I'm Not So Tough

I thought I was tough. Turns out - when it comes to my hearing - I’m not so tough. The thought of being without sound for even one day brings tears. Wouldn’t you think after losing my hearing little by little over 30 years I would be able to bear a day or two? Not so. 

Sunday night I noticed that my left processor kept cutting out. I discovered that the wire on my headpiece had a crack in it. It had been my practice to always have a backup on hand, but I discovered that I had forgotten to order a backup. Because I had a meeting on Tuesday that was important to me, I felt a little panic. 

Getting creative, I decided to charge up the batteries to my body processor which I had not worn in a very, very long time. The flashing light told me the processor was getting power yet I had no sound. Switching through the programs I finally got something on the last one. It then dawned on me that all but one of my programs was set on 100% T-mic and the body processor does not have a T-mic, therefore no sound. Settling on the one program that did work, I wore my body processor on the left side and a BTE with a poorly working headpiece on the right. This would get me through Monday and I would immediately order new headpieces. I knew I probably wouldn’t get them before my meeting on Tuesday, but with prayer and tape, I managed to wear both my Harmony processors and get through the meeting and that day.

Wednesday I started watching for a Federal Express delivery. When nothing came by 4:30 pm my husband, Paul, encouraged me to call customer service again and ask about my order. To my shock and dismay, the order had been put on hold due to new regulations and probably some confusion about my immediate need. As the customer service person was explaining equipment changes, the new procedures and how long it could take, I was overcome with emotion. I gave the phone to Paul, my rock. I am so blessed to have a husband who has been willing to come to my rescue and give me rest, or let me cry.

The customer service representative and insurance assistant stayed with us on the phone figuring out how to make sure I have sound as soon as possible. Replacement headpieces should be here by Friday and the order process for Naida has been initiated. With the new parts on their way, I have rallied and have much to look forward to as the Naida has some great new features I am excited to try. Still - I am not as tough as I thought - and I will never be without backup parts again!

Grandma's Toy Box

Sometimes it takes me awhile to pick up after the grandkids leave. I think I like the feeling of them being here for awhile after they have left. Since the vacuuming needed to be done, I finally got around to picking up the few toys that were left out. Tossing them into the toy bin, I heard the electronic banjo chime a tune. These toys shut off automatically, so I just walked away to another chore. 

In the next room I was sorting through linens when I heard the banjo playing notes again. It has been a few years since the first time my toy box for the grandkids made noise, but I do remember that first time! We have a goofy looking rolling toy that giggles. For some reason that toy started giggling while it was just sitting in the toy box. I was sitting in my favorite chair folding clothes late in the evening when this happened. Scared the dickens out of me! I was so shook, it didn’t take me long to dig to the bottom of the toy box and pull that thing out. I had to make sure that was the culprit of that eery laughing sound. When the banjo went off again, I was pretty calm, having been through this before.

I continued to pick up around the room when the banjo went off again. Okay, I thought, this one needs to be turned off. I went over to the toy bin, pulled out the banjo and slid the switch to off. Thank goodness it has an off switch. While I was doing that, I heard Mickey Mouse announce himself. Oh boy! When pulling out the banjo, I had activated the Mickey Mouse guitar. Okay, I decided to shut that one off too - only it doesn’t have an off switch. I have to trust it. 

Believe it or not - while writing this, the toys in the toy box actually shifted. The noise practically made me jump out of my chair! I’m beginning to wonder what the toys do when I’m not here. Grandma’s toy box - a different Toy Story.

Getting off the Roller Coaster

Something wonderful happens to people after they have had their cochlear implants for a while. They get on with life!

As a late-deafened adult and cochlear implant recipient, I know the emotional roller coaster of losing one’s hearing; the life and relationship issues that go with that; and finally the high of getting sound back. Definitely “emotional roller coaster” is the right descriptive phrase.

Have you ever ridden a roller coaster? What can you do when you are riding one? About all you can do is ride. You might talk with the person next to you, laugh, or yell, or scream, but you won’t be composing a report or holding a meeting.

As my hearing loss progressed, I participated in life less and less. I quit going to movies, parties or anything that involved a large noisy group or a large room that might echo sound. I stopped using the phone and pretty much limited my communication to family and close friends. Anything beyond that was intimidating, like standing up in a roller coaster. If I had to be on this ride, then I was going to stay seated in my little box and hang on so I felt safe. I might look at the scenery once in a while, but it was easier not to.

I like the feeling of getting off a roller coaster. That first step of putting solid ground under your feet feels so reassuring. I love looking around and being able to walk away and put some distance between me and a ride that I don’t like.

With my cochlear implants, I can get off the ride. I’ve got the ground under my feet again. I can walk away and join the world for the day and I don’t have to get back on until the sun is down and the roller coaster sleeps.

It is fun though, especially when you don’t like a ride, to go on the ride with friends. I attended my first Hearing Loss Association of America (HLAA) convention this year in June. It was a wonderful experience and the first time I really enjoyed the ride, the hearing loss roller coaster. When we get on the roller coaster together, we hug, we smile, we share the ride and we laugh!

I have noticed that many of the friends I have made through my blog, the Bionic Ear Association, the HLAA and the online forum, Hearing Journey, are getting off the roller coaster and walking away. They have other things to do and lives to live. What a wonderful thing this is!

A Book Review - "Wired for Sound"

I recently finished reading Wired for Sound: a journey into hearing by Beverly Biderman. Beverly writes about her personal experiences as a person with severe to profound hearing loss who chooses to pursue receiving a cochlear implant when it becomes available to her. An excellent author, she also writes beyond her own experience and eloquently shares information about deaf issues as well as technical issues regarding hearing with cochlear implants. Some of the technical information is becoming outdated as this book was written over ten years ago, but as a history of the development of cochlear implants most of the information still applies. This is a very good book that covers a lot of territory regarding deafness and regaining sound. I recommend this book for anyone contemplating getting a cochlear implant.

Fast Talkers

I know that I’m fortunate that I am a cochlear implant user that can use the phone and is no longer afraid to answer it. I really do as well as most hearing people. Today I spoke with a person that spoke so fast I don’t know how anybody could understand her.

Really fast talking should be against the law. These people should be cited and fined for saying more than eight syllables per second and should not be allowed to work a business phone if they talk so fast you think they may be speaking in a different language.

When I could not understand the name of the company she was calling from, I felt like I was having flashbacks to the days when I started giving up on communicating on the phone. She wanted my business ID number, so I figured it was an employee of one of my clients and I had to make sure I knew who I was talking to before I gave out this sensitive information.

I gave in to something I now do only when I have to and told her I hear with cochlear implants and that I needed her to slow down. “Okay,” she said and then she said the name of her company again - and I missed it. Unh. I hate this. She explained what form she needed filled out and I got that. Did I have a fax number she could send it to? “Yes, I do,” I said and then I asked her again to tell me what company she was calling from. Out it came and I could practically see it speed past my ears and out of reach before I could make out what it was. Aaaaahhhhh! I was getting really frustrated, but I tried to keep a smile on my face and calmly asked her again to tell me the name of her company. Swish, there it went and I had to ask her again. I took a breath and politely told her I missed it again, could she please say it one more time and then I focused and hoped I would catch it this time. She said it again and slowed it down just enough that I got the first two words and I said, “Oh! it’s ____ _____ _____. Thank You.” What a relief.

This is the stuff that wears on my confidence. Fortunately there was quite a bit of the conversation that I did get, so I know that it wasn’t all me. Sometimes I wonder, can they really listen and hear as fast as they can talk?

Ski Boots

It was a lot of fun skiing last Wednesday. The temperatures were great, not too cold or too warm so you weren’t sweating in your ski gear.

I hadn’t been skiing since the spring of 2008 when Paul and I were at Whistler. Also, I hadn’t used my own gear for several years choosing instead to rent when traveling a long ways and flying. Since my gear hadn’t seen a lot of time on the slopes, I figured it would be fine to use it at this local ski site.

When getting ready for our ski outing, Jana tried on her ski boots and discovered that they were too small. She decided to rent boots. When we got to Welch Village, Jana and I suited up and grabbed our gear, me with my boots, skis and poles and Jana with just her skis and poles.

We trudged up to the ski racks, leaving our skis and poles and then headed for the ticket window to purchase lift tickets and Jana’s rental boots. Jana discovered it was an all or nothing proposition with the rental of equipment. She had to get skis and poles too, as they would not adjust her skis to their boots. We decided that she would go get her rentals and I would take her skis and poles back to the car while she was getting set up.

I grabbed Jana’s skis and poles from the ski rack and headed back towards the parking lot. About six steps after leaving Jana, I heard a loud crack. While trying to figure out what made the noise, I glanced ahead of me and saw a weird shaped piece of white plastic skitter to a stop about ten feet in front of me. “Oh! My!” I said as I realized it was the toe of my right ski boot! Change of plans I thought as I picked up the toe of my boot and then promptly turned around to go tell Jana that I would be renting too.

She was just about to start filling out the form at the counter. I called her name and she turned around to look. Holding up the toe of my boot, I said, “Jana, I’m renting too!” She came over to see what had happened. We laughed a little and then decided we would both go back to the car to regroup.

About three steps outside of the rental building, the other boot started to crack up. Not wanting to leave any pieces of sharp plastic laying around, I stooped to pick up the chips as they fell. We turned the corner and walked a few more steps when the left toe went flying out in front of us. I began to wonder if I would have anything left on my feet when we found the car. Then the giggles started and every few steps I took, more of my boots fell off! We walked one aisle too far. As I was walking back between the cars, finally with my car in sight, the bottom fell out of my left foot. Feeling like I had nothing but stockings on my feet, we were finally there. I peeled off the remains of my ski boots. After the laughter, we made a new plan and headed back to the ticket office for a rental package.

Beautiful Blogger Award

Beautiful Blogger Award & Nominations!

Speak Up Librarian nominated me for this award and I am honored. Thank you Speak Up Librarian.

Now here's my job:
The rules:
1) Thank the person who nominated me for this award.
2) Copy the award & place it on my blog.
3) Link to the person who nominated me for this award.
4) Tell us 7 interesting things about yourself.
5) Nominate 7 bloggers.
6) Post links to the 7 blogs I nominate.

Okay, here we go. I may be repeating some nominations, but it can't be helped.

(1) Speak Up Librarian - It is always a joy to read her reviews of books or television shows, check out her pictures and share her thoughts about the challenges of being hearing impaired.

(2) Mog Renewed - Has shared her journey from choosing to get a cochlear implant, waiting for the day and now discovering the sound it brings her. She punctuates this with delightful pictures and ancedotes.

(3) Jelly - You know you will get cupcakes, but the variety is a constant surprise!

(4) My CI is Amazing - A friend that I met on another forum, she shares her experience and offers her caring support to others with the same hearing challenges.

(5) Laura's Medical Journey - Another brave woman facing challenges with a great attitude and sense of humor.

(6) Surround Sound - A cochlear implant user and busy Mom that shares her hearing experiences and supports others in their hearing journeys.

(7) Elliott's Journey - Ellliott's mom does a great job of sharing their journey as her adorable son learns and lives life with his cochlear implants.

"Tell us 7 interesting things about yourself"

Interesting, hhmmm, is that one of those things that's in the eyes of the beholder?

(1) I was a Brownie, then a Girl Scout and finally a Cadet.

(2) I sang in the church and school choirs until my last year in high school when I failed to make the Concert Choir.

(3) I wanted to be a Wave in the Navy, but by the age of 18 my hearing loss had progressed to the point where I couldn't pass the physical.

(4) I had a motorcycle when I was 19.

(5) After a van hit me when I was driving my motorcycle, I traded it in for a Fiat X19 (2 seater sports car) - I loved that car!

(6) From the time I started thinking I would be a mother someday, I always knew I would have three girls. I just knew.

(7) The man I married was my kindergarten sweetheart. He kissed me at the drinking fountain and I told the teacher!

Christmas Preparations

The Christmas lights keep blowing fuses
The house is a dusty mess
Even if I’m weary
I will not take any rest

I must power clean and decorate
The house is waiting for me
To give it shine and polish
And the glow of a Christmas tree

Christmas Day is coming
And I certainly won’t be bored
With lots of family here
To celebrate the birth of our Lord.

Young and old will gather
In the largest room
We will remember the birth of Jesus
This day is coming soon

So I begin my preparations
In anticipation of the fun
To celebrate His coming
The Truth, the Light, The One.

This Is Who I Am

Sometimes a dream can seem so real that when you wake up you wonder if it happened. I had a dream like that last night and what I dreamt is impossible, but it seemed so real. I dreamt that my husband was leaving for work, on his way down the stair he said over his shoulder, “Good-bye,” and I responded, “Good-bye,” and then it hit me, I didn’t have my processors on. I said, “I heard that!” and Paul, knowing that I wasn’t hooked up, turned right around and came back upstairs. He was talking to me and I was repeating back to him what he was saying almost word for word. I would miss one now and then, but still we were thinking how could this be? 

After I was completely awake and thinking about this dream I realized it was like dreams I had after I quit smoking. I would dream that I smoked and then in the morning wonder if I did. I didn’t want to start again so I would be relieved that it was just a dream. I guess we dream about what we miss and I think I was missing those spontaneous moments that happen at the beginning or end of the day when I might not have my hearing prothesis on.

This dream surprised me and it feels like it came at an odd time. On the last Saturday we spent at our cabin before closing it up for the winter season, I felt like I had crossed a threshold. I got up that morning and Paul was preparing to take the boat to the storage place. He indicated that he was leaving and I knew I had at least an hour to myself. My normal routine in the morning is to get ready for the day and get my hearing on first thing. On this particular morning, knowing I didn’t need to communicate with anyone for awhile, I decided to relax in my comfortable pajamas, and linger over breakfast and coffee while I enjoyed the vision of the lake outside my window. Sitting in the silence, I came to realize that I have finally found peace with my deafness. 

It is okay. This is who I am.

I am a woman who puts on her hearing in the morning

and takes it off at night. 

I am a woman who sleeps in total silence

and wakes to the morning light. 

When I look out the window to see what kind of day it will be, 

I may notice the birds in the branches of a nearby tree.

I need not wonder if they are chirping or singing a song,

even though I knew their silence many years long.

It is now in my blessings a matter of choice,

If I want to hear birdsongs or the beautiful human voice.

The sounds of life are mine to have no matter the place,

And the silence is mine to choose, to reject or embrace.

Weeds!

On Saturday I found myself thinking about sounds that I had never thought about before. Weeding a garden has sounds of its own. Weeds with a shallow root don’t make a lot of noise but you can hear the soil drop off and sprinkle back to the ground in a soft patter. Most weeds though have a deeper root that is solidly embedded in the soil. As I wrapped my gloved fingers around the base of the unwanted plant and tugged, it would make a soft cracking noise as it began to give up its hold on the soil and then with a loud snap would give its final release. Craaacckckck snap! Craaacckckck snap! I heard over and over as I released my pretty flowers from the encroaching weeds. 

I spent most of Saturday doing that as we had been gone a lot and my gardens had become a poor sight. They are looking better now and still in need of work. I’m making plans for moving perennials this fall which seems to be fast approaching. I would love to figure out a way to make my flower gardens maintenance free; however, I did find the weeding to be therapeutic as I put the unpleasant vegetation into the bin.

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.

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.”

My Hearing Loss

Recently on Hearing Journey, one of the moderators asked participants to post to the question, "How did you lose your hearing?" My original article about my hearing loss is titled "How Many Times Do I Have To Grieve?" and is the first post on this blog. I felt it is too long to post on Hearing Journey. I have written about my loss several times and decided to do something different this time. Below is the poem I wrote:

My Hearing Loss

Although it was suspected, when I was just a girl,
It wasn’t checked until later, how much I could hear.
At the Junior High School, when I was a young teen,
Machines were brought for testing and a mass screening.
One day they called a list of names, over the intercom,
It was a mix of boys and girls, and not real long.
We gathered with the counselor, to each of us he spoke,
Asking if we knew, our hearing might be broke.
Because I didn’t know, it had to be told,
He gave me a letter, for my parents to hold.
I put it in my math book, and walked home slow,
I was carrying news, that made me feel low.
My mother said to me, “What took you so long?”
I handed her the letter, feeling like a Blue’s song.
She read it very carefully, then she made a plan,
She called the local clinic, and I would see a man.
He looked into my ears and throat, and whispered across the room,
Sent me for hearing tests, I could feel the gloom.
He said I had a hearing loss, but would it stay the same?
Only time would tell, this was not a game.
The school years passed, and I did my best,
Sitting at the front of class, studying for the tests.
Then it was time to check, my hearing once again,
I had plans for my life, and I was ready to begin.
I went to see the son of the man, young Dr. Young,
And what he had to tell me, really stung.
Your hearing is going, there is more gone,
We can’t help you, and we don’t know how long.
I want to enlist - my country I want to serve!
He said, “They won’t take you, because of your hearing nerve.”
Now what do I do, what jobs can I take?
He said, “Stay away from loud noises, for your hearing’s sake.”
So I worked for the city, putting tickets on cars,
And I thought, this won’t take me very far.
Then I met my husband, my wonder, my love,
We married and had children, gifts from above.
I could still hear the babies, when they cried in the night,
But not the birds that sang, before they took flight.
New doctors gave me hope, with a hearing aid, then two,
So I could hear my children, as they grew.
Then one day, my hearing was so small,
I thought that my eyes, would have to do it all.
But something came along, it was kind of new,
And the doctor said, “Maybe this will work for you.”
You will have to have surgery, go under the knife,
But if you are willing, it could change your life.
I said, “I want to do this, I really want to hear.”
And the surgery was scheduled, that very year.
There were several implants, companies had made,
The doctor said, “Pick one, before your surgery day.”
So I read and I studied, and I asked around,
I picked Advanced Bionics, to bring me sound.
In 2001, after all the strife,
It was a new beginning, for my hearing life.
The rain and the birds, are a wonder to hear,
I love this miracle, called the bionic ear.