels to and infects the brain. Scientists aren’t exactly sure how or why this happens, but when it does, it can cause long-term symptoms, permanent neurological damage or even death.
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