A Really Nice Story - The Peanut Song Saga

I am on several CI forums and this was a story posted on one of them. I thought I would share it. It was sent to DB - Golden Poetry and written by Nan Rosen, a gal who received a cochlear implant. This one is a tear jerker and also stresses how important music is in our lives. Enjoy. . .

The Peanut Song Saga

"One thing my implant did for me is make it possible to communicate with my family. My husband knew sign language, and that is one reason we got on so well and married. Of the rest of my family, only my brother and his wife and sons knew sign language. Most other family members never even thought about learning to sign. My parents tried, but my father never got the hang of it. He simply could not learn a new language and they both gave it up. The one sign he did learn was "I love you." I received my Cochlear Implant in December of 1988 and it was activated January of 1989. Dr. Jon Shallop of the Denver Ear Institute told my father that I might have difficulty understanding words at first. If that happened, he should try singing a song I might remember from my childhood. He said people who once heard like I did used their memories of sound to learn to hear again with the implant. Three days after the implant was turned on, I still only heard static and loud noises. My family gathered in the living room to help me get the hang of speech. They called my name repeatedly, but I did not understand. My hearing dog got confused and started barking. That did not help, but I did start hearing a repeated sound every time he barked. Dad was sitting next to me and tried singing. He sang "The Peanut Song" about a peanut who "sat on a railroad track, his heart was all aflutter, the 5:15 came around the bend -- Toot, toot, peanut butter." At first I only heard the rhythm of the song and then I understood the words and then I heard my father's voice. It sounded exactly as I remembered it from when I was about 12. After that, I could understand words and gradually gained the ability to talk to most people. Learning to identify sounds like running water, birds and my dog's bark was fun. By the year 2000, my father developed Alzheimer's disease, a progressive disorder that robs a person of short term memories. A few years later at the age of 86, he went into a nursing home. On the last day I saw him, my brother and I visited him in his room. I tried to find something he might be able to remember and talk about. With Alzheimer's, memory loss is progressive and a person is most likely to remember things that happened deep in the past. With this in mind, I asked my father if he remembered his father's guitar. Oh, yes, he remembered that guitar and the songs he used to sing. Dad smiled and sang "I've been Working on the Railroad" from beginning to end just as his father used to sing it. When he finished, he was quiet for a minute and we both thought he was asleep, but he began to sing again and he sang the "Peanut Song." That silly song was the first thing I understood with my cochlear implant and the last thing I heard my father say before he died. The very last thing he did before we left the room was sign "I love you." Nan Rosen

Nerve Deafness

When I was diagnosed with my hearing loss, my parents were told that I had "nerve deafness." Lately that term has puzzled me because I can hear sounds with the help of hearing aids. How can something be wrong with my "nerve" if I can hear voices and sounds around me? I wear the strongest aids on the market and currently wear Widex digital hearing aids. I've assumed that the doctors, audiologists, and speech therapists that I've had knew what they were talking about and just accepted that diagnosis. I've grown up believing that there was no cure for nerve deafness and never really thought there was anything else out there that could help me except my hearing aids. But, that doesn't seem to be the case at all. "Nerve deafness" can be a major misnomer because it incorrectly implies that damage is to the auditory nerve and not the cilia (hair cells) in the cochlea, which is responsible for much of a person's hearing loss. In reality, the term "nerve deafness" has been around for the last fifty years or so. Until modern medicine, those of us who grew up in the 1950's and beyond are usually given this term if doctors could not find a cause of deafness. In another words, it was a "one name fits all."

I'm beginning to understand that there are several different types of hearing loss. One type is conductive, meaning that the sound comes into the ear but does not get to the cochlea or auditory nerve. That indicates that something is wrong with one or some of the bones in the middle ear. In most cases it is usually the stapes bone which has become stiff, calcified, or hardened and will not move. And when it is not moving, it is not transmitting the sound to the cochlea and auditory nerve. That is what is considered a conductive hearing loss. The cochlea and auditory nerve are usually in fine shape. I noticed on my papers from the doctor and insurance company that I have been diagnosed with sensorineural hearing loss. Which means the sound IS coming into my ear, gets through those three little bones of the middle ear and gets transmitted to the cochlea. But it is not getting to the auditory nerve very well because there is a problem in the cochlea. The cilia (hair cells) in the cochlea are dead or the fluid in the cochlea isn't there or there is something else wrong in that part of the ear. This explains why so many people are labeled with "nerve deafness" because the sounds are REALLY coming into the ear but are not being transmitted like they should to the auditory nerve. That is why I had to do the balance test back in May to determine if I had any fluid in my ear. And I did! This is where the CI comes in. My implant is specially designed to mimic the functions of the human ear like natural hearing. There will be a 22 channel electrode inserted in my cochlea and it is specially designed to protect the delicate walls of the cochlea.

One might ask how a cochlear implant is different from a hearing aid. Hearing aids only amplify sound. No matter how loud the sound the hearing aid produces, it does not provide clarity. That is why I've had so much trouble with amplifiers, speakerphones, loud noises and loud people. I've always tried to explain that "louder" is not always better. I have a severe to profound hearing loss and my ears cannot process the information that they are receiving because sound is still going through the damaged part. A cochlear implant does not make sounds louder. Instead, it bypasses the damaged part of the ear and sends the sound directly to the auditory (hearing) nerve. How cool is that???!!!

I am realizing that some people who qualify for a CI think might that there is no point in pursuing it any further because they have "nerve deafness." But the testing that I've had done has actually shown that I'm missing hair cells in my cochlea. If Mom was still here, I'm sure she would be pleased and tickled pink to know that I haven't given up on the possibility of being able to hear the sounds that have been denied to me all of my life. I have thought about her a lot lately and wished she was here to share this experience with me. I hope to be able to help other people like Susan has helped me. We all need someone to give us that "little push" and hold our hand during the journey. God is so good. He is bigger than any obstacle in my path and knows exactly what I need at the right time. His timing is so perfect!

Twelfth Report to John Tracy Clinic

When my hearing loss was discovered, my parents enrolled in a correspondence course with the John Tracy Clinic in Los Angeles, California that had a program and support system for the deaf and hearing impaired community. As I progressed with my "training" to hear and be a part of the hearing world, my mother was required to send "reports". The 12th report was considered to be the LAST and FINAL one. Mom saved all of my records and my father passed them on to me. I recently discovered a copy of her "twelfth report" which was written in 1977. . .

To Whom It May Concern,

For a long time I have wanted to send a "twelfth report" on our daughter, even though it has been nearly 15 years since the "eleventh report". At that time our Laurie was an eager five-year old, just getting ready to begin classes for the deaf in the public school system at Columbus, Ohio. How much has happened since then! I can't begin to summarize those busy, rewarding years in a letter, but I thought you might be interested in a report on her present status, particularly since I never did mail that last report. That year she attended the kindergarten class in Columbus, I was pregnant with our fourth child, a son, who was born May 4th, 1963. A few years later we became involved in therapy and training for Doug, for he, too, has a severe hearing loss which has become progressively worse. But that is another story. . .

After a year in the pre-school deaf class with an excellent teacher, (my note: I remember her name as Mrs. Card), Laurie was transferred to regular classes where she continued to do well through her twelve years in public school. Life had its ups and downs - just as it has for our other hearing children - but she was always an eager student and maintained a positive attitude toward her situation. She graduated from Centerville High School in 1975 in the upper fifth of her class of 550 with a grade average of 3.30 GPA in college preparatory courses. During her senior year she participated in a D.C.T. (Diversified Cooperative Training) program where she attended school in the mornings and worked as a dental assistant for a local dentist (my note: Dr. Mark S. Hodson, D.D.S.) in the afternoons. For a time, she planned to enter the field of dental hygiene, but has since decided on a career in accounting. In the fall of 1975, she entered Wright State University in Dayton, Ohio and lived in the dorm on campus. There she met Steve, a senior in engineering physics who had already been accepted into a Navy program for outstanding students interested in nuclear submarines. By Christmas we were hearing a lot about Steve, by Easter they were engaged, and on November 13th, 1976, after he completed Officers Candidate School, they were married. Laurie had continued with school during summer and fall terms, so she had most of her Sophomore work completed. She is now a student at Florida Technological University (note: now known as University of Central Florida) at Orlando, Florida, where Steve is stationed until June. They will be moving periodically as he continues with his course work in nuclear physics, but they both are determined that she will take courses wherever and whenever possible so that she can complete her degree in Accountancy. She has maintained a B average in her college work this far, which is great, we feel. We are extremely proud of her, and very happy over her choice of a lifetime partner. From the beginning, Steve has accepted her as she is, hearing aids and all, and they seem to have what it takes to make a successful marriage. He calls her his "bionic woman." So, that is my twelfth report on Laurie, a grown-up correspondence course graduate. If I can find a copy of a newspaper report written about her a couple years ago, I will enclose it. (note: I have a copy of this newspaper article and will try to find a way to post it if I can.)

As I said, Doug is another story - but his growing up years have also been interesting and rewarding. Because he had more hearing during the first few years than Laurie, he developed better language patterns. However, the progressive nature of his hearing loss has made things hard for him in some ways. It was a while before he would accept a hearing aid (now he depends on them, of course) and he never did become as adept a lip-reader as she did. Perhaps it was because he didn't need as much, perhaps it was just his nature. He was never as eager to sit down with me and do the kinds of things which were helpful to Laurie; however, he was just as alert, curious, and eager to learn, and one way or another, he learned. He is a good student, particularly interested in math, and was one of his class accepted into the advanced math program (algebra) this year in eighth grade. His hearing difficulties are frustrating to him at times, but fortunately he developed a good sense of humor along the way and manages to take things pretty much in stride.

Sincerely,

Elizabeth T. Royer