This article is reprinted from the
January/February 2007 Hearing
Loss Magazine.
Copyright 2007 Hearing Loss Association of America
www.hearingloss.org
Rebuilding A Life Through New Technology By Barbara Liss Chertok
Michael Chorost lost the remainder of his hearing
in 2001 while in his thirties. In Rebuilt, a humorous
yet touching cyber-memoir, Michael tells the story
of his decision to undergo surgery for a cochlear implant
and life with the device that made him feel as if he
were part human and part computer. Barbara Chertok
interviews Michael for Hearing
Loss Magazine.
Michael Chorost (42) -- teacher, author, speaker and
consultant -- was born with a severe hearing loss when
his mother contracted rubella during the 1964 epidemic.
Michael did not learn to speak until the age of three
and a half when he was fitted with hearing aids. Having
educated parents: his mother had majored in special
education and his father was a child psychologist,
was an advantage. They set out to choose the best options
to see if their deaf son could be integrated into normal
life, and have the opportunities available to people
who could speak and hear.
The League for the Hard of Hearing in New York City
fitted Michael with his first hearing aids. From there,
the family was referred to the John Tracy Clinic in
Los Angeles, founded in 1942 by Spencer Tracy and his
wife Louise, who had a deaf son.
The Chorosts then began a correspondence course training
them in how to educate their young son by using his
residual hearing to learn spoken language. In 1969,
Michael was accepted at Summit Speech School in New
Jersey where he flourished. (Today, half the children
there have cochlear implants.) This was the beginning
of Michael's mainstream education.
Michael Chorost received a bachelor’s degree.
in English from Brown University in 1987 and a Ph.D.
in English and educational technology at the University
of Texas at Austin in 2000. He was employed from 2000
to 2004 as a researcher and writer at Stanford Research
Institute International in Menlo Park, California,
and currently teaches at the University of San Francisco.
He is also a freelance writer, speaker and consultant
in San Francisco, where he resides.
Interview with Michael Chorost
Q. In the one short year since your book was published,
you have become an internationally known authority
on cochlear implants and social issues raised by advances
in medical technology. How does it feel to be a celebrity
of sorts?
Chorost: It feels great. It’s gratifying to
have one’s work recognized and appreciated. For
most of my life I was nobody in particular – just
another fellow in the world getting by. The book’s
been my ticket into a new world. I’ve been invited
to conferences all over the country, and I’ve
been flown around the world in first class and on Lear
Jets. Now I talk all the time with people whose books
I’ve been reading for decades. The constant intellectual
stimulation is far more exciting than anything I experienced
in graduate school.
Q. You teach rhetoric at the University of San Francisco.
Please tell us about that.
Chorost: I teach freshman composition
classes as an adjunct teacher. These are basic classes,
teaching students new to college how to do research
and write papers. I’d like to teach upper-level
courses, but you generally have to have a full-time
faculty position to do that. Maybe someday.
Q. When you travel the country delivering inspirational-motivational
speeches, what are you aiming for?
Chorost: To make people laugh.
To make them think. To feel the thrill of molding
the audience’s
thoughts and emotions with my words. It’s like
being a musician, using my voice instead of an instrument.
Q. You did not talk until you were three-and-a-half
and were fitted with hearing aids. How did you communicate
with your family?
Chorost: I didn’t. It
was a real mess. I had temper tantrums constantly,
and I was scared to death of just about everything.
I had no way of communicating my wants or understanding
what was going on around me.
Without language, a human being is just a bright animal,
a very screwed-up animal, because the human brain needs
language to develop properly. I was darn lucky that
I got hearing aids while there was still time for me
to develop language normally. Another six months, and
it might have been too late.
I had a guy over to repair my shower the other day,
and upon seeing my implant, he told me, in broken English,
that he had a son who was deaf. I asked how old he
was. Seven, the man said. Did he have an implant, or
hearing aids? I asked. No, he said. Is he learning
sign language? No.
I didn’t know what to say, particularly because
we could barely communicate. But this is a kid in terrible
trouble, growing up without any real access to language.
I gave him a copy of my book. Maybe someone in his
family will read it.
Q. I really enjoyed your book; it was a real page
turner, maybe because I also hear with a cochlear implant.
But you lost me at times with your highly-technical
details. Did you ever aspire to be a scientist rather
than a scientific writer?
Chorost: Yes, I did. I love science and engineering.
In grade school, I built ten-foot long suspension bridges
out of Lego bricks, lead weights, and string. In high
school I joined an amateur astronomy club and got certified
to use their 36-inch reflector.
But early in college I figured out that I’m a
verbal person, not a logical person - an artist, not
a scientist. Learning C++, a programming language,
in grad school almost killed me. I was struggling with
the most basic concepts while kids 15 years younger
than I were breezing through them.
I think that if I had actually become a scientist,
I’d have grown bored with the minute detail-work
of lab research and the politics of writing research
proposals. Writing is a better fit for me, because
it lets me enjoy science while also thinking about
the big picture of what science means for people’s
lives.
Q. Your website tells us: "Michael Chorost became
a cyborg on October 1, 2001 at age 36." That was
the day your cochlear implant was activated. For those
who have not yet read your book, what's “a cyborg”?
Chorost: Cyborg: cybernetic
organism, the fusion of human and computer. The term
was invented in the 1960s to express the hope that
someday humans would be enhanced by technological
modifications to the body. Since then it’s
become a popular-culture term, often used in science
fiction.
But, I would no longer say that I am a cyborg because
that reduces me to a label. What I am is, a human being
with a computer in my head that lets me hear.
Q. You have said music sounds much, much better with
instruments sounding brighter and clearer. What kind
of music do you listen to with your CD player?
Chorost: Personally, I like string quartets.
Q. In your book, you say "the cochlea is laid
out like a piano keyboard in a spiral." Would
you explain that for us?
A. The cochlea is shaped like
a snail shell. The outer end picks up high frequencies,
the inner end low frequencies. It’s an astounding system whose complexity I
can’t even begin to hint at here, though I discuss
it in my book. The important point is that the linear
organization of the cochlea has really helped the implant
engineers write the code that simulates hearing.
Q. You adopted a cat named ”Elvis” who
befriended you. Has he become your 'hearing cat’?
Chorost: No, he’s just an ordinary sweetie of
a cat. Sometimes, though, when I’m unplugged,
I realize someone’s at the door by seeing him
jump at the sound of a knock.
Q. After giving your brain time to acclimate itself
to hearing with a CI, did you continue to use a hearing
aid in your un-implanted ear?
Chorost: No. I get a little
benefit from a hearing aid in my right ear, but so
little that it’s
not worth it. Wearing a powerful hearing aid can be
very painful, because the earmold has to be extremely
tight to prevent feedback. It is such a relief not
to have to wear earmolds in my implanted ear anymore.
Q. For 36 years you used a combination of powerful
hearing aids and speechreading for communication. Do
you still have to rely on it?
Chorost: Speechreading certainly helps. Everyone speechreads,
even people with normal hearing. It helps me, but I
also use cell phones and listen to the radio all the
time.
Q. You have said: "There is nothing more isolating
than deafness." Has your CI removed you from that
isolation?
Chorost: Yes. I’d be unable
to participate in hearing society without it.
Q. When you first started
hearing with your CI, you complained in your book
that "after $50,000 worth
of work, I can hear leaves, footsteps and toilets,
but not people." How long did it take for that
situation to improve?
Chorost: I could hear people – their speech
just sounded like gibberish. In about a week, that
had improved quite a bit. I’d say it took about
a year for me to feel like I was matching my previous
performance with hearing aids, though.
Q. Are there any sounds you can't hear with your CI
that you wish you could hear?
Chorost: Yes. I’m still a person with a hearing
loss – I still struggle to understand people
sometimes, and I still miss things. I had a friend
over the other day and she said, “You know, the
people upstairs are running their dishwasher now.” I
said, “Really?”
Q. In your book you say: It's only when I listen that
my cyborg technologies make me a better human being.
What's the difference between hearing versus listening,
anyway?
Chorost: Hearing is registering
the presence of a voice. Listening is paying attention
to what another human being is saying with one’s
whole spirit.
Q. Hearing on the phone with
a CI is often used as a gauge for success. You wrote
that your mother sounded as if she was "speaking in tongues," in
your first phone conversation with her. How does
your mom sound nowadays? Have you tried a cell phone?
Chorost: Well, after five years,
she sounds like my mom – my mom as heard through a CI. It’s
very different from what I heard through hearing aids,
though the cadence of her voice and the vocabulary
she uses are of course the same. Regarding cell phones,
I have owned three since 2002. I now have a Blackberry
with a Bluetooth headset.
Q. Do you still struggle to hear in crowds or has
that improved?
Chorost: That’s one of my big success stories.
I hear considerably better in crowds than I did with
hearing aids. I’m not sure why. I think the T-Mic
attached to my processor gives me better directionality.
I’m also a better listener.
Q. Have you tried aural rehabilitation? Would you
recommend it to others with a CI?
Chorost: I listened to books-on-tape
after my CI was activated, but did no formal rehab.
There really wasn’t
any self-paced aural rehab program you could do in
2001, but now there is. There’s a computer program
called LACE (Listening and Communication Enhancement),
an Aural Rehabilitation Training Software developed
by NeuroTone, Inc. Another one is Home Aural Rehabilitation
Programs for Children and Adults developed by Advanced
Bionics Corporation. Maybe I’ll try them when
I go bilateral.
Q. You wrote: "The implant is a prosthesis not
a cure. When the headpiece falls off or the battery
dies, I'm as deaf as ever." Did you ever leave
home without it?
Chorost: Never. Never, never
ever. What if there’s
an earthquake and my building collapses, with my CI
in it?
Q. Pre-CI you claimed to be the self-professed 'geek,'
socially inept and isolated. You had no girlfriend
until you were 25. How would you describe yourself
post-CI?
Chorost: My dating life has
gotten a lot better since the book came out. Being
a published author, it’s
a chick magnet, I tell you. More seriously, living
in San Francisco instead of the suburbs of Silicon
Valley has helped a lot.
Doing work I love has helped a lot. Having recognition
and status has helped a lot. I’m happier and
more relaxed now, and that’s made a big difference
in my dating life.
Q. Has your search for love in the world of online
and off-line dating proven to be just as challenging
as learning to hear electronically?
Chorost: Learning to hear again
is nothing compared to figuring out love. It doesn’t
even begin to compare.
Q. Some of your readers were put off that you included
details of your sexual escapades in your book. Any
regrets about having put them in?
Chorost: None at all. I was
frustrated by the fact that past great memoirs of
deafness – Henry Kisor’s
and David Wright’s come to mind – said
next to nothing about intimacy with hearing loss. I
wanted to break that barrier, and by gosh I did.
I wanted to create a whole portrait of my life, focusing
on more than just my ears. I think the fact that I
was candid about the frustrations and neuroses I had
back then help give the book its unique character.
That said, I feel a little awkward when potential dating
partners read the book now. A memoir is a self-portrait,
and when it’s done, it no longer changes, but
you do. That means it becomes an increasingly inaccurate
self-portrait as time goes by.
I’m very proud of what I achieved in the book,
but I’m no longer the guy who wrote it. The two
years after I finished it were a time of tremendous
learning and growth, and most of the emotional and
sexual issues I discuss in the book have been resolved
to a degree that just takes my breath away. Life has
been very good to me. I’ve moved on to new challenges
and issues, and healthier ones, I’m happy to
say.
Q. After a year of experimentation
with your implant, you say you have regained about
80 per cent of the hearing of a normal person. Would
you consider getting another cochlear implant on
the other side (“going
bilateral”) as some others are choosing to do?
Chorost: Yes. My website has
an extensive discussion of my adventures in going
bilateral. I’m still
arguing with my insurance company about covering the
procedure.
Q. You have said you sometimes envied the signing
Deaf community and the camaraderie it offers, yet you
never seriously considered it. Do you feel cochlear
implants will destroy the Deaf culture community which
communicates by sign language rather than spoken language?
Chorost: I don’t think
it will disappear, at least not for several decades
to come, but it is almost certain to shrink. In fact,
it already has. And, its demographics are going to
change.
Because of inequities in health care, the
children of the well off will get implants and integrate
with the hearing community while the children of
the poor will learn American Sign Language (ASL),
if they discover the Deaf Culture community at all.
That means the signing Deaf population is likely
to fall further and further behind economically.
Q. What would you say to culturally Deaf parents who
refuse to have their child use hearing aids or cochlear
implants because they want their child to be culturally
Deaf as they are?
Chorost: The first thing I would say is that every
family is unique, and no one is in a better position
than the parents themselves to decide how their children
should be raised.
However, I can point out that according to the U.S.
Census, the unemployment rate in the Deaf community
is 50 percent. That should give any parent pause. Even
though some profoundly Deaf signing children do become
professionals and skilled workers and have full, satisfying
lives, you can’t escape the fact that deafness
and linguistic isolation closes off many possibilities
in the larger world. We all know that people who grow
up in this country speaking only Spanish have drastically
limited prospects.
Not giving a deaf child an implant early in life means
that they will never have a full range of choices in
life. That’s a point that culturally Deaf parents
should consider carefully.
Q. In your article "My Bionic Quest For Bolero" (Wired,
November 2005), you write: "My hearing is no longer
limited by the physical circumstances of my body. While
my friends' ears will inevitably decline with age,
mine will only get better." Do you really believe
this?
Chorost: Of course I do. They
are losing more hair cells and more hearing, with
every passing year. I’ have
none left to lose. As long as the implant keeps working
and the software keeps getting better, I can only go
up.
Q. You seem to be a born-to-write kind of person.
With a successful first book under your belt, I hear
you are working on a second one. What can you tell
us about it?
Chorost: I am working on a second
book, but what that book will be, I don’t know just yet. I’m
doing a great deal of reading and thinking, and having
conversations with scientists around the country.
For the moment, a different project is taking up most
of my time and energy: I’m scriptwriting a pilot
for PBS on science and technology in the 22nd century.
The project just dropped into my lap. I never expected
to be writing for TV. But that’s the great thing
about my life: new and interesting things are happening
to me all the time.
Barbara Liss Chertok was suddenly
deafened at age 21 due to an autoimmune disease, and
received a cochlear implant 41 years later. She is
a former speechreading (lipreading) teacher, a freelance
writer and a board member of the American Hearing Research
Foundation. She joined Hearing Loss Association of
America in 1979 and is an active member of HLA of Sarasota,
Florida. She can be reached at barbchert@aol.com.
MORE TO KNOW
News Flash -- August 24, 2006: REBUILT wins the 2006
PEN Award for Creative Nonfiction. The award included
a cash prize and a trip for Michael Chorost to the
Awards Ceremony in Los Angeles last fall.
Rebuilt: How
Becoming Part Computer Made Me More Human (hard cover) Rebuilt: My Journey Back to
the Hearing World (soft
cover)
Published by Houghton Mifflin, June 2005
The paperback version is available from Hearing Loss
Association for $13.95 plus shipping. GO to www.hearingloss.org
Online Bookstore.
Cochlear Implants
Cochlear implants were approved by the Food and Drug
Administration (FDA) in 1985 for adults, and in 1990
for children. Children born deaf or with profound hearing
loss as young as 12 months of age are now eligible
to receive one or two cochlear implants so they can
develop spoken language skills and attend mainstream
schools.
Three companies manufacture cochlear implant devices:
Advanced Bionics, Cochlear Americas, and Med-El. These
devices include a microphone that picks up the sound,
a processor that converts the sound into electrical
signals and a system that transmits the electrical
signals to an electrode array inserted into the cochlea.
|
Cochlear implants (CI) have been successful in restoring
partial hearing to people with severe-to-profound hearing
loss. Many CI recipients are now able to communicate
and understand speech without the use of speechreading
(lipreading), and many are able to hear over the telephone
and enjoy music.
Cochlear implants are approved only for people with
significant bilateral hearing loss who cannot be helped
sufficiently by hearing aids. At the present time,
more than 100,000 people worldwide have received cochlear
implants.
-- Barbara Liss Chertok
Bilateral Cochlear Implants Go Mainstream
By Loren J. Bartels
For more than 25 years, cochlear implants have revolutionized
the world for people who have severe-to-profound hearing
loss, but many successful cochlear implant recipients
commonly have difficulty hearing in noise. In noise,
single sided cochlear implant performance deteriorates,
seeming less loud and less clear.
A growing body of research now shows that the same
physiological tools normal hearing people use to hear
better in noise with two ears (binaural hearing) also
help cochlear implant individuals. , Those tools include
sound localization, binaural summation, binaural squelch,
and head shadow affect.
Sound localization allows not only more rapidly direct
access to speechreading (lipreading), but also improves
the ability to utilize other benefits of binaural hearing.
Sounds that reach both ears simultaneously summate
meaning the brain adds information from each ear to
make the speech seem both a bit louder, 3-5 decibels,
and noticeably clearer.
An equally effective phenomenon is that sound that
reaches the brainstem non-simultaneously suppresses
itself, a concept called squelch. The result of these
two benefits in binaural hearing, even with cochlear
implants, is improved speech recognition in noise.
Noise from one side is not heard nearly as well in
the opposite ear. The ear opposite the sound is in
a sound shadow created by the head, the head shadow
effect. With binaural hearing, the brain is able to
choose to listen to speech that comes to the quieter
ear.
However, in cases of a single sided cochlear implant,
if the unwanted sound is directed to the ear with the
implant, then the individual is unable to take advantage
of the head shadow. But, if the person has bilateral
cochlear implants, he or she can often facilitate this
kind of listening.
When the hearing loss is relatively symmetric in development
and severity, good reason exists to believe that bilateral
cochlear implants would be the best possible rehabilitation.
Situations do exist where we might not recommend bilateral
cochlear implants, such as when one ear has been completely
deaf for more than 20 years. Reviewing historical audiometric
hearing data is important in separating out this critical
information.
Physical conditions may render one ear a poor candidate
for an implant. For example, after meningitis, we would
not recommend bilateral cochlear implants for a person
who had severe reactive bone (often called ossification)
filling one inner ear but not the other.
Cochlear implant surgery in the ossified inner ear
is less likely to be effective. For a person with a
severely deformed inner ear; e.g., a severe Mondini
deformity on one side and a more normal one on the
other, a single implant may be more appropriate.
With bilateral cochlear implants becoming more mainstream,
an additional question now needs to be considered for
this technology—one implant or two?
Loren J Bartels MD FACS with
his chief audiologist opened the Tampa Bay area’s
first adult cochlear implant program as well as the
area’s first pediatric
cochlear implant program at the University of South
Florida. He is an otolaryngologist involved in cochlear
implant design and he and his team have been involved
in cochlear implant clinical trials research for many
years. Dr. Bartels is now the director of the Tampa
Bay Hearing and Balance Center. http://www.tampabayhearing.com/
The information was Reprinted with permission and edits
from the Advanced Bionics’ Bionic
e-BEAT newsletter,
Vol 3, Issue 2, Sept 2006.
