ARO Conference

Here is the speech I gave at the Association of Research in Otolaryngology Conference:

My name is Denise Portis and I am a late-deafened adult. Prior to 1995, I had never heard of that phrase before, nor understood what “late-deafened” meant. Having grown up with typical hearing, I thought like many people do – one either has normal hearing, or is culturally Deaf and uses sign language.

When my children were born in 1990 and 1991, I decided to stay at home for the first few years. Like many stay-at-home moms, the telephone became my lifeline in order to talk with friends, family, or my husband. I’d call anyone and everyone… just to hear someone say something in “adult”! I noticed that as time went on, I was having more and more difficulty hearing on the telephone. At first I thought people were mumbling more, or that my own environment was too noisy with toddlers underfoot. I remember thinking “it must be the phone”, and talked my husband into getting a more expensive one. I was very concerned when the new phone didn’t “fix” the problem, and that I had to really sit and concentrate in order to hear on it.

By 1995, my husband finally talked me into getting my hearing checked. That first audiogram both enlightened us and frightened us. I did indeed have a hearing loss and the audiologist explained how even a mild hearing loss can affect a person’s life. She explained the different types of sounds one would find had “gone missing” with a mild to moderate loss. After looking at my audiogram, it suddenly made so much sense that I was having trouble with the telephone and in noisy environments. The audiologist did not recommend a hearing aid at the time, but did ask me to see my doctor to rule out any physical causes. I promised my audiologist to follow up on a yearly basis.

Over the next couple of years, I saw a dramatic difference in each audiogram. By the year 1999, the concern on my audiologist’s face finally mirrored what I was just learning to come to grips with myself. My hearing loss was progressive, and each year the changes in my hearing were more dramatic. For the first time I learned that I have what is called a sensorineural hearing loss. Like most people I would likely never know the cause. My audiologist recommended hearing aids, but I was horrified at the thought! I had never met anyone my age with hearing aids! I was so relieved that we had two pre-teens in orthodontia, and could not afford hearing aids. Before I left my audi’s office that day, she asked me to think about two things. She asked me to come back in 6 months instead of a year, and asked me if I would wear a hearing aid if she could fit me with a “refurbished” one that would be much less expensive.

Over the next few months my life dramatically changed. I found myself making excuses to not go to activities where I knew there would be more than a couple of people. I began dropping out of activities in my community, church and children’s school. If it was something I’d have trouble hearing at, it was easy to decide not to go. I was also having more trouble talking to my own family at home. Out of frustration, I went to see my audiologist again after only 2 months. She showed me a refurbished hearing aid that my hair would completely cover. She asked that I wear it for a week, and then come back to see her. The hearing aid did enable me to hear much easier, but I still had trouble in noisy environments. My life was rarely “quiet”, so the hearing aid helped, but did not FIX my hearing loss.

By the time we moved to the DC area in 2002, I had two NEW hearing aids. As my hearing loss was now in the moderate to severe range, even with aids I missed a great deal. I was forced to learn to speech read and to learn to put what I was hearing into context. Even then communication was not perfect! I remember walking out of Wal-mart one day towards my car. A group of teenage boys were walking towards me and one of them said, “SWEEEET heart!” I walked on past thinking, “Wow teens are certainly forward today!” Peeking a glance behind me, however, I saw that they were walking around a red Corvette. It hit me that they had said, “Sweet CAR!”

Speech reading is not at all accurate. Even with practice I find that I am still only making a good guess! So imagine trying to communicate when you only hear parts of words and about 30% of a sentence! Communication can be very difficult under circumstances like that. Even at home it was impossible to really understand my family unless I stopped everything and concentrated on what was being said. I couldn’t wash vegetables in the sink while talking to my daughter. I couldn’t go shoot hoops with my son and talk to him at the same time. My husband had to buy bedside lamps, so that we could talk after going to bed.

My hearing loss HAS taught me to learn to laugh at myself. Laugh or cry… I choose to laugh! After all, I very much wanted to be a good example to my kids. I knew they were very aware of the adjustments I was forced to make as my hearing worsened. I’m going to read a journal entry for you that explains a little better of how hearing loss can be frustrating and humorous at the same time.

Dec. 2002 Today I went into my favorite grocery store with my kids. After shopping we headed to the checkout line and my kid’s eyes widened with surprise and wonder. There – in the middle of the checkout lines are 3 registers that have large illuminated signs that say, “Self Check Out”.
“Mom! Scoot your cart over here! Let’s check out right here… I mean, how cool is THIS?”

Now… I have previously watched people in these check-out lines before. They enter very calm, cool and collected. They exit with hair standing on end, their groceries tossed haphazardly into their cart.

“I don’t think so kids. I’ll never be able to hear what the computer is saying, and I’ll hold up the lines just because I can’t make sense of what to do! Scoot on over to the next register with a person behind it.

“Mom! Live a little!” (Ok, I’m thinking, What? Like I’ve been dead or something up ‘til now?)

Now I should have heeded my first impression, but I swung the cart over to the “Self Check-Out” line in order to “live a little”.

I start to unload the groceries onto the conveyor belt. The belt begins to move, but then it stops and MOVES BACKWARD… bringing the groceries I had placed on it back to me.

“Hey! What’s up? Why isn’t this working?”

The kids are motioning me back and tell me to read the screen… “Please scan Preferred Customer Card.”

I scan my card and the screen immediately changes … It now says, “Thank you. Preferred Customer Card accepted!”

Then the screen changed to, “Begin scanning items”. I stand there a little uneasy, while my kids begin taking a few items out of the cart and search for the bar code.

“Cool! Mom! Look at this! Watch, watch!” So I watch as they deftly scan the bar code on a few items, which is immediately priced and added to a “receipt” that is pictured on the computer screen. They place a few items on the conveyor belt and off the items go – in the right direction —- away from us.

So I think, “Hey! I can do this!” I get out the large water container under the cart.

I scan it and put it on the conveyor belt. The computer receipt adds on the cost of the water. But something goes wrong. The computer screen empties and flashes a giant red “X” across the screen that blinks, and blinks, and blinks. I do what any normal “in-over-her-head” mother would do. I point my finger at it and shout, “Stop!”

My daughter touches my elbow and says, “Mom it said to take the water to the end of the conveyor belt to the bagging section.” Sure enough the water I placed on the conveyor belt is NOT moving in the right direction away from me.

“Well what’s the problem? It rang up right!”

“Well first of all,” she says with a slightly exaggerated squeeze to my elbow, “you are s-h-o-u-t-i-n-g.” (She carefully enunciates this so that I am sure to understand the gravity of the situation. After all, you do not shout while in the company of your teenagers and bring attention to yourself!)

“Let’s just follow the directions and take it to the end.”

She turns and picks the water up off the conveyor belt. The computer screen immediately changes to a picture of our receipt on the left, and a picture of a brown paper bag with a small flashing red “x” across the bag. Now I know this means something is still wrong.

My son says, “Mom it says to return items to the conveyor belt!”

“But it just told us to remove it and take it to the baggage area!” I am trying to deliberately and intentionally lower my voice, without much success. As a matter of fact I think I squeaked at this point.

My daughter has reached the baggage area and placed the water on the rubber mat at the end. The computer screen clears! I turn to my son with a triumphant grin, but he has his nose buried behind a magazine with feigned interest. Like he’s ever been a loyal “Good Housekeeping” reader…

I quickly scan the last item. The screen changes and it shows a cartoon hand putting a slip of paper into a slot by the register. I’m completely stumped!

“Mom. It says to scan coupons now.” My daughter has returned to my side… more to hurry me along than anything else, as there are now 5 people in line behind me.

“Well I don’t have any coupons.” My daughter reaches across me and mashes the button that says, “FINISH and pay”. I give her a grin and turn to tell her thanks, but she has disappeared again.

The screen has several buttons that indicate how you would like to choose to pay for your groceries. I mash on the “Debit” button, and the screen changes to a picture of a black keypad. I can’t hear if any instructions are given. I know they aren’t typed out for me on the screen. I ASSUME, that it wants me to enter my PIN number. I key in my number. Nothing. I key it in again a little harder. Nothing.

Ok. Turning to my daughter, I ask, “What’s wrong?”

She refuses to return to my side, and simply points towards my left. I turn and there, next to the computer screen, is a familiar black box with touch-keys and a place to swipe your card. I dig my card out of my pocket book, swipe it and watch the computer screen flash a picture of the same black keypad. Now there are 7 people in line behind me.

I again punch in my PIN number. Nothing. So… I do what any normal mother has learned to do in situations like this. I point my finger at the computer and shout, “STOP!” The computer responds by adding a button to the bottom of the screen as if it has “heard” and “understood” my command. The button reads, “Ask For Customer Assistance”. I mash the button rather frantically. A red light begins to blink at the top of the pole above my computer register. For some reason there is now NO ONE in line behind me.

A front-end manager quickly walks down the front and towards my register. My children have completely disappeared.

A young lady reaches my side and says, “Hello! May I help you?”

I point to my badge and say, “Hey. I have a hearing loss and I’m afraid I missed something. I’m trying to key in my PIN number and the computer won’t accept it.”

She reads my little badge that says, “Please face me, I read lips!”, then faces me and carefully enunciates, “Shhhhh…owww, mmmmeeeeee whhhhattttt youuuuu diddddddd.”

I turn and quickly punch in my PIN number again on the computer screen.

She tried to hide her smile and pointed to my left at the little black box. “Punnnch in yooouurr PINNNN nummmbeerr righttt heeerrreee.”

Oh. So the computer screen keypad has nothing to do with my PIN number? Well why doesn’t it SAY so. Or…maybe it did. I punch in my PIN number on the BLACK box and then push my way to the cart in which my kids have kindly loaded all my bags. My cart has been loaded, but I notice they HAVE been thrown in! I’m astonished to note my cart looks like all those carts belonging to the crazed customers who have left this same line before me. Success! It matters not that I have a hearing loss! I’m as normal as anyone else!

I find that writing in my journal helps me to see a great number of things in a different light. Going to the grocery store can be unnerving and even frightening. But if I write about it, I have learned to find the humor in most situations.

By the time I saw my new audiologist in August of 2003, I had reached a very low point. My hearing loss had begun to affect every area of my life. Even using the t-coil switch on my hearing aids, I could only talk to a few people on the telephone. I couldn’t go to a movie with my family and hear very much of it. Imagine going to see the “Lord of the Rings”, and not being able to hear what Gollum sounded like! I was unable to hear in church. I couldn’t go get ice cream with friends and talk about how exasperating teenagers were. I couldn’t listen to the radio, or CD player. The doorbell, phone ringing and dryer buzzing were all sounds that were a part of my distant past. I could no longer even remember what they sounded like! I couldn’t take a walk with my family and hear the things they were hearing. It always amazed me that they could hear distant sounds like airplanes overhead, a creek through the trees, or birds around us. Some of these sounds had been gone for so long, that they were only very vague memories.

When my son became very ill with asthma-like symptoms, I was unable to monitor the way his breathing sounded. I couldn’t relay this information to the doctor. How could I hear how his breathing sounded before and after treatment, when I couldn’t hear him laugh out loud, or hear his voice as he talked? Hearing how he was breathing was an impossible task.

By the summer of 2004, my audiologist was very concerned at the amount of hearing I had lost in 6 months. She sent me to an ENT in order to rule out an acoustic neuroma. Everything medically checked out fine again, and yet my hearing continued to worsen. For the first time I sat my family down and we discussed my eventually going deaf and what that would mean. My kids seemed unconcerned as they did not identify “mom” with hearing loss. I knew that the hearing world I was born into and grew up in was slipping away from me. For the first time I let my husband really talk to me about what he was learning about cochlear implants. He had met numerous CI recipients since coming to DC, and he felt sure this same miracle would work for me. At first I resisted, as I had conditioned myself to adjust and re-adjust each time I lost more of my hearing.

I began investigating CI’s in earnest, talking with many people about their own implants. By August of 2004, I had an appointment for a cochlear implant evaluation at Johns Hopkins here in Baltimore. I was told that I qualified for an implant on either side. Things began to happen fairly quickly, and it seemed we became experts on implants. My surgery date was scheduled for April 6th, 2005. During those months of waiting, the internet allowed me to contact scores of people with implants. Through email and cochlear implant listserves I educated myself and learned what to expect on my hook up day. Many told me, “Denise, keep your expectations low so you won’t be disappointed. It can take work to understand and hear again”.

In conclusion, I am going to show a very short part of my activation. I show it in order to share with you both the shock and delight of hearing again when one hasn’t been able to do so for years. One second before my audiologist speaks to me, I was already hearing. My face says it all! With the flip of a switch, I could hear in my left ear.

Later that day while walking around the Inner Harbor, my family had to keep walking back to grab my elbows in order to escort me through the intersections. The things I could already hear around me had me stopping dead in my tracks! On one occasion my husband lost track of me in the crowd. My son and I had found a duck. I was so astounded at the duck quacking, that I sat right down on the curb near it and simply stared.

My implant has allowed me to hear many things that I have not been able too in a long time. However, nothing changes the fact that I am still deaf. Without the implant, I no longer hear anything. Even with the implant, there are situations where I still must face the fact that I’m not hearing well and must be proactive about making sure I can make the best of it. Large open rooms, big noisy crowds, even being outdoors greatly affects what I can hear.

In traveling across the U.S., I have met many people with hearing loss. Some are younger than I am, and some are older. Some have a mild to moderate hearing loss, while others have a severe to profound loss. For every person, communication is affected and therefore their life is as well.

I have two dear friends in Florida who are “deaf/blind”. One of them is now bilaterally implanted with CI’s. I asked her recently, that if she was told she could have an operation to give her back her vision or her hearing which would she choose? She echoed what Helen Keller once wrote by replying that she would much rather have her hearing restored. She said that her ears allowed her to communicate and connect with other people.

I always read with great interest any story that has to do with hearing loss. I also read about research on prevention of hearing loss, and studies of how to restore hearing. The one’s in ‘laymen’s terms’! These things will always be of interest to me, because I have a profound hearing loss. I know what it means to struggle to communicate, and to struggle in my relationships because of it.

Here’s a short clip of the activation of my CI. I hope it gives you an idea of what it can mean to one individual to have some hearing restored. Thank you.

Denise Portis
©2006 Hearing Loss Diary

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