Monday, March 13, 2006

Hearing Biography

Someone asked me today for a hearing bio, so I worked on some notes I had for when I was asked to speak at the local "Self Help for the Hard of Hearing" group (or "SHHH"). I figured it was worth posting here, too, since I put so much work into it. It's rather long, so read it at your leisure... :)

The woman who leads the Chicago Northshore local chapter of SHHH asked me a few months ago if I would tell my story at a chapter meeting. They meet at the local Senior Center, and I'm the only one there (usually) under the age of about 75. I’m 47. The joke is, "they let me in even though I'm underage..."

When I asked what I was supposed to talk about, she said, "Just tell your story. You have a lot of interesting things to tell about." Oookay. So, here's my basic outline, hopefully in a fairly organized fashion.

- I was born in Rochester, NY, home of the National Technical Institute for the Deaf. My older brother learned enough sign and finger spelling to be able to tutor in their Physics department while he was attending Rochester Institute for Technology. He used to practice in church, translating the sermon down on his lap.

- I have a large loving family. I am the 4th child of 6.

- I wondered about my hearing when I was in my 20's, feeling like I had to ask people to repeat themselves more often than others did. I had a few people get impatient with me. "You're just not listening carefully enough." At 28 I had a hearing test, done by a nurse in the regular doctor's office. But they said it was normal. Well, it may or may not have been. And I got pregnant, and they said to come back after that. I gave birth to identical twins in 1988.

- When my children were about 2 or 3, they would parrot things back to me that I said often. One thing they said was, "I can't hear you. You need to talk louder." Hmmm. So I went back to my regular doctor. The nurse tested me again, and they said, "well, maybe; go see the ENT specialist." He did the booth testing and said I might benefit from hearing aids and that I would benefit more from two than from one. As far as he could tell, it was not due to damage; it looks like an inherited/congenital loss that shows up in your 30’s.

- I got my first set of hearing aids on my 33rd birthday, and I was so excited I was almost in tears. I spent the first day delighting in all the sounds around me--I heard Velcro across the room! I noticed all sorts of things! The next week, however, was a nightmare of auditory overload. I had to re-learn how to sort out sounds that were important and learn to ignore what I could.

- As soon as I got hearing aids, my mom and dad went out and got hearing aids. My mom said, “I was already the oldest person on the faculty (at a small private school), I didn’t want to get hearing aids and make it more obvious. But if YOU have them, then it’s not ‘an old person thing.’”

- During this time, I went back to school to get my bachelor’s degree in early childhood education. With two small children of my own, it took me eight years, but I finally did it. I graduated from National Louis University with my first BA, with the class of 2000. I got my Illinois state teaching certificate and went to work at my children’s school, Christian Heritage Academy, as an aide in the 3-year-olds preschool class.

- Over the next 10 years, my hearing loss progressed. I got progressively stronger hearing aids, moving from in-the-ear to behind-the-ear. My hearing wasn’t really an issue in classes or even once I began working. Although I did begin to notice more often that I couldn’t hear as well if someone wasn’t facing me. But it was still very manageable.

- I taught a Sunday school class at my church and met a little girl, just barely two years old, with two hearing aids. Kimberly would come in, check to see I had my aids on, show me she had her aids on, and then go play. I got to know her and her family. They used this new thing called cued speech I’d never heard of, so I went to a workshop and learned the basics. The next day I cued a children’s worship song to her mom and dad and they started to cry. Kimberly was able to understand things like “goldfish” and “sit down.” Her mom kept telling me I should go teach at this school where Kimberly got her speech therapy, Alexander Graham Bell Montessori School. I very politely told her, “No thank you; I love my job, I have no interest in changing jobs.”

- We spent the summer of 2001 on a mini-sabbatical sort of trip to Australia, and I was highly frustrated on the phone. When we got back, I went to the audiologist, saying, “These hearing aids are driving me nuts! Send them in for repair!” He checked them out and said, “Your hearing aids are fine; let’s check your ears. So I made an appointment for a hearing test for the next day.

- That next afternoon I found out that I no longer had any response to high frequencies in my left ear. It was September 11, 2001. It was a rough day for all of us as Americans, but doubly so for me. I was literally going deaf. I came out of the audiologist’s office in a bit of shock. I got into my car and grabbed the steering wheel and worked on breathing calmly. “Ok, God, I guess you want me to go teach at AGBell.” More on that later.

- That hearing test really shook me up. In 18 months, the progression of my hearing loss had gone from a gentle slope to a cliff. And because everyone was so freaked out because of the terrorist attacks in NY, I felt like I was dealing with it in isolation. It was very difficult.

- The audiologist sent the results to my PCP, who sent me to the ENT to see if there was something going on other than an “ordinary progressive hearing loss.” The ENT didn’t find anything, but sent me to a neuro-otologist. He looked at all my tests and said the way my loss was progressing, I could very easily be a candidate for a cochlear implant within a year. That was both exciting and very frightening. I was terrified of the thought of going deaf. Also, I knew my hearing had to get “bad enough” before I would be a candidate, which meant it had to get a lot worse before I could do anything about it.

- I got my hearing tested about every six months after that; my audiologist had a policy that patients could get a free basic hearing test if they had hearing aids from them. After one, a new (young) audiologist (?) at the office asked why I wanted it so often. Upon hearing I thought I would qualify for a CI soon, she waved her hand and said, “Pft! You are nowhere near qualifying for it. I just took a class on CI’s so I really know about it.” Talk about not having any bedside manner! I was devastated.

- Somewhere in there, I visited AGBell in January of 2002. I met with the administration and observed in the classroom. Finally something was going right--I loved the place. But they said I needed to get the Montessori training to teach there.

- So, in 2002, I began my Montessori training. The main thing I noticed was that I could no longer function in a lecture class--I could not understand the teacher above all the background noise, and I could not understand the other students in a discussion. By the time I figured out who was talking, the comment would be over and someone else would be speaking, so I could never read lips. I went out into the parking lot during breaks and cried. My brain was fried on auditory overload. I called and ordered a personal FM system, and had them FedEx it to my school! The teacher wore a microphone and I wore the receiver. That helped SO much!

- Then in August I began at AGBell. It was a challenge, but I have loved it. I have been able to be a role model for the children who wear hearing aids. One little guy got tired of wearing them and decided when he turned four that big boys don’t need to wear hearing aids. So I talked to the whole class at our time on the line about how I wear hearing aids, and I’m so glad I do, because it helps me hear well enough to understand them. That (plus a few other interventions) helped this little boy decide it was ok to wear his hearing aids.

- About a year ago, I went in to my audiologist, highly frustrated with my aids, wanting to get them repaired. The regular young audiologists were not there, and an older gentleman was seeing patients. He ran quite late, and I was even more frustrated. When it was finally my turn, though, I found I really liked him. He struck me as someone who could be somebody's favorite uncle. I told him I wanted to get my aids repaired and he replied, “Why do you want to get them repaired? You should just get a cochlear implant.”

- I froze inside. Do I really want to go down that path of hope and devastating frustration again? I gave him a long hard look. Do I trust you?

- I told him my story, and he was so gentle and compassionate. His name is Larry Hable, and he has worked in the hearing aid field for 42 years. He told me that the candidacy requirements continue to change, and he thought I would very likely qualify right away. He told me the name of a doctor at one of the centers in Chicago that does CI’s, and that he highly recommended him.

- I called that doctor’s office and made an appointment for an initial consultation. I had to pay for it out-of-pocket because my HMO didn’t cover CI’s or "other prosthetic devices such as artificial limbs or wigs." (Huh?!?) The CI team approved me and I decided to see what I could do to fight the HMO.

- Fighting the HMO didn’t work, so my husband switched insurance during his emplyer's next regular benefits re-enrollment period, which meant no “pre-existing condition” penalty!!

- In the meantime, I went to an Illinois Cochlear Implant Club meeting. The speakers were the CI team from Northwestern Memorial Hospital, also in Chicago. The surgeon is Dr. Alan Micco; the audiologist is Pam Fiebig. I really enjoyed them; I found them to be very knowledgeable, professional, and yet also playful and fun to be around. I decided to have a second "initial consultation" and see what I thought.

- I loved them. Not that the other doctor wasn’t competent or nice, but I really like this team from NMH. I figure if I have to work with them a lot once I get the implant, these are the people I’d rather work with.

- Blue Cross Blue Shield of Illinois approved my surgery, and my implantation date is March 16, 2006! I have chosen the Advanced Bionics Auria HiRes Implant. I’m excited and nervous and anxious and scared and thrilled all at the same time.


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