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Sharing Stories

Lisa’s Story

”Out of Silence”
By: Lisa Kozlik

Helen Keller once said, "When one door of happiness closes, another opens; but often we look so long at the closed door that we do not see the one which has been opened for us."

Thanks to the miracle of modern medicine and a device called a cochlear implant, my "door of happiness" was opened on January 18, 2005.

I was born with normal hearing. By age 3, I was diagnosed with a mild hearing loss. Hearing aids and ear surgery were recommended for me at the time but because of issues related to my parents' health insurance, I went without. Fortunately I was able to function quite well until age 15 when I received my first pair of hearing aids for a moderately-severe loss.

My hearing loss progressed into the severe-profound range by the time I was 25. I was devastated. How could this happen to me? Why did this happen to me? Aside from the fact that I was losing my hearing, I had another problem -- I was totally blind.

I was born with a retinal disease called retinopathy of prematurity. As a preemie who weighed only 2 pounds at birth, I spent four months in an incubator filled with oxygen to help me breathe. My retinas detached as a result of the high oxygen levels that were needed to keep me alive.

Shortly after the diagnosis of severe-profound hearing loss, my vocational rehabilitation counselor referred me to the local Center for the DeafBlind where I learned alternative communication techniques including the use of FM systems/assistive listening devices, tactile sign, print on palm, Braille/raised print alphabet card, TeleBraille and computer use via Braille output. These skills served me well until two frightening experiences brought home the painful reality of my hearing loss.

The first incident took place during an internship experience in which I was locked inside the building because I didn't hear people leave. Thank goodness nothing worse happened. If there had been a fire or other emergency at the time, I hate to think what could have happened because of my deafblindness.

The second incident involved my mother. She was ill for several days and newly diagnosed with terminal cancer. After checking on her one evening, I found her in a very poor state of health and needed to get her appropriate medical treatment. Without a moment's hesitation, I picked up the phone and dialed 911. Then a sick feeling came over me. How could I summon help if I couldn't hear on the phone?

I had no choice. I spoke into the phone, indicated that I was deafblind, kept repeating my request for an ambulance -- and prayed that someone heard

The paramedics arrived and before I knew it, several people were gathered around my mother, but I couldn't see or hear what was going on.

I can't remember the last time I felt so helpless! The strongest hearing aids available were no longer helping me understand speech.

I had heard of cochlear implants before, but could an implant help me? I had
nothing to lose and everything to gain, so I made arrangements to be evaluated for a CI.

During the evaluation I was declared a good candidate for surgery and learned that my progressive sensorineural hearing loss was caused by a variety of factors including low birth weight, secondary effects of retinopathy of prematurity, ototoxic drugs given to me while in the NICU, antibiotics for ear infections and years of untreated allergies.

My surgery was scheduled for December 22, 2004 -- two months after my 34th birthday and 6 days after my mother lost her battle with terminal cancer.

I chose to have my left ear implanted as this was the ear that had no speech discrimination for the past 10 years.

My sister drove me to the hospital the morning of surgery. All kinds of questions kept running through my head: "Am I making the right decision?"; "What will recovery be like?"; "What will I do if the CI doesn't work as expected?"

Surgery was scheduled for 8:30 a.m. By the time I completed the necessary paperwork and changed into a gown, my tactile interpreter arrived. We talked for awhile before I was wheeled into the prep area for surgery. A nurse confirmed that I was to receive a cochlear implant in my left ear and then explained that she would be inserting a needle into my arm which would help me sleep.

A few hours later I awoke with a headache but aside from that, my recovery went very, very well! I was able to remove the bandage 48 hours after surgery and was feeling like myself again in no time.

Activation was scheduled for January 18, 2005. What an amazing day it was!

My neighbor Lillian was the only person who attended. Since I didn't know how I would react emotionally, I thought it would be best to keep the number of people down to a minimum to avoid distractions, etc.

Lillian and I arrived at the hospital a half hour early. We decided to go up to the clinic to wait for my interpreter. A few minutes later, my tactile interpreter arrived and asked me how I felt. "Excited! Very excited!" The more we started talking about my activation, the more Lillian started to tear up telling me how happy and excited she was for me.

At ten minutes past 1:00, my audiologist came out to get us and took us into a room. She then explained that she would go through each electrode and set my comfort or "C" levels. Because I had difficulty knowing when I heard a medium sound, my audiologist asked me to listen to the very loudest sound I could tolerate and work my way down from there to establish a comfort level. Some of the higher pitched tones were those I felt rather than heard. Although the tones didn't hurt, their vibration was somewhat bothersome. My audiologist explained that because I haven't heard many of these frequencies in a very long time, my brain needed time to become used to hearing them again. We next moved onto threshold or "T" levels. I had some difficulty with this because I couldn't always tell when I was hearing beeps. Sometimes it seemed as if I were feeling them instead of hearing them. By the time 17 electrodes were programmed, I began to recognize that I was hearing 3 beeps.

Next came my activation!! After my audiologist fitted the magnet/speech processor and explained some of the sound characteristics I might hear when my speech processor was turned on, she asked if I was ready. I said yes and held my breath for what was to come...

After a few seconds, my audiologist spoke for the first time. Instead of hearing Donald Duck or Mickey Mouse on helium, I heard a repetitive metallic sound that was uncomfortably high pitched. I couldn't understand anything she said, but I knew it was her voice because I could hear rhythm and pause, rhythm and pause, rhythm and pause. I told my audiologist, "I can't understand what you're saying, but I can hear you!!" Instead of crying, I started to laugh because I was so happy with what I had just heard!! That metallic blur of sound was music to my ears!!

After a few minutes the high pitched metallic sound became uncomfortable, so my audiologist lowered the threshold. She then asked me to wear my right hearing aid so that the high pitched frequencies from the implant could be balanced with the low frequencies picked up by my hearing aid. My audiologist began to speak again and asked that I listen to her for a minute or two so that I could determine whether or not the sound of her voice was becoming more comfortable to me. It was!!

Several more minutes passed before I asked my audiologist to increase the volume twice. It was then that I began to notice that although I couldn't recognize words, I could distinguish the differences between letters by their tonality. For example, after my audiologist demonstrated the "sss" sound, I noticed that it had a higher tone than a "t" or hard "c." The more my audiologist began to talk, the more I could recognize "sss," "t" and "c" by their tone.

I was asked to remain on program 1 for at least a few days until the quality of what I'm hearing becomes softer or more difficult to hear. From what I was told, program 2 is slightly louder and will provide more volume.

My appointment lasted several hours and by the end of it, I was exhausted!!

As Lillian and I left the hospital, I heard a loud sound but could not tell what it was or where it was coming from. I was told that it was a large passenger bus.

When we took the elevator down to the underground parking lot I was hoping
to hear the elevator doors opening and closing, but I didn't. Instead, I heard people talking. To my surprise, Lillian told me they were standing arm's length away from me!! I couldn't believe it!!

While we were in the car getting ready to leave I heard yet another sound - Lillian putting on her gloves. I also heard the turn signal in her car and the sound of her winter coat brushing against the car seat.

When Lillian and I got home I asked her to come with me to my apartment for a moment. I went over to my microwave and started pressing each button. I could hear them beep and better yet, it sounded exactly the way I remembered before I lost my hearing!!

My second day of hearing with a CI was even better! A friend and I went for a walk along a quiet road near my apartment complex.

One of the first things I noticed was a quiet "tap," "tap," "tap" underneath my feet at which time I was told that it was the sound of my footsteps in the snow! As we walked, I continued to be mesmerized by this sound because it was so calming and rhythmical! Every time I walked onto a patch of dry, powdery snow, I could hear a softer, but more pronounced "tapping" sound. The more snow there was, the louder the sound. The less snow there was, the quieter the sound.

Ever since losing my hearing, I've never been a fan of snow because of how difficult it made outdoor travel for me as a totally blind person, but today I fell in love with it! I even had a passing thought about how exciting the next big snowfall would be! Who would have thought? As my friend and I continued our walk, I began to hear a constant high pitched sound that seemed to get louder and softer, louder and softer. Sometimes the sound I heard would be low pitched but would still have the same quality of repetitively getting louder or softer. What do you know? It was the sound of traffic - something I've been unable to hear for the past 10 years!!

I listened more closely and began to notice sound patterns which made it recognizable to me. For example, when a car approached, I could hear it getting louder and louder until it was replaced by a higher pitched sound that slowly trailed off into a low pitched hum. When cars were coming from behind me, I heard a high pitched sound that gradually became louder and then faded into a lower pitch until I could hear it no longer. Amazing!! While cars passed from in front and behind me, I could hear patches of snow underneath their tires. The more snow there was on the road, the louder and more consistent the sound.

To my delight, our walk ended with the most beautiful sound I've ever heard -- birds singing! After hearing what sounded like a high pitched repetitive "cheep, cheep, cheep" and being told that it was a bird, I stood there and cried over a sound I had not heard in 20 years. I listened and cried. Listened and cried. Listened and cried.

I continue to be amazed at how much my CI has changed my life! Sadness has been replaced by happiness, tears with laughter and isolation with friendship. I am no longer a person who is part of the environment – the environment is now a part of me.

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