What in the world have I done?! I thought to myself.
A wave of panic ran through me, and my heart began to pound as I stared back at the computer screen. I couldn’t believe it finally happened. I’d exposed myself before the whole world—my life story, in front of any eyeballs that landed upon it. Despite everything in me saying I shouldn’t be sharing so much, I’d just published the first post on this blog. But there was no turning back now. Continue reading “4 Things I Learned from 4 Years of Blogging… And an Announcement!”
In June 2014, I lost my body.
Over seventeen hours, I watched in shock as my body grew a mind of its own, erupting in wild, bizarre movements I couldn’t control. What started as innocuous twitches in my legs grew into full-body thrashes and twists and jerks over the course of one day. And then I realized I couldn’t walk, because every few steps, my legs gave out and sent me collapsing to the floor. Continue reading “I Woke up in a Body I Didn’t Recognize: Living with Involuntary Movements”
For the last eleven years of being sick, time has been my enemy.
The first sign I was ill was that I started moving in slow-motion—I lost awareness of time passing. Doctors thought it was late-onset Attention-Deficit Disorder. Instead, as I’d find out eight years later, my immune system was attacking my brain.
Continue reading “The Part of PANS/Encephalitis Recovery We Don’t Talk About”
These days, when friends ask how I am, I tell them I’m fantastic—and for a moment, I almost believe it.
I tell them about my new projects. I tell them about grad school in the fall. I tell them about a professional development program this summer. When I talk about everything I’m doing, I fool everyone—even myself—into thinking I’m healthy. Continue reading “Why I’m Doing Better Than I Think”
“Close your eyes,” the Lyme specialist said. “And hold your arms out straight.”
My body began to jerk while I stood in front of the exam table with my arms extended. As I strained to stop the involuntary movements, I could sense my parents’ dismay even through my eyelids.
Continue reading “How I Finally Made Peace with My Lyme Diagnosis”
Three months ago, as I drove away victoriously from the IV infusion center for the ninth, and final, time that semester, I almost dared hope I’d left behind the last three years of treatments and relapses… Almost.
It was the end of my college career, and I’d just spent its entirety fighting Lyme disease and an autoimmune condition that doctors still aren’t sure how to treat—or what the long-term prognosis is. I’d not only juggled exams and papers and weird living arrangements for four and-a-half years, but I’d been battling through countless procedures and medications and appointments—always in the naive hope that my illness would soon be over. Continue reading “Is There Hope in the Unknown of Chronic Illness?”
As graduation approached last semester, people constantly asked what was next. What did I want to do with my life? Did I have a job? Would I stay in the city? Was I going to grad school?
Before my PANS relapse in August, I thought I knew all the answers. However, this disease returned not only to attack my brain, but to destroy all my plans.
Continue reading “Is This the Hardest Job in the World?”
When people talk about PANS and Lyme recovery, I’m frustrated that it’s always in terms of symptoms. For me, it’s never about the symptoms—it’s about coming back from the dead and regaining the parts of me that were lost.
When PANS makes my immune system attack my brain, the physical effects (similar to a brain injury) give me a mental sense of losing who I am and even of being disconnected from reality. Continue reading “Not About Symptoms: The Truth on PANS/Lyme Recovery”