I’ve forgotten many things in my life: my keys, the answers to test questions, my friend’s birthday. I never imagined I could forget how to walk. But that’s exactly what happened when I was 27 and suddenly got sick with brain inflammation.
The day my legs stopped working, I had just finished teaching a violin lesson. My student packed up his violin. I nodded as he told me the plot of one of his favorite TV shows. When I stood up to walk him to the door, my feet stayed rooted to the ground. My legs didn’t hurt. They simply refused to follow directions. Walking felt foreign, like I was being asked to perform a dance I had never learned.
My student waved goodbye. My heart pounded in my chest as I fought off panic. I shuffled forward as if I were ice skating, then grabbed my phone to call for help. My fingers trembled as I held the phone to my ear.
The next few days were a blur of emergency rooms, doctor visits and tears. More needles than I could count pierced my skin with medicine that wouldn’t be enough to fix me. But one memory will always stay with me: my doctor leaning over me as I lay on the exam table and the sadness in her eyes as she said, “You have severe inflammation in your brain called cerebritis.”
Then, my doctor turned to my mother standing in the corner of the tiny exam room. In a voice she must have thought I couldn’t hear, my doctor gently told my mother, “This is a bad one. She might not recover.”
I’d forgotten how to walk in just a second. Remembering would take years.
Four years before I forgot how to walk, I’d been diagnosed with a chronic illness called lupus. About 1.5 million people in the United States ― mostly women of color ― live with lupus. They are your coworkers, your friends, your sisters. No one knows why some people develop lupus and others don’t, although genetics play a role. Lupus can be mild or severe, attacking organs such as the kidneys, the lungs or the heart. In rare cases like mine, lupus causes...