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Sharing Stories

Lil’s Story

My name is Lil Klein.  I’m a widow with three grown married children and four grandchildren.  I live in Illinois and I retired from a reading specialist position in June 2004. 

One thing I have learned in the last few years is that everyone’s “hearing” story is different.  We are all connected in the sense of our profound loss, but how we came to those circumstances is different.  

My initial hearing loss is thought to be hereditary.  My father had a mild loss and so does my youngest son.  It wasn’t until 1980, when I started substitute teaching that I noticed I was having trouble understanding the students.  This always seemed to occur when I was working in old buildings with high ceilings and wooden floors.  I had my hearing checked at that time and found that I had a mild high pitch loss. 

It was almost 10 years later, when my principal wrote in my teaching evaluation that she noticed I was having some difficulty understanding my students.  I had my hearing checked then and that is when I got my first hearing aid.  Over the next 10 years, my hearing continued to decline to the point of getting a second hearing aid and then more powerful aids.  By the beginning of 2001, I had lost most of my high pitch hearing, I was operating at about 50% in my median pitches and the low pitches were close to the normal range.  (My audiogram looked like a chart of a hot stock gone bad.)  I left classroom teaching around this time and took a position of a literacy coach in my building.  In this job, I was working with students, teachers, and volunteers, but usually in small groups. 

With my high pitches basically gone, I started investigating cochlear implants.  I heard about a clinical trial in its early stages at the University of Iowa.  They were implanting a specialized 6 electrode cochlear implant only 10mm into the cochlear shell.  The Hybrid Cochlear Implant would address the problem of high pitch hearing loss and by wearing hearing aids the low and median pitches could be boosted.  This would allow for a person to do well in a noisy situation and also help retain the enjoyment of music-which most regular implant recipients lose.  (The Hybrid Cochlear Implant from Nucleus Cochlear Corporation is in the final stages of clinical trial.) 

In July 2002, I had the surgery for the Hybrid Implant.  I was activated in August and just like most CI recipients, it took a couple of days for my brain to adjust to all those sounds I hadn’t heard in years.  I wore hearing aids in both ears to boost my residual hearing.  After the first week or so of adjustment, it was wonderful.  I heard things like birds and crickets that I hadn’t heard in years.  People noticed that I was getting conversation even when I was turned away from them. 

About two months after activation, my youngest son was getting married.  It was an exciting and stressful time.  The weekend of the wedding, I lost a great deal of my residual hearing.  The diagnosis for this loss was Auto Immune Inner Ear Disease.  (I have a thyroid autoimmune disease not related to my initial hearing loss.)  For over a year, I tried experimental drugs with varied results.  It was so exciting when the hearing improved, and devastating when it would be gone again.  I had pulsating tinnitus episodes where all my hearing would be gone and then hours later when the pulsing stopped, my hearing would return weaker.  That constant emotional upheaval and the side effects of the drugs caused me to discontinue that course of treatment. 

During those two years after the Auto Immune Disease attacked my residual hearing, my life deteriorated.  I couldn’t make my own phone calls-so either I went and made an appointment in person, or I had to ask someone to call for me.  I found that I was isolating myself.  I avoided going to parties or even group conversations.  I did a lot of bluffing to questions by shrugging my shoulders or saying “I don’t know”-rather than admit I didn’t understand what people were saying.  I would laugh at a joke being told, but I never got the punch line. 

In August 2004, I was implanted in the opposite ear with what is now known as the Freedom implant from Cochlear Corporation.  I felt blessed to get the implant at that time, since four months later the little remaining hearing I had was totally gone. 

About 6 months after my Freedom implant surgery, I realized that my life had taken a dramatic turn.  I could now talk on the phone using the telecoil button on the processor.  I could even understand my 2 year old granddaughter on the phone.  In the past, people avoided calling me because they knew how difficult it was for me on the phone.  I dreaded when the phone rang.  Now it’s great to be able to just chat with family and friends. 

Music has always been a big part of my life.  For over 20 years I sang in my church choir and I enjoyed going to the symphony with friends.  When I was implanted with the full CI, music was no longer enjoyable.  If I knew the song that was playing, I could pick out some of the melody, but any new music sounded like “Johnny one note”.  Just in the last few months, I have noticed that I can pick out melodies of songs before I know what is being played.  I was thrilled last month to go to see the musical Wicked in downtown Chicago.  Not only did I get everything that was said on stage, but the music and singing was wonderful. 

I’m hearing so well now that along with doing reading testing for my school district, I am working two days a week as a reading specialist helping struggling readers.  It is really great to be able to work with children again.  What’s really exciting is that others don’t see me as hearing impaired and I go through the day and seldom think about my hearing difficulties.  I feel like I’ve gotten my life back.

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