Ingrao: Good morning Emilie. Thank you for taking time out of your busy schedule to talk with the readers of HealthyHearing.
Quast: Hi. Brad. Healthy Hearing is one of the internet sites I keep bookmarked, and I refer other to your site often and direct them to your very useful archive. I'm flattered to be asked to contribute.
Ingrao: Before we talk about the Beyond-Hearing on-line community, can you give us some brief background on your hearing loss?
Quast: There's a genetic factor operating in there but we don't have "inherited" deafness per se. Everyone on my father's side of the family is born with good hearing. Some of us apparently have a condition that leads infections to settle in our ears. I'm not sure if that is a too narrow eustacian tube or what. When you set up hearing loss on the family tree, you see a classic dominant gene pattern.
I had frequent ear aches as a preschooler--every kid's cold went in there. At the time, the only remedy was to drip warm oil in the ear to try and equalize the pressure (by the way, it never worked). By the time I was out of that age, I apparently had quite a lot of scar tissue built up in my ear. When I got mumps at age 15, that infection also went into my ear, which resulted in mild hearing loss. I was still able to easily use the phone and still played several instruments, but there was lower perception of sound. All violins sounded like squalling cats, for example. I got around that by playing string bass and piano.
My hearing stayed stable until I got a cold when I was 27. That turned into an infection which settled in my ear and burned out lots of cilia resulting in profound deafness. Profound deafness has progressed with time and age and I'm now totally deaf for all intents and purposes.
Ingrao: A little birdie told me that you were one of the 33rd CI recipient in the state of Minnesota. How did that all unfold?
Quast: About 10 years after I lost most of my hearing, my audiologist, Gloria Gross, audiologist for the Hearing Society of Minneapolis, was trying to find a hearing aid that would give me some sound to work with.
With a hearing family including two young children and lots of community involvement in my life, moving into the culturally Deaf world was just not an option--even if I had known about it, which I did not. I was a Den Leader for Cub Scouts and Webelos, a Brownie Troop helper, involved in my church, pitching in when they needed extra hands at the elementary school, just like everyone else. There wasn't time or opportunity to do anything but hear what I could and guess at the rest.
In 1988, hearing assistance technology was a very small number of options. Hearing aids were all analog, I believe, and basically just amplifiers. Gloria and I were trying to find something that would help more with sounds in the human voice range instead of just amplifying mechanical sounds (which I could still hear pretty well). Gloria had been an audiologist at the ENT Clinic of the University of Minnesota Hospitals and Clinics, and had attended seminars at the U introducing this new generation of hearing assistance called the cochlear implant. When she looked at my hearing loss profile, I was a match. She recommended I try for it. I totally failed the hearing tests they gave and that made me a candidate. With help from the Cochlear Corporation, my insurance company was persuaded this no longer an experimental program and they agreed to help us with the expense. I was implanted December 27, 1989.
I should point out that I tried my CI for 18 months and hated it. I absolutely could not make any sense of the sound I was getting. I put my CI in the drawer and continued to (mal)function with a hearing aid in the other ear, with continued diminishing hearing ability for another four years. At that point, even I had to agree that the HA was not giving me anything. Id put the CI away feeling it was not right for me at that time, but believing that eventually it would be my last shot at staying in my world. When I got it out or the drawer and had it remapped, the sound I was getting started to make sense.
About a year and a half after trying the CI again, my HA needed a good cleaning. I took my HA in and actually forgot to pick it up. The clinic finally sent me a thank you note for my "donation" At that point I was definitely functioning with my CI.
It took another several years before I began to approach "normal" hearing. I still recall the first birdsong I recognized; they were meadowlarks. That was the first music I'd heard in over 20 years. I stood transfixed and just listened and listened and listened.
The point of all that is learning to use a CI is truly learning. You are training nerves to respond in a certain way--perhaps in a way they've not had to respond in years. Like any other human act, it gets better with practice and repetition. I'm still regularly recognizing "new" sounds 17 years after the implant. Just this year I have noticed a new level of music awareness. With all that piano, choir, band and orchestra music in my background, I still have more music in my memory than I'll ever get again from my ears, but being able to recognize an old familiar song is a wonderful "welcome back" event.
Ingrao: Can we shift gears to the Internet? You and I first met as subscribers to the Beyond-Hearing listserv. Can you summarize the history of that list and tell us where it is today?
Quast: Beyond-Hearing was started by Dr. Miriam Clifford as a listserv on the Duke University computer system. There were few places on the internet or anywhere else that focused on life "beyond hearing" for people who were late deafened. Meeting Mimi at a convention, Dana Mulvany mentioned the possibilities of group internet communication to Mimi, who took the idea home and created Beyond Hearing.
In Mimi's words, the list's immediate goal was to appeal to "People who have some degree of hearing loss from mild to total deafness, but are trying to maximize their ability to continue with spoken language as their primary form of communication. Some subscribers are friends or family of people with hearing loss. Other subscribers are professionals willing to share their experience with others."
Years down the road, Mimi was ready to hand the list off and asked me to take over the moderator's role, which I did over the holiday weekend, 12/03-01/04. We moved B-H from Duke to Yahoo, losing a few members, of course. After the move was completed, I think we had about 125 people with us. This morning we have over 325, so there has been steady growth.
The best part of B-H is the members. We have no "panel of experts" pronouncing from some lofty level somewhere. What we have is a fine group of people who are willing to take the time to share experiences, to ask questions, to poke about for new discoveries and to share all that with the rest of us. The combined level of experience, training and research among members of that list is awesome!
Better yet, with time and effort, people on B-H become friends. After all, what is a friend besides someone you can count on? The members of B-H are always there for each other, working on solving hearing problems for each other. Several years ago, one of our original members, Iz Cohen, hit on the idea of adding a B-H sticker to people's name tags at the SHHH (now HLAA) so attendees could spot each other in the crowd at the national convention.
People who want to join us can look at our support page for complete instructions, whether they have a Yahoo ID, want a Yahoo ID, or don't want to mess with Yahoo and just want an email subscription.
Ingrao: Beyond-Hearing is certainly much more than an e-mail list. Thank you so much for your time Emilie. As a long-time subscriber myself, I can truly say, "I'll be seeing you Beyond-Hearing!"
Quast: Brad, I'll be looking for you there. Take care!
