What a Cochlear Implant Is NOT and What It IS
By Denise Portis
Editor: Unfortunately many members of the general public believe that
our hearing aids or CIs "fix" our hearing loss. Those of us who use them
realize this isn't the case. Here's Denise Portis' story of how she
responded to this kind of situation.
You can view the original of this story (and a picture of the lovely
ladies) on Denise's blog at http://www.lightkeepers.net/hearingelmo/index.html
~~~~~~~~~~~~~~~~~
My sister happened to be in town this past week for a meeting. She
lives in the Ft. Worth area, and I only get to see her once a year if I'm
lucky!
Although we do not know each other like we did when we were growing up,
we still have a lot of history growing up on a ranch in southeastern
Colorado. In spite of distance and busy lives, nothing changes the fact
that we are sisters.
Since I lost my hearing over a long period of time, and since my family
is spread out all over the U.S., most did not realize or understand what
the annual changes in my hearing loss actually meant. It came as rather a
surprise to them I believe when I could no longer talk on the phone to
them, and an even bigger surprise when they learned I planned to get a
cochlear implant.
I don't consider myself a "poor communicator" and yet sometimes I
communicate certain things VERY poorly. I think that sometimes because my
immediate family and I know so much about hearing loss, that the people in
my life also know a great deal of information about hearing loss. Since I
was sort of also classified as "the whiner" in my family growing up, I
also think that this affected the way I chose to relay information about
my progressive hearing loss. As I acquired the disability of hearing loss
over time as an adult, I worked extra hard at keeping how difficult the
transition was for me to go from a person with normal hearing to a person
who couldn't hear at all.
My sister loves me and I love her. But Diane doesn't understand hearing
loss. She has her own family, job, friends and LIFE. It's difficult to
research and discover things about something that seems "fuzzy" to you -
something that you don't clearly understand, when it isn't happening to
you. So I don't fault the question she asked when we were talking this
past week. I think it's a question that many people think, but just don't
ask. Taking advantage of the fact that we are sisters and that she is not
the type to sit around wondering when she can just ask, she point blank
asked me,
"So? If you have a cochlear implant now, why do you need a dog? Didn't
that (as she gestured towards my CI and bling) fix you?"
I think many people think a CI "fixes" your hearing. They may think
that now that you have a cochlear implant, you have perfect hearing and
are "normal". I realize that most people talk about how things are
different by discussing things "alike" first, followed by how things are
"different". However, since I believe there are many misconceptions about
CI's, I wanted to start with what they are NOT.
What it's NOT:
1. A cochlear implant does not make you Jamie Sommers. You are not the
Bionic Woman (or man) and can hear things 4.2 miles away.
2. A cochlear implant does not make you a lightning rod. Someone with a
cochlear implant is not more likely to be struck by lightning than someone
else. Sure! If you are playing outside in a lightning storm on a hill
without cover, holding a golf club in your hands then yes. You might be
hit by lightning. But it's not because you have a cochlear implant in your
head.
3. A cochlear implant does not provide crystal clear hearing where the
recipient never has to say "huh?" again.
4. A cochlear implant's magnetic coil is not a "plug". I realized my
sister must have thought this when she winced as I took it off to show
her. There is not an opening to your brain, it doesn't "plug in" like a
cord in an electrical socket. There are no gruesome wires or
frankensteinish types of protruding pieces of metal.
5. A cochlear implant does not make someone begin to have balance
problems - usually. I have heard that it can happen, and that is why good
surgeons always run a battery of tests which include ways to detect if you
have vertigo problems already. I have always been "dizzy" (though never
blond) and I almost failed the tests at Johns Hopkins on vertigo. I have a
mild version of Meniere's disease, and looking back I think it began at
around 18 years old. I did not begin losing my hearing until I was 25. I
have a history of accidents a mile long. Every emergency room doctor knows
me by name. I break bones, fall a great deal, and run into things. I
actually have no memory of NOT being this way. Growing up I was told I was
"clumsy". My CI didn't make me dizzy. I was already dizzy. I do realize
that some people began having balance problems after receiving a CI. But
as I understand it, this is the exception to the rule and not standard for
CI recipients.
6. A cochlear implant does not allow you to hear every kind of
environmental sound. There are still things I don't hear at all, or don't
hear well.
What it IS:
1. A cochlear implant is a bionic type of device surgical implanted
into your cochlear array. Some consider it a prosthesis even. One is
"mapped" frequently in the beginning (sort of like being programmed) and
then usually once a year for life after receiving one. Each mapping allows
adjustments to enable you to hear things more clearly, and electrodes are
tested and checked.
2. A cochlear implant can be worn anywhere except in water. One cannot
scuba dive after receiving a CI (due to pressure). Some like my own are
"splash resistant". I can get caught in a rain storm without an umbrella,
or hop into the shower accidentally without removing it and not destroy
it. Certainly, should those things happen I would promptly put it in my
Dry 'n Store (an electronic drying device), nor would I ever do those
things on purpose. I mean I DO shower on purpose, but I don't jump into
the shower with my CI on with the intent of destroying it. (In hindsight
in writing this I thought I should assure you that I DO shower, and do so
ON PURPOSE).
One can swim with a CI, but not with the outside components attached.
Water tends to ruin them. As long as you are not scuba diving, you can
still enjoy swimming, snorkeling, and rain showers. You just "play smart"
and take care of the device that houses the controller, etc.
3. A cochlear implant allows you to hear again - when you have reached
the point that you no longer can. Hearing again and "hearing perfectly"
are two different things. One doesn't grouch that they aren't "normal"
when they can hear after they could NOT. I can talk on the phone now (in a
quiet room with my own phone), I can hear in church, talk to people
face-to-face and in small groups. I do not do well in restaurants, large
groups, concerts, etc., without special assistance from infra-red or FM
assistive listening devices. A "loop" is my favorite way to hear in these
"tough" environments. You walk into the room, switch your CI to t-coil,
and you "hear" without the background noise.
4. The magnetic coil of my implant connects to another magnet securely
embedded in my skull. The magnets connect very well through my skin.
Nothing shows, and I try very hard to not appear "gory". Grin! I'm rather
proud of the fact, that I'm probably one of the few people I know who can
lean into the refrigerator and "lose" their ears.
Weirdest place I ever lost my CI? At the grocery story in the pickle
isle. I was leaning down to try and find the specific type of pickles my
family likes, and "whoosh" off my CI went to connect to the metal lid of a
pickle jar. As I was desperately looking for my CI, a lady came by and
smiled and said,
"Are you pregnant honey? Looking for pickles?"
I was so astonished that I replied, "No! I'm looking for my ear!"
Needless to say she shrieked and ran.
5. A cochlear implant can sometimes mask tinnitus. Another common
symptom and side effect of progressive hearing loss. It is a "hum" or
ringing sound in your ears. The CI can mask this effect and keep you from
hearing it. I have also met some people, however, who now have tinnitus
(when they remove their CI) and they did not have it before.
I'm use to the ringing. When I take my CI off at night the ringing
begins. But it isn't bothersome for me, and I go right to sleep. When
hearing the ringing, I no longer shout, "Hello? Who's there?"
6. My cochlear implant and my CI experience is not like anyone else's.
Everyone who has a CI has a unique experience. I still hear new things
everyday. But my experience, what I can hear and not hear, is as unique as
my "map". No two recipients are alike. I think that is why I think an
audiologist specializing in CI's would be such a fascinating job!
I hope my little "list" has helped!
Denise Portis
