Autobiography Chapter 3 - "Turn the Light On So I Can Hear You Better"

AUTOBIOGRAPHY CHAPTER 3 – TURN THE LIGHT ON SO I CAN HEAR YOU BETTER

by Paul Pakusch

     I started kindergarten at Barnard School in my hometown of Greece, in September of 1966.  Greece is a suburb of Rochester, New York.  I was at Barnard for about a half a year, then my family moved to a new house and I switched to Lakeshore School, also in the same school district.

     While I was at Barnard School, my kindergarten teacher, Mrs. Bender, noticed that I did not always respond to verbal discussion.  She also noticed that I was visually more observant than most of the other kids.  She suggested to my parents that I have my hearing checked.

     Mrs. Bender was right on the money.  It was determined that I have sensorineural hearing loss, more commonly known as “nerve deafness.”  In it, the ear drum is fine, but the nerve connecting the ear drum to the brain is damaged.  It’s a permanent condition which can be caused by prolonged exposure to loud noise, but in my case it’s hereditary.  My grandfather was hard of hearing, and so was my mother.  It was later determined that one of my sisters also has it and so does my daughter, Melissa.

     If you look at an audiogram of a hearing test, normal hearing would show a graph going straight across the audio frequencies.  In my case, the graph starts at near normal in the very low frequencies, dips down in the mid-range frequencies, and then curves back up in the very high frequencies.  I used to notice this with the fire station siren across the street from Mother of Sorrows School.  Every day at 12:00 noon, the whistle would blow.  The whistle would start at a very low pitch, then gradually reach a peak at a high pitch, and then come back down again.  I noticed that as the whistle cut across the frequencies, the volume would seem to drop, come back up, drop down again, and then come back up again just before the whistle stopped.

     Unfortunately for me, the mid-range frequencies are where human voices are.  What it often means is that when people are speaking, it sounds muffled to me.  Depending on the volume and clarity of the voice, I usually have difficulty understanding people that are more than three to six feet away from me.  I need to see their faces; I lip-read while I am listening to them.  I am lost if the room is dark or they are turned away from me.

     With the results of my first hearing test at about age 6, I got fitted for my first hearing aid.  Even though there was no doubt I needed one for both ears, my family could only afford one, so I got one for my right ear.  It helped, but I went way too many years wearing just one hearing aid or none at all when I should have had two.  I have no doubt that I missed out on a lot of social interaction.  In a scenario where you don’t respond to people talking to you or calling out to you, they think you are unfriendly.  I suspect I gave many people through the years the impression that I was an unfriendly person.

     My hearing aid wasn’t ready until I had switched to Lakeshore School.  The first day I wore it to school, kids started asking me what it was.  One kid grabbed at it and yanked it out of my ear, saying, “What’s this?”  I hadn’t learned how to put it back on yet, so the teacher sent me to the nurse’s office to get help putting it back in.  Right away, this led me to being very self-conscious about having a hearing aid.

     In retrospect, I don’t know why there is such a stigma attached to being hard of hearing or deaf.  Maybe it’s because if you don’t respond in the manner that people expect, they think you’re stupid.  Even today, so many people who need one are in denial, and marketing often reinforces the idea that a tiny hearing aid can be hidden.  This is so bass-ackwards!  A hearing aid should be a sign that you want to socialize with people! Not a sign that you’re stupid.  It also doesn’t help that insurance companies will not pay for hearing aids.  It’s so wrong that I can pick up a pair of $500 fashionable glasses and get an insurance discount, but I must pay $3,000 or more out of pocket for hearing aids, with no reimbursement whatsoever from my medical insurance.

     In any case, almost right from the moment I had my first hearing aid in kindergarten, I did everything I could to hide it.  Long hair for men became fashionable in the mid to late 1960’s, so it was convenient for me to follow the trend and wear my hair longer to cover my hearing aid.  If you look at all my school pictures from then through high school, that’s what you will see.  Hair long enough to cover my ears.

     I hated wearing it and often did not.  For awhile, the school nurse would come to my classroom to regularly check up on me and see that I was wearing it.  Her name was Ruth Smith.  Years later as an adult, I went back to visit Mother of Sorrows School and she was still working there.  We hugged and had a wonderful reunion!  She asked me if I remembered all those “daily visits.”  Of course I did!

     Melissa was in preschool when her hearing loss was discovered.  In retrospect, I can’t believe that it even took that long for us, or me in particular, to recognize the signs of her being hard of hearing.  Some of her language was delayed, and she often didn’t respond in a manner that one would expect.  But when the results of her first hearing test were revealed, I think Mary took it harder than I did.  Mary cried, I just sat there more or less being not surprised.

     We wasted no time in getting two hearing aids for Melissa.  As for me, in my mid 30’s, I finally grew up, saw that hiding my hearing aid was stupid, and got myself two hearing aids.  It was no longer just about me.  Now we had a daughter who needed all the help she could get.  I needed to be both a role model to Melissa, and someone who needed to do a better job advocating for himself.

     As an extremely independent person, I learned of a group called Self Help for Hard of Hearing People, or SHHH for short.  It was both a support group with ideas on how to help yourself, and a governmental advocacy group; a local chapter for a national organization.  I loved the concept of this group and started going to their monthly meetings!  It was quickly determined that I could help the Rochester chapter launch its first website.  I did, and became their webmaster for about five years.

     I learned some ideas to help myself as a hard of hearing person.  Since I worked in the TV business, I put together a PowerPoint show at one of their meetings to help them understand why closed captioning on TV sucked so badly, and what they might be able to do about it.

     In 2006, I took a course in American Sign Language at Monroe Community College.  I did well with it and started the next course as soon as that one was finished.  Unfortunately, about one week into the course, Mary had a Sudden Cardiac Arrest and I needed to drop out.  I’ve let life get in the way since then and have yet to go back to learning ASL.  I still want to learn it.  Part of my problem is that I need to immerse myself in ASL to become fluent at it, but I haven’t yet put myself into a situation where I can do that.  Maybe someday.

     In the meantime, my life is adapted to being a hard of hearing person.  I have a telephone with an amplifier and captioning on it, if needed, I have a great set of hearing aids, and I use messaging on my cell phone religiously.  Most of the time I do fine in my daily life.  Usually it’s only people with strong accents that I have a hard time understanding.

Subsequent entries to my autobiography series will be posted every Thursday morning until further notice.  If you wish to subscribe to notifications of my posts, please enter your e-mail address in the form at the right, under "Follow by e-mail."  If you wish to view previous blog posts of my autobiography, please click on the link under "blog categories" at the top right, "autobiography."