Journey Out of Silence
I Danced: A Cochlear Implant Odyssey
ISBN 1-59298-087-2 Beavers Pond Press
Beck: Hi Dora. Thanks for meeting with me today. I would like to start by explaining that you have a cochlear implant on each side, and you have written two books about your life and experienceswhich makes you one of a very few people on the planet to have these unique experiences!
Weber: Thanks Doug. Its nice to be with you. I appreciate the opportunity to discuss my experiences with hearing loss and with my cochlear implants.
Beck: Can you tell me a little about the origin of your hearing loss?
Weber: Yes. I have otosclerosis, as did my mother, my father and a few of my siblings too, so we certainly have a family trend!
Beck: Some people might be surprised to learn that otosclerosis was your pre-implant diagnosis, as they might think of otosclerosis as a middle ear disorder only. But in advanced cases, it has been the reason many people have gone on to get extremely powerful hearing aids and cochlear implants too.
Weber: Youre exactly right. I had surgeries to mobilize both of my stapes, and I had an attempted fenestration in 1962, which was aborted because I had too much calcification.
Beck: I should mention that fenestration was a reasonably common surgical option for otosclerosis back in the 1960s, and the goal was to create a window through which sound would travelbut that procedure was discontinued many years ago as other less invasive procedures came along, which more effectively managed the hearing loss secondary to otosclerosis.
Weber: And after the attempted fenestration procedure, I had two stapedectomies in the 1970s. The left procedure was successful, and the procedure on the right was not successful. I continued to wear hearing aids throughout most of my adult lifein other words, after the successful operations, I could hear for a while, but in time, the hearing would go away, and so hearing aids were always a part of my life as an adult. After the last successful stapedectomy, the hearing in that ear went all the way down to nothing. They attempted another stapedectomy, but by that time otosclerosis had invaded my cochlea, and nothing could be done.
Beck: And then you had your first cochlear implant?
Weber: Yes, I had my first cochlear implant in 1996. The doctor was not sure they would be able to implant the whole electrode because of my otosclerosis. He reported he had a difficult time inserting the electrode, but he was able to finally insert the electrode in the cochlea, and I had a full insertion of the electrode. However the audiologist wound up deactivating 12 electrodes, because I was getting facial nerve stimulation and I was getting dizzy every time they delivered sound through the cochlear implant. So the first five electrodes were fine, and then we had 12 bad ones, and then the last five were fine. It was a very exciting and interesting experience.
Beck: Dora, how did things sound with only ten electrodes working?
Weber: The sound was fantastic. My husbands voice sounded exactly as I remembered it. I loved the sound. I heard beautifully, just like I had ten years earlier.
Beck: And then you had a second cochlear implant?
Weber: Yes. Three years after receiving the first device, my hearing started to get worse again and fortunately, the Nucleus 24 Contour by Cochlear had just come out. I told the audiologist I wanted a second implant. Im not sure what I was thinking - but I spoke to my audiologist and my ear doctor, and I decided to go for it. The insurance company agreed to pay for a second cochlear implant on the other side, and so I received bilateral cochlear implants, and I have had two implants as of January, 2001.
Beck: Please tell mewhat are your observations regarding the quality of sound, and the differences between one and two cochlear implants?
Weber: Since receiving the second implant, the balance of sound is remarkably better. I can hear very well with the two implants, and the sounds are much more full and natural. The sounds mesh together, they blend and I feel like Im hearing everything! Its much better having two, hearing from both sides, and allowing my brain to make the most of the sounds available to me.
Beck: I wish we could spend hours and hours and pages and pages exploring your experiences, but youve already done that in the two books you wrotewhich leads me to askWhat inspired you to write two books, and how long did it take?
Weber: Well, the first book, Journey Out of Silence, took about nine months to write. The second book, I Danced, took about 18 months to write. The first book was easier to write for me, because the first book was from my heart and I really wanted to encourage others to obtain cochlear implants, and to explain to people what iot was like to be deaf. The second book was written to explore my experience with a second implant, and to encourage others to seek solutions, despite roadblocks along the way. I certainly had my ups and downs with cochlear implants, and it took patience and perseverance, but it was worth the time and effort and it was quite interesting because in the long run, the sound got better and better as they did a better job mapping the implants to work together and as I learned to listen again, through two ears.
Beck: And if I recall from the book, you had to have one of the implants repositioned?
Weber: Yes. My cochlear implant receiver migrated in close proximity to my pinna, and so in October of 2003, I had to have my cochlear implant receiver repositioned, and since that time, my hearing has just been excellent.
Beck: Dora, it is delightful speaking with you. Thanks so much for sharing your thoughts and for writing your two books! You have a tremendous story to tell, and your dedication to getting the word out is simply amazing! Your books reveal a compassionate and interesting story, and through those books you share many wonderful and touching moments about your family and friends. Thanks again for your time today.
Weber: Thanks Doug. Its nice to be with you too.
Journey Out of Silence