Month: September 2003

From the September / October issue of Hearing Loss Magazine

DENISE PORTIS GOES BIONIC!

Impressions and Experiences After a Cochlear Implant
Interview with Barbara Liss Chertok,

SHHH Chapter leader, educator, mother of two, and wife of SHHH executive director, Denise Portis reflects on her cochlear implant two months after she received it.

“Learning to communicate with little to no sound was very difficult,” admits Denise Portis, wife of Terry Portis, executive director of Self Help for Hard of Hearing People (SHHH). “It’s no wonder I used to put my hearing aids in first thing in the morning and take them out right before bed!”

Denise shared these feelings soon after she returned home from cochlear implant surgery at Johns Hopkins Hospital in Baltimore. It seems a tight bandage, causing swelling on both sides of her head, prevented Denise from using a hearing aid in her unimplanted ear for nine days until the swelling subsided.” It was very nice to get some sound back,” she said. Denise Portis (39) was born in Elkhart, Kansas, and raised on a ranch in Walsh, Colorado. Denise suffered a traumatic brain injury in 1972 when she was struck by a vehicle at age six, suffering multiple injuries. She remembers several surgeries being performed on her left ear to correct a conductive hearing loss. They were deemed successful. But she is quick to add,”I cannot remember ever hearing much out of my left ear afterwards.” It would be 20 years before Denise’s family noticed she had a hearing loss. Audiological testing showed a sensorineural hearing loss in both ears, cause unknown. Due to limited funds, Denise did not purchase her first hearing aid until 2001, and then one for her other ear, a few years later. In 2004, Denise was evaluated for a cochlear implant at Johns Hopkins, and, with her hearing loss now severe enough in both ears, qualified as a candidate, Denise currently is a co-leader of the SHHH Frederick County Chapter. Denise and Terry Portis live in Frederick, Maryland with their children, Kyersten (15) and Christopher (14). The interview that follows was completed within two months after Denise received her cochlear implant.

Interview: Your cochlear implant (CI) surgery happened on April 6, 2005. How did it go, and the healing period that followed?

The surgery itself went very well. In hindsight, I believe the waiting was more difficult than the surgery. My surgery was at Johns Hopkins in Baltimore, and the staff there really made the whole procedure a great experience. I really worried when they took away one of my two hearing aids. They did let me keep one, though, until the anesthesia took effect. The healing period was standard procedure for me. Terry took off from work for several days, and my teenage kids were a big help. The most frustrating post-op problem was the dizziness. I had to be careful to stand up slowly and to sit down slowly. Stairs were pretty scary for several days. It lasted for almost 10 days.

What kind of thoughts were running through your mind the day before the hookup?Were you able to keep your expectations low?

I really did my homework and read every hookup story that I could get my hands on. I tried to be optimistic based on simple faith in my surgeon and the fact that the CI has already helped so many people. However, I have to be truthful and say that there was a tiny seed of doubt, or fear if you will,that the implant might not work. I implanted my worst ear, and although I had little to lose on that side, I worried I might end up with zero.

On the big day — May 13th — your entire family was present to witness andvideotape the activation, or hookup, of your cochlear implant. Please tell us about it.

I was pretty tense as all four of us crowded into my audiologist’s office. I could see my hands shaking. When the audiologist turned the implant device on, and said, “Denise, can you hear me?” the video shows that my eyes were as round as saucers. The audiologist began speaking with me, and as I heard her voice and then my own, I turned to my family and said, “I sound so Southern!” When my son said, “Hey, Mom, what’s up?” That’s when I broke down and started to cry becauseI haven’t really heard his voice in years, and it had changed so much. The last I remember of his voice, he still had some speech problems and was my ‘little boy.’ Now his voice sounds so grown up. Then my daughter said, “Mom, I love you,” rather quietly. But I heard it, and very clearly, too. I turned to her and repeated it to her. By this time, I was pretty much a wreck again. Now, my audiologist asked me questions with her mouth covered. I got all but two right. It was really incredible that I could understand the questions without being able to see what she was saying. After I got home from my hookup that day, I wrote it up in my cochlear implant journal with the heading: “So that’s what a miracle sounds like!”

The FDA first approved cochlear implants for adults in 1985 and for children in1990. What made you wait until 2005 to go for it?

An audiologist who tested my hearing in 2003 told me I did not qualify. When I had my 2004 audiogram done with another audiologist, I was told I actually had qualified in 2003. I’m not angry about that because I think I needed the time to talk to more people who had CIs and to get used to the idea over that year. Each audiogram I have ever had has shown significant progressive hearing loss. By the fall of 2004, I was desperate to find a way to hear better. So the timing was right as I look back.

How would you compare the sound of your hearing aids with the sound of yourcochlear implant?

With both my hearing aids, I would catch parts of words. But the rest of communication was based on my ability to guess, in context, and to speechread (lipread). I had to ask for clarification often. With the implant, I hear the whole word. Because I’m still adjusting to the way voices sound, I still have to ask for clarification sometimes. Hearing the entire word has really been amazing to me. I guess that’s why it is so much less stressful to communicate now.

Heather Whitestone McCallum, Miss America 1995, has said the reason she got a cochlear implant was to be able to hear her children’s voices. Was that important to you?

It has indeed been thrilling to hear my teenagers’ voices. They don’t remember my ever being able to hear well, so we worked out early on how best to communicate with each other. I think what was harder for me, was not being able to hear what they heard at movies, plays, concerts, etc. We weren’t able to discuss those things really as I didn’t have a common ground of hearing what they were hearing. I hope some of that will change now.

Is your family treating you any differently now that you can hear them better?

They are constantly surprised at how much change has happened in the process of communicating with me. For example, I am able to talk to them from the kitchen, when they are setting the table in the dining room. They are discovering they don’t have to touch my arm first to get my attention, but can just begin speaking. My kids are a trifle aggravated that I can hear them fussing in a different room! Meal times have been great because it’s so nice to relax and actually eat without having to concentrate so hard on what’s being said. Hot food tastes much better than cold food!

You and Terry recently celebrated your 19th wedding anniversary. Now that yourhearing has improved has Terry started whispering ‘sweet nothings’ into (themicrophone of) your implanted ear?

Yes, he has! Not only that, but private conversations are much easier to have. He can speak in a fairly normal volume, and I can hear him. I think we’ve always communicated well, anyway. What has changed, though, is communicating without all of the tension, sort of an undercurrent of real effort that isn’t there now. He always had to make an effort to face me, speak clearly, have the lights on, and so on. I always had to pay attention to what little I could hear and also speechread body language, and facial expression. It’s a shame one doesn’t burn calories communicating when you’re hard of hearing! I think both of us are more relaxed now.

Have you come across people who think once someone receives an implant, that persons hears everything perfectly?

Oh yes! I’ve had people ask, “So your hearing is all ‘fixed’ now, right?” I just grin and explain to them that I’ll always be hard of hearing. The CI simply allows me to hear better and to hear more than I did before. My hearing is not perfect, just much improved.

Which new sounds do you enjoy hearing the most, and the least?

I love hearing the birds! I had forgotten how many birds were out in the mornings. It’s been very nice taking my morning coffee out to the deck, just to enjoy their singing. I also enjoyed my first rain shower this past weekend. The sound of raindrops on the umbrella and on top of the car… wow! The windshield wipers were pretty amazing, too. At first, running water was really difficult to listen to. I still cringe a little bit when I first turn on the sink faucet, but it’s getting better.

What sound would you like to hear that you have not yet heard?

My kids have really been giving me a hard time about this, but I haven’t heard our cats purr yet. Terry and the kids insist our cats purr very loudly. When I pick them up, however, and put them near the microphone of my processor I can’t hear anything. My daughter told me that if she were dangling up high off the floor and squished up against my head, she wouldn’t purr either. I may have to try a different approach.

Did you experience tinnitus before your surgery, and has it changed sincereceiving your implant?

I had tinnitus in both ears. The tinnitus was gone in my implanted ear when I woke up in recovery. It even scared me for a minute to discover the sound missing on my left side. I still have it in the right ear, though. As long as I have my hearing aid in on that side, I’m okay. At night when trying to fall asleep, I just try to relax. Fortunately, I only ‘hear’ about three tones, like a chord that keeps playing. I have heard that some people ‘hear’ a whole orchestra, so I count myself blessed.

When you’re alone and you hear a new sound, how do you go about finding out what it is?

“What was that sound?” has become my favorite question. If I’m alone, and hear a new sound, I have to go find it myself. I’ve discovered a couple of things on my own, like my coffee maker percolating and the sound sneakers make on linoleum. There have been a few things I haven’t been able to find, though!

Does being able to hear environmental sounds with your implant make you feel safer and more secure?

Yes, it does. A couple of days ago I heard my first siren while driving. Usually emergency vehicles sneak up on me, and I feel uneasy for several minutes even after they disappear. It has always been so disconcerting. When I heard this siren, I located it very quickly and knew from which direction the ambulance was coming. I found myself near tears, and wanting to stop and have a good cry.

The first question most cochlear implant users ask when they meet another CIuser is, “Can you hear on the phone?”

I tried my first telephone call three weeks post hookup. I called my hairdresser to make an appointment for my first real haircut since my surgery. The shaving they do to prep you for implant surgery doesn’t count! The first thing I did was activate the T- coil on my processor. I was really nervous as I punched in the numbers. I could hear the ringing, and almost dropped the phone when I heard her say, “Hello.” I told her who I was and she started squealing, saying she couldn’t believe it was me on the phone. Other than having to ask her to repeat the time available, I was able to understand the rest of the conversation the first time. When the phone call ended, I sat there trying to digest the fact that I had just talked on the telephone to a person, and was able to understand what was being said to me.

Are you able to enjoy music with your implant?

Music is still pretty difficult but I’m beginning to identify different instruments in the band. When I’m watching TV and listening to songs I know from memory, I can follow along with closed captioning. I’ve learned by talking with CI users, that music takes awhile. So I’ll be patient.

Have you tried using a hearing aid in your unimplanted ear together with yourCI?

Yes, I started doing that a couple of weeks after my hookup. If I’m having a one-on-one conversation, I’m still trying to let the CI do the work for me. The hearing aid does add a little clarity I think. I was surprised that I hear better on the left implanted side now. For so long, my right ear was my better ear, now it’s my worse ear. I find that I am relying on what I’m hearing with my CI, rather than the hearing aid.

Has your implant helped you when you attend a church service?

This past Sunday at church, I used the T-coil on both my CI and my hearing aid to hear through their FM system. I used my neck loop and receiver as usual. I was amazed that I could hear people turning the pages of their Bibles when our pastor announced the passage he was speaking from for the service. I was also startled to hear people laugh at his jokes and amusing anecdotes, as I always sit in the front row and cannot see most of the congregation behind me.

Are you becoming aware that certain inanimate objects ‘talk.’ Do you know what I mean?

Absolutely! The day after my hookup I went to Wal-Mart. I was in the lawn and garden section and saw a big forklift pick up a pallet of topsoil. I stood there in amazement as I heard the noise it made to lift the load into the air. But when it started to back up, my mouth dropped open as I heard it make this beep… Beep… BEEP sound. I had no idea those things made a noise like that when going into reverse. I realized it had stopped beeping because the forklift driver was patiently waiting for ME to move. It seems I was standing there with my mouth open, and in his way. I hurriedly stepped to the side, and he continued going backwards. I must have looked pretty silly, I guess.

Another time as I was leaving a parking garage, I approached the automated ticket machine and rolled my window down. I stuck my ticket into the slot, and as it swallowed it up, it said, “Thank you very much.” I grinned from ear to ear, and said, “You’re welcome,” as I patted the machine with my left hand. I looked up and a burly security guard was standing there looking at me, shaking his head from side to side, as if to say, “Some women are plumb crazy!” I giggled most of the way home.

Your cochlear implant has changed your hearing. Has it also changed you as a person?

A friend at church a couple of weekends ago told me that my voice sounded different, and that I seemed so relaxed. In thinking about her comment, I realized that a lot of tension is gone now. I don’t have perfect hearing, but I am hearing so much better than I was before my implant. I do not have to concentrate as much to communicate. It’s really nice to be able to do two things at the same time. Just washing vegetables in the sink and having a conversation with my daughter at the same time is one example.

What would it take for you to feel you are a successful implant user?

I’d love to be able to sing along with a song on the radio, or to be able to sing with the rest of my church when they are singing on Sunday mornings. Even though music is hard for me, I’ve gained so much already that I cannot feel like anything less than a success.

Bilateral cochlear implants are becoming popular. Would you consider having your other ear implanted?

You know I would in a heartbeat. I guess because I know what a second hearing aid did for me at one time, I feel pretty confident a second implant would add the same degree of ease in understanding the sounds around me. I know insurance companies are not approving second CIs as a standard practice yet. If I am ever told in the future I can get a second one, I would.

How would you respond if a culturally Deaf person asked you, “Why an implant, what’s wrong with being deaf?”

I would explain that I was born with typical hearing, but I cannot hear in a normal way anymore. The CI has enabled me to stay connected to the world I was born into, and enables me to continue communicating in a similar way. I would assure them that being culturally Deaf has nothing “wrong” with it, but I am not culturally Deaf. These groups work together on a great number of issues, but the needs of the hard of hearing population are different. One quick example would be that the majority of hard of hearing people do not use sign language, so an interpreter cannot help them. I think that more culturally Deaf people understand and accept those who are choosing the CI. Some are even choosing a CI for themselves.

What would you say to someone in the same hearing situation you were in before you received your cochlear implant?

I would definitely say, “Don’t wait.” My hearing was at the point that no conversation was an easy one. Not even those with my own family. I would definitely encourage them to be evaluated as soon as possible. The world is a noisy place. It’s really nice hearing the world and it’s noises again.