Part 2 - Unplugged: Listening in Colour
by Karen MacIver-Lux
There is no such thing as an empty space or an empty time. There is always something to see, something to hear. In fact, try as we may to make a silence, we cannot. -John Cage
Opening the Door to a New World of Sound
On the evening of November 23, 2009, I bade an emotional farewell to my left hearing aid in a hospital room at the University of Freiburg Hospital in Freiburg (Universitat Klinikum Freiburg), Germany. For the first time in 34 years, I would not be wearing two hearing aids at the start of the next day. It looked lonely as I put it in its protective case and packed it away, and I pushed my mixed feelings of guilt and sadness aside. Early next morning, I would be entering a new time of my life, and my surgeon, Prof. Dr. Antje Aschendorff would be leading me to the door of a new world of sound, and would give me the key to unlock it.
(Image: Karen and Dr. Aschendorff)
The Cochlear Implant Surgery
(Image: Karen and Dr. Aschendorff on the day of surgery)
One of the greater fears I had about getting a cochlear implant (CI), was the surgery and recovery process. As with anything in life, there is no guarantee that everything will go smoothly and without complications, but I had complete confidence in Prof. Dr. Aschendorff and her team. I was surprised to learn the day before the surgery, that I was to be admitted to the hospital for five days and not the one or two days that is routinely scheduled for most patients in Canada and the United States. At the University of Freiburg Hospital, it is recommended to keep patients for five days to ensure that their CI patients recover as expected. I was looking forward to a “relaxing holiday” overlooking the old city of Freiburg and the neighboring mountains of Switzerland.
On the morning of the surgery, Prof. Dr. Aschendorff came by my room. Her warmth, excitement and confidence brought me (and Martin!) a lot of comfort and reassurance. Shortly afterwards, the nurses came to take me to the operating room. Martin walked alongside me and at the door of the operating suite, he gave me a hug and a kiss and wished me a good nap.
I was allowed to wear my right hearing aid, which I appreciated because I had to answer a lot of questions when I was in the surgical preparation room. Despite being in a hospital in Germany, most of the staff could speak English. Everyone was efficient and it almost looked like a well-rehearsed dance. A warm hospital towel was placed on me, and I was hooked up to monitors. The surroundings were clean, modern with bright slate blue tiles, white cabinetry and surgical equipment, and brushed steel sliding doors. It was easy for me to convince myself that I was in a spa instead of a hospital. The anesthesiologist arrived, went over all the signed consent forms, reviewed details of the drugs that would be administered, and asked me if I had any further questions. I did not. Satisfied, he gave the nurse my chart and he placed the mask over my face.
Oh, I did have one more question. He nodded his head, and leaned forward expectantly.
“How long will it take for me to get to sleep?”
I was asleep before he could answer.
Recovery from CI Surgery: Benefits to a Five-Day Stay
The surgery was an experience that only Prof. Dr. Aschendorff and members of her surgical team recall, and they report that everything went perfectly well. There were no surprises except for one incidence in the recovery room. I reportedly woke up and spoke in German.
I remember vividly waking up, seeing Martin and reaching up to feel the bandage on my head. Bandage on the left side? Check. Can I feel my left and right cheeks? Check. Can I taste the inside and outside of my mouth? Check. Ensure there is no metallic taste? Check. Can I squeeze my eyes shut, raise my eyebrows, and lick my lips? Check. Hey! I can hear some gurgling in my left ear. Oh, okay this is a surprise. I made a note to check my unaided hearing at a later date.
I asked Martin if the surgery went well, and he replied, “Dr. Aschendorff says everything went great!” and gave me the thumbs up sign. I could hear him well enough. Oh good. My right hearing aid is still there! Check. Exhausted and relieved that all was well, I fell asleep again and the next time I woke up, I was back in my hospital room.
Courage is what it takes to stand up and speak; courage is also what it takes to sit down and listen. -Winston Churchill
(Image: Dr. Rainer Beck, Karen, and Isabel Volkhardt)
Activation of the Cochlear Implant
As an audiologist and LSLS Cert. AVT I have good knowledge of the various scenarios that could unfold during activation of cochlear implants. I have seen countless activation (MAPping) sessions and have provided families with guidance through the process. I pretty much knew what I could expect. However, I can’t say this knowledge brought me any comfort or confidence before, during or after my activation. All I could think of was the worst-case scenarios: What will happen if I can’t provide reliable responses? What will happen if I feel facial stimulation when the implant is on? The more I thought about the possibilities, the more crazy and unrealistic the scenarios became What if that ultrasound I got in Berlin to investigate the cause of my chronic sinus infection actually destroyed the electrodes? What if all those spicy curry wurst sausages somehow destroyed my auditory nerve? I had split into two personas: the “patient” and the “professional.” The “professional” just took off to have a vacation without any notice. What was left was the scared, helpless, and irrational patient, sitting in the chair, with tears of nervousness running down her face.
It helped to have Warren there for the activation with a comforting smile of confidence. I had also invited Prof. Dr. Aschendorff to the activation, and she was busy chatting with Emily and keeping an eye on me. Martin was behind the camera, documenting the whole experience. Otmar, my CI technician was ready to start the activation process, and I nodded and took a big breath. It was time for me to open the door and walk into a new world of sound.
The Turn On: Plugged In
MAPping is a term that is used when the implant is programmed to each cochlear implant recipient in order to provide access to sound. In the beginning stages of cochlear implant use, the cochlear implant recipient requires frequent MAPping sessions. However, over time the MAP stabilizes. With each subsequent MAP, increased listening time, and acclimatization of the auditory centers of the brain to the electrical signal that the implant provides, the cochlear implant recipient eventually adjusts to hearing with the implant.
After my cochlear implant was programmed (MAPped), the implant was turned on. Warren spoke, but he sounded like a monotone and higher pitched Darth Vader. I could not understand what he was saying, and the world sounded very quiet. Otmar spoke and he sounded just like Warren. When Martin spoke, he sounded just like Warren. Robotic, monotone, and flat sounding Darth Vader, again. Words cannot describe the mixed feelings that followed. On one hand, I was relieved that the implant was working and on the other hand, I was very disappointed. As much as I tried to tell myself to not have high expectations, I think deep down inside I hoped that I would be able to understand some speech without lip reading. The “patient” in me had some wildly unrealistic expectations.
Adding further to my disappointment, I could not hear Emily calling my name from across the room, nor could I hear any of the environmental sounds in or outside the office. I quickly went from feeling disappointed to feeling depressed.
I heard Warren ask me a question and I responded. This was an automatic, fly by the seat of my pants response based on my knowledge of the pattern and rhythm (suprasegmentals) of spoken language. Warren was thrilled. I wasn’t so reassured. That must have been a fluke. The point to me was that speech didn’t sound so clear. I could not hear soft environmental sounds. And that wasn’t good enough.
Otmar counseled me, and I suppose his words went “in one ear and out the other”. At that point, I wasn’t in an emotional state to hear what he was saying. I heard it all before, but I just couldn’t find it in myself to forgive my brain for having a hard time with the implant signal.
I tried hard to bolster my courage, but all I could think of was when I could take the implant off. I hated it. I did not get any added benefit out of it compared to my hearing aids. I couldn’t even hear an “s.” I was getting increasingly worried that I wouldn’t persist in wearing the implant long enough to get used to it.
I felt like a sulky little princess who didn’t get her way. I had to shake my head and get on with it even though I didn’t want to. Everyone else looked cool. Actually, they looked thrilled with how I was doing. I should have been happy too, but the “patient” in me was angry and upset.
And where was the “professional” in me? Probably, off on the beach in Bora Bora, enjoying a margarita.
Learn to listen. Opportunity could be knocking at your door very softly. -Frank Tygar
(Image: CI surgeon and therapist celebrate a successful day - Karen's activation of therapy with the cochlear implant)
My First Therapy Session with the Cochlear Implant
I was filled with trepidation about having a therapy session so soon after activation of my cochlear implant. Being a people pleaser, my main concern was that I would disappoint Warren, Prof. Dr. Aschendorff, and the rest of the Cochlear Implant team in Freiburg. They had worked so hard for me, and I really wanted them to see the benefit of their excellent care. I was also worried that I would disappoint those in my professional community. Most of all, I was worried that I would let my family down. Despite my own disappointment, I could live with not being able to do well in a therapy session. After all, in my mind, I had already done “poorly” in the room where I was activated.
Warren started out the session with questions and “set to listen” tasks within the framework of a conversation. Eventually, the session consisted mostly of conversation in the open set. Warren’s speech sounded robotic, boomingly loud, and monotone. Certain sounds in words sounded muffled, and at times, syllables of words would melt into one another. In general, this speech had a “reverberating” quality to it. It was almost if I were listening to robotic speech in an enclosed space. I found the monotonous and robotic drone of speech distracting, and this distraction would drain most of the energy I needed to expend processing what I heard. At the beginning of the session, I estimate that I was able to understand about 20% of what I heard upon first presentation. Occasionally, I understood a phrase or question correctly after one presentation. As the session progressed, I found that the quality of speech improved and became easier to understand. It was incredible to hear the gradual transformation of speech from unclear to faintly clear.
As the session progressed, my initial disappointment with the cochlear implant melted away. I became increasingly impressed with my performance. Although speech didn’t sound as clear as I expected it to, and I had to work hard to concentrate, focus, and understand what I was hearing, I saw the light at the end of the tunnel. I heard the difference that increased listening time and practice could make just in one hour. My brain worked hard for me, and I felt obligated to give my best effort back. I was determined to make the most of the listening opportunities that the CI offered, no matter how soft or muffled. I owed it to myself, and my family, and the CI team to give it my very best shot.
Some techniques and strategies that I found most helpful during the process of learning to listen with a cochlear implant are as follows:
1. Waiting for me to process the information was the single most important strategy Warren used. Speech sounded overwhelming loud and muffled, and I needed the time to process what I heard. When Warren waited, I had the opportunity to replay what I heard in my mind, and to try and tease out what I heard. It was the best technique and brought success.
2. Use of conversational level of speech was very important. If Warren raised his voice, his speech sounded more degraded. At times, I asked Warren to move further away from me. When he leaned close, it made it more difficult for me to understand him. It was important to experiment with distance to find out what worked best.
3. Rate of speech had to be just right. Not too slow, nor too fast. Warren used a typical rate of speech instead of a slower rate. If Warren used a natural rate, this helped me to sort out the suprasegmental patterns.
4. Using the” three strikes and you’re out” rule helps take the pressure off the listener. When I could not “get it” by the third repetition, Warren, Warren tried another strategy through listening, instead of going immediately to vision. For example, if I didn’t get the question or statement by the third try, he would either spell some key words. If I couldn’t identify the letter, Warren recited the alphabet until he got to the target letter.
5. Once I got the stimulus correct, I asked Warren to repeat the stimulus several times using varying rates of speech. This practice helped me to create a new “audio-print” for that particular phrase and variations of it, with the hope that I would have an easier time understanding the phrase when it’s presented again.
6. If I needed visual information to help me understand , Warren placed the stimulus” back into listening”. And sometimes, I asked him him to repeat it over and over again.
7. Easy listening closed set tasks served as welcome breaks during the session. Warren gave some easy listening tasks (breaks) to give me success and bolster my confidence.
(Image: Sharing a quiet moment after the therapy session)
Lie down and let the crabgrass grow, the faucet leak, and learn to love them so.
-Marya Mannes
Learning to Listen. Again.
Leaving the quiet therapy room to venture into the noisy world was like being awakened rudely from a deep slumber. The noise was so incredibly loud. Although it was quiet outside, the world sounded like a hundred timpani drums blasting simultaneously and loudly in my head. In addition, there was a constant loud clicking sound that was very similar to that ofa wood block when struck. The shock and intensity of the noises, along with the loud robotic monotone-like speech took my breath away and I found it almost unbearable. I was instructed by Otmar to adjust the sensitivity and the volume whenever I found listening with the implant overwhelming. I tried hard to keep the settings as they were and put up with the barrage of sounds, but after about 10 minutes, I had to reduce the sensitivity and volume levels on the remote control. There was instant relief, and the sounds of the world were easier to bear, but still louder than I was used to.
On my first day of listening, I could not hear every sound. I couldn’t hear the crunching of the gravel when I walked. However, other sounds were more acoustically salient, like the water running from a tap. For the most part, it seemed like I was hearing robotic voices, timpani/kettledrums, clicks and whistles, no matter where I was. The only sound that sounded as I heard with the hearing aid, but on a much louder scale, was the clinking noise of a utensil hitting the plate across the room. Fascinated by the fact that I could hear these higher pitch sounds and voices at such a far distance, I could not help staring at other diners as they ate their food.
Throughout my first week of activation, there was daily CI programming/MAPping. There was, however, a break for a day in programming after the third MAPping session. During this break, another CI technician responsible for my care, Juergen, went over the accessories that came with the speech processor and explained how to use them.
On the fifth day, there was a final MAPping session with Juergen. Each new MAP was created based on my brain’s improved responses to the stimulation the cochlear implant provided, and as a result, I gained increased functional auditory access to speech and environmental sounds.
Every day, following my appointment with the CI technicians, I had a therapy session with Warren. Throughout the day, I made sure I kept busy with activities. Warren, Martin and Emily and I went on many listening walks throughout the city of Freiburg.
One piece of advice that I did not follow was to give myself listening breaks. Everyone kept telling me not to “overdo” it, but I did not want to be tempted to take the CI off. If I was overwhelmed, I either adjusted the settings of the speech processor, or I controlled my listening environment. I was afraid that if I took my implant off, I would miss out some critical listening time and stimulation that my brain needed to adjust to the new signal. The only luxury I allowed myself was continued use of my hearing aid in the opposite ear.
It is beyond the scope of this story to go into every detail about the changes that occurred over time, but the details will be provided in the documentary film that is in development and will be available next year. Following, however, are a few examples of environmental and speech sounds that I experienced as a gradual transformation as I learned to listen with my cochlear implant.
- Pool Room and Waterfall Feature
During the few days of cochlear implant use, the indoor pool area at the hotel in Freiburg sounded like a combination of loud kettle drums and repetitive clicking sounds. It was a raised eternity style pool with water rushing over its edge. Every time I entered the pool area, I would cringe at how loud it was. For the first twenty minutes, I would just grit my teeth and bear the noise. But the longer I stayed in the area, the more bearable the sounds became. By the end of the week, I realized that the clicking sound had evolved into the constant trickle of the water. The kettle drums evolved into the constant hum of the dehumidifier.
- Water Faucet
Interestingly, a running water faucet always sounded crisp and clear to me, even on the first day of activation.
- Car Engine
Whenever cars drove by, I heard timpani/kettle drums beat. This has been one of the slower environmental sounds to evolve. It took me about a month of listening with the CI before the car engine began to sound like a car engine.
- Voices
Shortly after activation, all voices sounded monotone and robotic. Men sounded like a higher pitched Darth Vader. Women sounded like a monotone Barbie. Children sounded like a monotone and even higher-pitched version of Barbie. Men’s voices were easiest to understand, and were the first to evolve so that by the end of my first month of listening, I could recognize the voices of the male speakers. At the end of the first three months of listening, women’s voices evolved so that they sounded fairly natural. After four months of listening, children voices evolved so that they sounded natural. I think that I still have a way to go with voices, but with each passing week, voices undergo tiny changes that add to the naturalness of speech.
- Clocks
I have always heard clocks ticking with my hearing aids. But I always had to make sure I stopped what I was doing, and pay close attention. With the CI, I not only could recognize the ticking of the clock right away, but was alarmed at how loud the clock really is. I can’t miss hearing it, and I had to work hard to learn how to “tune it out”.
- Soda Pop
I always knew that when someone poured soda pop into a glass, it made a fizzing sound. But again, I had to listen closely with my hearing aids. With the CI, I don’t miss that sound. It’s easy to hear and thankfully, easy to “tune out.”
- Dog Tags
A sound I haven’t quite gotten used to hearing, yet, is the sound of the ID tags that my dog, Rosie, wears. I can now hear her moving throughout the house. I’m not sure what tags are supposed to sound like but at the moment they jingle with an occasional whistle, and I can hear them when Rosie is about 15 feet away from me. It’s been four months post-activation of the cochlear implant, and the jingling and whistling is not showing any sign of softening.
Therapy Continues
In Canada, most children who receive cochlear implants receive some form of auditory- based intervention post-activation of cochlear implants. For adult users of cochlear implants, however, auditory skills training programs are few and far between. Many adults with cochlear implants must learn to listen again on their own or through computerized “listening” programs that can be found on the Internet.
I made a commitment to myself, however, that I would take advantage of the resources I had. Warren was there to provide therapy during the first week that my cochlear implant was activated and I found the therapy sessions during this time to be of extraordinary benefit. I often came to these sessions, frustrated and unsure if I had made any progress in developing listening skills. But as Warren would put me through my paces, I realized quickly that I did make gains. Many times I would leave these sessions with a lighter heart, feeling encouraged and motivated to continue wearing my implant during difficult listening situations. For the remaining time that I was in Germany, I received therapy from Steffi Kroeger, a therapist at the Cochlear Implant Program in Freiburg. We explored different resources that I could use on the Internet and for telephone training. She also provided valuable diagnostic information to Juergen, which assisted him in creating a program/MAP that I could use until my next scheduled MAPping session.
Once I returned to Canada, I resumed my therapy sessions with Warren. I knew that it would be difficult for me to track my progress in developing listening skills in the real world with all the demands that daily life would place on me. Therapy sessions would help me to see what my maximum listening capabilities were (at the time of the session), and in partnership with Warren, a home program could be developed with the goal of helping me to make optimal use of my cochlear implant.
It was important for Martin and my mother to (and my other family members) attend these sessions. They needed to see what I was able to do with the implant, and to be counseled on why I was not able to hear or understand speech during certain situations. For example, during the first week of activation, I was not able to hear Martin call me if we were in a busy and noisy store. I even had difficult hearing him at a distance in a quiet listening environment. Warren explained to Martin that it is very difficult to respond to voices in the beginning stages of cochlear implant use. Listening in noise was a higher level listening skill, and one that would be developed with increased listening time and practice. He then gave him suggestions as to what to do during those instances, and how he could help me to hear better during these challenging listening situations.
I feel very fortunate to have been able to access an auditory skills training with my cochlear implant. I believe that the therapy I received is one of the key reasons to my continued success with the cochlear implant.
(Image: The Dream Team: Dr. Hassepass, Warren, Emily, Karen, Steffi Kroeger, and Otmar Gerberaren and Dr. Aschendorff)
A few days ago I walked along the edge of the lake and was treated to the crunch and rustle of leaves with each step I made. The acoustics of this season are different and all sounds, no matter how hushed, are as crisp as the autumn air.
-Eric Sloane
Listening Walks
Warren recommended that I take frequent ” listening walks” with my family. While I stayed with family in Berlin, Germany, I went on these walks with my sister- in-law, Heike. Infinitely patient, she would identify every sound that I heard so that I could create new audio-prints. It was a challenge going on these walks. I could recognize the crunching of the snow beneath my boots but I would mistake the faraway sound of a subway train for the bark of a dog. It helped to have a sense of humour so that I could laugh at my mistakes, and let go of some of my unrealistic expectations.
Four months after the activation of my CI, I went on a listening walk with my family on a nature trail behind my brother’s house, in King City, Canada. There was the high pitch whine and clicking sounds of the nature coming back to life in the swampy pond. The rustling of the old leaves and the crackling of the twigs and branches as I treaded through the forest, was now clear, crisp and easy to hear. Today, the songs of birds are louder than I ever remember and there are a few extra notes to their songs that I’ve never heard before. The marvelous transformation of the sounds of nature will continue, and I’m grateful to feel closer to nature than ever before.
Listening in Colour
The world has changed its songs. Voices are heard more clearly than ever before. Listening in noise is much easier. I still have a journey in in learning to listen with confidence and ease. Even though every day brings a new challenge and a new accomplishment, these add new shades of colour to the way I view the world. Words can not express my gratitude for the gift of this hearing technology, and the chance to learn to listen again. My experience of everything the world has to offer has been richer since receiving the implant and I am now listening in colour.
