The music pulses through the room like a heartbeat. Or is that the sound of my heart beating? My heart replies before my head can.
In the summer of 2009, in the days and weeks after surviving an allergic reaction, my heart began beating so fast it couldn’t slow down without IV fluids and medication. It would happen at rest, when I was walking up stairs, when it was too hot out, when it was too cold out. On a mid- October day, I sat in class listening to my music history professor speak. He had the hair of Beethoven and the kinetic movements of a contemporary conductor. His upper limbs danced through the air when he spoke about timber, time signatures and tempo marks.
After walking to the corner of the basement classroom, the professor turned his back and pressed “play” on the CD player. Mozart. Now, Mozart louder. Now, louder still. My ears recognized “The Marriage of Figaro,” but my eyes were fixed on the clock above the blackboard. Time had started moving faster for my body. While surreptitiously taking my pulse, I made bargains with God and wondered if I could get my heart rate to slow through sheer will power. The petite, Latina classmate to my left whispered about her weekend plans to her friend with the pink-streaked hair who sat beside her. I wondered if I was going to have to call an ambulance right then and there. Slow down, please. Breathe. Coughing helps to disrupt the heart’s rhythm. The person in front of me must have wondered if I was coming down with something. It worked—my heart eased into its normal beat. The music played on.
For 26 weeks, there was no diagnosis.
“You’re just anxious,” people wearing white said. “Here’s a prescription for Valium,” they said, handing over small pieces of paper.
“No, I’m not anxious, but knowing something is wrong and not being taken seriously is starting to make me anxious,” I replied again and again.
At last a month before Valentine’s Day, a bespectacled, bearded integrative doctor said, “I really hope you don’t have what I think you have. Dysautonomia is really hard to get better from.” He shook his head and avoided my gaze until the words that had fallen from his mouth had settled on the surface of the dark beige carpet like broken shards of glass. Why did I feel relief? Something awful that had a name seemed less frightening than something nameless.
Later, I would discover that the power I thought the name would possess didn’t erase the unknown or heal the dysregulation of my autonomic nervous system, but coping was easier. I saw the number on the invisible waiting room door, but still didn’t know what was behind it. No longer was I certain if I was locked on the inside or outside. But, medicine is not always found in knowing. Like music, it exists in the spaces in between the notes.
Lauren Jonik is a writer and photographer in Brooklyn, NY. She currently is at work on a memoir about coming of age with a chronic illness. Follow her on Twitter: @laurenjonik