Today’s post diverges a bit from my usual daily writings on this blog. For one thing, it’s longer. For another, it’s more about me than my animals. I’ve wanted to fill you in on my cochlear implants, but it’s been difficult to write about such a complex and personal journey. It took months of thought, and then a weekend writing retreat with a good friend to do it. Here is the result, Not surprisingly, because it is about my life, there are animals in it. Both Tonka and Lily make appearances.
A Life Transformed
Three years ago, on December 17, 2010, I walked into Lahey Hospital to undergo surgery that I had been thinking about for a long time. Ever since my teenage years, my hearing had been in a gradual decline. I was now fifty and I had a severe hearing loss. I wore two hearing aids; with them I could have a conversation, but only if the room was quiet, if my friend was close to me, and if she spoke clearly. Everyday interactions had become almost impossible. It was depressing and scary, but there was one more option for me. When I left Lahey that afternoon, I had a wide white bandage around my head. I’d received a cochlear implant (CI) in my left ear. The surgery gave me the possibility (though no guarantee) of better hearing. Three weeks later, after the swelling from the incision subsided, I returned to Lahey to have the CI activated. I sat in a small room with Nancy Cohen, my audiologist. I put the external processor (which looks like a hearing aid) behind my ear. Attached to that is a cord and a flat disk, which would transmit what the microphone picked up to the device that had been implanted inside of my skull. The disk is a magnet, and there was now a metal plate under my skin so it stuck right on. Nancy flipped some dials on a machine. She stimulated each electrode in turn to test if the device worked. It did. I heard ping, ping, ping, in varying pitches.
A normally hearing person gathers sound in through their external ears, which is then channeled inside, through the eardrums, where it ruffles tiny hairs. Those hairs act to transmit sound in the form of electrical currents to the brain. When the ear works properly this all happens seemingly instantaneously. A full range of sounds are all simply there, in your mind. It had been many years since that perfect system worked for me. I relied on hearing aids, which were only able to amplify the limited sounds gathered by my damaged system. Cochlear implants offered me the possibility of hearing a wider range, which I optimistically hoped would bring clarity to conversation. However I realistically knew that hearing with CIs is through electronic means. It does not return hearing as you know it. The ping, ping, pings confirmed this.
With my CI, a microphone perched on top of my ear collects sound. It points forward, which the human ear does not (so, right away, the CI is different than natural hearing.) This device (powered by batteries) turns sound into electrical patterns that are transmitted into the processor inside of my head. This becomes a code, which is sent to an array of electrodes on a fine wire that the surgeon implanted inside of my cochlea. That array stimulates the auditory nerve, which transmits the information to the brain. The squiggle of wire stimulating the cochlea provides input, but it is not the same as natural stimulation. The brain has a lot of work to do to make sense of it. To add to the difficulty, each CI has to be programmed for the individual user. That first day, Nancy Cohen, by intuition and training, determined what I would hear, and at what volume. A tweak of the program can make the difference between unintelligible sound and clarity. Over time, as the brain becomes accustomed to this new way of hearing, and the program requires further adjustments. That first day, the first thing that I heard, Nancy’s voice, sounded like a distant robot. Still, I knew that my life was going to be transformed. I could hear! My husband was there with me, and when Steve spoke from across the room, I could hear him. I could hear every word! Too bad Steve sounded like Darth Vader’s wimpy cousin.
It is not like putting on new glasses, when the world suddenly comes into focus. The brain has to figure out what those inputs mean. I gave my brain lessons. I listened to slow and steady narrators of wildlife documentaries on my iPad. I listened to audio books with clear-voiced actors. It had been years since I’d been able to listen to the radio in my car. Now I could! It was thrilling, even though all of the newscasters, both men and women, sounded like Minnie Mouse. Over the weeks voices began to sound natural. Over time I found myself able to sit in a noisy restaurant, with two friends, and hear the entire conversation. I heard the clicks of my dogs’ toenails on the wood floor, I took walks with Steve in the woods and could hear what he was saying, when he was behind me and I wasn’t looking at him! Every day a sound was regained. I was hearing high pitches, lost to me for thirty years. Birdcalls became birdsong.
For the first few months I used the CI on my left side, and my hearing aid in my right, but soon I stopped wearing the hearing aid because its sound was so muddied compared to the CI, that it interfered with clarity. That meant that I was hearing from one side only. I was constantly turning my head to pick up voices. My neck hurt! And without input from both sides, I had no idea where noises originated. Yes, I could now hear someone talking from another room, but which room was it? A second CI was the answer.
Undergoing another surgery was not an easy decision. Surgery is always a risk, and honestly, it scared me. I was hearing so very well that it was hard to imagine how much better it could be with two CIs. Mostly, I was worried because the surgery can destroy all natural hearing, as it had done in my left ear. I had very little remaining in my right ear, but I did not relish the thought of total deafness. Still, I decided to go through with it, and returned to Lahey on February 28, 2012. Dr. Elizabeth Toh, who had done such a brilliant job the first time, once again implanted the CI. A few days after the surgery, I discovered that I did retain some residual hearing; I could hear Lily’s loud bark, and water running in the shower. It was enough so that when I’m not wearing my CIs, that I don’t feel as if I exist in a sensory vacuum.
Because hearing with CIs is intrinsically tied to how capable the brain is in interpreting this new way of getting information, you never know how well you’ll do. My brain was used to deciphering the world through electronics. I’d already pushed the boundaries of hearing aid use for 25 years; as my hearing had declined I bought each new generation of aid, and used every auxiliary technology that I could find to keep functioning as a hearing person. My brain was up to this new challenge. Because of this, my first CI was a success, but what happened with the second was magical. Humans have evolved to have binaural hearing – sound coming in through two ears. After a few months of having the second CI, when sounds began to normalize, it was like a switch was flicked and my world was transformed. It was like going from a black and white Kansas to the colorful world of Oz. It was like upgrading from a tinny AM radio to a Bose system. I don’t just hear voices. I hear richness and beauty. Two CIs were more than the sum of the parts. It is only now that I am hearing so well, that I realize how much I lost with my hearing disability.
A gradual hearing loss is an insidious thing. You don’t realize what you’re missing. Once hearing is gone, it’s hard to compare now to then. It’s not like each week you wake up with one fewer finger. It’s a loss that’s not visible and hard to quantify. You cope without knowing it. You make decisions without realizing that they are dictated by the loss. My world had been slowly shrinking. Professional conferences and lectures, always stimulating and inspiring, became too difficult to attend. Despite my hearing aids and other technologies, interactions with my peers were exhausting and frustrating. My social life constricted into smaller and smaller circles. Parties were a cacophony of unintelligible noise, and even dinner table conversation was out of reach. I only visited with friends one at a time. I didn’t go to movies or plays. The CIs have reversed that course. Once again, I can listen to a panel discussion. At Chanukah, ten people sat at my dining room table, and I heard them all. Also returned are the small interactions I didn’t know I’d missed, such as the sincere “have a nice day” from the cashier that I’ve seen at the supermarket for the last ten years, and the casual whispered hello at the library from an acquaintance.
I also stopped doing things that might seem to have nothing to do with hearing. I stopped riding horses. I thought that riding was no longer something that I could do, because my back hurt. But that wasn’t it. My back still aches, and yet I now have a horse. I remember visiting the barn, four years ago, where I now board Tonka. I couldn’t hear a hello by a woman tacking up her horse. I couldn’t hear what my friend was saying when she bent over to pick out her horse’s hoof. There I was, surrounded by my favorite animals, and yet I was tense, trying to make sense of what people said to me, trying to listen and respond. Instead of being a good trip to the barn, I left exhausted and sad. You might think that that shouldn’t affect the riding, that horses don’t care if you can hear. They don’t. But the experience of keeping a horse is also tied up in the interactions with the humans at the barn, and I couldn’t do it. Now that I have CIs, I can talk with the other boarders at the stable, I can hear another horse coming up behind me in the ring and know to move out of the way. I can chat with another rider while on the trail. I didn’t realize how stressful it was to be riding without those interactions until they were returned to me. I am riding again because I can hear.
When I was younger, I’d chalked up my disinterest in music to my lack of musicality. I couldn’t even hum on tune. I also didn’t much like pop music. I stopped paying attention to music when disco hit the airwaves. Recently, I was listening to a piece on NPR about Bob Dylan, and they played a song, one that I’d heard as a girl before losing my hearing. But, this time it was so stunning, so different, that I had to pull over to the side of the road to give it my full attention. Tambourines jingled! What a delightful noise! No wonder Dylan played them. His voice had a complexity that I’d never heard before. And those lyrics? It turns out that I’d filled in the blanks and made most of them up. (Dylan’s were better than mine.) A few weeks ago I went to hear the Boston Symphony Orchestra that plays in one of the most acoustically perfect halls anywhere. I heard the tinkling of small cymbals, a sound that I don’t know if I’ve ever heard before. It was so, so beautiful. So that was why people listened to music!
The CIs have done more for me than I’d ever hoped. Each day brings a daily dose of beautiful noise, often in tones that are new to me. That would have been enough to have made the surgery worthwhile, but I also have the CIs to thank for renewed friendships. I’ve become an active listener and conversations are plentiful and filled with give and take (people with hearing loss often either dominate discourse or retreat in conversation. I’ve been guilty of both coping tactics.) I used to feel isolated in a group, or socially awkward. Now I can take part with ease.
And then there are the casual sorts of interactions that used to be the most stressful and that I did my best to avoid, that I no longer have to run from. Here’s an example: Lily is a reactive dog. I have to be careful when taking her on walks, because she gets scared and potentially aggressive if an unknown dog comes bounding up to her. When I see someone with their dog in the distance, I usually turn the other direction. But, the other day, a neighbor came walking down the street towards us with her dog on a leash. I was able to call ahead and say, “Lily gets nervous, please keep your dog to the other side of the road.” I was able to hear and gauge her response, and know that she would keep responsibly on the verge. My neighbor and I were able to chat, from fifteen feet apart. We talked about our dogs, about Lily’s fears, about the weather. Lily relaxed. I relaxed. What a transformation, and it’s all due to my being able to hear.
That transformation happens on a daily basis. Three years after the first CI, and not even two years after the second, my hearing continues to improve. My interactions continue to blossom. Science has wrought these miraculous changes. I couldn’t be more grateful.
The CI is visible behind my ear.
To find out more about the research being done into hearing loss, visit the Hearing Health Foundation. I support them, and I hope that you will, too.
For information about hearing loss, assistive technology, and to find support groups, join The Hearing Loss Association of America. They are one of the few effective advocacy groups for hard of hearing people. It was by attending HLAA conventions years ago, that I learned about CIs, which gave me hope that there was better hearing on my horizon.
Beautiful.
Wonderful.
I am so happy that the world and all it’s variety have returned to you!
This was an inspiring and interesting piece to read. Thank you for trying so hard to help us picture what it would be like to both loose and to regain the sense of hearing, I do feel like I understand it a lot more personally now.
(My Mother-in-Law pretends she hears everything but in reality she doesn’t but she won’t admit to it and uses both the coping strategies you mentioned – dominating and withdrawing from conversation. Thanks for this insight into why she may be like this)
It is a difficult disability to admit to, and there are so many negative connotations of hearing loss for people of her generation that they are often in denial.
WOW! So happy for you. You write so beautifully. Moved me. Happy for you.. Now understand a little more about my father. He also uses both coping strategies and uses 2 hearing aids.
Good for him to have strategies and aids! Even then, I am sure that hearing is challenging for him.
Terry, thank you for sharing such a personal story. Your description of the journey you have been on is an inspiration. Your world shrinking as the hearing loss became profound and the Phoenix rising. I cannot imagine not hearing, or seeing for that matter. Just look at all you have accomplished over these years. That is the testament to your determination. Just imagine what you will be able to do now. Your new age of discovery!!
Yes, every day is exciting.
A very enlightening post. I’m glad science has come so far as to help people hear, speak and see. When I read testimonials like yours, it makes a person have hope anything is possible through science. A cure for some cancers or Alzheimers? The sky is the limit. I want to wish you continued success. I have always loved a story with a happy ending.
Thank you for your story, Terry and would, if I could, give you and Dr. Toh a hardy pat on the back for the miracles you give to people everyday.
I give Dr. Toh eggs – she says I’ve turned her into a “fresh egg snob!” :)
I enjoyed reading this Terry. So glad I sang part of My Girl Back Home to you from South Pacific at Bonsai West!
So happy to read about this journey… this happy journey.
Terry, I am so very happy for you! I can relate to the time when you had hearing in one ear, only, as I lost my hearing in my left ear. Suddenly. Completely. In the middle of the night. I awoke to a strange world, and for a few moments, didn’t understand that I’d lost my left ear. It’s a horrible handicap, and I can imagine what your life had been like when you had to rely on hearing aids. They don’t know what caused my hearing loss, but I was told a CI would not work for me. That was five years ago, and there may have been medical advances such that it might now be an option, but at 70 years of age, and retired, I’ll probably never know.
My heart is truly filled with joy for you!
Not too old. Most of the implant recipients at Lahey are in your age range. Find a good implant center and get another opinion.
What a courageous Lady you are. I cried joyous tears for you the whole time I was reading. Wishing you every day, new discoveries, laughter and surprises with your FABULOUS technicolor sound… :o)
Hi Terry, this was a very interesting, informative and inspirational read. I have noticed that conversations with you, while always delightful, have become easier and more relaxed in the last few years. I’m so glad you can now enjoy all the richness of the world of sound, and the next time I complain about how a ticking clock annoys me I might reconsider.
oh, i’m so glad you wrote that piece – the one about hearing – today’s, i mean.
i’d like to tell you why – and of course, that means i have to reveal personal (groan) things about me. i’m 82, live alone, farm and factory background been married, now widowed. and have been going deaf for the better part of the best years of my life.it finally got so bad that family and friends and advertising from the hearing aid companies finally got the better of me and i decided to buy hearing aids. i knew when i did i would need two. i knew it would cost me plenty and it did . $6000.00 isn’t really an awful lot of money, but it was a chunk that ever since i’ve gotten them, i’ve kicked myself for doing it.
until just maybe the last month. and now, i’ve thought – ‘my ears are starting to work better on their own – it can’t be’ – but from what you said i guess it can happen.
now i’m looking with new eyes at my tiny computers. i don’t expect them to heal my bad ears, but i have hopes that they will improve in their/my reception so that i am able to hear well in more situations than i do now – you mentioned being able to hear conferences and lectures and mine just don’t handle them at all – or music (i take them out to listen to music) but they are getting to the point i almost feel justified in buying them. and the improvement in daily life – like the clerk at the grocery store saying have a nice day – that’s been great. and there have been some funny ones, too – i never used to hear a jooke because anybody telling a joke will lower their voice at the punch line – now i can honestly laugh!
THANK YOU, teri
Jean, hearing aids are wonderful and frustrating at the same time. They can only amplify the range of sounds that you have, so sometimes it seems as if they’re just giving you loud, incomprehensible noise. It helps to understand their limitations. Still, life with hearing aids was far better for me than without. Also, I’ve had helpful audiologists, and ones that were not. Who programs the aids makes a difference. Keep at it!
Terri,
Please, keep writing and speaking about this topic. So many aren’t fully aware of the CI process, potential benefits and the real experience. Your article was easy to read, understandable ,clear and moving. Please, keep writing.
Thank you. I will.
Thanks so much for writing this. I’ve been following your blog since before you got the implants. I also took American Sign Language classes for a couple of years and learned a lot about the Deaf community and their response to cochlear implants. So, I was very interested in your experience as a previously hearing person.
Do you think your having been hearing helped your brain learn how to deal with the new input? I know some deaf don’t adjust well or at all.
The Deaf community is quite different from those of us who are late-deafened. Having been born hearing, and having used hearing aids right up to getting the CIs did impact the success. But, much has to do with attitude and motivation to do auditory rehab.
I’m thrilled for you.
Terry, I just loved this post. I feel like I know you so much better. I did not understand the depth of suffering that hearing loss can create. I have family members whose hearing is getting worse, and I feel ashamed at my lack of compassion at times. Thank you for showing us the other side.
Sometimes it can hard to be compassionate to someone who comes across as angry, or willfully needy, or indifferent. Hearing loss causes so much stress, both of the person who cannot hear, and for the family members who aren’t heard. Understanding what hearing loss is like can improve everyone’s lives.
What a beautiful and beautifully written story! Thank you for sharing.
Terry, thank you so much for sharing this with all of your readers. I had wanted to ask how it was going, but did not wish to intrude. Your story is so moving and so well articulated. Best wishes for a wonderful new year to you, your family and, of course, all the animals in your life.
Thank you for sharing your amazing journey! You are a fantastic writer. Your letter conveyed a wonderful balance of facts and emotions that truly touched my heart. I admire your bravery to have the initial surgery and then the second. I’m very happy that you have found so many beautiful things that you had been missing; sounds that you didn’t know or remember existed. You have been given a new life and you are overflowing with joy and gratitude. Your joy is inspiring and contagious. This is an important reminder to me that hearing is precious and should never be taken for granted. Thank you again for this great letter. Something tells me that you could rival Bob Dylan as a songwriter!
Hugs and continued Blessings, Terri
I don’t think that I have songwriting talent, but I’m glad to share what abilities I do have on this blog :)
So very happy for you. Thank you for sharing x
A wonderful read Terry…my own hearing loss is nothing compared to the long journey that you have been on. It is great that you are so articulate and can express all the feelings that you had along the way, including fear. Writing is a wonderful talent and yours brings enlightenment to all of us. The success you have had with your hearing and, ultimately, your return to riding bring me great joy. The possibilities are endless when you have the right approach to life. Seasons greetings to you both and the very best in 2014.
Echoing all the sentiments above….your blogs are a blessing in the lives of so many and so enjoy reading the blessings that you have in your life too! Light and love to you, your family: two legged & four!
Hi Terry, you’re an inspiration and am so very pleased that you continue to improve. You’re writings on the website put all things into perspective, always uplifting even in the face of adversity. Thank you. Christmas Greetings from a very wet England!
You make me want to get CIs. I was born severely and profoundly deaf gradually becoming profoundly deaf by my sixth grade year. I will be turning 50 this year. I speak and lip read and have done so for most of my life. For years, I did not qualify for CIs due to this or that. I believe I now qualify; but, I am so scared of the surgery and the initial pain that comes with it. I am reaching the point where I am tired of concentrating on lip-reading. My focus is short. My husband and I know some sign which helps immensely when I’m very tired. It is hard to read between the words and put it all together to make sense of what is being said. I do have an aid in the left ear but my right ear is dead. You hit the nail on its head with the description of what it is like to have sound coming only in one ear. But, I’m used to it — it’s my normal. Kudos to you for being brave!
In the less than a year between the two surgeries, the protocols had changed. The second surgery was much easier on me! Recovery within a week. Almost no need for painkillers other than ibuprofen. Really. Don’t read old scary accounts of the surgery. Find a good implant center and consult with the surgeon.
This made me cry…happy tears.
Me, too! I’m a new reader, working my way through the archives, and this is my first comment. Thank you, Terry, for sharing this deeply personal journey with us.
You described so well what my world is like today. I know all of the frustration you speak of personally. While I am not ready to go through with the surgery, I have much more information thanks to your generosity and courage in sharing your story. Thank you, Terry.
Here’s another reason to do it – people who haven’t seen me in awhile all say, “what have you done? You look great!” Hearing well and not being stressed is better than a spa treatment. Also, the surgery has vastly improved. It’s a small incision, and the second time around, I recovered by the end of a week. Make sure, when investigating options, that you are reading very recent accounts!
Thank you for this.
I’m not CI ready, not yet. But I suspect that I’m on the path (lots of careful choice of restaurants, useless in large crowds, hand to ear to gather sounds, sensitivity to loud music–my ears ring at even low volumes), and it’s comforting and empowering to know that the available technology \can be so wonderful.
I think that what was essential to my success was my use of assistive technology and hearing aids. Don’t get to a point of isolation and desperation before you get help.
You have such a gift for writing. I was so happy to read this post. I almost feel I was with you for the journey. It brought tears to my eyes but they are happy ones for you. That you are able to enjoy life more fully once again. You are so wonderful and open to share all o f your amazing life journeys. I will be awaiting an update on the nursing home hens. Thanks for all you do and For sharing.
Two of my favorite sounds are the purring of cats and the soft clucking of hens. Both are very peaceful and soothing. I am so glad that you can hear again because I can’t imagine how sad I would be to lose these special sounds. Thank you for sharing your story.
I should add that another favorite sound is the crunch of snow underfoot…since it looks like you are getting a good snow storm tonight!
Thanks so much for sharing this with us. Got a little misty eyed there.
After nearly 20 years of wearing hearing aids and continuing progressive loss, I’ve started to consider CI’s. Finding your story, so eloquently written, has convinced me to take the next step. I’ve been terrified of losing what little natural hearing remains by having surgery. The quality of my life continues to diminish due to the inadequacy of hearing aids and technological adaptive equipment; like you I’ve tried it all. I make my living by listening to people’s stories and have found it more and more difficult to be in session with them. I often feel embarrased by missing important pieces of information because I can’t understand what has been said.
I would love to speak with you further about the process. I live in southern Maine, just 90 minutes north of Boston.
Thank you, Terry, for this beautiful piece. I have been there watching during your years of worsening hearing, and then considering and then doing the CI’s. The change is so wonderful; that constant intense effort is gone from your face.
I want to thank you for being a wonderful mentor to me when I lost a third of my hearing. Nobody explains that your brain has to learn to use hearing aids; they don’t come all ready to work, like glasses. You taught me how to help my brain translate my new hearing aids; how it learns to give you what you want to hear–how voices become warm instead of tinny, for instance, with nothing changing except your brain figured it out. You taught me to respect how tiring it is to strain to hear all the time, and strain to lipread, and how the way your brain is working so hard for you is tiring too; so to consider the need for quiet and rest. You sympathize with what seem like little things (but aren’t): you sent me to your careful and smart audiologist, to ‘tune’ my hearing aids so the fan in my computer is no longer amplified to a maddening roar. You’re a wonderful teacher and I’m so glad you are sharing now your suggestions and insights with the rest of us.
Karen
Beautiful and inspiring.
Terry
I don’t know that I can add to the wonderful comments of your faithful and loving readers but WOW. I was riveted by your story and can say only Mazel Tov at your stellar success with CI’s. And Yasher Koach to you for sharing such important information. I have a brother in law who I will recommend CI’s to now that I’ve read your story. Be we’ll Terry and ride like the wind! Yemina
Terry, thank you so much for your wonderfully written story. As a nurse, I’ve worked with many folks who are hard of hearing, but your words made their challenge so much more clear than anything I’ve heard or read before. I was also thankful to learn more about how CIs work. There have been so many wonderful medical advances in the 35 years since I went to college–it’s hard to keep up with them…
I’m very, very happy for you!
Wonderful!
You tell your story beautifully and it bought a tear to my eyes reading it. You help us understand this problem so much more fully and along with everyone else I am so happy for your improvement and may it continue. I know you will be so happy with Tonka and he is beautiful too.
Thank you for your informational read. It must have been difficult when your boys were babies. You’re a strong beautiful person!
Thank you for sharing such a personal journey. I’m so grateful that your hearing is once again giving you joy! I enjoy reading your blog so much! I rarely miss a day :) Thank you for ALL your stories…
What a wonderful story. Congratulations on your success!
With everyone running around for the holiday and not stopping to smell the roses they all might just get something out of your life’s challenge. I have RA and never thought of my self as indifferent but angry sometimes, yes. No one can imagine what is going on with someone else unless they have their own challenge to work through. I so want some chickens this spring but everyone is telling me I can’t handle the care they need. I am so happy for you and Tonka. He’s wonderful. I had a small farmette like you have for years. I hatched my own chicks, loved my horses, had a beautiful dog, even hatched golden pheasants at one time. Now I only have sheep that live on someone elses farm. Nothing warms my heart more then to see you get the animals you so love. I understand how loss of hearing would stop you. Now you can even hear Tonka snort as he nuzzles you. Maybe I won’t end up with my chicks but I’ll enjoy seeing you with Tonka and know you are hearing him and the sounds of the world around you as you ride him. Thanks to all the wonderful Doctor’s and those doing research!
It makes me happy that you can live vicariously through my website. Sorry that I can’t have a HorseCam for you!
54 posts and they are still coming in! See what an inspiration you are! You are like a CI Poster child, Terry!
Thank you for sharing! I knew NOTHING about CI’s, but you have explained so much! I truly believe God puts information in front of us; thru people, media, and written word, so that we can pass it on to those we love, when they are faced with a need. I am studying this info., just in case! Thanks, again!
Beautiful post. I´m very happy for you. I know I don´t know you, but I´m so used to read your stuff that I feel like we´re old friends.
Well deserved, Terry.