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.
Sunday, April 6, 2014
Saturday, March 29, 2014
Today I Heard The Robin Sing
"IF you can keep your head when all about you
Are losing theirs and blaming it on you,
If you can trust yourself when all men doubt you,
But make allowance for their doubting too;
If you can wait and not be tired by waiting,
Or being lied about, don't deal in lies,
Or being hated, don't give way to hating,
And yet don't look too good, nor talk too wise:
If you can dream - and not make dreams your master;
If you can think - and not make thoughts your aim;
If you can meet with Triumph and Disaster
And treat those two impostors just the same...
...And so hold on when there is nothing in you
Except the Will which says to them: 'Hold on!'
...Yours is the Earth and everything that's in it..."
These words are a passage from Rudyard Kipling's poem "If". It was part of my daily rehab listening exercise from Cochlear today. I plugged my personal audio cable into my processor this morning and connected the cord to my phone as I do nearly every day. I dialed the number and listened intently to the "animal list #17", then pressed the continue button for today's passage. I expected the routine reading of common fairy tales, as I have listened to in the past. But today -- today there was a poem. A poem I've read many times before. A poem beautiful in thought and intent. A poem of advice from a wise father to his son. A poem of virtue and character. A poem of perseverance. Profound. Poignant. Purposeful. A poem of hope.
I understood every word. It made me cry.
And so hold on when there is nothing in you except the will which says...
"Hold on!"
It is a perfect expression of where I am. I'm holding on. Holding on to the promise that this cochlear implant journey will be everything I have hoped it would be.
Today, I heard the robin sing.
And in its song, I heard hope.
Are losing theirs and blaming it on you,
If you can trust yourself when all men doubt you,
But make allowance for their doubting too;
If you can wait and not be tired by waiting,
Or being lied about, don't deal in lies,
Or being hated, don't give way to hating,
And yet don't look too good, nor talk too wise:
If you can dream - and not make dreams your master;
If you can think - and not make thoughts your aim;
If you can meet with Triumph and Disaster
And treat those two impostors just the same...
...And so hold on when there is nothing in you
Except the Will which says to them: 'Hold on!'
...Yours is the Earth and everything that's in it..."
These words are a passage from Rudyard Kipling's poem "If". It was part of my daily rehab listening exercise from Cochlear today. I plugged my personal audio cable into my processor this morning and connected the cord to my phone as I do nearly every day. I dialed the number and listened intently to the "animal list #17", then pressed the continue button for today's passage. I expected the routine reading of common fairy tales, as I have listened to in the past. But today -- today there was a poem. A poem I've read many times before. A poem beautiful in thought and intent. A poem of advice from a wise father to his son. A poem of virtue and character. A poem of perseverance. Profound. Poignant. Purposeful. A poem of hope.
I understood every word. It made me cry.
And so hold on when there is nothing in you except the will which says...
"Hold on!"
It is a perfect expression of where I am. I'm holding on. Holding on to the promise that this cochlear implant journey will be everything I have hoped it would be.
Today, I heard the robin sing.
Tuesday, March 25, 2014
A Strange Land
When I get together with friends and family, they are always curious about my progress with my cochlear implant.
How are things going? Are voices sill robotic? Is it getting any better? Can you hear me now? (haha) Are you happy with your cochlear implant?
My best answer is, "It's OK."
It's everything I expected, and a little more. I was warned to keep my expectations low, and to hope for the best. It's more than I expected. It's less than I hoped. It's not great. But it's better than the hearing aid. It's OK.
It is a strange land I wander..
Voices remain mechanical. Though I can perceive differences in volume and pitch, the range is limited, and the once simple act of listening consumes an enormous amount of my attention and energy. Many cochlear implant recipients say there comes a time when the cortical reorganization of their brain "normalizes" voices. I wonder if the brain simply reorganizes what it perceives as normal and makes the cochlear implant sound like their "new normal". For me, it doesn't seem like it's becoming normal as I remember it. I am slowly getting used to the new and different sound. But it is not normal at all.
Music evades me. This is my greatest angst. The cochlear implant was developed for speech, I am told. And though some recipients testify that they love listening to music through their cochlear implant, I am not sure I will achieve that delight and satisfaction. Having been a classically trained vocalist, I find music through the cochlear implant to be flat, mechanical, and sapless. The range of pitch and timbre provided by the cochlear implant doesn't do justice to the full, robust quality of vocal and instrumental music. The cochlear implant is a limited substitute for the human ear. My audiologist says many of her late-deafened patients express similar dissatisfaction with music after their implantation.
I find the accompanying technology a necessary encumbrance. I carry a kit of accessories and spare parts in my purse -- extra batteries, lapel mics, audio cables, remote controls, ear hooks, back-up processor... just in case. It makes my handbag pretty heavy. I have to adjust the remote multiple times for different listening environments in my classroom, my school, my home, meeting rooms, and social venues. Many times I forget to turn the volume and program back to my everyday listening after I've adjusted it up or down during the day. I plug in an FM boot into the processor in the morning and turn it on for small group instruction, off for whole group instruction. I recharge the FM unit every night. I have a special dryer I store my processor in at night to remove moisture from daily wear. And I recharge my remote at least once a week. So much stuff. And so much to maintain.
I can certainly hear better with my cochlear implant than without it. Actually, I can hear a great deal more than before. It didn't restore directionality, though, and many sounds are still incomprehensible. I don't know what they are, and I can't tell where they are coming from. I hear myself saying, "What's that noise?" again and again throughout the day. Odd clicks, buzzes, beeps, squeaks, rattles, and scritches gurgle through my processor -- blurring my senses. I get confused and disoriented sometimes.
This cochlear implant is a miracle. But it's not a cure. I don't regret my decision to get the implant in the least. It is better. And sometimes, better is the best you can hope for.
It used to be so simple.
What a strange land I wander.
How are things going? Are voices sill robotic? Is it getting any better? Can you hear me now? (haha) Are you happy with your cochlear implant?
My best answer is, "It's OK."
It's everything I expected, and a little more. I was warned to keep my expectations low, and to hope for the best. It's more than I expected. It's less than I hoped. It's not great. But it's better than the hearing aid. It's OK.
It is a strange land I wander..
Voices remain mechanical. Though I can perceive differences in volume and pitch, the range is limited, and the once simple act of listening consumes an enormous amount of my attention and energy. Many cochlear implant recipients say there comes a time when the cortical reorganization of their brain "normalizes" voices. I wonder if the brain simply reorganizes what it perceives as normal and makes the cochlear implant sound like their "new normal". For me, it doesn't seem like it's becoming normal as I remember it. I am slowly getting used to the new and different sound. But it is not normal at all.
Music evades me. This is my greatest angst. The cochlear implant was developed for speech, I am told. And though some recipients testify that they love listening to music through their cochlear implant, I am not sure I will achieve that delight and satisfaction. Having been a classically trained vocalist, I find music through the cochlear implant to be flat, mechanical, and sapless. The range of pitch and timbre provided by the cochlear implant doesn't do justice to the full, robust quality of vocal and instrumental music. The cochlear implant is a limited substitute for the human ear. My audiologist says many of her late-deafened patients express similar dissatisfaction with music after their implantation.
I find the accompanying technology a necessary encumbrance. I carry a kit of accessories and spare parts in my purse -- extra batteries, lapel mics, audio cables, remote controls, ear hooks, back-up processor... just in case. It makes my handbag pretty heavy. I have to adjust the remote multiple times for different listening environments in my classroom, my school, my home, meeting rooms, and social venues. Many times I forget to turn the volume and program back to my everyday listening after I've adjusted it up or down during the day. I plug in an FM boot into the processor in the morning and turn it on for small group instruction, off for whole group instruction. I recharge the FM unit every night. I have a special dryer I store my processor in at night to remove moisture from daily wear. And I recharge my remote at least once a week. So much stuff. And so much to maintain.
I can certainly hear better with my cochlear implant than without it. Actually, I can hear a great deal more than before. It didn't restore directionality, though, and many sounds are still incomprehensible. I don't know what they are, and I can't tell where they are coming from. I hear myself saying, "What's that noise?" again and again throughout the day. Odd clicks, buzzes, beeps, squeaks, rattles, and scritches gurgle through my processor -- blurring my senses. I get confused and disoriented sometimes.
This cochlear implant is a miracle. But it's not a cure. I don't regret my decision to get the implant in the least. It is better. And sometimes, better is the best you can hope for.
It used to be so simple.
What a strange land I wander.
Saturday, March 22, 2014
The Noise
"What's that noise?" my husband asks casually as we are driving to the airport.
"What noise? I don't hear anything," I answer.
"That noise coming from the back wheel. What is it?" he asks.
"I don't know. I'm deaf, remember?" I reply.
"It's loud. You can't hear that?" he continues. "How long has it been doing it?"
"I just said I can't hear anything," I tell him again.
"Are you wearing your cochlear implant?" he asks innocently.
"Yes, but I still don't hear anything different," I say.
"I hear it," my daughter chimes in from the back seat. "It's really loud. You can't hear that?"
"Was it making this noise yesterday?" my husband asks.
What ensues is a long sequence of pointing out when the car makes the noise and inquiries of "Did you hear THAT?"
(I leave the conversation...)
Being deaf continues to bring new and unusual challenges into my otherwise ordinary days -- like my inability to hear strange noises my car makes. The cochlear implant brings a great deal of noise to my ear. Deciphering that noise into something intelligible continues to be my biggest obstacle to successful hearing with it. It's hard for people to understand that. It's still hard for me to understand.
The saga continued two days later at the repair shop --
"My car is making a noise of some kind near the back wheel," I tell the service clerk.
"What kind of noise?" he inquires. "What does it sound like?"
"I dunno. I'm deaf. Why don't they make an indicator light for that?" I joke.
But it isn't a joke at all. Not really. It only hides my embarrassment and makes me feel rather pathetic.
It turns out that the noise was emanating from a loose spat near the tire that flapped in the wind as the car was moving. An easy enough fix. The lesson, though, is somewhat larger. Now I know that I cannot hear unusual noises my car may make. This could be a problem if the noise is more than just a loose spat. Perhaps my husband should drive my car more often.
Saturday, March 15, 2014
Imbalanced Hearing
“We have two ears for a reason,” said Jill B. Firszt, PhD, associate professor, audiologist and director of the Cochlear Implant Program in the Department of Otolaryngology at the [Washington University] School of Medicine. “A common assumption was that hearing loss in just one ear was minimally disabling. However, our studies and those of others show that listening with just one ear seriously degrades signal segregation and communication, resulting in diminished quality of life."
This is good to know. It explains why the loss of hearing in my left ear and the partial loss in my right was so difficult for me -- physically and psychologically.
I beat myself up over and over for feeling so defeated. I cried tears of remorse. Feelings of guilt and inadequacy welled up inside of me. Weak. Vulnerable. Wounded.
It whooped my ass.
Being bimodal today -- a cochlear implant in one ear and hearing aid in the other -- has restored some balance to my life. It's not perfect, and it will never be as good as I remember it, but I am finding that a new sense of normalcy is emerging. There will always be struggles. But there will be victories, too.
As I cleaned and stored my cochlear implant processor in its dryer last night, I ruminated the events of the past year. It's still surreal -- unbelievable in the sense that I never dreamed in my wildest imaginations that I would stand in this place today; but incredible, too. Incredible that this wealth of hearing technology was developed and made available for me at this time and in this place. It has only been within the last year that cochlear implants have been approved in the United States for people like me -- those who have one ear that is still viable with a hearing aid.
I'm leading a charmed life, I know. And for that, I am very grateful.
I beat myself up over and over for feeling so defeated. I cried tears of remorse. Feelings of guilt and inadequacy welled up inside of me. Weak. Vulnerable. Wounded.
It whooped my ass.
Being bimodal today -- a cochlear implant in one ear and hearing aid in the other -- has restored some balance to my life. It's not perfect, and it will never be as good as I remember it, but I am finding that a new sense of normalcy is emerging. There will always be struggles. But there will be victories, too.
As I cleaned and stored my cochlear implant processor in its dryer last night, I ruminated the events of the past year. It's still surreal -- unbelievable in the sense that I never dreamed in my wildest imaginations that I would stand in this place today; but incredible, too. Incredible that this wealth of hearing technology was developed and made available for me at this time and in this place. It has only been within the last year that cochlear implants have been approved in the United States for people like me -- those who have one ear that is still viable with a hearing aid.
I'm leading a charmed life, I know. And for that, I am very grateful.
(Read the full article about imbalanced hearing by clicking the link.)
Saturday, March 8, 2014
Secrets
FM: aka Frequency Modulator; a system for sending radio signals in which the number of radio waves per second is changed in order to send information in the form of sound.
To help me hear my students in my classroom and speakers at faculty meetings and workshops, my school district loaned me an FM system to use with my cochlear implant. I simply plug a receiver into my processor, turn on the transmitting unit, and clip the lapel microphone on the speaker. Voila! The voice is instantaneously transmitted to my processor.
It's an amazing piece of technology. Rather than broadcasting the sound to the entire room, I am the sole beneficiary of the system. Even more amazing is when I use my handy-dandy remote assistant device to adjust the mix of FM mic to processor mic. I can hear 100% of the lapel mic, or adjust it to hear a mix of lapel mic and processor mic. When listening to children read, turning the FM to 100% eliminates the noise clutter of my classroom so that I can focus on the student I am working with. In meetings, I can adjust it so I can hear the voices of both the speaker and the people at my table.
But as amazing as it is, it's not without distractions. At a workshop yesterday, I could hear the speaker as she monitored the small group interactions at other tables as if she were speaking directly to me. I could hear her comments and questions, and once turned to my table mate to ask her a question about something the speaker had said at another table. Her ensuing look of puzzlement told me she had not heard the comment. I giggled to myself.
I could even hear the speaker's side-bar whispers meant only for another's ears.
It's a good thing I can keep a secret!
 |
| Transmitting Unit and Lapel Mic |
It's an amazing piece of technology. Rather than broadcasting the sound to the entire room, I am the sole beneficiary of the system. Even more amazing is when I use my handy-dandy remote assistant device to adjust the mix of FM mic to processor mic. I can hear 100% of the lapel mic, or adjust it to hear a mix of lapel mic and processor mic. When listening to children read, turning the FM to 100% eliminates the noise clutter of my classroom so that I can focus on the student I am working with. In meetings, I can adjust it so I can hear the voices of both the speaker and the people at my table.
 |
| This is the receiver that plugs into my processor. |
But as amazing as it is, it's not without distractions. At a workshop yesterday, I could hear the speaker as she monitored the small group interactions at other tables as if she were speaking directly to me. I could hear her comments and questions, and once turned to my table mate to ask her a question about something the speaker had said at another table. Her ensuing look of puzzlement told me she had not heard the comment. I giggled to myself.
I could even hear the speaker's side-bar whispers meant only for another's ears.
It's a good thing I can keep a secret!
Monday, March 3, 2014
Prolific
That's the word my surgeon used to describe my hair.
"Your hair is very prolific," he said as he was extracting an infected ingrown hair from my surgical scar. This is the 2nd time he's had to do it. A small abscess had formed around the imbedded hair and a leftover suture that has refused to be absorbed.
I'm not going to complain, though. I know women my age who are suffering with hair loss. I got my thick hair from my dad. I'm a hairy beast, thanks to him. Most of my life, I've battled it into clips and bands that were designed for lightweights, not for my heavy mane. It's been a blessing and a curse in my cochlear implant post-op recovery, both easily covering the surgeon's shave and infecting my healing scar.
It's prolific.
He lanced the sore and told me that's probably why my scalp has been so tender lately. "You'll probably feel much better now," he said.
I hope he's right.
"Your hair is very prolific," he said as he was extracting an infected ingrown hair from my surgical scar. This is the 2nd time he's had to do it. A small abscess had formed around the imbedded hair and a leftover suture that has refused to be absorbed.
I'm not going to complain, though. I know women my age who are suffering with hair loss. I got my thick hair from my dad. I'm a hairy beast, thanks to him. Most of my life, I've battled it into clips and bands that were designed for lightweights, not for my heavy mane. It's been a blessing and a curse in my cochlear implant post-op recovery, both easily covering the surgeon's shave and infecting my healing scar.
It's prolific.
He lanced the sore and told me that's probably why my scalp has been so tender lately. "You'll probably feel much better now," he said.
I hope he's right.
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