Sunday, April 6, 2014

Those Who Read My Blog Will Know ----

There seems to be a great influx of "miracle" videos depicting cochlear implant recipients who have amazingly successful and overemotional activations as they hear "for the first time." They've gone viral across the internet and have even been widely broadcast by the mainstream media. Friends regularly post them to my Facebook timeline.

"Have you seen this?"
"I thought you would enjoy seeing this."
"OMG. This made me cry!"
"This made me think of you."

Truth be told -- I don't really believe these reactions. Having experienced a cochlear implant activation recently myself, I know the reality of what it is like. Emotional, yes. Exciting, yes. But the weeping of joyful tears and the extreme emotional reactions of the recipients in these viral videos seems a little over the top to me. And I believe they project false perceptions to the hearing world of what really happens when a cochlear implant is turned on. Though it is a miracle in a sense, it does not miraculously restore hearing as a hearing person understands.

Having only lost my hearing a short time ago, I had been told by my medical hearing team that I would be an ideal candidate for cochlear implant hearing success. And I am. But it is not a miraculous restoration of my hearing. I realize that I am an anomaly in the CI world, newly implanted as a hard-of-hearing person, rather than as a person who was profoundly deaf. The FDA had only recently approved the use of cochlear implants in those with unilateral, or one-sided deafness, like myself. In the past, recipients had to be profoundly deaf in both ears. Maybe this skews my perception. But what I experienced was neither stellar nor phenomenal, and certainly not worthy of weeping and wailing.

Following a "test" of beeps and tones similar to a hearing test, my audiologist adjusted the volume and frequency until I could begin to hear the faintest of sound. She slowly and methodically increased those settings until I could hear the tones, and then finally I could hear her voice. The process took several minutes to accomplish. It wasn't a magical "switch-on" where I suddenly and immediately heard sound and speech, as these viral activation videos imply.

One such video shows a woman who miraculously hears her childrens' voices for the "first time". Unfortunately this doesn't ring true because she was given an implant called the "Esteem." It was not a cochlear implant. The Esteem is an implantable hearing aid, not yet approved by the FDA because it has been deemed "cosmetic". The entire unit is "invisible" rather than worn behind or in the ear. It simply amplifies natural hearing. I wouldn't qualify for the Esteem because my hearing loss is profound, and the Esteem is only available for those with moderate to severe loss -- yet even with profound hearing loss, I am still able to hear anyone's voice -- so how did this woman NOT hear her children's voices???  I just don't believe this woman's story at all. But she duped millions of viewers as her video went viral and she had appearances on the Today Show and on Ellen, who gave her thousands of dollars to have another Esteem implant in her other ear! Great marketing by Esteem, I think, and by that woman, who got both of her hearing aids paid for by Ellen. Wish I'd been that smart!

What these videos fail to explain to the unknowing public, is that each recipient is different, and every activation is different, and that every response to activation is different -- according to the recipient's unique experience and medical history. What they fail to acknowledge is that hearing with a cochlear implant requires the brain to reorganize how it hears; and that cortical reorganization takes months, or even years. It is not instantaneous. These videos don't show the work that must go into making the cochlear implant successful.

But people love a good story. And these emotionally charged videos pull on the heart strings of those who don't know or understand what it's like to be deaf or hard-of-hearing, or what it's like to have a cochlear implant. They don't know they are being misled. They don't know that they don't know. They just love the story. And they continue to spread them far and wide.

So call me a skeptic. Or call me pragmatic. I'll continue to be sent these videos by those who don't know, and I'll continue to quietly delete them from my inbox and timeline. But those of you who've read this blog will understand -- If it looks too good to be true -- well, you know.


  1. Wow, you really hit the nail on the head and said everything I was already thinking. All of it, but especially the part about the gal with the Esteem hearing aid (NOT a cochlear implant!). Nice job!

  2. I wrote a blog last year about my take on the activation videos and how misleading I found them to be. I too get these videos but I am quickly to tell people those reactions are not the same for everyone who receives a cochlear implant. Plus, I also state that we do not know their background story or medical history that lead up to their "turn on" moment. It's great that people are able to get that second chance at hearing but in all I do not like how the hearing world, that knows so little about hearing loss, consider it a "cure all" or "miracle" to be "hearing" again. You are right in saying we are still considered hard of hearing even with the CI, some people who don't get it in my opinion do not want to accept hearing loss. Bravo on this blog! I have a Cochlear in my right ear and a hearing aid in my left. N5 user.

  3. Thank you for sharing this blog Bonnie. I had my new CI turned on just two months ago and am experiencing everything that you described. While I hear sound it is extremely difficult to recognize voice and the spoken word. Having no network to share my concerns with I have been feeling ever more isolated. I think that we must share the same well intended friends and family wanting to share their internet videos of the person crying when activated. Please tell me this gets better. Tom D...