Congressional Hearing Health Caucus

Good afternoon!

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. I thought hearing aids were for aging grandparents! I also thought that hearing aids “fixed” their hearing.

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 noticed that as time went on, and a life of diapers and bottles changed to training pants and pre-school, that I was having more and more difficulty hearing on the telephone. At first I thought people were mumbling more, or that they were trying to talk to me in a noisy environment. I remember thinking “it must be the phone”, and talked my husband into getting a newer and more expensive one. I was 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. I had been in a car accident when I was a child, and we thought that perhaps something had happened over time and could simply be fixed. 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 infection or fluid build up. Everything checked out fine with my doctor, so 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, and that like most people with this loss I would 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. Dropping out of activities in my community, church and children’s school were minor in comparison to having more trouble talking to my own family at home. After only two months had gone by, I went to see my audiologist again. She showed me some hearing aids that I could wear that my hair would easily cover. She asked that I wear one for a week, and then come back to see her. On my way out of her office, I saw a flier at the check out desk advertising a support group meeting for hard-of-hearing people. I was amazed to see that the leader was someone that I knew from my church. When I got home I contacted Susan Wilson, who led a support group called Self-Help for Hard of Hearing People.

I learned so much from these meetings! It was so nice to simply learn that I was one of nearly 28 million Americans with hearing loss. I was not alone! However, all that I learned about hearing loss and coping skills did not put a halt on the progressive hearing loss that I was experiencing.

By the time we moved to the DC area in 2002, I had two hearing aids. As my hearing loss was now in the moderate to severe range, even with aids I missed a great deal of a conversation. 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! One day I walked out of a store and 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 now-a-days!” Looking back behind me, however, I saw that they were walking around a red Corvette. It hit me that they had said, “Sweet CAR!” Imagine only hearing 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 what my family were saying 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 be bedside lamps for the first time so that we could talk after going to bed.

By the time I saw my new audiologist in August of 2003, I had reached a very low point in my life. 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. 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 I read about – but could no longer even place in my memory of how they sounded. 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, a creek through the trees or birds around us. Some of these sounds had been gone for so long to me, that they were only very vague memories and not at all tangible to me anymore.

When my son developed asthma, I was unable to monitor the way his breathing sounded, in order to relay this information to the doctor. How could I hear how his breathing sounded before and after treatment, when I could not hear him laugh out loud, or hear his voice as he talked? Hearing how he was breathing was an impossible task. My kids learned to communicate many things FOR me. My kids grew up with my hearing loss. They learned early on to touch my shoulder first to get my attention, and to make sure I was facing them before they began to speak. It was not always easy, but I began learning to be pro-active about my hearing loss.

By the summer of 2004, my audiologist was very concerned at the amount of hearing loss that had transpired over only 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. My daughter said, “You are losing your hearing, you are not losing YOU”. This was little consolation, however, as 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.

However, after meeting people with CI’s and asking questions about their own journey “out of silence”, I began investigating CI’s in earnest. By August of 2004, I had an appointment for a cochlear implant evaluation at Johns Hopkins in Baltimore. I was told that I qualified for an implant on either side. Things began to happen fairly quickly, and we became experts on the three available implants. After choosing one, 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. So many told me, “Denise, keep your expectations low so you won’t be disappointed. It can take work to understand and hear again”.

In a few moments you will see some video of my activation day on May 13th of this year. One second before my audiologist spoke to me, you can tell by the look on my face that I was already hearing. With the flip of a switch, I could hear. When I answered her questions, I was surprised to hear my own voice. Within 20 minutes of activation I was hearing my son’s voice that I had not heard since he was three years old. Later while walking around the Inner Harbor in Baltimore, my family had to keep walking back to grab my elbows in order to escort me through intersections. The things I could already hear around me had me stopping dead in my tracks, with my mouth ajar. 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 been mapped 4 times already, and I can change programs like a pro. I know what works best in different environments. I can change the batteries in the dark – I know this because my batteries went dead in the movie theatre when my family and I went to “The Fantastic Four”, a movie I was saw AND heard. I have learned that our microwave beeps when you punch in the cooking time, and that my coffee maker gurgles and burps when making coffee. The sound of my dog’s pant is worth the doggie breath, and if I leave my implant in while reading in bed – I’ve discovered my husband DOES still snore. Birds make different kinds of sounds, and each of my cats have their own Meow! On June the 28th I ordered Chinese take-out on the phone – by myself – and without captions. The people I go to church with actually LAUGH at my pastor’s jokes, and the car dings if I don’t have my seat belt fastened. The environmental and nature sounds I hear do not compare with the wonder of understanding voices so much better. I can talk to my daughter from the kitchen when she is setting the table for supper in the dining room. I can talk to my husband when he’s driving, even if I’m in the back seat. Conversation is something I look forward to now, instead of dreading. People who know me well have told me that my speech has changed, and that I seem more relaxed. My hearing is not perfect, but my implant is allowing me to hear things that I have not heard in over a decade. I’ve become an expert at making adjustments both physically and emotionally as my hearing deteriorated. The adjustments I have made this summer, however, have been in what I am now hearing again.

I had my entire activation taped on May the 13th. When I watch it again, I marvel at the wonder on my face as I discover that I am hearing again. I hope that this piece we have chosen to share with you, can give you just a glimpse of what a CI miracle looks like. I share this because I now know what a CI miracle SOUNDS like.

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