My assignment for Sign class

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Jaime Fradera
Senior Member

since 2000-11-25

Posts 843
Where no tyranny is tolerable

0 posted 2005-10-06 08:04 PM

This paper will describe my experience using the Nucleus-24 Cochlear Implant System.  I will begin  with my childhood experiences as a hearing person, my reaction to the illness as a young adult, and how my life was changed by adopting a healthier philosophy and learning to use this new listening tool.

Part 1.

Since as far back as I can remember, my left ear had sounded rather odd.  It wasn’t anything major.  I just preferred people to stand and held the telephone on my right side because the sound was a little better.  We were given regular hearing tests in school and I always did well on them.  My social life was hardly affected.  I could hear echoes and had excellent sound localization.  I amused myself by shooting caretakers with a water pistol and practiced hitting moving targets by throwing objects at   passing cars with pinpoint accuracy.  I  played tag and jumped rope.  I learned  to hit a pitched baseball in mid-air by listening to the little bell that jingled inside it.  I was a TV Junkie.  At age seven I listened
to John Glenn and the launching of the first Mercury mission and got upset because I had to go to school that day.  I watched the cartoons Saturday mornings, fighting with my sister over which channel to listen to, my favorite being Pop-eye The Sailor Man.  I wanted all the toys on television and made demands(like I wanted toy tanks and machine guns) my parents could not have met on any budget.  And every weekday it was “the CBS evening news, with Walter Cronkite.  At age ten I was memorizing and singing commercials for toothpaste, Melton Bradley, baby magic, beer, cigarettes, cereal, shampoo, coo lade and constipation;  Not to mention the jingles of TV shows like:
The following program is brought to you in living color on NBC ...
Remember?  I heard of the assassination of President Kennedy and the
shooting of Oswald as they were taking him to the Dallas County Jail.

As a student at the school for the blind in Texas, I heard the first performance of the Fab Four on television, and the Beatle mania that swept the nation.  They even replayed WABC's live coverage of the landing at Kennedy Airport.

Like millions of others I heard news coverage of the Vietnam war, The burning of American cities, the televised cacophony of shouting on the streets, the rantings of black rage, the destruction of yet another president, and the first human voices
from the surface of the Moon.  I wanted to take LSD, stop the war and change the world. as I grew older and rock music fragmented, I listened to Black Sabbath and Jimmy Hendricks, Jim Morrison, Frank Zappa, The Brooms, The Band, the Kinks, the Stones, and the Dead.  And as a teenager
at the school for the blind, it was waking Sunday mornings to the Sounds of Casey Casem and the American top 40 countdown.  It was Stevie Wonder and Stevie
Ray, Steely Dan and Steven Stills, the howling, screeching dementia of seventies heavy-metal classic rock.  Radio and television, listening to albums and
collecting records---the world of sound, had once played an indescribably central role and filled a great void inside me.  And as the world of sound began
to fade, as it grew harder and harder to do all the things that meant so much to me, it was very, very frightening.  For although I could hear, I had yet
to come to maturity and grow in philosophy.  The worst thing that could have happened happened anyway. In mounting desperation caretakers took me from doctor to doctor in the vain hope that one might know what was wrong and what could be done about it, but the doctors could only prescribe an endless succession of treatments and ever more powerful
hearing-aids.  None could stop the accelerating damage or even identify the illness.  I cycled in and out of rehab programs where I was purportedly taught how to use the hearing I still had, but not what to do when it was gone.   I went to university but in three years had to drop out.  In 1980 my dad took me to Los Angeles, perhaps hoping for a cure.  The
doctors there recommended another treatment, and my life kept falling apart.  With my life in shambles and my dreams in ruins, I went back to San Antonio and living with Mother.

Part 2.

Now the illness began to rage out of control.  My bouts of total deafness grew longer, sometimes lasting for days, weeks or even months at a time.  I was
constantly dizzy, often nauseous, and sometimes disoriented.  and my ears roared and rang incessantly.  As the episodes of deafness grew more frequent
and severe, I could barely communicate with anyone since nobody else knew Braille.  I was reduced to sleeping, eating, and passing the time by reading
the same Braille magazines over and over.  I tried to listen to radio, but the oldies I so loved now sounded hideous and horrible.  I felt at times almost
as if there was a tightening band or fog pressing in on my ears and temples, as if my head or ears were full and painfully about to burst.  I knew a paralyzing loneliness, a terrible,
soul-destroying desperation, a raw, primeval rage, like a caged animal, and wanted to wrench or claw or tear at this thing that seemed always to be clinging to me, squeezing
on me, and I knew intuitively that while I sat at home eating and sleeping, my hearing was being systematically destroyed.

It took two years to get out of there, but it took even longer to settle, my being run out of one place after another because I couldn't pay the rent.  While wearing a hearing aid that didn't really work, I took a greyhound to Austin and eventually settled in a co-op house.  Nine years later I would be given the opportunity to come to Colorado.  Exposed to new philosophy, I began to undergo a major psycho spiritual transformation,    and my expectations
of what was possible began to rise.  I went back to college even though by then I had lost all function in the left ear and most hearing on the right.
In 1987 my ENT doctor operated on the left ear, inserting a shunt to reduce the fluid pressure in the cochlea, and soon my symptoms diminished. and the
damage was finally stopped.

Meanwhile, in the early eighties, cochlear implants became available to the public.  This was often dramatized by sensational media stories about the miraculous
technology that would change the world of the deaf, along with how some deaf people thought it was terrible and was going to destroy deaf culture.  I can’t
count the number of times somebody would come up to me raving about what they had seen on television or in the paper about this wonderful device, and when
was I going to get one?  The technology was still in its infancy.  There were numerous problems, including rejection and unwanted bone growth which had
to be resolved, and only a few people were candidates for implantation; but the last surgery had been such a bad experience and I really didn’t want to
have another.  These were some of the same characters who pestered me about getting a dog, instead of getting a woman, and I reminded one of them there
are things you just can’t be doing with a dog.

And so the eighties past, and the nineties came and went, and great strides were made in implant technology.  Despite my misgivings about more surgery,
When yet another audiology person bugged me about implants, I decided to take a look.

An implant fitting begins with a formal clinical evaluation to help determine whether a person may benefit from an implant.  A diagnosis of sensory-neural
deafness must first be established.  Tests are performed to determine the degree of hearing loss in both ears and to what degree hearing-aids may help.
When small children are implanted, the evaluation team may include caregivers, a psychologist, speech therapist, or other specialists who work with a
child.  My speech comprehension was tested both with and without using an FM System and the test scores qualified either ear for implantation.  Virginia
(my clinician) and I talked about appropriate expectations and gradually the hype and wishful thinking was separated from the truth.  This was not easy.
For one thing, I was worried that the possibility of “hearing again” (that is, listening to reruns of The Jetsons and throwing rocks at cars) might be
so seductive that I could unconsciously be setting myself up for disappointment.  In addition, the hucksters of sophisticated technology understandably
boast about how their equipment is the latest, fastest, cutting edge and most powerful product on the market today and is the greatest thing since sliced
bread.

We began by talking about which implant system would be best.  The choice was between one made by a company called Clarion and another called Nucleus.
We decided to go with the Clarion because it was the most “blind-friendly” and had tactile information on the buttons and switches.  Next, a decision had
to be made about which ear to implant.  (they only do one ear at a time.)  This was more complicated.  The advantage of doing the right ear lay in the
fact that the auditory nerve pathway was already in use, so the chances of a successful implantation were quite high and my speech perception through the
implant could be improved.  The disadvantage lay in the fact that when an ear is implanted all residual hearing in that ear is lost and one must learn
to hear again through the implant which, as will be shown below, does not actually replace natural hearing.  Because of this I was nervous about how music
would sound to me after trading residual natural hearing for implant hearing.  I made a case for doing the left ear.  The advantage of doing the left ear
lay in the fact that it wasn’t functioning at all and would thus involve less of a trade-off.  My expectation of hearing in the left ear was also quite
low and I would be delighted with any sound perception gained through the implant, however rudimentary.  It would avoid tampering with my existing music
perception, and if the implant worked, might open the possibility of hearing, after a fashion, out of both ears again.  The drawback was that after more
than twenty years of no hearing, there was no guaranty that the nerve pathway would still be available or that the implant would even work until after
surgery and activation.  In other words, doing the left ear involved many unknowns, but I decided to do it anyway.  All smart people agree with me, and
since the implant surgeon finally came around to my side, that meant I was even smarter than he was!

The date for surgery was set.  I was told not to eat or drink anything for twelve hours the night before.  My friend Kacy, whom I call Midnitesun, came
with me to the hospital.  We made elaborate plans that were supposed to cover every imaginable situation that might arise.  We made up print/Braille flash
cards that hospital employees could use to convey short messages.  We demonstrated use of the teletouch, which has a typewriter keyboard.  I took every
opportunity to explain that I was deaf, use a listening tool called a phonic ear, and that in the recovery room people would need to operate it in order
for me to hear.  This is very easy to do and I demonstrated it.  If using the phonic ear was not practical, the flash cards or the teletouch could be used
as the situation dictated.  Of course, when the time came, nobody who needed to know these things knew or had been told anything.

The surgery went according to plan, except that the doctor installed a Nucleus-24 system rather than a Clarion because the area in which he could operate
was restricted.  I was taken to the recovery area, and no one there knew that I was blind and deaf or why they could not get any response.  I was not quite
awake and could not help them.  Who had the teletouch and where were the flash cards?  Nerves were frayed.  I was their last patient after a long day.
The phonic ear was apparently brought, but nobody knew what it was, or anything.  The unit was handled and dropped several times until the batteries fell
out and a nurse tried to put them in backwards.  Then the audio cable fell out, and although they ordinarily don’t call in relatives until a patient is
awake and responding, somebody decided to go get Kacy in the waiting-room.  This may have taken longer than it should have because I kept asking for Midnitesun.

Now we finally have a starting point.  I am taken to an assigned room and the teletouch materializes.  A male nurse comes in, shouts to me and is not heard.
A cold object is thrust in my face.  I take it from him, recognize the thermometer, and know he is there to take vitals.  They give me oxygen, keep telling
me to breathe.  The tubes keep falling out of my nose.  My mind clearing, I reach up to feel how the tubes are attached.  Turns out to be by a tiny piece
of worn-out tape.  Realizing that the tubes are supposed to stay in my nose, I hold them there.   By now it was well into the night,
so they kept me over.  In the morning the dressing was removed and they sent me home with painkillers, antibiotics, instructions, Midnitesun, and a piece
of metal in my head I will probably wear for the rest of my life.

Part 3

The protocol for surgery, implantation and activation of a CI has been standardized.  For the first week after surgery I took pills and stayed home.  I could not lie on my left side.  There was a little discharge of fluid from the wound, and at times I needed to take the pain medication, but for the most part I felt quite comfortable.  When I saw the surgeon a week later, there was a little swelling over my ear, and it was still completely numb of feeling when I touched it.  The next step was activation.  This is hard to describe because it was done by Virginia on the computer.  During this appointment she generated signals through the skin on to the implant.  I did not hear, but rather felt tickling or scra thing in my implanted ear.  Sound was represented by distinct pulses or pricking sensations.  This was the first time I ever heard through that ear in 20 years.  Genny showed me the external portion of the implant.  This was the speech processor, a box with buttons on it and cables to a microphone and magnet.  The two short wires, the magnet and microphone, comprise the head piece.  The microphone is worn like a BTE hearing aid, and the magnet, held in place by attraction to the implant body, is worn just above the ear. When the microphone sends sound to the speech processor, and the processor translates and transmits the signal across the skin to the implanted electrode array, the resulting stimulus reaches the brain where it is perceived as sound.

The next step involved taking the speech processor home and experimenting with it.  I would purposely make a sound, like clapping my hands, closing the door or running the fan, and note the pricking sensation that accompanied each noise.  The fan noise produced a steady, continuous tickle, and knocking produced sharp pulses or pricks.  Taking it outside I would feel a fluctuating tickling, which represented the sounds of passing traffic.  After several weeks of constant practice I began to notice different patterns in the pricks.  Voices produced irregular pricks; music was felt as rhythmic pricks.  The relationship between pulses I felt through the CI and specific noises could be verified because I have limited hearing in the right ear and use the FM system.  Following the standard protocol, I saw Virginia for what is called a mapping.  This involved programming the processor to deliver specific electrical signals to specified sites in the cochlea or inner ear.  By this time I was beginning to think of the stimuli as hearing sounds rather than feeling pricks.  She gave me a word test, and judging from the pattern of pulses or beats I heard, I could count the syllables in each word. The sound quality was worse than that heard on the first recordings made in 1877, but I heard laughter and, perhaps by accident, heard the words socks and Colorado when they were spoken.  Another month of experimentation followed.  I put radio and newscasts through the implant and listened even though they sounded like gibberish.  I listened to NPR and thought I heard it say NPR. This is NPR news.  I listened to the President and thought he said Iraq----or was I just kidding myself?   The first recognizable words I heard were not from a human voice, but  a machine.  The JAWS voice can be adjusted in ways that a human voice can not, so I just played with the voice settings until I found one I could understand through the Nucleus.  I found that, if I knew the context, such as what was on a given web page, it helped me understand or read what was posted there.  For example, going to a weather page there would be something with hurricanes.  And going to the White House, I could listen for and find terms like homeland security, get democrats, Iraq, iraq, iraq and maybe Iraq.  Was this really working?  Or was I just kidding myself?  A month later, at the next mapping session, Genny measured my hearing, adjusted the implant and administered word tests.  At each mapping, I could make out more words, hear more pitches, distinguish more clearly differences in sound.  At home I continued to experiment with voices, newscasts and listening to the JAWS voice.  I also took to listening to the implant without wearing the earphone in my right ear.  On election night, I heard them talking about whether or not they would steal this one like they stole the last one.  Or perhaps the implant needded another adjustment.  I was finding that, if a person spoke slowly, clearly and was willing to repeated, if it was quiet and if I knew the context or situation, I could indeed hear people talking through the implant.  As my speech comprehension increased, though still not perfectly, I could telephone to get time and temperature and recognize more and more words through my JAWS settings.  As the months passed, even music began to sound recognizably musical.  But the real kicker came as I started feeding the JAWS voice directly to the speech processor via the phonic ear and began increasing the rate at which the voice spoke, learning that if I was just patient and listened, I could understand the faster speech.

Midnitesun

Member Empyrean

since 2001-05-18

Posts 28647
Gaia

1 posted 2005-10-06 10:06 PM

Amigo, I shall never forget the implant experience, and neither shall you. It had all the elements of comedy and near-tragedy blended together. But since you are so incredibly resilient, so determined to forge ahead and follow your dreams, the whole thing can now be seen in retrospect as just another stepping stone in the adventures of Jaime, the shining Southern Cross of Colorado.
Some day, I hope you'll visit me in Oregon, and walk along the shores of the mighty Pacific Ocean, hear the waves as they crash against the rocks, listen to the seagulls screeching overhead.

iliana
Member Patricius

since 2003-12-05

Posts 13434
USA

2 posted 2005-10-06 10:55 PM

Jaime, this is an inspiration piece of writing, truly! WOW....have you got patience and stamina! I am now awaiting more of your story.....I bet you have a book in you!

.....jo

Jaime Fradera
Senior Member

since 2000-11-25

Posts 843
Where no tyranny is tolerable

3 posted 2005-10-07 08:05 PM

AAAAAAAAAAh Iliana.
Thank you. I did in fact have to shoreen and summarize and condense the story, cuz it was a homework assignment.
I have been thinking of doing a blog about school, but I'm not sure it would be allowed on Passions.
I better get out of this loco editor ...
The Southern Cross

Nan

Administrator

Member Seraphic

since 1999-05-20

Posts 21191
Cape Cod Massachusetts USA

4 posted 2005-10-08 02:59 PM

Jaime - I'm going to take it upon myself to do something I always try to avoid. I'm going to "assume" that I speak for Passions in Poetry in telling you that your story IS absolutely, unequivocally welcome on this site.

I salute you for your stamina, your determination, and your resilience - not to mention your irrefutable ability to relate your life's experience to share it with us. Thank you, kind sir...

miscellanea
Member Elite

since 2004-06-24

Posts 4060
OH

5 posted 2005-10-12 08:52 PM

A riveting and inspirational story! THANK YOU so much, Jaime!

miscellanea

latearrival
Member Ascendant

since 2003-03-21

Posts 5499
Florida

6 posted 2006-06-14 06:00 AM

Back to the top!

Midnitesun

Member Empyrean

since 2001-05-18

Posts 28647
Gaia

7 posted 2006-06-14 06:26 PM

SIGH, now if only your NEW email addy, signature and password would work for you so you could come in here and reply!
How is that seashell device doing?

nakdthoughts
Member Laureate

since 2000-10-29

Posts 19200
Between the Lines

8 posted 2006-06-14 06:43 PM

Jaime I am overwhelmed at the feelings I have reading your story and find myself wanting to know more...and Kacy...it just shows what a wonderful caring person you are.

I am learning from you what I could never learn in a book.

Good wishes always
M

Midnitesun

Member Empyrean

since 2001-05-18

Posts 28647
Gaia

9 posted 2006-06-14 08:19 PM

Ah, Maureen, now if only Jaime could reply to this! I am trying to help him resolve his inability to post issue, but can only offer a few suggestions. The fix may have to come from Ron. He has a new PC and new email addy, but the system keeps logging him in as a guest apparently, so he can't post or reply. GRRRR
And thanks for your kind words.

nedj
Member

since 2006-06-23

Posts 87
Oregon USA

10 posted 2006-06-23 06:46 PM

Thank you for sharing this wonderful story. I really connected with it. I wrote what was, to the best of my knowledge, the first general-purpose speech interface for the blind in 1979. It ran on a Radio Shack Model 1 using a private-label synthesizer they bought from Votrax. Although I got out of that business for a few years, while I waited for the synthesizer technology to get better, in 1984 I learned that Votrax had released a synthesizer that had text-to-speech conversion built-in. Previously, I had to spell everything phonetically, which limited the speech largely to spelling.

To shorten the story, I wrote a program called Freedom 1 that year, and three versions later tore it up and started from scratch. In 1989 I released a new system called ISOS. I continued to market that product until the early nineties when it became clear that Windows was here to stay. At that point I decided that there were enough quality products on the market, like JAWS, that my contribution was no longer needed. The industry I had essentially invented had come of age. With very mixed feelings, I decided to pull the plug. It was time to become a "real" writer. Which I did. :-)

While I know I had deaf users, mostly at colleges who bought my products, I never met any of them. Of course, I didn't talk to them on the phone, either, as I did many of my users. Consequently, I have never heard a story like yours first hand.

I tell you all this detail, because I thought you might be interested in another side of the story, as I have so much enjoyed yours. I feel like a light has been turned on in a previously dark corner of one of the most important eras of my own life. Thank you very much for your willingness and ability to tell your story so well. And I am so pleased that the ending--or should I say the middle--is a happy one. I consider it one of the great privileges of my life to have known so many people who, like you, reached down deep and found the courage and determination to become their own miracle workers. It was my honor to count many of them as my closest friends. Perhaps that list is not quite complete yet. :-)

A poem's just a poet in a word.

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