Last Modified: July 13, 2003

My Invisible Disability

Since many people believe the proper way to respond to someone with a hearing loss is to speak loudly, I decided the first thing I must do at this site is explain why this does NOT work.

Imagine that you are tuning your radio and it's between two stations.   Do you tune your radio or increase the volume to hear the radio better? Speaking loudly is equivalent to turning up the volume on a badly tuned radio. In an ideal world, we could "tune" my hearing but in reality, the proper response is for everyone to speak slowly, face me, and not cover their mouths while speaking. I have a 35%-40% hearing loss with total deafness in high frequencies. This includes sounds in human speech such as "s", "sh", "z" and far too many others to list. Thus, I find it almost impossible to understand random words and have great difficulty when a speaker is using words that (to me) sound very similar to other words.  

Although I can use a telephone quite effectively to call the local pizza restaurant and place an order for a medium, hand-tossed veggie pizza; I may become completely lost if the person at the other end of the line asks an unexpected question like, "Are you David's mother?" This actually happened once and I think my reply was, "No thank you, just a medium veggie pizza." Uncertain what she had asked and to embarassed to ask her to repeat it, I simply assumed she had asked me if I wanted an additional food selection.  

When I become accustomed to someone's voice and manner of speaking, it becomes much easier for me to follow a conversation because I have a mental matrix which sorts through incoming sounds, catalogs them, references them to previous sounds made by the same source, considers possible words which might fit within the context of the sentence based upon previous word choices, and tries to make a rational sentence out of the sounds heard. I know this sounds complicated but the human brain is capable of far more complex calculations. You'll notice a few seconds lag time occasionally when talking to me and this is the reason why. I haven't yet figured out what you said and I'm still trying to sort through it.   If I ask you to repeat what you just said, please don't use the same words. Rephrasing your sentence will allow me to take two sentences of sounds, sort through the garbled part, and piece together a coherent thought. Repeating exactly what you said, even if you say it slower, will just give me the same words that I misunderstood before and thus probably require me to either ask you to repeat your statement again or lead me to give up and try to bluff my way through the conversations. I don't remember the sound of birds singing and bells ringing. These sounds are beyond my normal hearing range. I also don't hear well enough to appreciate most musical performances and can never distinguish the lyrics from the instrumental portion of a performance. It's all one sound to me. I hear mono, not stereo, and only very expensive stereo equipment with headphones can provide the enhancements necessary to appreciate music. My hearing aids alone are insufficient.

My Hearing History

I was born with normal hearing and talked quite well until I was stricken with Scarlet Fever at age three. Back in the fifties, Scarlet Fever was still dangerous but in my case we don't know if it was the illness or the drug given to cure my illness that caused my hearing loss. My mother also had normal hearing but became completely deaf after receiving the same medication I received for Scarlet Fever. As usage of this drug resulted in neuro-senso hearing loss among a statistically significant portion of the population, it is now rarely used.

When I was about ten, my father said that if I said "Huh?" one more time, he was buying me a hearing aid. I didn't quite grasp what he said so I said, "Huh?". I never had a headache or earache before receiving these hearing aids. Kids in school made fun of me. Teachers who already didn't want me in their classes (because they didn't know how to deal with a student who wasn't "normal") became even more relunctant to address me and I slipped behind my wall of invisibility and became even more shy and withdrawn from society. Since ours was a small rural school without special services, my parents made arrangements to send me to Ball State university two afternoons a week during the summer to work with a speech therapist. This is when the source of my earaches and headaches became obvious. The hearing aid was making my hearing loss worsen and I should discard them.

My particular type of loss could not be corrected with existing technology. All sounds were boosted, inclluding the sounds I could near normally and thus this was having a negative effect upon my hearing. Many long years and one hnusband later, I discovered technology had advanced to the point where very expensive hearing aids would partially correct my loss. Unfortunately, my husband had problems beyond his ability to resolve and these problems contributed to financial insolvency. When I discovered the state would provide me with one set of hearing aids as part of "rehabilation", my husband refused to allow me to accept that kind of "charity".

As you can probably expect, this occurred not too many years before our divorce and was only one symptom among many that our marriage was doomed. Accidents occurred to the hearing aids before he left but they were still mostly operational when he finally ordered me to file for divorce. The hearing aids failed shortly thereafter and I did not have the funds with which to replace them. After changing jobs, completing college, and remarrying, I acquired new hearing aids and yes, they were very expensive.

The Starkey hearing aids work very well. They're flesh-colored in-your-ear aids that are far superior to the last set I owned. I don't always wear them and never wear them when working outside or jogging but you can easily tell when I've just removed them or just put them on. The pitch of my voice and the degree of loudness/softness with which I speak changes dramatically. I expect to buy another set within a couple of years as technology has improved and nothing lasts forever. Additionally, my hearing loss is progressive. I do not know how rapidly I will become deaf but I do know it's important to safeguard my health and wear ear protectors whenever necessary. In the meantime, don't expect to have a telephone conversation with me unless you're prepared for responses that have nothing to do with the statement you just made.

I prefer FAXes and e-mail even if it is a little more time-consuming becasue otherwise misinterpetations occur that are frequently extremely embarassing to me. I'm already a shy and withdrawn person around people I don't know well and making conversational mistakes really makes me feel like the village idiot.

With all due respect to Alexander Graham Bell, I really don't like telephones.