Mentors

Smiles and laughter, voices strong
A room full of friends with a common bond
Relationships growing, new and old
Lives changing from quiet to bold
Brought together in life
Because of stories we share
Paying it forward because we care
A new hand needs holding
A tear has been shed
We reach out and answer
To concerns we have read
Comfort our goal and hope we bring
To the pain and sadness the voices ring
We know the hardships
And we have come through
So we offer our knowledge to those that are new
Raising each other
To new heights we soar
Because when you give
You get back even more


Yesterday I returned from a weekend training session for Bionic Ear Association mentors. It was held at the Advanced Bionics offices in Valencia, CA. Cochlear implant recipients along with parents of children with cochlear implants were brought together to learn more: about AB’s implants; the numbers of people with profound to severe hearing loss; and how we can educate and help others with hearing issues.

The weekend carried a lot of impact, touching me in many ways. There was the impact of meeting people in person that I had only met through the internet. It took a lot of hugging to get caught up! Then there was the impact of making new connections, all of them strong. In the trainings, the impact of the up-to-date statistics regarding hearing loss was eye-opening and being given tools to share more effectively was exciting. Visiting the plant where the cochlear implants are made had an impact all its own. I haven’t yet discovered a word to describe how it felt to be where they built the devices that allow me to hear.

It was a wonderful opportunity and I am grateful for the people I met and all that I learned. Now I hope to put old and new knowledge to good use mentoring others with hearing loss.

Not a Minute Too Soon

I can hear the ticking of the clock on the wall

I can hear your footsteps as you walk down the hall

I can hear the laughter of the children in their room

The sounds of life came back to me not a minute too soon


My sadness overwhelmed me as my ears began to die
I often asked the Lord, if He could tell me why
But then He showed me there was hope up ahead
And to a hearing miracle my heart and life were led

I sat alone in silence for a period of time
The Lord, He said to me, “There is no reason why
But the lessons you will learn, and the things that you will know
Will settle in your mind and make your heart grow”

So I waited for the Lord to show me the way
I trusted He would take me where my heart was meant to stay
He walked me from the silence and back to the sound
And here I am again, my life is being found

I can hear the ticking of the clock on the wall
I can hear your footsteps as you walk down the hall
I can hear the laughter of the children in their room
The sounds of life came back to me not a minute too soon

Found Sound

It was a beautiful day and I decided to take advantage of it and go for walk. I grabbed my camera with the hope of getting some good pictures and headed towards a park with a waterfall. Unfortunately, when I got to the park, the light was too low for anything special and the waterfall was not running yet.

All was not lost. Although the pictures I did take aren’t very good, the memory of that walk will stay with me always. I’ll tell you why. Just before I got to the park, I heard the beautiful whistle of a bird – a bird call that I had not singled out before. I could hear birds with one implant, but with two there is a finer quality allowing me to distinguish different birds. Even more awesome than hearing the bird, I automatically turned to where I thought the sound was coming from to see the bird, and there it was right in my line of vision. It was automatic and I turned in the right direction. I’m still having a hard time believing it. I took a picture of the bird, but before I could get a good focus, it flew away.

Feeling just wonderful and wishing there were more birds to hear, I continued to the park. Even though the waterfall had no water and the sun was getting low I took a few pictures anyway and then headed home.

As I emerged from the park, I heard a beautiful tinkling in the breeze and once again I turned toward the sound. I was thrilled to see a chime hanging on the back of the house I was looking at because now I knew for sure I had direction. And I was hearing a chime!

Birds, chimes – it amazes me. My hearing loss started in the high tones and birds were one of the first sounds I lost. To have these sounds back, the sounds that have been gone the longest (more than 25 years), is fabulous, amazing, awesome, great. Being able to locate the sound is frosting on the cake!!!

Mapping Back

I had a mapping on December 16th, 2008. The allergy issue is still present and I was taking medications to control the symptoms when I was mapped that day. Because I was feeling good and my symptoms were under control, my audiologist suggested that I try the map I had before the allergies started to affect my hearing in October. She turned it on and to my surprise and my audi’s too, it sounded good. Good enough to keep. We made some volume adjustments and made that my main map. She then made a crowd noise map from that one for slot 2 and finally for slot 3, she recommended we keep the map we made when my allergy symptoms had flared. I agreed, but I was thinking I probably wouldn’t need it. Ha! To my surprise, I turned it on that very evening. I was relaxing in front of a movie on the TV when the sound became loud and distorted sounding. I was trying to figure out what was going on when I realized that the allergy medication I had taken that day had probably worn off. I was only half way through the movie and irritated that my hearing had changed that much when I remembered I had the other map in slot 3. Switching to the other map made enough of a difference that I was able to enjoy the rest of the movie. This was a better alternative than taking more medication at the end of the day when I would rather not (it sometimes affects my sleep cycle). I was glad I had the map as an option.

I’m not one to switch from map to map very often, but it is nice to have choices when I think of using them. I need to be more thoughtful about controlling my hearing in different situations and hopefully I will be more mindful of my options in the coming year.

Happy New Year!

Clear Headed


When I put my CIs on this morning, the volume seemed much louder and I had to turn them down. My hearing is much clearer today as my allergy symptoms also seem to be subsiding. I’m still taking medication and now maybe I can begin to ease off of it.

I don’t know exactly what I’m allergic to. The onset was late August and early September, when the change in the foliage kicks off. The leaves are all down now and we have been experiencing cooler weather, rain and snow.

Since the maps I currently have were done while I was experiencing allergic reactions, I may need to have them redone as my symptoms go away. I have noticed that the sound is not as good as it was before all of this started. It seems to have a bit of a reverberating affect, like you can get with a guitar string.

Yes, allergies do affect my hearing.

About ten days ago, my hearing changed. It sounded like Darth Vader was on my left shoulder and if I was somewhere with background noise, like a grocery store, it sounded like there was a train passing very near by. After posting what I was experiencing here on Hearing Journey, I took Kim and Evelyn’s advise and made an appointment with my audiologist which I had yesterday.

There is some history leading up to this change and it answers some questions about why this had not come up before. I got my second implant a year ago on 10/10/2007 and was hooked-up on 10/17/2007, so I have had regular mappings this past year. Also, last fall, I decided I wanted to make some healthy changes and getting off of the allergy medication that I was taking every day was one of them along with some dietary changes. I managed to stop taking Claritin every day and did not use allergy medication for the rest of the winter, spring and this recent summer. About two weeks ago, I began having allergy symptoms and I was in need of relief, so I started taking Claritin again to get through this season. About four days after I started taking the medication, my hearing changed dramatically to what I described above. I continued to take the Claritin and I saw Dr. Gifford yesterday. When I gave her my allergy history and the changes I was experiencing, she said that normally this would have confused her, but she had just come back from a seminar where this was one of the subjects that was discussed. She said there have been cases of people with cochlear implants complaining of their hearing changing – enough to complain about it – when they have colds or allergies or are taking medications that treat colds or allergies. When you bypass most of what makes a person hear, you wonder how can this be? It has to do with the proximity of the electrode to our cochlea and the cochlea membranes can fluctuate when we have allergies, colds or take medication to relieve symptoms from these conditions.

We went ahead and went through the mapping process. We made some changes, but nothing really big. It was hard to get rid of all of the echoing sound. Also, my audiologist was concerned that when I get through this allergy season, I might not like these current maps, but if that is the case, we will adjust them again.

This morning, I again took Claritin and because my face was still hurting I also took Sudafed and Ibuprofen. With the added decongestant, things were sounding a bit better. I decided to keep a journal about the medication I’m taking and how things sound.

I’m not exactly sure what I’m allergic to. I live in Southern Minnesota and when we go to our cabin which is about 250 miles north, I usually feel better. Whatever it is, it comes out in the fall.

I am frustrated and I hope I will be able to get my hearing back to where it was before this started.

Changes or Allergies?

For about a week now, my hearing has been different. I suffer from seasonal allergies and they really flared up about ten days ago and I had to start taking medication for some relief. A few days after I started taking the allergy medicine, my hearing started to sort of echo, mostly in the lower tones. Sometimes it is so bad that is sounds like I have Darth Vader talking behind me and if I’m in a store or a place where there is a lot of background noise, it sounds like there is a train rumbling through.

I have an appointment for a mapping coming up this week. I’m looking forward to seeing my audiologist. I don’t know if the allergies have anything to do with how I’m hearing or if I just need a new map. It is one year this week since I got my second implant, so it could very well be my hearing is still changing and adjusting. I kind of hope it is not the allergies, because if my reactions can change my hearing this much, it might be challenging to figure out how to adjust for that much fluctuation. But, if necessary, adjust I will because that is what we do!

Mapping Improves Music

After several months since a mapping, I had started to turn the volume up on my second implant. I was happy to begin to realize some growth with my newly implanted side. So last week on August 5th, I had an appointment with my audiologist. This time there was significant change in my map on the right side, an implant that I have had for nine months. We also mapped the left side, which I have had for seven years, and there was very little change there.

After my appointment, I went to visit family. Initially, there is some adjustment time after a mapping and I hadn’t yet realized the significance of the changes made. After a few hours of visiting with my daughter and her family, I headed home. I started my 40 minute drive and decided to see how music sounded with my new maps. I popped the “Eagles Greatist Hits” CD into the player and started listening. After a couple of songs I realized that it was sounding really good. The “Eagles” was a group I listened to quite a bit before my hearing loss was significant and I realized that my memory of this music might be enhancing what I thought I was hearing. I decided I wanted to give my new sound more of a test. Then I remembered that I had a CD my daughter had given me for Christmas that I had only played a couple of times because I was disappointed with how it sounded. The CD is “Ultimate Manilow.” I thought to myself, “Let’s see if Barry Manilow sounds any better.” It was amazing. Now I know what his fans fuss about. I could hear the orchestra music in tune and even make out some of the instruments. I could understand more of the words in the vocal. What I was hearing was pure pleasure.

You know what I will be doing in my spare time or when I’m in the car – listening to music, reliving old tunes and learning new.

I Write the Songs
Written by: Bruce Johnston

I’ve been alive forever, and I wrote the very first song
I put the words and the melodies together
I am music and I write the songs

I write the songs that make the whole world sing
I write the songs of love and special things
I write the songs that make the young girls cry
I write the songs, I write the songs

My home lies deep within you
And I’ve got my own place in your soul
Now, when I look out through your eyes
I’m young again, even though I’m very old

Oh my music makes you dance
And gives you spirit to take a chance
And I wrote some rock ‘n’ roll so you can move
Music fills your heart
Well, that’s a real fine place to start
It’s from me it’s for you
It’s from you, it’s for me
It’s a worldwide symphony

Going Bilateral

I started thinking about going bilateral about a year after getting a cochlear implant in my left ear. I thought about it off and on and really didn’t get serious about it until the residual hearing in my right ear was so minimal that there wasn’t anything there that was of use to me. That was just over five years after getting my left ear implant. Along with my residual hearing having dwindled down to next to nothing, there were things that had started to bother me, such as not having any sense of direction regarding where sound was coming from, or always having to direct conversation to my left side.

In the spring of 2007 I started the process by telling my audiologist that I was ready to pursue the second implant. She had recently tested my right ear, so all the medical documentation was ready and the request was then sent in to my insurance. Approval quickly followed.

My first cochlear implant was a life changing experience for me. To have that much sound was a great relief from the struggles I experienced in communicating. I had become an excellent lip reader, but that takes a lot of energy and I was getting very tired. With the sound I received from the implant, I didn’t have to work so hard at reading lips. Over time, I learned to listen again and understand more of what I hear.

Because my deafness was severe, the amount of sound I received on one side from the implant seemed like a lot and at first I had the sensation of surround sound. Later, I started to notice that I could not tell where sound was coming from. Eventually I started turning my left side towards sounds that I wanted to hear. Finally, I felt blank on my right side and I was always trying to adjust for that.

My first implant was in 2001 and I wasn’t ready for the second until 2007. I was reluctant to part with the little bit of hearing that I had in my right ear. Bilateral implantation was something I had discussed with audiologists on several occasions, so I knew that it was being researched and the studies were showing that deaf people with bilateral implants did better than those with just one. When contemplating getting a second cochlear implant, I wondered what the next big leap in hearing technology would be. Did I want to wait for it? Ultimately, I decided that I want to live each day to its fullest now, including hearing the best that I can with today’s technology.

My husband and I met with the surgeon in early July and he would have scheduled the surgery that very summer, but for various reasons, we scheduled the surgery for that fall.

On October 10, 2007, I had my second cochlear implant surgery, to give me sound on my right side. I was hooked up one week later, on the 17th. Immediately, I felt more whole. It was an interesting feeling because I didn’t know that I wasn’t feeling whole, but during the mapping when the sound on the new implant was turned off, the sensation of silence on my right side was so strong it felt like half my world had been turned off.

I have been hearing bilaterally for 9 months now and I love it. Along with an improved understanding of sound in general, I have a better sense of direction, and like the old slogan for Doublemint gum, it is, “Double the pleasure, double the fun.” How I hear with two cochlear implants is still changing and improving, and may continue to change for some time. My right ear has a lot to recover and my left ear wants to run the show. I do have to practice some therapy by shutting off the left side to make the right side do some work and get better. As long as there is room for improvement, I will keep trying to make it better because I don’t want to miss anything! I love to hear.