Sweet Sounds to My Ear

My parents couldn't understand why I didn't talk much when I was a little girl, it wasn't until I was enrolled in school, that I  was diagnosed with a hearing loss, the Doctors believe I was born with congenital total deafness in my left ear, and partial deafness in my right ear. Not like today's technologies, they now can detect deafness from as young as a few days old.  At the age of 6 years old I was fitted with my first hearing aid. My parents was initially told that due to my hearing loss, I could potentially lag years behind my classmates. However, I overcame the odds, performing competitively in school. I graduated 3rd in my senior class. I took on leadership roles early in life, something I have continued to do, until my recent total loss of hearing. I dedicate a significant percentage of my free time to my community and charitable activities.  I have maintained leadership responsibilities, for example, through many veterans associations. I attended University of Southern Colorado for a year after I graduated from high school, and later got married and moved to Janesville from Colorado.

 

   Until 5 years ago, I have adapted to this condition fairly well with the combination of my hearing aid and lip-reading. During my work tenure in the automotive industry over the past 12 years, however, my hearing progressively was deteriorating. In January 2007, I experienced a significant hearing loss in my right ear (the ear with the hearing aid).  I awakened one morning to what would be my worst nightmare in life, and couldn't hear normal sounds at all.  Instead, I experienced random sensations of noise, which resulted in considerable discomfort with my ears and head, exhibiting debilitating and vibrating sensation. I took immediate action, and arranged to see my audiologist that day to which I had to have my husband call for me since I could not longer hear on the telephone.  My doctor indicated that he didn't notice any particular damage or pathology in my ears. He said, “If the hearing doesn't return in a few days, call UW-Madison and arrange to see the specialist.” After a few days, some hearing returned, but not approximating what I had prior to this catastrophic loss.  This hearing loss with some return of partial hearing recurred on several occasions.  After the latest recurrence, my hearing never came back at all, so I arranged for my Dr.’s nurse to call the specialist at UW to make the appointment, since I no longer could hear well enough to use the telephone. 

 

   I finally saw the specialist on April 02, 2007, one day before my 42nd birthday.  I had to wait 2 and a half months for an appointment with him, despite being advised by my sister (an Internal Medicine Specialist in California ) and her ENT physician colleague, that any delay in rapid diagnosis and treatment could result in permanent hearing loss.  After examining me, the specialist stated that I was a perfect candidate for Cochlear Implant, which would be the appropriate treatment for me.  My only down fall was, my present insurance doesn't cover Cochlear Implants. He said he still had to send paper work to my insurance to see if they would cover it, I was notified 2 weeks late via-email that it was not a covered benefit. Next was months of filing appeals with my insurance which later gotten denied, not once but twice. The cost of the implant was near around $70,000!! I contacted my benefit representative that if the other insurances through my work place covered Implants. He said he knew one of the other didn't cover and possibly the third one may cover it. So he sent a letter to the insurance to see if it was a covered benefit. Two weeks later I was notified that it is a covered benefit. I had to wait till the first of the next month to change my insurance, at this time it has been 6 months.

 

   It has affected my life adversely in many ways, and has resulted in the most difficult six months of my life.  Consequently, I have become very depressed.  I could no longer communicate either by phone, or in person.  I can try to lip-read, but this doesn’t work effectively with everyone I encounter.  I had come to the point where I would try to avoid people because I want to save myself frustration of ineffectively trying to communicate, over and over again, that I can't hear. I’ve maintained an active involvement with many veterans’ organizations and I was the Chairperson of one of the organization and Administrator of another.  Trying to run a meeting had proven to be a disaster; I came to point of resigning from one of my vet’s organization and putting the others on hold. It broke my heart and spirit.  I don't want to loose the activities of my life that I love doing. I have overcome many obstacles in my life, despite being hearing impaired, and have been a motivator to many people.  Previously, partial deafness has not kept me from doing what I am effective at doing (and hence, enjoy).  My condition, however, had gotten so bad, that I couldn’t communicate at all! I don’t like to depend on other people to communicate for me. I lost my independence.   Every time you hear your phone ring, recall that I could longer can hear or answer mine.  Every time I need to make an appointment or handle matters normally requiring verbal communication, I had to rely on husband, children or friends to do it for me. There have been many days when I just withdraw and cry.  I couldn’t even go to a movie or listen to music anymore. Loosing my remaining hearing had taken a lot of things away from me. I am overwhelmed because the specialist said that I don’t have to be disabled like this.  I know these problems be mitigated to a considerable extent, if I were to have a Cochlear Implant done. I missed not being able to mingle in with group of friends and families events. Seeing everyone laughing made me cry inside.  I was fortunate at times, when some of my friends and families would take the time to tell me what was going on.  But it wasn’t the same.

 

What was next?  Next leads to long months of appointments for testing, to which they were still not 100% sure it the implant was the next step till all the tests were completed. Finally in September I received the good news, my entire test came back good. On December 11th I received my cochlear implant. I had to wait 6 weeks before the processor could be turned on, been over a year since this all began.  January 24th, my daughter met me at my appointment at UW.  The processor was turned on for the first time. I wasn’t sure what to think at first, so much noise, voices were so mimic. Like hearing the chipmunks! Then I was given a sentence test, without looking at the audiologists mouth. I had gotten a hundred percent! I looked at my daughter, she started to cry, I cried!!! Tears of joy were over whelming. I was told as time goes by it would get better.  Upon returning home, both my son and husband couldn’t wait to call me. I could hear them, but it took me a few weeks to adjust. I was told music wouldn’t be the same, but to me it is. I have gone back for adjustments, only three times. Life has been so great for me. Better then ever. Everyone sounds more normal. First night I was home, I heard the furnace kick on for the first time ever. There would be times I would just sit and close my eyes and listen to the sounds around me. I heard my 4 month old twin niece and nephew cry for the first time.  I never take anything for granted. I thank god for everyday he has given me.

 

I have gotten my life back once again. Now I continue to where I left off helping out my veteran’s and community organizations. Last fall I went back to college after 24 years to complete my college degree in Social Work and Speech Communication. I have also become Trustee through my union, Co-Chair of my UAW Community Service and volunteering for Hospice, Enhancing the Quality of Life to the End of Life. Not only has the implant has given me quality of life for me, but others I service. Also I can hear on the phone once again, actually better then ever.

 

   I hope that by speaking at the hearing I can prove I am living proof that hearing aids and cochlear implants has given me quality of life not for cosmetic reasons!! Children are our greatest resources, they learn better when they are young. They have dreams like everyone else, with the help of aids and implants, it will help them improve the quality of their life and will be easier for them to pursue their dreams.

 

    I have even taken the time to do research. Providing hearing aids and cochlear implants to children has endless benefits, and there is a great deal of research that provides evidence of these benefits.  One notable research article is by Christine Yoshinaga-Itano et al. (1998), "Language of Early- and Later-Identified Children with Hearing Loss".  This article summarizes the differences in language development between children who were identified with hearing loss prior to six months of age and who were fit with amplification (hearing aids or cochlear implants), and those who were identified after six months of age and received intervention in the form of amplification later.  Essentially, the authors found that early identified children demonstrate significantly better receptive and expressive language that those identified later, and by the age of 5, hearing impaired children fit with amplification have average language scores within the normal range of children with normal hearing. 

 

 I hope my voice will be heard for those who can't hear. Please support this bill, it will make a difference a child's life!!! Give them the quality of life they deserve!!!

 

Sincerely,

Julie Spangler

 

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