I know in my heart that my father wanted to share his experience of my life. Before I was born, my birth, and when they discovered my hidden disability as a young child, how he watched me grow and his last words. It was not found in his memoir, and he closed it with "I've had a hell of a good life considering it overall. I've had many outstanding events not mentioned in my writings. And I've had one extremely bitter experience that has taken me years to learn to deal with." I am fairly confident that the bitter experience he mentioned was the loss of his son, my brother Paul. He ended with, "First, as I've told her already, Bernice is the nicest thing that ever happened to me." Bernice was my mother, his wife of 50 years.
Let me start at the beginning; I was born Severely Deaf with Sensorineural Loss. Currently my deafness is measured as profoundly. I use the BTE, behind the ear, hearing aid in my right ear and a Cochlear Implant in my left ear. Growing up, I used the BTE model in both of my ears. Update: I recently had been outfitted with cochlear implant in my right ear and now I am a bilateral cochlear implant recipient.
I was not aware of how much I have overcome as a child and as an adult until I spoke with my audiologist. Pretty amazing.
My parents, brother and two sisters were all living in Danbury, Connecticut when the German Measles outbreak was still in its infancy state of epidemic proportion. My brother, Paul, attended the elementary school and there he had a best friend who missed a day with fever. His friend showed up after he hasn't had a fever upon waking up in the morning. This is at the point when the measles were contagious, yet no one was aware of its severity. Paul came home with it, exposed my two sisters and dad. Mom was suspicious that she may be pregnant and in those days, there were no such thing as an at-home pregnancy test and you have to schedule a visit to your general practitioner.
The doctor greeted her with a happy news that she was six-weeks pregnant, yet he observed a small spot of rash near her neck. She dismissed it as a typical rash. He explained to her that he has been seeing this on several pregnant women and wanted to have it tested for any possible thing that could affect the unborn child.
After seeing the specialist, both of my parents were called back into his office for the consultation. They were gently informed that they were exposed to Rubella or otherwise known as German Measles, and were continued to explain how this disease can hurt the unborn child. At six-weeks of pregnancy, the baby was guaranteed to be born "not normal", with several disabilities or stillborn. He urged them to "terminate" the pregnancy and gave them the blessings to abort this child. My mother dug her heels in the ground and said that she wanted four children and four children she will have. He spoke gravelly that she will give birth to a monster. Those were his exact words.
Now, if I had enough money at the time, I would have flown out to his office and wave hello. I would have told him what a monster he was to scare my parent into killing me. How awful.
After my father was promoted once again and relocated back to Chicago, IL. He moved the family to a beloved home in Western Springs, and my mother kept this dark secret of my possible disability or death upon birth.
She carried me to full term with a dark cloud over her head, knowing that she will give birth to a monster. When I was born; she counted all the fingers and toes, took a look at my face and said, "The doctor LIED. She is normal." What she didn't see was the fact that I was born severely deaf, oblivious to the noisy world I live in.
The photos that I poured over revealed my demeanor as the fact that the sisters did not know what to do with me. They weren't sure how to communicate with me. They didn't know that I was deaf. They just knew that I was somehow different.
My parents, brother and two sisters were all living in Danbury, Connecticut when the German Measles outbreak was still in its infancy state of epidemic proportion. My brother, Paul, attended the elementary school and there he had a best friend who missed a day with fever. His friend showed up after he hasn't had a fever upon waking up in the morning. This is at the point when the measles were contagious, yet no one was aware of its severity. Paul came home with it, exposed my two sisters and dad. Mom was suspicious that she may be pregnant and in those days, there were no such thing as an at-home pregnancy test and you have to schedule a visit to your general practitioner.
The doctor greeted her with a happy news that she was six-weeks pregnant, yet he observed a small spot of rash near her neck. She dismissed it as a typical rash. He explained to her that he has been seeing this on several pregnant women and wanted to have it tested for any possible thing that could affect the unborn child.
After seeing the specialist, both of my parents were called back into his office for the consultation. They were gently informed that they were exposed to Rubella or otherwise known as German Measles, and were continued to explain how this disease can hurt the unborn child. At six-weeks of pregnancy, the baby was guaranteed to be born "not normal", with several disabilities or stillborn. He urged them to "terminate" the pregnancy and gave them the blessings to abort this child. My mother dug her heels in the ground and said that she wanted four children and four children she will have. He spoke gravelly that she will give birth to a monster. Those were his exact words.
Now, if I had enough money at the time, I would have flown out to his office and wave hello. I would have told him what a monster he was to scare my parent into killing me. How awful.
After my father was promoted once again and relocated back to Chicago, IL. He moved the family to a beloved home in Western Springs, and my mother kept this dark secret of my possible disability or death upon birth.
She carried me to full term with a dark cloud over her head, knowing that she will give birth to a monster. When I was born; she counted all the fingers and toes, took a look at my face and said, "The doctor LIED. She is normal." What she didn't see was the fact that I was born severely deaf, oblivious to the noisy world I live in.
The photos that I poured over revealed my demeanor as the fact that the sisters did not know what to do with me. They weren't sure how to communicate with me. They didn't know that I was deaf. They just knew that I was somehow different.
One night, my parents had a night out with our neighbor's parents. The opportunity was available because the neighbor's mother on the wife's side offered to watch seven kids. Their three and our four kids together at the neighbor's house. I was an infant under her care for the night. The next day, the grandmother shared her observation that I may be deaf because I was oblivious to the rambunctious noise of the siblings and the neighbor's children. My mother dismissed it and believed that I was "slow" due to the delayed growth of my hair and my quiet demeanor.
By the time I was three years old, I did not pick up any auditory cues to speak or response to any sound. My sisters were jabbering, giggling, and talking, yet I was unaware of any sound. This is when my father suspected that I could be deaf. Mom's response was a shock to me, "Oh, she is just slow." Really? I was that bad? He wanted to have my hearing tested to confirm his suspicions.
I remember the day my mother, the specialist and I were in a small room. He held out a metal instrument, a tuning fork, struck his knee to vibrate the tongs and touch the top of my head. It tickled so much that I cringed as I giggled. Yep, I can't hear it but I definitely can feel that vibration! It was so strong that it causes your vision to ripple as if you threw a pebble into a calm pond.
Audiologists were unable to determine what the level of my hearing was at. The copy of the audiogram noted that it was undetermined. A year later, they were able to fit me with a hearing aid that resemble a pack of cigarette with the y-cord attached to two ear molds. I was miserable. I hated the restrictive harness that hold the silver box of a hearing aid. Tight and uncomfortable.
They didn't realize how beneficial the hearing instrument was for me. I was able to hear a lot of sounds. Some was jarring, some was strange but beautiful. The most beautiful noise I heard was coming from Paul's room. I followed the sound and found him practicing on the weird contraption. Paul heard me and looked at me with a smile. He proceeded to teach me how to say "music" and "guitar". The latter word was a challenge at first, but he pointed to the amp that was connected to his electric guitar. I knelt down and listened carefully. Twang. Twing. My eyes widened at the beautiful noise called music. He saw that I can hear it. I loved it.
Later that evening, Dad turned the TV to a popular show on PBS, "Evenings at Pop". I watched the conductor in amazement as how he controls the orchestra on a stage in front of thousands and thousands of appreciative listeners. He commands with a white baton and shakes his black shiny hair in wild abandonment. I was confused at how each of those hundreds of hundreds of musical instruments of every shape and size emits different sounds.
This piqued my interests in the musical instruments. I poured over our hardcover Encyclopedia, learning about oboes, clarinets, drums, violins, every possible instrument I see on the television in our family room. Then I learned what each of the instrument sounded like. I love learning and discovering new things.
Next blog: Language Shock
By the time I was three years old, I did not pick up any auditory cues to speak or response to any sound. My sisters were jabbering, giggling, and talking, yet I was unaware of any sound. This is when my father suspected that I could be deaf. Mom's response was a shock to me, "Oh, she is just slow." Really? I was that bad? He wanted to have my hearing tested to confirm his suspicions.
I remember the day my mother, the specialist and I were in a small room. He held out a metal instrument, a tuning fork, struck his knee to vibrate the tongs and touch the top of my head. It tickled so much that I cringed as I giggled. Yep, I can't hear it but I definitely can feel that vibration! It was so strong that it causes your vision to ripple as if you threw a pebble into a calm pond.
Audiologists were unable to determine what the level of my hearing was at. The copy of the audiogram noted that it was undetermined. A year later, they were able to fit me with a hearing aid that resemble a pack of cigarette with the y-cord attached to two ear molds. I was miserable. I hated the restrictive harness that hold the silver box of a hearing aid. Tight and uncomfortable.
They didn't realize how beneficial the hearing instrument was for me. I was able to hear a lot of sounds. Some was jarring, some was strange but beautiful. The most beautiful noise I heard was coming from Paul's room. I followed the sound and found him practicing on the weird contraption. Paul heard me and looked at me with a smile. He proceeded to teach me how to say "music" and "guitar". The latter word was a challenge at first, but he pointed to the amp that was connected to his electric guitar. I knelt down and listened carefully. Twang. Twing. My eyes widened at the beautiful noise called music. He saw that I can hear it. I loved it.
Later that evening, Dad turned the TV to a popular show on PBS, "Evenings at Pop". I watched the conductor in amazement as how he controls the orchestra on a stage in front of thousands and thousands of appreciative listeners. He commands with a white baton and shakes his black shiny hair in wild abandonment. I was confused at how each of those hundreds of hundreds of musical instruments of every shape and size emits different sounds.
This piqued my interests in the musical instruments. I poured over our hardcover Encyclopedia, learning about oboes, clarinets, drums, violins, every possible instrument I see on the television in our family room. Then I learned what each of the instrument sounded like. I love learning and discovering new things.
Next blog: Language Shock
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