Hello, my name is
Cynthia Ann Farley. This is a narrative of my personal experience with
hearing impairment, which was discovered initially by my preschool
teachers. My hearing loss was determined to have been caused by exposure
to ototoxic medication that I had received as a toddler. I was first
tested for hearing loss at the University of Kansas in 1969. It was
discovered that I had a profound sensorineural loss in both ears with some
residual hearing in my left ear. Subsequently, I was outfitted with a
hearing aid at five years of age.
I adapted very well with
my hearing aid. In public school I was placed with a special education
class of about eight students with hearing impairments. All of us spoke
and did not practice sign language. In the sixth grade I was mainstreamed
half days to see how I would adapt to regular classrooms without special
services. As long as I sat up front, watched the teacher, etc. I did just
fine. There were of course adjustments on my part as well as the part of
others but overall it was a very positive step forward. Therefore in the
seventh grade I was totally mainstreamed, and it was a very liberating
experience after having been sequestered in a small class for so long. At
that point not only had I adjusted, I excelled with honors, hence I was
offered a transfer to a magnet school for the gifted. However I choose to
remain at my high school, as I wanted to be in school with my neighbors.
Something that I had never had the opportunity to do before now. High
school was pretty typical. When I was 16 I landed my first
"real" job as a salesclerk at a retail store. (I had always been
able to use the conventional phone with my hearing aid.)
After some college I was
employed at a variety of positions from retail sales, retail mgmt., postal
service, owner of a small business, real estate, homemaker, and as an
outside sales representative for Pitney Bowes. During my tenure at Pitney
Bowes my life changed drastically and very suddenly. That workday, I was
returning from lunch and all of a sudden it was like the volume just cut
out with lots of static on my hearing aid. My reaction was to assume that
my hearing aid was on the blink, so I went to my hearing aid center to get
a loaner aid. When none of the hearing aids there worked either, I had to
face the realization that the problem was with my ear. (Believe me I had a
hard time grasping this concept, it's commonly referred to as denial.) So
I embarked on my quest to get my life back.
I consulted with an ENT
surgeon Dr. Charles Luitje. I was in acute turmoil emotionally and
physically. Dr. Luitje was very sympathetic and a real life line to me
during this extremely rough patch. He prescribed a course of antibiotics
along with prednisone to try and correct the loss that had robbed me of my
remaining hearing. After that failed to produce the desired result, he
stated to me "Cynthia, I can restore your hearing with a cochlear
implant." A bold statement to make but he was that confident that it
would work for me. And I, doubting Thomas that I was, had serious doubts
as to whether an implant could really do the trick. So I consulted with
other doctors for a second opinion. It was reinforced that I had suffered
an irreversible deafness and that a cochlear implant was my only option if
I wanted to regain hearing.
During my "deaf"
period (8 months) I had to make many adjustments, so I truly have an
insider's view of what it's like to be deaf. For instance, I had always
been so independent to survive/thrive. Now I had to learn interdependence.
In other words I had to accept help from others whether I wanted it or
not, a hard lesson for me. I could not hear, therefore my ability to
communicate was severely impaired. My lifesaver was my ability to
lip-read, which served me well, as without the auditory information I was
totally dependent on lip-reading and writing notes. This was not only
tough for me but for those around me as well. My son was four years old at
that time and having recently becoming a single parent it was quite a
struggle as you might imagine. My parents suffered as did I to experience
the helplessness of sudden deafness and it's impact on myself and my
family. It was a terrible strain. Daily life was very stressful at times
without the hearing we have a tendency to take for granted. I couldn't
hear the doorbell, the phone, music, voices, smoke detector, cars etc. The
list goes on and on. I was truly in a prison of silence and it isolated me
from people. I experienced much depression and grief for my loss of
hearing.
After the initial shock
wore off I had to get a grip. I had to adjust as I had no other choice, as
I'm not a quitter. I could no longer fulfill the requirements of my
position at Pitney Bowes, therefore I opted to take disability as I could
not communicate fluently and did not want to impose. I was given a TTY for
telephone communication, which restored a measure of my independence, as I
no longer had to rely on "mom" to make calls for me. However, it
was very time consuming (even with VCO) to use and so that was
frustrating. I loved my alphanumeric pager because it would vibrate when I
had a message, so it became my answering machine / outside communication
tool for my hearing friends. I still drove, socialized and participated in
most of my previous activities (I even dated on some occasions!) I
experienced severe tinnitus with my deafness that was enough to drive most
people over the edge. (Think of screaming elephants and that's what it was
like a constant buzzing in the head day and night.) I had this the entire
time and so had to learn to block it out or go crazy. I went through the
period of adapting to deafness and see how it went, however it was hard…
much harder than I would have ever thought. So while I had tried to stay
open-minded about it, the memories were too strong and I knew I had to get
my life back.
I had finally come to the
moment of truth, and the truth was that I wanted to hear. I made the
decision to have the Clarion cochlear implant, at that point I reasoned
that anything was better than nothing as it would just give me more
information to work with. Something people with hearing loss do is put
pieces of information together like what we heard, or thought we heard, we
read (lips), and other cues to formulate in seconds our response. My
expectations at that point were to accept whatever benefit I would receive
and maximize it to my best advantage. (Although it was my secret desire to
get back on the conventional phone and trash that TTY!)
My insurance company
finally gave the authorization for my implant after much ado. The person
responsible for making my life-changing operation decision was not very
well informed about cochlear implants and her attitude was " Can this
device make a deaf person hear? Yea right!" A common assumption in
many peoples minds I'm afraid. However, she was convinced of its viability
after working with Joann Syrja of Advanced Bionics. Joann was in charge of
insurance reimbursement at that time. During a conversation on the phone
between Joann and Barbara in which Barbara expressed her doubts about the
implants effectiveness Joann dropped the bomb. " Guess what, I'm deaf…I'm
talking to you on the phone… and I wear the implant." That did it,
and my approval to proceed was granted. Harrah for Joann! She changes
lives and in doing so is a true champion indeed! Then another hurdle from
my insurance company they would only reimburse 100% if it were in-network
vs. 20% I would have to pay for out of network. I reluctantly had to have
my surgery elsewhere than with Dr. Charles Luitje who had fought so hard
for me, as I could not afford to pay 20% that I would have incurred
through his hospital. The surgery would have to be performed at a network
hospital. Since Kansas University had no experience with implanting a
Clarion device (in clinical trial at that time), I chose to have my
procedure performed at the University of California in San Francisco by
Dr. Robert Schindler, whom I had seen before at the age of twelve. I
resided at my cousins in San Leandro for several months to be in close
proximity before and after the operation.
The surgery itself on Dec.
5th, 1995 was pretty typical, no big deal, just a little apprehension
which is normal. No problems, just a little weak for a few days, also
normal. Everything went according to plan and I was released in less than
24 hours. No complications. So it's hurry up and wait till after the
holidays for hook-up.
Hook-up day was on Jan.5th
1996 at UCSF with my audiologist, Jan Larky .I'm wasn't sure what to
expect. It was scary not knowing. When the mapping session (programming of
the electrodes in my implant) was complete then came the moment of truth.
Would this work? Then Jan flipped a switch and I was on! Back in the
hearing world again! Just like that! It was a miracle! Liberty! I could
hear again! And it sounded natural to me. I was ecstatic to be back in the
hearing world and released from the isolation imposed by my deafness. Now
I could really appreciate all that life had to offer, and even more so
because of where I had been. My memory of that day will always be with me
as I felt like a prisoner that was given her freedom and it was such a
profound experience. After leaving the UCSF that day my mother and I
roamed the streets of downtown San Francisco and celebrated my rebirth as
a hearing person. We encountered a local street band on one of the
sidewalks and we proceeded to dance in our excitement!!! It was truly a
day to remember.
In retrospect I would like
to add a few things. I've worn my Clarion for about 5 years now. Although
I can use the conventional telephone fluently now with anyone (as long as
they speak English!) I had to work to get there. It was not instantaneous.
The day I was hooked up I tried it and failed to comprehend many words.
But I just kept trying. I practiced with voice messages and friends. I had
several re-mappings (part of the program as a map will change as your ear
becomes accustomed to sound). Within the month I was able to use the phone
without any adaptive equipment. (I would just hold the phone up to my
headpiece /ear level). At that point I would still have to say
"what" on more than one occasion! Since then I've had much
practice and it's not even an issue anymore. My point is that I was very
determined to regain this aspect of lifestyle and that I had to
consciously work toward achieving this objective.
Since regaining my hearing
I've moved in new directions literally and figuratively. From 1996-1997 I
was immersed in the historical renovation of an 1895 house that I owned.
This was the culmination of much hard work to realize this vision. Since
then, I've sold the house to the Archdiocese of Kansas City as well as
selling my stake in an apartment building.
Within six months after implantation I met my husband Doug in Kansas City
(he was in town on business). We dated across the miles for over a year
prior to our marriage and relocation to Minnesota. My son Zachary has
adjusted very well to all of the transitions and continues to grow up to
fast! Currently, I engage in volunteer work and I'm in the process of
starting a non-profit venture.
Last but not least, I
would like to take this opportunity to thank all of those of who have
spearheaded and supported the cochlear implant technology, for without
them we would not enjoy the hearing we have today.
Ó 2000 Cynthia Ann Farley
