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 favourite 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 colour ― 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 inflammation in the brain, called lupus cerebritis.
For years, I’d lived with the crushing fatigue of lupus. I’d wake up exhausted even after sleeping for 12 hours. Still, I pushed myself to smile at work and be the best teacher I could be for my students. I loved teaching. I loved the violin. I didn’t want my career to be one more thing lupus stole from me. But after years of exhaustion and pain, on the day my body forgot how to walk, my body finally said, “Enough already.”
The inflammation in my brain didn’t just make me lose my ability to walk. It wrecked my long-term and short-term memory, my vocabulary, my sense of time, my personality and my sense of reality ― everything that made me who I am. I forgot my parents’ names and my favourite colour. A family member emailed my students to help them find different violin teachers since I couldn’t string a sentence together. I couldn’t process information well enough to make decisions, even small ones, like whether or not I liked yoghurt. I called everything that had happened in the past “yesterday,” whether it was taking my pills an hour ago or going camping as a child. My short-term memory was bad, so I couldn’t read books or understand movies because I couldn’t follow even the simplest plot lines.
One day, I couldn’t remember the word for “pillow,” so I asked my caretaker for a “head thing.” She smiled and brought me a hairbrush.
I went to bed and didn’t get up until eight months later.
At night, I would hallucinate bright dots of colour on the ceiling or see the air around me ripple like water. Am I going to die? I wondered, trying to push down the fear rising in my chest. If I lived, would I still be the same person I had been before I got sick? Before then, I’d known exactly who I was: a determined person who always had a goal to strive for. A woman who cared about the people around her and who loved her students. A lover of books, dogs and caramel coffee. Bedridden and unable to even remember my past experiences and what foods I liked, I didn’t know who I was anymore. I missed work and playing the violin, but mostly, I missed being myself.
I knew my best chance of surviving my illness was to stay positive. From my bed, I looked at memes on my computer and watched “Weird Al” Yankovic videos. Because my memory was so bad, I could look at the same memes over and over and still laugh. To cheer me up, my family read me one-liners off the internet. I clung to the only jokes I could understand.
After I had been bedridden for three months, the emergency infusions from the hospital and the handful of pills I swallowed each night began to work. The hallucinations and delusions went away. I began to remember what day of the week it was and listened to the pop music that I liked before I got sick. I remembered how I took my coffee and started asking my caretakers for a favourite shirt. Each memory I gained back filled me with joy. I was rediscovering pieces of myself that I’d thought were gone forever. But I still had a long way to go before I was myself again.
When my memory started to get better, I began reading, mostly about other survivors of brain trauma. I read articles about former Rep. Gabby Giffords. I read Jill Bolte Taylor’s A Stroke of Insight. There wasn’t much out there written by brain trauma survivors, but I read everything I could get my hands on. Often, I would have to read the same paragraphs over and over again to understand, but I kept trying. Reading about others who had survived what I was going through made me feel less alone. Their stories gave me the courage to keep focusing on my recovery.
I taped a list of all the things I wanted to relearn on the headboard of my bed. Vocabulary. Walking. Playing the violin. Telling time. Knowing what I like and dislike. Making decisions. Then, from my bed, I got to work.
I propped my laptop on my stomach with pillows so I could use it lying down. I forced myself to write a paragraph every day on any subject. I often misused words or got the tenses wrong because of my issues with understanding time, but I kept at it.
One day, I felt strong enough to leave my bed and shuffle to the living room in my house. My atrophied muscles felt like limp rubber bands inside my legs. I was too weak to even lift my feet, so I shuffled for months. My caretaker hugged me and brought me coffee in my favourite Halloween mug to celebrate. When I realised I wasn’t strong enough to lift the coffee mug, we chose to laugh and not cry. I spent many months drinking my coffee with straws.
I don’t know if it was my medicine or all the effort I put into getting better, but I slowly began to come back to myself. Because my fatigue was constant and unpredictable, I didn’t go to physical therapy. Instead, I relearned to walk on my own when I felt well enough. My legs grew stronger and started to carry me from my bedroom to the living room to the kitchen, then outside my house. Relearning to be myself again was just as mental as it was physical. I started to have conversations that actually made sense with my family and friends. I wrote thank you notes to my doctors and nurses when my thinking and my memory had improved enough. The day I unpacked my violin for the first time in many months was one of the happiest days of my life, even if I could only play for five minutes with a long rest after.
Some things came back more easily and quicker than others. For years after my inflammation, I struggled with making decisions, especially important life ones. It also took years for walking to feel natural again.
It’s been six years since the day I forgot how to walk. I’m back to teaching and playing the violin. I live with my two dogs in a second-floor apartment that I’ve decorated in red, my favourite colour. I can cook and take care of myself, and I get to drink caramel coffee every day without a straw.
While I’ve recovered from my brain inflammation, I still have lupus, and I’m still more tired than most people my age. Because I could develop brain inflammation again, I pay close attention to patterns of forgetfulness and moments when I feel more tired than usual. Forgetting about a meeting or losing the house keys several times a week might be nothing to worry about for most people, but for me, it can be the beginning of a medical emergency.
I’m fortunate to have a doctor who takes my symptoms seriously. But mostly, I’m just grateful every day to be myself again. Sometimes I still marvel at how normal walking feels, at the magic of putting one foot in front of another to carry me through life.
I also kept up my writing habit, and in the process I gained a piece of myself that hadn’t been there before I got sick. Sometimes, I even published pieces about my experience with brain inflammation. The reality is, many victims of brain trauma are not fortunate enough to recover like I did. I write because I hope that somewhere, someone who’s sick like I was will find the hope they need when they read my words.
Oddly enough, I never felt more human than I did than during the months I spent bedridden and near death. As I rediscovered how to be myself again, I learned for the first time how much my friends and family loved me. I realised how important it is to spend the short time we have on Earth lifting up those around us who are struggling. When I have challenges in my life now, I remind myself that at least I’m myself again and I can handle it. Because the truth is, any challenge in life can be overcome if you take it step by step.
This article first appeared on HuffPost Personal
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