My Father’s Story” — a personal essay from Dr. Goodman
Much of the information I’ve learned about my dad has come from my wonderful grandmother and some from my father, himself. My father’s hearing loss was not discovered until he was 3 years old. My grandmother said she realized something was wrong as he was not talking at all. The doctor told my grandmother her son heard nothing at all in his right ear and had a very severe hearing loss in his left ear. He explained it would be very difficult for him to learn to speak or to understand others. My grandmother was advised to send her son away to an institution so that he could learn to speak and communicate with others. She refused to listen and took it upon herself to get her son the very best instruction she could find. She hired a speech pathologist (then called a speech teacher) twice a week to work with her son. As there were no hearing aids at that time, the speech pathologist used a speaking tube and visual and tactile cues to teach my father to speak. My grandmother also hired an elementary school teacher (who was unable to find work in a school) to live with them and tutor my dad. She stayed with them for eight years, followed by another tutor who came to live with them for an additional six years.
The first teacher home-schooled my dad until he was ready for seventh grade, where upon he went to public school full-time. My grandparents paid for him to go to a public school in a suburb of Philadelphia where the class size was very small even though they were zoned for the city of Philadelphia. The Americans with Disabilities Act (ADA) did not exist at that time and remedial help was not available for those with special needs. My dad was often humiliated by teachers and teased by fellow students, as they were ignorant about communicating with someone who could not hear. There was no tolerance for people who were different.
My grandmother’s family, though large, was very close and they often gathered for family functions. My father’s cousins grew to be his friends. At 12 years old, my dad was able to go to overnight camp for eight weeks, and at 13 he became a Bar Mitzvah. My grandfather was a very religious man and it was important to him that his son read from the Torah. Imagine trying to learn another language without being able to hear it. He accomplished all this without a hearing aid—truly an amazing accomplishment!
Only after his Bar Mitzvah did he receive his first hearing aid. It was a large device with a huge battery, which he placed in his back pocket. He remembered that it could pick up sounds but that he could not understand any speech without watching someone’s lips. However, it opened up his world to sound and he loved it!
My dad then completed high school and went on to college for two years. He found it most difficult as he could not watch the professor’s lips and take notes at the same time. He had managed to remember all the information in high school without notes but in college, the lectures were lengthier, his classmates offered no assistance, and his teachers were unwilling to share their notes.
Subsequently, my dad went to work in his father’s business and became a very successful businessman. He married my mother and had 3 children. When I was in Junior High School my father developed Meniere’s disease. I remember him being hospitalized often, sometimes 3 days at a time, with vertigo and roaring tinnitus. He had numerous surgeries on his poorer ear over the years. At that time, they were doing “exploratory surgery of the inner ear” without success. When I was in Senior High School they operated on my father’s good ear and he lost everything he had—no more sound awareness!
My father continued to wear a body-style instrument even after the surgery. There has never been enough power in even the strongest behind-the-ear style hearing aid to benefit my dad. For the past 30 years he has worn the most powerful body aid ever made. It has 157dBHL output (140dBHL is the pain level). My father has worn this instrument to feel sound. I once asked him why he wore it because I knew he could neither hear nor understand speech. He simply replied, “Because without it, my world is dead.”
Over the past 10 years I have looked into cochlear implants. My colleagues informed me my dad was not a candidate. Last September, I tested my dad’s hearing and he did not respond to 120dBHL (the limits of sound on the audiometer). He did not even feel the sound as he had in the past. He was extremely upset and I was as well. He was not even sensing any vibration from his body aid. I was desperate to help my father.
I have devoted my entire life to helping those with hearing loss and educating the general public about hearing care. This is what I do. And now, the man who has inspired me was in need of my help, and I felt helpless. For the past 8 years, I have been chairperson of a national consumer hearing awareness campaign led by national Audiology organizations (the Audiology Awareness Campaign—www.audiologyawareness.com) and have been most fortunate to work with an outstanding group of Audiologists. One of the Audiologists on our board of directors, Dr. Alice Holmes, specializes in cochlear implants. She is an expert at programming cochlear implants and the follow-up counseling. I consulted with my friend and colleague about my father and she gave us reason to hope. I flew to Ft. Lauderdale and then drove with my dad to Gainesville for a consultation with Dr. Holmes and the surgeon, Dr. Patrick Antonelli, an excellent surgeon and a compassionate human being.
After many tests, including a CAT scan and MRI, and then consulting with his cardiologist and endocrinologist (my dad has insulin dependent diabetes), it was decided that my father was a possible candidate for the surgery. His right cochlea was totally malformed and his left cochlea was extremely small. Dr. Antonelli felt he might be able to place 10 of the 24 electrodes in the cochlea. My dad’s expectations were very low. He felt that if he could just feel sound like he had with his hearing aid, it would be a success for him. I was much more hopeful. However, I also felt much pressure from my two brothers, who were quite concerned that the surgery would be too dangerous for my dad given his diabetes, heart condition, and age (75 years old). They worried that the risk from the anesthesia might be too great, yet they entrusted me to make the final decision. I felt an enormous burden of responsibility.
My dad was scheduled for cochlear implant surgery on Tuesday, June 23, 2002. We spent the entire day in the hospital from 10:30 a.m. until 11:30 p.m. It was a 2-½ hour surgery with 5 ½ hours in recovery. Fortunately, the surgeon was successful in placing all of the 24 electrodes in my father’s cochlea.
Prior to his operation my dad gave me a great gift. Before he was given the anesthesia I told him I loved him. He replied, “Thank you so much, Kathy. Thank you for arranging all of this. Thank you—thank you—thank you!”
I then realized that my father understood the tremendous responsibility that I had been carrying. He wanted me to know, in his own way, that the surgery was his choice and that I should not feel any guilt should something go wrong. I felt a tremendous sense of love for my dad and a great relief.
I was informed I could not see my dad in recovery until he was awake. This hospital rule made no sense to me. I felt that when a person awakens from anesthesia it would be much more comforting to see a loved one than a stranger; however, this was not the case. I was told that recovery was only one hour, but after calling several times during the following three hours and being told he was still asleep, I finally insisted on seeing my dad.
When I arrived there, he was already awake and crying out my name in agony. He said if he had known how much pain it was going to be he would never have gone through with it. I immediately asked one of the nurses to give my father something for his pain. She told me they already gave him morphine. I explained, “It’s apparently not working! Please give him something else!”
The nurse ignored me. After several nurses walked by, I lost my patience and screamed out that someone do something to relieve my father of his suffering. It worked. They gave him tylox and after an hour, he started to feel its effects. One of my brothers arrived shortly thereafter and as our father was still in extreme pain, we tried to have him admitted, but were told that his diagnosis code for Medicare would not cover the cost for a night in the hospital. Cochlear implants and diabetes do not entitle one to stay overnight.
But, my father could hardly move! We waited another three hours and were finally able to move him into a wheelchair. Together, we practically carried him up to a hotel room. He was sick the entire night and the following day from the anesthesia but we still managed to drive six and a half hours back to Ft. Lauderdale that afternoon. We had arranged for a nurse to stay with my dad for two weeks.
Six weeks after the surgery, I flew once again to Ft. Lauderdale. My dad and I drove back to Gainesville to meet with Dr. Holmes, who would turn on and program the cochlear implant (CI). Initially my dad seemed nervous and apprehensive as he thought the procedure would be painful. But when Dr. Holmes simply placed the processor on his head, he was shocked and pleasantly surprised. My dad then listened to tones of different pitches. Once the speech processor was programmed and turned on, my father said, “What was that?”
I was unzipping my purse! He heard it! It was amazing! For the first time in his life he could hear his own footsteps and could make out garbled voices. The first day he was unable to understand any words without lipreading. The following day my dad was seen for reprogramming. When given a choice of two words at a time, he was now able to identify words without lipreading with 70% accuracy.
Once we returned to my dad’s apartment I was busy making different noises so my dad could try to associate the sounds. He was able to hear soft sounds, even a microwave beep. It was truly a miracle! My father can now hear and monitor the volume of his voice. Prior to the implant this was impossible. Imagine not being able to hear your own voice and not knowing how loud you are speaking when you are in noisy or quiet situations. There were both frustrating and embarrassing moments for him as he tried to adjust his own voice to adapt into many different surroundings.
We went out for supper to a noisy restaurant where my father said he could hear me talking but could also hear people at the other tables. He wanted to know what they were saying. He couldn’t believe that even I didn’t understand what was being said at the next table. When I related that to him he asked me to program his speech processor so it shut out all the background noise and only amplified my voice. I told him I wished I could do that.
I explained that most hearing aid users would love to zoom in and hear only the speaker of their choice without background noise, which unfortunately is not currently possible. I did, however, reassure my dad that the brain is a marvelous mechanism. With time, just as with hearing aid use, the brain learns to tune out extraneous noise and focuses on speech. In the case of cochlear implants, the brain will recognize sounds and speech, and what seemed artificial at the beginning becomes quite natural in time. He would just need to have patience.
It is now one month since my father has discovered a whole new world of sound. He came up to Philly to spend the holidays with his family. I was sitting next to him in the synagogue on the first day of Rosh Hashanah. The cantor was facing the ark (away from the congregation) during one of the prayers when my father started to cry.
“What’s the matter, Dad?” I asked.
“I hear the cantor singing! He has a magnificent voice. I never heard the cantor sing before. I’m completely overwhelmed!”
I had tears in my eyes and was filled with emotion. I couldn’t believe it. It was truly wonderful! I realized how most of us take our hearing for granted and don’t appreciate just how lucky we are to be able to hear.
My father is my hero. Not only for what he has recently undergone, but also more importantly for his life accomplishments. His attitude throughout his life has been incredibly positive and he views each set-back as a challenge. He has never allowed himself any sympathy nor would he allow others to pity him. His story is unique. His life is successful. And his example is inspirational. He is my father.
Dr. Kathy Landau Goodman, Audiologist, is Founder and President of Main Line Audiology Consultants, PC of Narberth, PA. with five office locations in the Philadelphia area. She is Director of Audiology at our office in Ridley Park, PA and audiological consultant to the U.S. Department of Labor. Dr. Landau Goodman has served on Boards of Directors at the national and state levels in her field. She has published numerous articles and presented many papers at national audiology conventions and given lectures to area consumer groups.
Cyrus Landau 10-18-26 to 7-25-09
Contributions in his memory may be made to the
Cyrus Landau Hearing Research Fund
916 Montgomery Avenue
Narberth, PA 19072