Living with a Cochlear Implant – Five Years and Counting

On August 21, 2012, five years ago today, I arrived at Sunnybrook Health Sciences Centre in Toronto shortly before 8:00 a.m. for my cochlear implant surgery. When I handed my documents to the intake clerk, she glanced at them, smiled and said, “This is a happy day for you isn’t it.” And it was. But I could not imagine then just how much my life would be transformed. It has been quite the trip.

One of the biggest changes for me was hearing sounds I either hadn’t heard before or not since I lost much of my hearing at the age of four. Four weeks after surgery, on the day my implant was activated (so the first time I could hear actual sounds with it), I noticed that the stairs going up to the second floor of my house creaked as I climbed them, as did the dining room chair when I sat down to dinner that first evening. Who knew!

I remember being in my office one day and hearing very fast rat-tat-tat sounds. I looked out the window and noticed that it was raining. This was a new sound for me. Other new sounds I heard early on were the beeps of a truck backing up and me crunching toast. Some sounds were music to my ears, others not so much. I could probably do without the yappy dog in the neighbourhood. But the thing of it is – I heard them. I imagine that I had heard these sounds earlier in my life, but they were missing for such a long time that they seemed brand new to me.

Sometimes there was almost too much sound, as a weekend trip to New York early in my cochlear implant life brought home to me. It needed getting used to. Now it all seems pretty normal.

Hearing loss can bring on loneliness. If you can’t hear what is going on, you feel isolated. And it is difficult sometimes to explain why you can’t always hear, even with hearing aids. When I was growing up, aside from my father and grandmother and a Red Cross instructor who gave me my swimming test when I was in grade ten, I knew no one else with a hearing loss.

Now, it is amazing how many people I meet who have a cochlear implant or know of someone who does. Even the son of my former hair stylist, who has two of them! I’m now part of a select and very special group.

The external processor for my implant is turquoise, about the size of a quarter and attached to my head above and to the back of my ear by a magnet. So it can often be seen.

I remember one day while on my way to exercise class passing a mother on the sidewalk with her two children. She stopped, walked back to me and started to tell me about her dad who had recently received an implant. She and the whole family were so delighted that he was hearing again. This was such a nice connection for me. I have many of these now. And the fact that I have a magnet inside my head that attracts the magnet in my external processor to keep it steady also makes for some very entertaining conversations.

One of the most significant changes for me involved music. I had lots of music in my life while growing up. I played the piano and violin and sang in the choir. But as I grew older and my hearing worsened, I found it increasingly difficult to hear music. One of my hoped-for goals with the implant was to be able to enjoy music again. This happened on a special evening at the symphony some twenty-two months after receiving my implant.

What I didn’t realize until that evening however, was that the range of musical notes I had heard growing up was limited. I have worn hearing aids since the age of five or so and I still wear a hearing aid in my left ear along with the implant and processor in my right. During the performance I removed my processor a few times to check what I heard with my hearing aid alone. The music was muted and rather fuzzy. With both my hearing aid and implant, I heard almost every note.

Over the past five years I have written on my blog about the trials and ultimate success hearing the full range of music and that was certainly a major achievement. But for me, the following two anecdotes illustrate the impact my cochlear implant has ultimately had on my life.

My eldest sister remembers calling me for dinner when I was around four or five years old. She was on the front porch; I was on the driveway facing away from her. She first called me from the front door but I didn’t respond. She kept calling my name and moving closer until she was just behind me before I finally heard her.

I was walking in my neighbourhood recently when I sneezed. I heard a voice saying “bless you”, turned around and saw a young man, baby in arms, smiling at me from his front porch several metres away. “Thank you” I said with a smile and walked on. Before my implant I would not have heard the sound of his voice at all, let alone know what he was saying. Now, instead of wondering why I was ignoring his ‘bless you’, the two of us connected. Such an everyday occurrence, but multiplied many times over it has made a world of difference to the quality of my life.

It will never be perfect. Nothing is. But I cannot imagine life now without this tiny device in my head sending all these wonderful sounds to my brain.

For the past four years, I have talked with many potential implant recipients in my role as a mentor for the cochlear implant program at Sunnybrook. Most have one question in common to ask me: “Was it worth it?” My response is always a resounding yes.

My cochlear implant has not just given me my hearing back. It has truly changed my life.

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It’s still not perfect, but…

The other day I was chatting with an acquaintance and he asked how I was getting along with my cochlear implant. I told him about my success with music and he said, ‘Well your hearing must be just about perfect now.” Well, not quite.

Throughout my life I have had people exclaim ‘Oh you hear so well.’ Or ‘Now that you have new hearing aids, you should be able to hear everything.’ Well, no unfortunately I don’t and I can’t. Sometimes I will try to explain the intricacies of hearing loss and hair cells dying off. When I tried to explain to this particular acquaintance how when we lose our hearing some sounds are lost forever and that makes understanding difficult even with a cochlear implant, I could just see his eyes glaze over.

The other week I chaired a small meeting of just five people, including me and had to ask others to repeat what they were saying several times. It was an off night.

When I received my cochlear implant more than four years ago, I expected that I would be able to not only hear, but also understand the voices of neighbours when we are outside weeding or, at this time of year, shoveling snow. I do hear the sounds now, but not always the words unless I move in closer.

I am writing this ‘tale of woe’ for a few reasons. First, to remind myself that I always need to keep my expectations in check. Secondly, to remember that when people say to me, ‘You are doing so well’, they mean it in the best possible way. They are encouraged and happy for me.

And finally, to let those of you at the beginning of your cochlear implant journey know that learning to hear with a cochlear implant is very much like learning to walk and it takes patience. The first steps are exhilarating – one only needs to look at a toddler’s face as she takes her first steps. And even the next several steps are exciting as well – walking without stumbling; running, racing, climbing etc.

During my first year with the implant, I went from hearing single words to full sentences to talking on the phone – clearly big steps! And to carry the steps metaphor a bit further, some of us go beyond running for pleasure and gain the speeds of an Olympic athletic. In my case, my Olympic moment came two and a half years ago when I heard all the notes of the symphony.

I need to count my blessings and remember where I started, rather than dwell on the ‘not perfect’. A good lesson!

Sharing Stories

I belong to a Facebook group for cochlear implant users like me. I don’t check it that often as many of the entries relate to issues with children and their implants or equipment that is different from mine. This week was different. A woman from Ontario mentioned that she was considering cochlear implant surgery and wanted to hear from others about their experiences. The page exploded with hundreds of stories, all overwhelmingly positive.

I think the main reason for the wealth of responses was that we all love to share stories, especially those that have meaning for us, individually and collectively.

This sharing of stories was something I experienced in a very special way just last week when I attended a production of “Come From Away”, a play about Gander, Newfoundland’s response to the travelers that appeared, literally, on its doorstep after 9/11. For those of you unfamiliar with this story, after the planes hit NYC, the US closed all air space over the continental United States. That left many flights hanging that were already on route. Calls went out to the Canadian government. Would we be willing to take some of these planes? We would. Over the next several hours, planes from all over the world landed on the west coast, in central Canada and, most especially on the east coast and in Newfoundland. Within a short period of time, Gander almost doubled its population. For those of you who don’t know Newfoundlanders, they are without doubt, the most hospitable people anywhere.

“Come From Away” is the story about the experiences of the citizens of Gander and the ‘plane people’ over a period of five days after 9/11. It is a wonderful rendition of this time and the play is filled with stories.

I had not been to a live play in many years but I really wanted to see this one. Normally, even with extra microphone and infrared systems, I still need to augment my hearing with lip reading, so I try to sit close to the speaker. Not this time. My new cochlear implant processor was fitted with a program that would be able to pick up the sounds generated through the infrared system at the theatre. My hearing aid was already tuned into this system so I was able to hear in both my ears.

I love the experience of live theatre. The dialogue is fast paced and it is always more challenging to get the words when they are being sung rather than spoken. But I heard so much more than I can recall during earlier visits. And this time, I could hear the actors’ emotions, something that had been missing before.

Imagine being able to hear and relate to emotions. And there were many – poignancy, sadness, joy; layers upon layers of emotions, which made for a very rich experience.

One more step on my implant journey and one more story to share with all of you.

Accents matter when you are deaf – especially when you can’t lip read

When I was in grade eight, our class watched and then discussed a film. I was asked a question about the film by my teacher, a recent arrival from Australia. In addition to a strong Aussie accent, he had a very bushy moustache, impeding my ability to read his lips. That plus the accent made it too difficult for me to understand the question so I asked him to repeat it. He did, but I still couldn’t understand what he said. Rather than admit I didn’t hear, something I couldn’t bring myself to do until well into my thirties in fact, I said I didn’t know the answer. My classmates burst out laughing and I knew they must be laughing at me. I later found out that the question was “What is the capital of Canada?” This was not, needless to say, the happiest of school memories.

My cochlear implant has improved my life in immeasurable ways and I do hear much better than I did back in grade eight. But I often still need to lip read to understand what is being said. And as with my experience with that Aussie teacher, I am also stymied by accents. The words not only sound different but they actually look different when formed by the lips.

Let me give you an example. Many years ago I attended a conference in San Diego put on by the Alexander Graham Bell Association for the Deaf. This was the perfect place for a deaf person to be because not only was everyone aware of our needs, the services available greatly enhanced our ability to hear and understand. One such service was the oral interpreter. This person takes what is being said by the speaker and mouths the words silently, sometimes changing the word or phrase to make it easier to lip read. I had my own oral interpreter and within minutes of watching her lips knew she was from Chicago, even though I did not actually hear the sound of her voice. I had cousins living in that area and knew how Chicagoans sounded. I could see her lips form the broad and long ‘ah’ sound like Chigaaaago and heard it in my mind’s eye so to speak. The ‘a’ looked different.

Hearing without being able to lip read can be challenging and a lot of the difficulty in my case is due to accents. A few weeks ago I listened to a series of short videos in preparation for a course I was taking. The videos consisted of a narrator as a voice-over and the main speaker looking into the camera. While I could understand the main speaker, I was totally lost when it came to the narrator as there was no captioning to help me. It was a woman’s voice, somewhat soft and with a bit of a drawl I think. But her accent was too hard for me to understand the words she spoke and of course there was no way I could read her lips.

Recently however, I had a totally different experience with accents, which is why I am writing this post. My sister and I watched a show called The Edwardian Farm on YouTube. The show is British and includes a narrator plus three main characters working a farm as it would have been in Edwardian days. While it was difficult for me to get what the three main characters were saying unless they faced the camera, I could understand the plummy BBC-type accent of the narrator perfectly. And just last week I was listening to a pod cast of a lecture given by a Cosmologist from the Perimeter Institute. He is originally from South Africa but studied in England and had a similar accent to the Edwardian Farm narrator. Again, I understood him perfectly.

I’m not exactly sure why I can understand one accent and not the other, although I suspect that a lot has to do with pitch and enunciation as well as the deliberate cadence of the speaker. But it is an eye-opener for me to know this. I think I shall have to move to London!

Wired for Sound: a memoir of deafness and cochlear implants

I first met Beverly Biderman about 25 years ago while executive director of VOICE for Hearing Impaired Children. As an early recipient of cochlear implants, she has been an inspiration for me. She wrote a book about her experiences a number of years ago and has recently updated it to tie in with the inaugural performance of an opera about her life! Here is the press release for the opera and more specifically the release of the revised ebook for any person in your own life who has a hearing loss and might enjoy receiving it. I highly recommend it!
Rosemary Pryde

Beverly Biderman, the author of WIRED FOR SOUND: A JOURNEY INTO HEARING is pleased to announce the birth of an opera based on her memoir of learning to hear with a cochlear implant. The opera, titled TMIE, on the threshold of the outside world, will premiere in English February 25th, 2016 in Lisbon, Portugal at O’culto da Ajuda. The intriguing “TMIE” in the opera title is the name of a gene involved in hearing and deafness.

A new revised and updated version of Biderman’s classic book on deafness and cochlear implants is now available as an ebook. This rare “inside” account of hearing with a cochlear implant, the first effective artificial sensory organ ever developed, is a moving story about a deaf woman’s journey through deafness and into hearing.

Praised by Oliver Sacks as “a beautiful account full of wonder and surprises,” the 2016 edition brings the reader up to date on the technology, and more importantly, on the transformations in Biderman’s life brought on by her cochlear implant.

“… reads in line with the best of memoirs, one that leaves us wanting to hear her voice again.”

Foreword

Beverly Biderman has had a progressive hearing loss since she was a toddler. It became profound by the time she reached her early teens, and from that point on, she was completely unable to understand any speech without lipreading. As an adult, she had surgery for a cochlear implant, and then — everything changed.

The ebook, “Wired for Sound: a journey into hearing” is available on Amazon.

For further information, or complimentary reviewer copies of the ebook, please contact Bev.biderman@utoronto.ca

Glass half full or half empty?

Last week I received a new processor for my cochlear implant. The processor is the tiny computer that translates sounds in the environment to a code. The electrodes in my implant use this code to send a message to my brain that I have heard the sound. I must admit that I have a difficult time believing I have only had this marvelous invention for three years. It seems like a lifetime and I can hardly remember what life was like before my cochlear implant.

There are still challenges, especially when I can’t read a speaker’s lips, but they are far outweighed by the experiences that now go in my ‘life-half-full’ glass. My new processor includes a special receiver that connects both my hearing aid and implant with the personal FM that I wear in groups to boost the sound. So I am now hearing in stereo! Just two days after receiving this new processor, I attended a special music concert at church. I was amazed at how much better the music was this time, even more than that first time I experienced music with my implant at the Symphony, some eighteen months ago. I could hear very soft sounds distinctly. It’s really quite something.

The percussionist who provided some of these soft sounds sat up very tall in his seat and hid the speaker’s head from the pulpit. I tried to lean across him so that I could see the speaker’s lips, but was almost in my seat mate’s lap! So I missed hearing most of what the speaker said. There was a short video about Advent and an explanation in a child’s voice about the first candle of hope. I was able to get the gist of the message but unable to hear it all. It would have been nice to have had the video captioned so I could read what she said. My local newspaper, like many, has an extensive catalogue of videos on its webpage. But much to my dismay, none of the videos are captioned. I had a good talk with the customer rep and she thinks it’s an idea whose time has come. Hopefully I will be able to hear some of my favorite columnists sometime in the future. We’ll see.

And while my implant has improved my life in immeasurable ways, I still experience trepidation in any waiting room wondering if I will hear my name being called. This is a very common concern for anyone with a hearing loss. Even though we do hear our name above all other sounds, the anxiety of missing is always there, especially when there is more than one door where the person is calling from. I was in such a waiting room just last week. It took me a while to realize that those calling out the names were coming from an entrance behind me. Oh dear – did I miss? I quickly moved so I would be in the line of sight of this door and was able to see the person mouthing my name when I was eventually called. Whew.

So glass half empty or half full? No question – entirely full. A very good friend of mine told me the other day how much she admired how I had dealt with the many challenges of deafness over the years. To me, they aren’t really challenges, just steps along the way, even if they are sometimes one step forward and two steps back. I can now experience so much more. All in all, the challenges are pretty inconsequential when I can hear that beautiful music.

The Communications Challenge

The other day I was introduced to someone and as is usually the case, mentioned early on that I was deaf. His response was, “Oh, you use sign language.” “No,” I said, “I speak!” He was rather taken aback and indicated that surely I was taught how to sign in school. I told him no, I went to a regular school and didn’t pick up any signs for years. Now I know the signs for Merry Christmas, Happy Easter, thank you and sorry, but that’s about it.

This encounter got me thinking about the different ways those of us with hearing loss communicate. If you are unfamiliar with this topic, here is some background.

There are basically three types of communication approaches that are taught to children with hearing loss: verbal (and that can include speech reading or lip reading as well as listening for auditory cues); sign language (in Canada, American Sign Language is used but there are other versions in other countries); and Total Communication, which is a combination of speech and sign.

The communication approach you are taught as a deaf child depends on many factors including current educational thinking, whether you were prelingually deaf (generally deaf before the age of one) or became deaf later in life, the severity of your hearing loss, your family situation and the availability of therapy services in your community.

I first learned about the controversy surrounding communication approaches back in the mid-eighties when I volunteered to sit on the board of a charity providing services to deaf individuals. This organization referred to those of us with hearing loss as either Deaf, deafened or hard of hearing, depending on the severity of the loss and the type of communication we used.

I learned that those advocating sign language don’t always agree with those advocating speech, particularly where children are concerned. Often there are severe camps that attack each other.

In my own case, I was four years old when I lost my hearing and five when the diagnosis was finally confirmed. As the youngest of three children in a family that also included three adults, I learned spoken language very early and by the time I was four was reading books, so it seemed a natural decision for me to attend a regular school.

The educational authorities however, wanted to send me to the school for the deaf where I would learn a combination of sign language and speech and be with other children who were also deaf. At the time, the only specialized school was a three-hour drive away. My parents decided that there would be no way they would send their five-year-old to boarding school and put up a fight to have me enrolled in a regular school, two blocks from our home. I’m very glad they did, but when I tell this story to those who use sign language exclusively, they think I am criticizing them.

I am truly not.

Over the years I have thought a lot about why the feelings regarding this issue are so intense. Parents of deaf children want to communicate with their child and many fear that they won’t be able to do so unless their child learns spoken language. Adults using sign language often had to cope with less than ideal communication situations during their school years and when they discovered sign language, a whole new world opened up for them. Anything that threatens this world, including deaf children who receive cochlear implants, is very scary.

I have always believed that communication in all its forms is a life force. We cannot do without it. Imagine how crucial it must be for those with hearing loss to find ways to communicate with others. Anything we can do to make it easier, whether it is providing a variety of communication options for children, continuing to develop better technical tools for those using speech or simply honouring the communication approach chosen, would be a good thing!