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
Bird Talk
My sister went with me to visit our parents and I picked her up as it was on the way from where I live. In the past, I would have handed her the keys and asked her to drive so we could visit. Before my cochlear implants, I would do that so I could read lips, which is difficult to do when you are keeping your eyes on the road, so I would often ask whomever I was with to drive. After my first cochlear implant, which is on my left side, I would be arranging people so I could hear them easier or using a nifty little remote microphone that I would have pinned to my sister’s clothing and then plugged it into my behind the ear (BTE) piece so I could hear her. Those were adjustments I needed to make before being bilateral. Wow – being bilateral. I drove, we talked, no problems. 
I had one other CI moment that was fun. The weather was warming and we had a spring like day, so my sister, my mother and I walked over to a nearby mall. While we were there, we stopped in a pet store to look at the puppies. As I was oohing and aahing over the cute little animals, I could hear birds chirping behind me. I turned around to see a beautiful yellow cockatiel singing to me. I puckered up and gave it a whistle back and he returned his song, so I whistled again. We were going back and forth like that and I was thoroughly enjoying being able to hear him and hear myself whistle back, when I glanced over my shoulder and noticed my mother watching us and smiling. Not too long ago, my mother shared with me that she is still amazed at what my bionic ears do for me. I love that she was able to witness that moment and share the joy.
My mother called…
My mother called this weekend and shared with me that she couldn’t hear the dial tone on the phone as well with her left ear as she could with her right and she was also hearing a funny shwooshing sound in her left ear. She said it had just started a few days ago. Up until this point, she has enjoyed excellent hearing.
I have heard many stories about causes of hearing loss having participated in forums for hearing impaired. I told my mother that she needed to be seen by a doctor right away, first to rule out wax or fluid build up. If those things are ruled out, then they might need to treat her for conditions that need immediate treatment to save the hearing.
My mother is healthy at 73, but not assertive. She did see her doctor today and there was no wax or fluid. The doctor couldn’t see anything. She made an appointment for her to see an ENT in 17 days. When my mother called me back to report, I was upset. I said, “You have to be seen today.” She called her doctor back and they managed to move it up 7 days. In the mean time, I called my doctor’s nurse and told her what was going on. She told me what I knew to be right. My mother needed to be seen right away. As I was preparing to call my mother to get the name of her doctor and nurse, so I could get on the phone with these people, my mother called back with news. The nurse had called her back and made room on the schedule for her, but she had to come in right away.
She had already been there and been tested when we connected on the phone. Unfortunately her test showed a significant drop in the left ear. Her right ear remains normal. This did allow them to see that it was not a slow age related decline and they needed to consider what else might be going on, so next she saw the doctor.
The doctor talked to her about the window of treatment that may reverse the loss. Hopefully they were within the time frame of the window. He talked about it being 48 hours and the information I found on the internet indicated that it may be as long as two weeks. The doctor treated her with a steroid shot in the eardrum and wants to test her again in one week. Now we wait and hope.
At one point she said to me, “I don’t want to lose more of my hearing.” I sensed she had a hard time saying those words to me. I told her I don’t want her to lose any more of her hearing either. I love my cochlear implants, but I don’t want my mother to need them too. However, if it did come to that – Thank God they have been invented.
I will be driving the 400 miles to my parent’s house for a visit tomorrow. I will be trying to make the trip more often this year. They are traveling less and I need to see them more.
Moving on to the good…
Poetry helped me dump my sad feelings when I was losing my hearing. So did smoking. I used to blow my negative feelings away in a puff of smoke. I stopped that eight years ago. Poetry is healthier.
To read my writing, you would think I’m a glass-half-empty kind of person. Really I’m not. My mother once said that I was born with rose-colored glasses on. It is kind of like “the tears of a clown, when there is no one around.” I can write about my sadness, resentment and anger, but if you walk into the room I’m in, I will smile and enjoy your company exuding happiness and well wishes.
I love people. I used to be a cosmetologist. Making people feel good with a new haircut, or fresh color was a joy. I had a lot of children customers because I was so patient with them, their parents would bring them back to me. When I started to miss conversation with the children and I would see confusion on their faces, it broke my heart. I came to realize that they had said something I missed. Often and typical of a child, when I asked them what they had said, they wouldn’t bother to repeat it. The last thing I wanted to do was make a child feel insignificant.
My time as a cosmetologist was brief, about three years. My main career was being a mother to our three daughters. I have made a lot of shifts in my life, trying to adjust to my hearing situation. The changes were always made with a positive attitude.
One of the things I have discovered by sharing what I have written, is that I’m not alone with my feelings. People have shared with me that I helped them to discover what they were feeling when they were having trouble putting a name to it. I don’t want to bring people down. I want to buoy them up and leave them feeling good. But sometimes we have to allow ourselves to feel our sadness or anger so we can move on to the good.
Poems
Our local newspaper is starting to publish poetry, so I decided to look at some of my poems to see if I had anything that I want to send in. I realized that I had a couple that I had not posted on my blog that relate to hearing loss, so I thought I would post them.
What Will Be The Music?
In the early morning
When the sun is rising high
I can’t hear the birds sing
at that beautiful blue sky.
And when the leaves are falling softly
and settling on the ground
In the autumn of my life
I cannot hear the sound.
But my eyes take in the colors
and the beauty of the birds
And I search my mind for the memories
of everything I’ve heard.
For what will be the music
in the silence of my life?
Is it the soaring of the bird
in its beautiful soft flight?
Do The Birds Still Sing?
Do the birds still sing?
I cannot tell.
Do telephones ring?
I don’t hear the bell.
Do children sing?
I know they yell.
The sound is fading
and I’m not old.
Why does it go?
Nobody knows.
In the silence
what will I find?
A flower blooms
in quiet time.
Find the flower
for me to see,
Blooming quietly.
God help me
I am so scared.
I’m afraid I’ll forget
what I have heard.
In the silence will I know,
all the music I love so?
The voices of my caring friends,
will this all come to a silent end?
How Would You Know, My Feelings Didn’t Show
Stoic: accepting pains or hardships calmly or without complaint; not feeling or showing emotion.
I wrote a poem called “How Could You Not Know?” that came from my feelings regarding my hearing loss and music, particularly at family gatherings. I grew up in a musical family and until I was 17 I sang in choirs at church and school. It was at that point that my hearing loss became noticeable and affected what I could hear of my own voice while singing with a group, so I stopped singing in choir and group situations.
Often at family gatherings after the meal, family members that played guitar or violin would take out their instruments and begin playing and singing. Because of my hearing loss, I never attempted to join in and over time it became increasingly difficult to enjoy listening to the music. I suppose at first I was frustrated for the reason that I felt I couldn’t participate because of my impaired hearing. And there was jealousy of those who could and did. Later, when I had hearing aids it stopped sounding good, so it became my habit to simply slip away into some corner, visit with somebody who didn’t care about the music, and ignore the entertainment.
After I wrote the poem, “How Could You Not Know?” I printed a copy and sent it with a letter to my parents. When my mother and I talked about it, I was a bit taken aback when she said, “I didn’t know music was that important to you.” In my surprise, I did not respond, but simply changed the subject. I felt a little hurt, she is my mother – how could she not know?
I decided to give my feelings some time and thought. Later that day, I found I was seriously looking for an answer to that question. How was it that my mother did not know how I felt? And I realized I didn’t tell her. I didn’t show my feelings to her or very many others for that matter. I had been stoic where my hearing loss was concerned.
I denied my hearing loss in other ways as well and put on a rather good show. If someone told a joke and I missed the punch line, I often laughed when everyone else laughed instead of admitting that I didn’t hear it. I smiled and nodded and mimicked their emotion and I got away with it most of the time. What else could I do? I couldn’t run around being sad and angry all the time. And nobody wants to be the downer at a good party.
When you have experienced bringing a happy group down, you stop doing what it was that you did. You stop participating in group games where missing an answer might lose one for the team and simply excuse yourself to refill your drink or get another snack. If you can’t participate or share in the happy fellowship, you slip away quietly to a corner or go home. Happy gatherings are not the place where you show your hardships. So how would anybody know how I felt if I was masking my emotions with a ready smile – being stoic?
I used to tell my girls when they were growing up, “If you don’t tell me what is wrong, I can’t find a way to help.” Sometimes it is hard to tell, hard to find a way. Or you think, why talk about it, they can’t do anything anyway. What would it have mattered if my family knew how hard it was for me to watch them enjoying their music? I certainly didn’t want them to stop. I didn’t want to take away their joy, so I was stoic.
All of that is fading into the past now as I enjoy listening to music again with my cochlear implants. I’m still having a hard time joining in with the family music. It feels like I’m expected to listen and enjoy when my heart really wants to sing, but I don’t yet have the confidence that I can match my voice with the notes. I missed out for so many years, it’s not like I can jump right in.
Writing poetry is my music.
It makes it so I can let my feelings show
It picks me up when I’m feeling low
It makes my world feel alright
It comforts me at night
It releases me from an emotional hold
It allows me to lighten that load
It makes my world happy and bright
It brings me sunshine and moonlight
It puts some things away for me
It allows me freedom to see
It releases me from all that’s past
It moves me on, I’m free at last.
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!
Do we really mean to say "congratulations"?
Do we really mean to say “congratulations” to someone who has just qualified for a cochlear implant? I don’t mean any offense to the people that say this, because I know the spirit it which the “congratulations” are given, but I do want to talk about this for a bit.
I remember when I qualified and the first person that congratulated me. She was someone I worked with and she new this was something I was hoping for – but it did not feel right to be congratulated. I arrived to the point of qualifying for a cochlear implant with very mixed emotions and a large part was sadness. My hearing was so far gone this was my only hope and the last resort.
Whenever I see someone congratulating another for qualifying, I cringe a little bit. I will wish them well and I will pray for them and send them positive thoughts as they pursue better hearing and sound, but I can’t bring myself to say “congratulations.” After all, getting to this point was a loss of the hearing they may have had or never had at all.
Maybe I’m being too sensitive and maybe it is okay when someone who has a cochlear implant congratulates someone that qualifies. It is like saying, “Welcome to the community.” For myself, that is what I will say, “Welcome to the community. I wish you well as you pursue better hearing.”
