- I grew up loving books and language.
- Then I developed aphasia when I got sick with brain inflammation.
When I stood up after teaching one day and suddenly couldn't remember how to walk, I knew something was horribly wrong with my brain. But I had no way of knowing how seriously ill I was about to become.
Over the next several weeks, my sense of time, my memory, my ability to distinguish between what I liked and disliked, and even the sensation in my left arm would disappear as suddenly as deleted files on a computer.
But what scared me most was losing my facility with language — a symptom called aphasia.
I had brain inflammation
Johns Hopkins describes aphasia as "a language disorder caused by damage in a specific area of the brain." To me, it felt like a prison sentence.
My aphasia was caused by severe brain inflammation when lupus, an autoimmune disease I'd lived with for four years, attacked my neural tissue. I'd survived a less severe episode of brain inflammation years earlier, so getting a diagnosis wasn't difficult. The brain fog, extreme fatigue, and personality changes were the same symptoms I'd struggled with during my first episode.
"These types of flares are your disease's pattern," my doctor gently explained to me as I slumped in my wheelchair. She told me it would take months for the immunosuppressants to beat my disease into submission.
Aphasia felt like being trapped in an endless guessing game. Simple words I'd used all my life hovered just out of reach. When I needed an envelope, I asked for "a thing that you put another thing in, and then you put it in the mail." When I asked my caretaker for a "head thing," she brought me a hairbrush instead of the pillow I'd wanted.
"Will I be able to talk normally again?" I asked my doctor.
"We don't know yet," she told me. Her words hit me like a punch to the face.
I missed language and books
I spent months bedridden, confused, and devastated by where life had taken me. Before aphasia, I loved reading and writing. When I was in second grade, I'd stay after school to read the stories in the older grades' language-arts textbooks. As an adult, I could always find the right words to comfort a sad friend or encourage a student.
I couldn't imagine life without the ability to share my thoughts or connect with others. I was terrified that I'd never communicate the way I had before — that I'd forever be searching for the right word as the conversation moved on without me.
The immunosuppressants and high-dose steroids my doctor prescribed began to work after four months. The inflammation slowly receded from my brain, relinquishing pieces of myself I'd thought I'd lost. I rediscovered the name of my favorite color — red — and remembered a childhood camping trip. Words I'd forgotten crept back into my mind.
I wrote as part of my recovery
When I could read again, I also started writing. Still unable to sit up on my own, I balanced my laptop on pillows on my stomach so I could type lying down. Determined to reenter the world with my vocabulary intact, I forced myself to write 500 words every day. At first, even constructing a sentence was exhausting. When my mind scrambled to find the correct word, I'd type "WORD," then revisit the document later.
I attended my first writing class when I was well enough to drive. I wore a hat to cover my hair, which was thin and patchy from my disease and the medicine that treated it. As I read the essays my classmates wrote, I realized I was the least experienced writer in the class. I frequently used the wrong word or the wrong tense. My sentences seemed to meander in the opposite direction of where I intended to go.
Still, driving home from class, I thought of the months I'd spent too weak to even lift my feet high enough off the ground to walk. And yet there I was, my foot controlling the gas pedal, my hands and mind steering my car in any direction I chose. I promised myself my ability to communicate would strengthen, too.
Eight years and a handful of writing classes later, I write and publish essays about surviving brain trauma. For obvious reasons, I rarely see articles written by aphasia survivors. I write not just for myself but for those who don't have the words.