Hello to my fellow cochlear implant receivers, family and friends.

After eight years musing about the many experiences I have had as a person with a cochlear implant, I am signing off and closing down my blog at the end of this month.

To my friends and family, thank you for your support throughout these eight years with your encouraging comments on my posts and delight in what I have been able to do with this magical and miraculous piece of equipment.

To those of you with cochlear implants, I have enjoyed writing with many of you in mind and have collected quite a repository of stories that will be the foundation for my book if I ever get down to actually writing it! I have also enjoyed getting to know many of you and hearing your stories as well. I wish you well on your hearing journey and thank you for being a part of mine.


Still adapting – my brain that is

In November 2017 I wrote on my blog that after five years with my cochlear implant I was still hearing new sounds. I am delighted to share with you that even though it is now two years older, my brain continues to adapt and helps me hear sounds in environments where there was a lot of difficulty before. Let me tell you about it.

Earlier this year I gave a presentation to a group of about 50 people on a long-term project that I and a team had been working on at the church I attend. We were in a room that is probably the most difficult of all the rooms at the church to hear in and half-way through the session we turned the (very noisy) air conditioning unit on. As luck would have it, it was one of the first warm days of spring.

In addition to a brief update on our work, we arranged for small group discussions plus feedback and questions from the floor. I was very anxious about the latter two elements.

My business before I retired involved facilitating training sessions, but they were mostly with groups of a size I could manage – usually 12 to 15 people. And I always set up the room so I could walk around and get closer to each participant to lip read more easily. This time, not only was the size of the group four times what I was used to, but the set up was several rows of chairs facing the front to accommodate the numbers in the room. So the only people I could safely lip read were those in the first few rows.

I was so anxious about this that I enlisted a member of our project team to take care of getting the ideas from everyone down on paper as I was concerned that I would not be able to hear them. I do have an F/M system that acts like a microphone but the range is limited and would certainly not reach the back rows.

Well, quelle surprise! I not only heard remarks from the back of the room; I also heard some asides which are generally softer. It really didn’t sink in until a few days later when I was reviewing the ideas from the event and realized, “I heard this.” I honestly didn’t think I could manage with this large a crowd. Now I know I can!

I have had my cochlear implant for seven years now. I am 74 years old yet my brain seems to think it is 21! For all of you wondering if it is possible, as the saying goes, to “teach an old dog new tricks”, I can tell you without doubt that it is. To the cochlear implant crowd reading this blog, especially those of you new to this experience, take heart!

Being cared for

It has been about a year since I last wrote in my blog and I want to let you know about a new experience I am about to have early next week. On Monday I will be getting a new knee and hope to be dancing in the streets by next spring! But first, I need to go through with the surgery as well as a stay of a few days at the hospital. To put this in perspective, the last time I stayed overnight in a hospital I was five years old and having my tonsils out. After all these years, this is a new and somewhat anxious time for me.

But I am being cared for already. The patient navigator in the knee and hip unit at the hospital will wait with me while I am in the inner sanctum – where you go after you have been poked and prodded and are enrobed in the lovely hospital gown and stretchy blue slippers. She will do this because I have a fear of not hearing my name being called. Even though I will still have both my hearing aid and Cochlear implant processor on, nerves tend to take over at this point and all senses deaden a bit. So she will be my ears. The anesthesiologist is ready to cope with the whistling that comes when my hearing aid is encased in the shower cap I will be wearing and both hearing aid and processor will be taped to my head so they don’t fall off. I am not used to all this attention! Both staff and volunteers at the hospital have an excellent knowledge of the challenges of various disabilities and they know how to help. I know this just from my recent pre op meetings to get ready for this venture.

So I am staying overnight – probably two. I don’t wear my hearing devices when I sleep. In fact it is frowned on by the professionals. So I worried about being able to hear staff at night. I mentioned this first to my surgeon who instantly understood the problem and joked that we would not want staff to be yelling at me, especially when I wouldn’t be able to hear them in any case. I have a friend whose husband had a profound hearing loss and was in hospital for a while before he died a couple of years ago. He too was struggling, so his son found him a Boogie Board – it is like an electronic etch and sketch for those of you who remember this toy. Jill has lent me David’s Boogie Board to use when I am literally in the dark so I can pass notes back and forth with those taking care of me. This has eased my mind considerably and the patient navigator (who looks after you before, during and after surgery) thought it a terrific invention.

The aim of the hospital staff is to make all patients as comfortable as possible, but perhaps especially those that need a little extra care. They surely have with me.

My brain is still learning

This post is especially for those with cochlear implants who may be either new to the experience or perhaps feeling that they have reached the maximum capacity of their hearing. Others may enjoy the post too.

I had been told shortly after receiving my cochlear implant that the brain will continue to respond to new sounds coming through the electrodes in my head, providing me with ever-richer sound experiences. After five years, I can say this is definitely true. A couple of for instances…

I was having dinner with friends in a pub when my hearing aid battery died. I had forgotten to put replacement batteries in my purse when I changed it so now had no hearing in this ear. I had to depend on my cochlear implant alone. While I often wear just my implant when at home to encourage it to work harder for me, I had not up to this point attempted to hear a conversation in a noisy pub with only my implant. But I had no choice. And to my surprise, I managed just fine. This particular experience gives me hope, as I anticipate one of these years the hearing I still have left and use a hearing aid to boost, will fade to silence and I will need to rely solely on the implant in my other ear to communicate.

A few weeks ago I was at a preview of an exhibition of artist Florine Stettheimer’s work at the Art Gallery of Ontario. The evening started with a discussion between the curator for this event and another artist. I was just a little too far away to lip read, so relied on hearing alone. The speakers enunciated well and I was amazed at how much I could actually hear. I have avoided going to lectures for many years as often they are given in places, like this particular auditorium, that don’t have infrared systems for enhancing sound. These systems tie the microphone directly into my hearing apparatus and give me a fighting chance to hear the speakers. This time I was able to understand the conversation, although there was no extra help. I have missed the intellectual stimulation and the group connections that experiences like these provide. It is nice to know that I no longer need to be restricted to those venues with infrared, but can enjoy lectures pretty much anywhere.

The proof of the pudding that my brain is still learning new sounds? I had my annual hearing test recently. The sounds I heard with my cochlear implant this time had increased by 15% over last year. Who knows what other new sound experiences there might be? To all my cochlear implant friends, take heart! Apparently the learning never stops.

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.

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.