On Becoming Deaf, Part I

On a cold winter morning in 1977, with snow that reached to the middle of our windows, I cried in my mother’s lap. The pain inside my ears was excruciating and it wouldn’t go away. I remember my mother cradling me with a pinched expression, trying to reass...ure me everything would be better soon. Of course, my ear infection did get better, but when it left, it took something away: my hearing.

My hearing didn’t leave all at once, but the ear infection started the process. At least, that’s what we believe. Before my illness, I’d never had any problems hearing or understanding, but after – well, that’s a different story.

Hearing loss crept up on me slowly, nearly undetected. It started when I first complained to my mother in early 1978 of a horrible ringing in my ears. She assured me it would go away, but it didn’t. It never left me. The condition is called tinnitus, and it’s not really a ringing, but a cacophony of sounds generated in the brain. Sometimes it’s quiet, some days I have a veritable symphony of constant tones in innumerable pitches and frequencies. Some days the lower pitches are loud. Other days, the high squeals that resemble a trio of badly-tuned flutes invades my head. Sometimes I can’t tell the difference between the humming of my refrigerator and the noises in my head.

It's Never Lupus, Except When It Is

When most people hear the word “lupus”, they quote “Dr. House” at me. “It’s never lupus!” they laugh. While this lame attempt at humor can be funny (doctors really never think it is lupus), most people then realize they know nothing of this disease that’s taken over my life. It’s not their fault. Lupus isn’t a disease that dramatically claims victims’ lives suddenly and painfully, rather it creeps in slowly and quietly, taking with it mostly young women, and minority women at that.

According to the Lupus Foundation of America, lupus affects around 1.5 million Americans, and approximately 5 million people around the world. It strikes mostly women in the childbearing years (18-44), although men, teenagers and children can develop it as well. It is characterized by flares and remissions in which the body continually attacks itself. Every case is different, but most people with lupus suffer from swollen lymph nodes, low-grade fevers, painful arthritis, rashes, anemia, extreme fatigue (akin to exhaustion), hair loss, mouth and nose ulcers, sun-sensitivity, swelling of the joints, pain in the chest upon breathing and a butterfly-shaped rash across the bridge of the nose. In severe cases, the organs can be attacked and compromised, leading to organ failure and eventual death.

My lupus developed as mysteriously as the disease itself, sort of like a bandit that came in during the night that left with my health.