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I was diagnosed with hearing loss 20 years ago. I looked something like this.


I was nearly four-years-old with tiny ears and an even tinier understanding of what was happening to me. Suddenly my usual afternoon activities of watching Snow White on repeat and planning my 8th birthday (the one where I escape to New York City) were disrupted by lots and lots of visits to the doctor. On the plus side, however, my mother was no longer interested in lectures on appropriate times to take all my clothes off and eat chocolate (an apparent joint activity). She only wanted to know if I could hear this sound or that sound.

I was born with a profound sensorineural loss in my right ear. Around age three I developed a congenital cholesteatoma tumor in my left ear. In children this tumor grows rapidly on the bones of the middle ear, causing them to deteriorate quickly. If the tumor is not caught, it will destroy the bones conducting the sound as well as eat away at parts of the brain, causing brain damage.

After the five hour surgery, I was left with one ear bone still intact. As my ear was very small and tender from the surgery, I could not wear anything in my ear. Instead of BTE hearing aids, I wore what is popularly known as a “Bone Phone”,  a headband of sorts that rested on the bones of my skull, sending the sound to my brain through vibrations.

Seeing as I was nearly four, (and my biggest career aspiration was to be Snow White) my mother decided something must be done about this clunky piece of headgear quite unbefitting of my age and (destined station) in life. She curled pieces of present wrapping ribbon around the headband weekly, if not daily. My mother’s labor of love would prove to be an invaluable gift to me as I grew older.

First the bad news: I did not achieve my childhood dream. It, in fact, shattered upon my realization at Disney World that Snow White already existed. (I have ever suspected this may have been intentional on the part of my parents.)

The good news: I grew up regarding my hearing aids, clunky though they may have been in 1994, as items of beauty; fit for a princess. My mother’s pretty ribbons gave me, a four year old, the ability to relate to my hearing loss on my own terms, endowing me with a sense of agency. (Putting me years ahead of Snow White, as I would discover in Feminist Theory, but that’s another story for another blog.)

Deborah Kent, a writer with congenital blindness, has spoken of her blindness in a way that resonates with me, saying “I didn’t long for sight any more than I yearned for a pair of wings”. In the case of my young self and my fantastical imagination, I very much yearned for a pair of wings, but to wish for a life without hearing aids would have seemed an absurdly wasted wish in a game of Pretend. I welcomed their presence into my life as easily as I did a new playmate.

Challenges would lie ahead, but throughout them all the lines between disability and identity never blurred together for me. Perhaps this was because, with my ribbons, I was hearing in technicolor.

by Eli Pauley