Monday, March 29, 2010

If You Could Hear What I hear!

I was sure a lion was loose in my neighborhood. While walking the dog the other morning, I heard a roar that made me jump and nervously look around for an unlikely escaped jungle beast.
There are no Lions in my town, and the zoo is 3 towns away. The “roar” I heard was a car horn.
I am deaf, yet I hear sound. I am in this unusual liminal space. I exist in this space as a result of the amazing technology of a cochlear implant.
A cochlear implant or CI is a surgically implanted electronic device that provides a sense of sound to a person who is profoundly deaf.
I am a “late deafened adult” by definition. I lost my hearing very suddenly, and tragically after 49 years of near perfect hearing. A major infection that saw me go from a healthy half marathon running male, to being on life support two days after a 15K run; then in a coma for 10 days.
The end result was “waking up” deaf.
It was in my recovery, and the 9 months of deafness that I researched and discovered the world of cochlear implants.
There are approximately 200,000 people worldwide that have received cochlear implants. The majority is in developed countries due to the high cost of the device, surgery and post-implantation therapy, or “mappings” as the audiologists refer to this as.
So after 9 months in my “cone of silence” or utter and profound deafness, I was “activated”, or turned on, as the magnet that sticks to the implanted device inside my skull, was “stuck” in place. It was then that I heard sound for the first time in 9 months.
Sound glorious sound!
Wonderful yes, but sound is just sound. You see this “device” or mini computer inside my head, takes the sound that is picked up through my external mic, and changes the analog sound it receives, to digital. So when some one says “Good morning David”, my mini on-board computer, changes that analog sound into a string of zeros and ones or digital code It then sends that code down an implanted wire to where there now resides 16 microscopic sized, surgically implanted electrodes. These electrodes then fire this digital code at my auditory nerve.

This of course happens so quickly that I probably receive the information at the same time it takes a “hearing” person to have the sound fired from the cochlea hairs to the auditory nerve. My new hearing method of course is all “man made”.
Not an “aid” but a hearing replacement if you will.

The surgery is complicated to be sure. They drill a hole in your skull, cut a huge incision down to the cochlea area; then through an incision behind the ear, the surgeon drills a hole into the mastoid bone. Once all the electronics are implanted, they staple you back up.
A month latter is the big “activation” day, when the anticipation is over the moon after not hearing a pin drop or an engine roar in my deafness. Once implanted, and then activated is when the real challenges begin.
The challenge is in learning what I like to call “digital sounds”, the new language that is fired at my auditory nerves once I put my magnet on.

Birds sound like an electrical buzz; phones don’t “ring” they “brang”. Car horns sound like lions to me; my dog “bracks” instead of barks; words all sound different to me than my past hearing life.
When I was “activated” 18 months ago, I had to figure out how words “sound” in my new world. I bought talking books so I could read what the word is as I heard it in my digital new language.
“Hop on Pop”, and “Is your Momma a Lama” were my first talking books, and I felt like a pre-schooler learning language for the first time.
In fact I was.
I have been learning a new language, and every day is a new adventure, a struggle most days as new voices force the brain to work harder.
I still read lips and look for clues as I struggle for comprehension of sound. New voices are like foreign languages, that need time to ramp up comprehension with.

So many people assume it is a hearing aid that amplifies sound. Not at all, it changes analog sound to digital. I hear the world different than I did when I was part of the “hearing world”
Music is simplified, and lost mostly, as my 16 implanted electrodes replaced the 180,000 odd hairs that used to fire sound from my cochlea to my auditory nerve. So I get a very simple version or facsimile of what it used to sound like.

Music is what I miss the most from my old world.
I can “hear” the sound or noise, and if I know the song from past hearing days, my brain magically backfills a lot of it, but it is not the same.
I still get life’s everyday concerto, and I am grateful for the technology that restored sound into my life, but when my son strums his guitar to a wonderful new set of chords he just learned, I smile and say “fantastic Dan”, but in fact I dearly miss the sounds he used to fill the room with.
So I still search for a box that I fit in. It is if I need a label to give people like me.
I am “deaf” once my magnet is removed at night when I sleep or step into the shower, but I do “hear” when I wake up and strap it back on and hear the sounds being fired at my brain.
I am in that liminal space of “not deaf” because I have sound, but am “deaf” because I do not hear a thing without this processor strapped on.”
So where do I fit now that I am bionic?
Perhaps I am CI-Borg.

Oh, if you could only hear what I hear.




Kay Dennison said...

You fit just fine as a person of strength, courage and determination who I am proud to call my friend.

Dianrez said...

Thanks for a very perceptive and thoughtful explanation of your experience and its comparision with normal hearing. This should give many people pause for consideration.

The difference between natural hearing and electronic hearing is a concept many people don't understand with CI enhancement. It is not giving a deaf child the "gift of hearing" but giving him the "gift of input". It is still up to the child to sort out and make sense of the input.

Please keep us informed of the progress you are making in re-identifying sounds, and most importantly, words and sentences. You have a valuable perspective that is hard to find in this still-new field.

Sherry Peyton said...

Thanks for explaining all this to us. I had no idea there was such a learning curve to getting used to the implants. It just seems so darn unfair! But life is so like that. You have had an extraordinary journey and you explain it so well. I cannot imagine the exasperation that must occur as you struggle to learn to hear again. Blessings friend.

Angela said...

Interesting post. Nothing is easy is it.
I feel as if I can identify a bit with you even though you went deaf and I went blind. Much of what you are going through reminds me of feelings I had when I first started to lose my vision.

Thank you for sharing your story. I know what I have gone through and go through is different, but it is still a huge loss and you make me feel not so alone.

Anonymous said...

This post today has made me aware of all that I can hear right now: the hum of the clothes dryer, the airplane flying overhead, the car driving by on the street, the hum of my computer and the clacking of the keyboard -- all "white noise" in the background of my day.
I think that, like you, I would miss music most of all.

Colin said...

Hi Dave, long time since we caught up and haven’t been following too much or even writing myself,...3 implants and all but failed again so we are talking about, maybe #4 with no guarantee. Its a weird world finding the right ‘box’ to fit but that’s just because we try to conform to someone else’s expectations and disappoints ourselves in the process. I’m learning sign language and speech reading. Helen Keller said “There are wonders darkness and wonders in silence, but I know in whatsoever state I am to therewith be content”...Think I still got a bit to learn. Cheers Colin