It was less than three weeks ago when my cochlear implant processor was revealed for the first time. I posed for a press photograph, hesitantly and very vulnerably, to the wide readership of the The Glens Falls Chronicle.
In the moment Cathy Dede, the editor, took my picture, I attempted to ignore my insecurities by making a joke: "I guess I should have put puff paint on it this morning so you could see it better against my hair."
She made a comment, seeming to understand my processor was brown to blend in with my hair.
I immediately nodded, agreeing CI recipients choose models closest to their hair colors in attempts to camouflage their circumstances. I then realized I was acting as a spokesperson for the CI world, and a dishonest one too. In talking about people, I was referring to me.
Through the tremendous gift of the internet, I've come in contact with many cochlear implant recipients throughout the globe. Social media gives access to photographs, and at times, I've stared at others' images filled with a combination of awe and jealousy.
Some people actually wear their processors like prized medals of honor. Some people actually FLAUNT them.
Before my surgery, I remember clicking through the facebook photos of a CI recipient. She was a bridesmaid and my jaw dropped when I saw she had worn her hair in a... wait for it... UP-DO. Unbelievable! She had unabashedly CHOSEN to let her processor BE SEEN.
I thought, how could she NOT care?
Days before my surgery, I was still coming to terms with the fact (in my mind) I would NEVER be able to wear a ponytail again. To me, this was a price I'd have to pay to be able to hear, an inconvenience surely, but a necessary step for me to move on in life.
I KNOW. And I'd be lying if I said I didn't feel a bit ridiculous, and also ashamed, in admitting this.
I can't help but think of other proud CI wearers reading this, shaking their heads at me in disgust. I picture them cursing me out at their computers and smart phones, telling me to get my head out of my vain ass and get my damn priorities straight.
What's worse is I agree with them. And though I've come a long, long way, I still worry my processor conveys a negative message: that something is wrong with me, that I'm not pretty, that I'm not normal.
Even when I was first activated- in my AUDIOLOGIST'S office, no less- I hesitated trying to attach my processor to my head unless I knew it was concealed. I had never worn a hearing aid, making it all the more difficult as I struggled to attach the magnet and earpiece. Just as I started complaining I would never get the hang of it, my audiologist firmly advised me to stop worrying so much about trying to place it perfectly beneath my hair.
I felt stupid. I felt exposed. What was wrong with me? In front of my AUDIOLOGIST, who more than ANYONE knew the truth of my circumstances, I still made attempts to hide.
I'm writing this because as much as I've told people throughout the years that my vanity didn't impact my decision to seek hearing help, that's not the complete truth. Even the hearing aid companies tell us through marketing that smaller and hidden is better. Each time I explored options, I was told the sleeker, in-the-ear models wouldn't serve me, leaving me disappointed and hesitant to move forward with treatment. That's not the ONLY reason I didn't end up with hearing aids (they didn't help my level of loss), but still, appearance was a factor. I imagine someone out there can identify. If you're that person, let's talk about how much this barrier has affected our lives.
For years, in my warped view (and maybe in yours too) NO ONE would ever want their hearing aids or CI (or any other assistive device for that matter) on display unless forced to do so.
But I'm wrong. And I'm glad.
According to my audiologist, one of her patients, a short-haired, middle-aged male, has a right processor in one color, and a left processor in a totally different shade, together representing the color combo of his favorite sports team.
|Some personalization options for cochlear implants. Original Source: Cochlear Americas|
One of my facebook friends, a professor and fellow blogger, decorates her CI processor per season, adorning her head with flowers or butterflies or whatever else grants her self expression.
|Check out the blog "Hearing Elmo," about living with hearing loss and other invisible disabilities at http://hearingelmo.wordpress.com/|
Even a quick internet search led me to a site in which people share ideas to "bring a little bling" to hearing aids, as shown here in this photo of a child with a cochlear implant (My 6 year old, by the way, would LOVE to wear that).
Friends: This Monday misunderstanding is all mine, that if we are "impaired" in some way, whatever it is, surely we want to hide it.
As photos of hearing aid bling prove, this isn't always the case nor should it be.
Though I doubt you'll see me bedazzling my processor in the near future (just not my style), the loud-and-proud folks teach me lessons in self-acceptance, give me hope, and also make me smile.
Why? They're just being themselves.
If you didn't care what people thought of you, what would YOU reveal?