Lipreading Mom

Inside a typical human ear

I met Janet at a presentation I gave this summer in Kansas City. The speaking topic was “How to Thrive with a Hearing Loss.” While I expected attendees to have a basic understanding of hearing loss and deafness, I wasn’t prepared to meet someone who had as many years of personal experience as Janet did. When we spoke, I was moved by Janet’s resiliency and courage. Here is her story.

Lipreading Mom: What caused your deafness? You also mentioned having other medical issues as a child; would you please share more about them?

Janet: I was born in 1957 with congenital atresia and cleft palate. No ear canals in both ears. At the age of six, I started wearing a bone conduction hearing aid. First time for me to hear!

The doctors fitted me with an ear hearing aid, and I wore that between the ages of three and six; I didn’t hear anything of course. Meanwhile, I went to a preschool for the deaf to learn lipreading.

I started public school in the first grade. For years, I had speech therapy at the elementary school. My cleft palate was a split uvula and a high roof in my mouth. Until I was 13, I wore a speech bulb connected to a roof plate with a hook on both sides around my teeth. The bulb was very awkward to put into my throat.

At 13, I had surgery to have the uvula made into one flap. More speech therapy to relearn how to say the different sounds more correctly. Such sounds are sh, k, g, j, r, and q. I am still conscious about the sounds today. But I know that I can be understood.

When I was 29 years old, I had surgery on my right ear to add a manmade ear canal and eardrum. Supposedly, it was to make me hear normally. No luck. But, the doctors tried to fit an air hearing aid with an ear mold. After several trials and errors, the ear mold could never be shaped right to fit in my ear, so I had to continue to wear the bone conduction hearing aid. In 2007, my audiologist and I agreed to try the air hearing aid. After several trials and errors, the ear mold fit into my ear like a miracle!

What was it like growing up with deafness?

I didn’t accept my handicaps well. The children would make fun of my talking. They would stare at me, as the bone conduction hearing aid headband wasn’t easy to cover with my hair. The headband had an oscillator on one side to put pressure behind the ear. On top of the mastoid bone was where the sound came from the oscillator. The long cord from the oscillator was along my neck, then under my arm to the middle of my chest. The device had a little box that would sit inside a pocket of the ”bra” that my older sister had made for me. (This was before my body had matured.)

Who inspired you most growing up?

Without hesitation…Helen Keller! I have an article about her in my scrapbook. I wish I could’ve seen her in person.

How has having deafness impacted your work life?

I don’t know if this is the answer you are expecting. But I have to use a BOOM alarm system to wake me in the mornings. The lamp blinks off and on, the vibrator vibrates under my pillow, and the alarm sounds off and on. The sound is set so loud that it would hurt a normal hearing person’s ear. The BOOM box sits on the headboard shelf less than a foot from my head.

How do you enjoy spending your free time?

I ride my bicycle around. I used to listen to my grandmother play church songs on her piano. Religious music is my favorite. I love nature and wild animals because they are God’s creations.

Readers—Do you have any comments or questions for Janet? If you post them below, I will be happy to share with her.