What I remember most about being sick with brain inflammation is the stillness that stretched on for months. Life in my home ground to a halt. No students trooped into my house carrying violins for their lessons; my fingers could no longer fly across the instrument that had once felt like an extension of my body. Few intelligible words escaped the cottony fog in my brain. A shaggy rescue dog with no one to train him snoozed on the carpet. With me bedridden, the dog had taken to lifting his leg on the couch.
“I’m bored,” I told my doctor at an appointment in October. She held the results of my blood test where I could see it. Still riddled with bold highs and lows. Does being wheeled to my doctor’s office count as setting foot outside? I wondered. The July heat had been hot enough to fry an egg on the sidewalk the last time my shoes had touched it.
My doctor stared at me blankly. I leaned back in my wheelchair, but I could still see the crow’s feet forming at the corners of her eyes. After three years as Dr. Wilkinson’s patient, I knew her children’s names. I knew about her nephew in Florida. Four months ago, I laid on her exam table, reaching for exploding lights no one could see but me. She had leaned over me, asking me to move my feet or squeeze her finger. I was too sick to understand that I had failed every test, but not too sick to see the shiny redness in her eyes.
In July, I had stood up after teaching a violin lesson and my feet refused to move. Lupus, the disease I had lived with the past five years, had careened out of control. The inflammation trapped the woman I once was behind a locked door in my mind. I lost my ability to comprehend time. I forgot my parents’ names and social security numbers. Hallucinations slithered through the air and danced across the ceiling. I forgot my love of autumn leaves, my dislike of country music. Worst of all, my disease robbed me of my vocabulary, fracturing my connection to the world around me.
I was twenty-seven years old.
Dr. Wilkinson slipped the recent blood test into my growing file.
“If you’re bored, why don’t you write a book or something?” She swiveled in her chair to reach for her prescription pad.
A book or something. The words pinged around the inside of my skull like a loose marble. As if writing a book were easy. As if it’s something anyone could do, let alone the person who forgot the word for ‘envelope’ just last week. Earlier in the month, I had forgotten how to say ‘pillow’ and asked my mother for a ‘head-thing.’ She’d smiled and handed me a hairbrush.
When I was healthy, words were the bricks of the home my mind lived in. My brain thought not in pictures, colors, or emotions, but in strings of nouns and verbs. When lupus decimated the verbal part of my brain, I stopped thinking. Without language, I no longer knew how to be me.
By October, I had survived three months of waking up with my left arm flopping beside me like a fish, devoid of sensation. Three months of returning books to the nightstand when I realized I couldn’t read them. Three months of the fog of confusion shielding me from knowing I might not live to be thirty.
But by October, the fog was beginning to clear. I still couldn’t walk. I still sobbed when the return of my long-term memory unleashed demons I had forgotten. But I was beginning to understand that the light at the end of the tunnel looked like freedom. I would soon learn that the light was actually the freight train of reality barreling towards me.
With immunosuppressants and steroids pumping through my veins, my reentry into the outside world morphed from the theoretical to the inevitable.
Muscles can be rebuilt. I had faith in my ability to relearn to walk. My memories were settling back into the familiar grooves of my mind. I could relearn my dislike of yogurt, my love of pumpkin.
But could I survive outside my bedroom without my words?
In desperation, I began to use pillows to prop my laptop up on my stomach so I could type lying down.
I challenged myself to write five hundred words a day. I kept the thesaurus tab open constantly, scrolling through synonyms until the right word sent a ping of satisfaction through my brain. I wrote about lupus – about the isolation of being bedridden while my peers built their careers and hung out with friends. I wrote about the grief of losing the person I once was. I wrote about the day my wobbly legs carried me all the way to the living room and the joy of sitting upright on my own couch.
Alone in my room, sipping water from a plastic straw with my computer balanced on my stomach, I found my power. My fingers tapped the keys slowly, then gaining momentum as my vocabulary crept back.
As my legs grew stronger, they carried me to writing classes. Craft books accumulated on my nightstand. I learned to show, not tell. I resigned myself to killing my darlings.
Writing a memoir is like recovering from brain inflammation. Emotions and memories you had long since buried swirl beneath your scalp. Some days, words are as hard to catch as shadows in the sunset. But if you are determined enough to stare into the flame and not look away, you can survive the fire.
Four years after the day I suddenly couldn’t move my legs, I walk along the familiar hallway to my doctor’s office. I tuck my writing notebook under my arm and sign in at the front desk.
When I tell Dr. Wilkinson about my first published piece, she beams.
“I knew there was a writer in there somewhere,” she said. I wonder if she remembers that long ago October appointment when she suggested I write a book. On the other side of the fire, “a book or something” seems no less possible than relearning my language.
“Thanks to you, there is,” I reply.