What a Cochlear Implant is NOT

and What It IS!

My sister happened to be in town this past week for a meeting. She lives in the Ft. Worth area, and I only get to see her once a year if I’m lucky!

I’m sure you can tell from the picture that she is my baby sister, and is a great deal younger than I. Although we do not know each other like we did when we were growing up, we still have a lot of history growing up on a ranch in southeastern Colorado. In spite of distance and busy lives, nothing changes the fact that we are sisters.

Since I lost my hearing over a long period of time, and since my family is spread out all over the U.S., most did not realize or understand what the annual changes in my hearing loss actually meant. It came as rather a surprise to them I believe when I could no longer talk on the phone to them, and an even bigger surprise when they learned I planned to get a cochlear implant.

I don’t consider myself a “poor communicator” and yet sometimes I communicate certain things very poorly. I think that sometimes because my immediate family and I know so much about hearing loss, that the people in my life also know a great deal of information about hearing loss. Since I was sort of also classified as “the whiner” in my family growing up, I also think that this affected the way I chose to relay information about my progressive hearing loss. As I acquired the disability of hearing loss over time as an adult, I worked extra hard at keeping how difficult the transition was for me to go from a person with normal hearing to a person who couldn’t hear at all.

One of these days I’m going to have to hammer out a book or something. There would likely be some chapters that even my immediate family might be surprised at… things that I kept between myself and God.

My sister loves me and I love her. But Diane doesn’t understand hearing loss. She has her own family, job, friends and LIFE. It’s difficult to research and discover things about something that seems “fuzzy” to you… something that you don’t clearly understand, when it isn’t happening to you. So I don’t fault the question she asked when we were talking this past week. I think it’s a question that many people think, but just don’t ask. Taking advantage of the fact that we are sisters and that she is not the type to sit around wondering when she can just ask… she point blank asked me,

“So? If you have a cochlear implant now, why do you need a dog? Didn’t that (as she gestured towards my CI and bling) fix you?”

I think many people think a CI “fixes” your hearing. They may think that now that you have a cochlear implant, you have perfect hearing and are “normal”. I realize that most people talk about how things are different by discussing things “alike” first… followed by how things are “different”. However, since I believe there are many misconceptions about CI’s, I wanted to start with what they are NOT.

What it’s NOT:

1. A cochlear implant does not make you Jamie Sommers. You are not the Bionic Woman (or man) and can hear things 4.2 miles away.

2. A cochlear implant does not make you a lightening rod. Someone with a cochlear implant is not more likely to be struck by lightening than someone else. Sure! If you are playing outside in a lightening storm on a hill without cover, holding a golf club in your hands then yes… you might be hit by lightening. But it’s not because you have a cochlear implant in your head.

3. A cochlear implant does not provide crystal clear hearing where the recipient never has to say “huh?” again.

4. A cochlear implant’s magnetic coil is not a “plug”. I realized my sister must have thought this when she winced as I took it off to show her. There is not an opening to your brain, it doesn’t “plug in” like a cord in an electrical socket. There are no gruesome wires or frankensteinish types of protruding pieces of metal.

5. A cochlear implant does not make someone begin to have balance problems… usually. I have heard that it can happen, and that is why good surgeons always run a battery of tests which include ways to detect if you have vertigo problems already. I have always been “dizzy” (though never blond) and I almost failed the tests at Johns Hopkins on vertigo. I have a mild version of Meniere’s disease, and looking back I think it began at around 18 years old. I did not begin losing my hearing until I was 25. I have a history of accidents a mile long. Every emergency room doctor knows me by name. I break bones, fall a great deal, and run into things. I actually have no memory of NOT being this way. Growing up I was told I was “clumsy”. My CI didn’t make me dizzy. I was already dizzy.

6. A cochlear implant does not allow you to hear every kind of environmental sound. There are still things I don’t hear at all, or don’t hear well.

What it IS:

1. A cochlear implant is a bionic prosthesis type of device surgical implanted into your cochlear array. One is “mapped” frequently in the beginning (sort of like being programmed) and then usually once a year for life after receiving one. Each mapping allows adjustments to enable you to hear things more clearly, and electrodes are tested and checked.

2. A cochlear implant can be worn anywhere except in water. One cannot scuba dive after receiving a CI (due to pressure). My particular implant device, the Nucleus Freedom, is “splash resistant”. I can get caught in a rain storm without an umbrella, or hop into the shower accidentally without removing it and not destroy it. Certainly, should those things happen I would promptly put it in my Dry ‘n Store (an electronic drying device), nor would I ever do those things on purpose. I mean I DO shower on purpose, but I don’t jump into the shower with my CI on with the intent of destroying it. (In hindsight in writing this I thought I should assure my readers that I DO shower, and do so ON PURPOSE).

One can swim with a CI, but not with the outside components attached. Water tends to ruin them. As long as you are not scuba diving, you can still enjoy swimming, snorkeling, and rain showers. You just “play smart” and take care of the device that houses the controller, etc.

3. A cochlear implant allows you to hear again… when you have reached the point that you no longer can. Hearing again and “hearing perfectly” are two different things. One doesn’t grouch that they aren’t “normal” when they can hear after they could NOT. I can talk on the phone now (in a quiet room with my own phone), I can hear in church, talk to people face-to-face and in small groups. I do not do well in restaurants, large groups, concerts, etc., without special assistance from infra-red or FM assistive listening devices. A “loop” is my favorite way to hear in these “tough” environments. You walk into the room, switch your CI to t-coil, and you “hear” without the background noise.

4. The magnetic coil of my implant connects to another magnet securely embedded in my skull. The magnets connect very well through my skin. Nothing shows, and I try very hard to not appear “gorey”. Grin! I’m rather proud of the fact, that I’m probably one of the few people I know who can lean into the refrigerator and “lose” their ears.

Weirdest place I ever lost my CI? At the grocery story in the pickle isle. I was leaning down to try and find the specific type of pickles my family likes, and “whoosh” off my CI went to connect to the metal lid of a pickle jar. As I was desperately looking for my CI, a lady came by and smiled and said,

“Are you pregnant honey? Looking for pickles?”

I was so astonished that I replied, “No! I’m looking for my ear!”

Needless to say she shrieked and ran.

5. A cochlear implant can sometimes mask tinnitus… another common symptom and side effect of progressive hearing loss. It is a “hum” or ringing sound in your ears. The CI can mask this effect and keep you from hearing it. I have also met some people, however, who now have tinnitus (when they remove their CI) and they did not have it before.

I’m use to the ringing. When I take my CI off at night the ringing begins. But it isn’t bothersome for me, and I go right to sleep. When hearing the ringing, I no longer shout, “Hello? Who’s there?”

6. My cochlear implant and my CI experience is not like anyone else’s. Everyone who has a CI has a unique experience. I still hear new things everyday. But my experience, what I can hear and not hear, is as unique as my “map”. No two recipients are alike. I think that is why I think an audiologist specializing in CI’s would be such a fascinating job!

I hope my little “list” has helped!

Denise Portis
©2007 Hearing Loss Diary


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Walk4Hearing

National Capital Area
2007 Walk4Hearing
Damascus Recreational Park
October 28th

My chapter of the Hearing Loss Association of America walked in one of the 15 walks of the Walk4Hearing. It was so exciting to see so many people in one place walking for hearing loss awareness! In my opinion, raising awareness is almost as important as raising money. If hearing loss is ever to become a matter of national concern, it must be put on the “radar” of our country’s legislators, press, and communities.

Sometimes people have a hearing loss and they think the only groups available to help them are those who are culturally Deaf and sign. Very few Americans lose their hearing and learn sign language to replace the way they once communicated. Most do not realize that there are a variety of technologies to maximize what they hear, no matter what caused their hearing loss. Some think that their level of hearing loss is “too mild” or “too severe”. They don’t realize that there are communication strategies and tips that will help! They may feel like they are alone, and that no one understands. HLAA provides information, education, advocacy and support to people with hearing loss and their families.

It is so important to know you are not alone. At the starting line of the Walk on Sunday it was such a thrill to see the big rainbow of team colors, smiling faces and variety of ages in people who care about hearing loss! To know you aren’t alone and that others understand… talk about a priceless moment in time!

Denise Portis
©2007 Hearing Loss Diary

Stroll ‘n Roll for Fidos For Freedom


This past Saturday, my family and I participated in the 9th annual Stroll ‘n Roll for Fidos For Freedom. Chloe, my hearing assistance dog, graduated from Fidos and she and I are in ongoing follow-up training several times a month.

Kyersten, my 17 year old, is also involved in their therapy dog program with her Chinese Crested, Pegasus. She also assists in trainings with the service dogs and assistance dogs.

Fidos has come to play an important role in the life of our family. Chloe not only hears for me, but provides balance assistance as well. She alerts to the doorbell, door knock, my name being called, my cell phone, my alarm clock, the kitchen timer (which is used to alert me that classes are almost over so that I can address last minute questions from my students, cooking, the clothes dryer, etc.) She also “braces” when I need to stand up from a seated position on the floor, and picks up dropped items like keys, pens, pencils, even books and cell phones!

We have been actively involved in Fidos since April of 2006. I have learned a great deal not only about dogs, but about other disability groups and needs as well. We had a great time!

Fidos has many wonderful programs where people of all ages can be involved. They and their volunteers are actively involved in their local community… making a difference! Check them out at : Fidos For Freedom, Inc.

Denise Portis

Between a Rock and a Hard Place

Between a Rock and a Hard Place

I’ve had a tough week. I’m “stuck between a rock and a hard place”.

If I’ve had a really busy week with a great deal going on, I don’t consider that a tough week.

When I spend a week “butting heads” with two wonderful but “learning to be independent” teenagers who just happen to belong to me, I don’t consider that a tough week.

If I have a week where I rarely seem to see my often over-worked husband, I don’t consider that a tough week.

I didn’t even consider the week that our dishwasher quit washing, our attic ventilation fan… quit (ummm…) venting, and our doggie door quit opening to allow a canine who really needed to GO, a tough week! (Ok, ok! That was a pretty TOUGH week!)

But I just experienced a week where I felt like I really didn’t belong… ANYWHERE. Sometimes it’s really tough to be late-deafened. I hate to complain, and to me the worst thing a person with an acquired disability can do is to whine about their life! I much prefer to look on the “bright side”. I want to be the kind of person who helps others, and who sees the glass as “half full”. Besides, I really believe that you cannot make a difference to other people if you don’t have the right attitude! I desperately want to make a difference!

“Stuck between a rock and a hard place”

In my classes, we often discuss the meaning of English idioms and colloquial expressions. When translating phrases like these, it is best to translate the meaning… not the words. So I’m often digging in and trying to discover what some of the phrases that we use a great deal actually mean. Phrases like “stuck between a rock and a hard place”, require some investigation. One online phrase dictionary explains that it means: “forced to make a choice between two equally undesirable options.”

I feel “stuck between a rock and a hard place”. I don’t “belong” in either population group! My daughter (who is almost 18 years old), told me several years ago that she was really hurt when I would say, “You can’t understand. You’re a hearing person”. She said that it made her feel as if she were another species; that I was somehow claiming we weren’t even the same flesh and blood. She reminded me that I’m her mother and that she’s my daughter. Whatever level of hearing your ears has — doesn’t change that. (Geesh, sometimes kids can be pretty smart!)

Even though she is RIGHT, the fact remains that I am neither a person with normal hearing, nor am I Deaf. I am deaf (with a small “d”) and cannot hear in a conventional way. Yet I am not Deaf (with a capital “D”) which means that I am not culturally Deaf and use sign language as my primary means of communicating.

I’ve had a tough week. (I’m getting redundant, aren’t I?) I have been gently arguing the case of my peers… to an organization in Frederick County who will only provide services and assistance to groups who are culturally Deaf. If you don’t sign, you are “up a creek”, basically. I can’t go into a lot of detail because of the type of folks who “happen across my blog”. Being married to whom I’m married to keeps me from speaking my mind on my very own blog sometimes. I’m ok with those parameters, as it has probably kept me from saying something I shouldn’t! Suffice it to say that it has been made very clear to me this week that I am not “Deaf enough”. I’ve the email exchanges to prove it.

I have discovered that wearing visible reminders of my hearing loss usually helps me. I wear my hair up so that people can see my cochlear implant bling, and bright red/orange hearing aid ear mold. However, if I’m not going to class, church, Bible study, or to school, I have to wear my hair down to cover all of that up. There are a great number of Deaf in Frederick. Most of the time I love it, and have met some wonderful people. Talking with them helps my receptive skills! But most of the time those visible reminders draw some pretty sharp criticisms. I’ve been cussed out (in sign), called names, and been talked about and belittled by Deaf parents to their children. Cochlear implants and the choice to remain in the hearing world is not a very popular thing to do in my area. Certainly I have met some Deaf who treat me like a normal person, and are glad that I even sign. Sometimes, they are only confused and after discovering I sign, ask “What’s wrong with being Deaf? Why did you change that?” After explaining that my cochlear implant allows me to stay in the hearing world in which I was born, that it enables me to communicate the way I was first taught language, and it allows me to interact with my hearing family, they concede it was “right for me”.

The same day I received the final email from this organization that I am trying to “gently persuade”… asking that they help my group of people who are oral with hearing loss, I was shopping in Target. I stopped to look at some clothing, when a mother with a daughter who looked to be about 10 years old, walked around me to a rack of clothing next to where I was standing. I heard the daughter ask, “Mom, why does that lady have a dog with her? She can see!”

I didn’t turn to look right away as the mother immediately replied, “the dog’s vest says it’s a hearing dog. She sure is cute! I wish we could ask to pet her, but the Deaf don’t speak well enough to understand. They don’t like hearing people”. By having a hearing dog it automatically meant that I wasn’t “like them”. I couldn’t be talked too in a normal way. It meant that I was “mean”.

I know I must have stiffened, because Chloe turned to look at me as if to say, “Excuse me? Why are you so tense?” I think because I had just received the kind of email that made me feel like I didn’t belong with the “popular” hearing loss community, I felt like I’d been struck in the face. I realized I don’t belong in the hearing world either. (You can’t hear the wail in my voice right now, but believe me it’s there!) I can’t simply be a person with hearing loss who hears better with a cochlear implant, and lives more independently due to the fact that I pay attention to a dog trained to hear for me.

I know the mother and daughter were very shocked when I turned to scoot by them and calmly said, “Excuse me! ‘Chloe, FOLLOW, please!’ “ If I had looked back I probably would have seen their mouths hanging open.

I came home feeling sorry for myself. I hate that feeling. I don’t like being the kind of person who feels sorry for themselves. I felt like I didn’t belong anywhere. The Deaf world doesn’t identify with me and seems to feel threatened by my bionics. The hearing world assumes I cannot communicate with them. I was mad. (I’m big enough to admit that)

However, this morning I had an email from a friend in L.A., who relayed something that happened to her over the weekend. It reminded me that I don’t live these ‘frustrations’ alone.

I had another email from a list serve to which I belong called, “HOH-LD News”. It is a mail list/newsletter email that goes about about once a week targeted specifically to hard-of-hearing, late-deafened individuals. Larry Sivertson and his wife are two individuals who are making things happen on the west coast and “beyond”. This list serve is only one of many things they do. They are an encouragement to me.

These kinds of things are an affirmation to me in many ways. I am NOT alone. It is an unfortunate reality that there are over 34 million Americans with hearing loss in the U.S. It is a fortunate reality that there are some who “reach out” in support, education, and advocacy. Without them I would feel alone.

It’s a new week.

Denise Portis
©2007 Hearing Loss Diary

Walk4Hearing 2007

2006 Walk4Hearing in PA
The 2007 Walk4Hearing will be held on October 28th! If you feel led to give, please visit my webpage at this link.
Please know that no amount given is “too small”! Every dollar goes towards helping us raise awareness about hearing loss!

National Capital Area Walk4Hearing

October 28, 2007

Did you know that tennis shoes make a scuffing noise when you walk on a paved walking trail? Did you know that fallen leaves rustle as the breeze picks them up in a miniature whirlwind and then gently sits them back down? Did you know that acorns make a small clicking sound as they bounce down the trunk of a tree and fall to the ground below? So many small and seemingly innocuous sounds are not even acknowledged by people who have normal hearing. However, when I began to “hear again” after the activation of my Nucleus Freedom cochlear implant, these sounds were as if I had heard them for the first time.

 

I lost my hearing over the period of twelve years. I’m certain that these wonderful small sounds were lost to me long before I began having trouble with voices. I participated in the 2006 Walk4Hearing in Pennsylvania with my family. I had only been activated for 13 months at the time of the Walk, and I remember the experience much differently than my family recollects. They remember what it was like to walk along side of hundreds of individuals who care about hearing loss. They remember the conversations and fellowship of caring people with a shared passion. Certainly, I enjoyed being with people and having conversations. However, the memories imprinted on my mind and heart were the sounds I heard on that Walk that I had not heard in years.

 

I remember stopping at a water station with a group of “walkers”, and listening with wide-eyed wonder at the sound of numerous water bottles gurgling in unison as thirsts were quenched. Sounds that I recall are sounds that I found I had to ask help from others to identify.

 

“What’s that sound? Shhh! Everyone quiet… keep walking… what’s that sound?”

 

Would you believe our clothing makes a sound? Our team had six walkers – all wearing shorts – and all making a sound of friction as we hustled along the walking trail.

 

Prior to the activation of my Nucleus Freedom, these sounds would have been nonexistent for me. These sounds were things even my family with normal hearing did not realize were lost to me. Once again hearing voices, allowing free-flowing conversation, was the sound that one hopes to regain as a cochlear implant recipient. The small sounds that are ignored by people with normal hearing are an extra bonus!

 

The 2007 Walk4Hearing for the National Capital Area is in the autumn. I know that as my team walks along the trails at Damascus Recreational Park, I will be hearing some new things. It is very likely that I will ask for help in identifying new sounds. “What’s that sound?” is a favorite question of most Nucleus Freedom recipients who are activated as adults.

 

The Walk4Hearing is an organized and national fundraising event to help raise money for local HLAA chapters, and the national organization that is the Hearing Loss Association of America. As important as raising money is to the organization, raising awareness is even more so. It is through the Hearing Loss Association of America that I first learned that “there is life after hearing loss”. If it had not been for HLAA, I would not have learned about cochlear implants from a consumer’s point of view. I would not have had the opportunity to meet people who had been implanted, and were hearing again.

 

I am walking with the Maryland Dream Team, and am very excited about the event. We will be walking on Sunday, October 28th. I am already practically “tense” with excitement over what I will be hearing. A day does not go by that I do not hear something new. It is my hope that the Walk4Hearing will put hearing loss on the national radar. As the event grows each and every year, I feel certain it will do just that!

Crickets and Cicadas

I made 15 teenager’s mouths drop open last week. It seems a cricket had made it’s way into my classroom somewhere, and decided to wait for a break in my lecture to begin singing… or chirping… or cricket-ting. Frankly I have no idea what it’s called when a cricket makes noise but it was definitely doing just that. I know my eyes must have been as big as saucers as I managed to stutter out, “What is THAT?”

When informed that is was a cricket, it was all I could do not to drop everything and start looking for it, in order to get a concert of the sound up close and personal! As a matter of fact, I came awfully close to enlisting the help of my class to do just that. Why?

Well, perhaps it’s because I’ve only been hearing things like this for a very short amount of time. I heard the chorus of cicadas this September, which is the best I have heard them since my initial cochlear implant activation in 2005. The nice thing about cicadas, however, is they leave behind a memento… a shell… something I can count as an “ebenezer” of sorts. Crickets don’t leave that type of keepsake behind. I think they simply die – grin! In the Old Testament, Samuel set up an “ebenezer” as a memorial stone, in order that the Israelites would remember how God routed the Philistines from the area.

It’s October, and I cannot hardly believe it. Where did the summer go? It’s autumn already and the leaves are beginning to turn colors and fall to the ground. Crickets and Cicadas seem to be everywhere. They are both seem eager to “wax melodious”, and yet are so different, aren’t they?

Are you a cricket or cicada? Tricky question really. All of us would like to be the kind of person that we “leave behind a lasting impression”… an ebenezer… a memorial. Have you ever thought about how you would be remembered? When your “song” is finished and winter’s snow covers the frozen ground, will you find that you are a cricket or a cicada?

DeniseP
©2007 Hearing Loss Diary



L’Eggo my Eggo


Did you know that the Eggo waffle has been around since the 1960’s? My two teenagers would consider that pretty “scary sick” or “wicked” that I actually know that little tidbit. (Isn’t it great that when you’ve homeschooled for nine years, your kids are immune to the current fashionable “lingo” that teenagers use?) In reality, it’s only because I’ve been around since the mid-60’s.

I love the commercials and they’ve changed very little over the years. (Even though I found a really cool website that allows the little ones to play waffle games. Where were these things when we were kids? Click here to check it out.)

It may be great fun to hang over the toaster and see who can scream “L’eggo My Eggo“! However, my teens had a conversation not to long ago about how it really teaches, “You who weigheth more can knock a sibling on their caboose, to attain yonder steaming waffle”. I’d like to think as a homeschool mom that my kids would choose to discuss something that gave evidence that homeschooling really pays off… like who invented the toaster? … or, just what ARE the ingredients in an Eggo waffle? (Don’t look… You’ll be scared spitless!) But discussing the fact that treating each other with respect is NOT exactly what is taught through Eggos and sticky syrup is “ok” by me too. When you have two teenagers, you take the “teachable moments” as they come.

You’d think since we homeschool that it would be very easy for me to teach my now sixteen and seventeen year old children to “play nice”, and “look to the needs” of others… “to offer up a fresh, hot Eggo to a half-asleep sister”. But we are bombarded from numerous “it’s mine” type of sources. Movies, television, video games, the internet, youth groups, family reunions… and the breakfast table, all can negatively influence how we view the ownership of an “incoming waffle”.

Something we do is try to be “sneaky nice”. We try to be unselfish in ways that are not readily apparent. Leaving a note on the plate with one remaining cookie that says, “Here kid brother, I have unselfishly left this one remaining cookie for YOU, in order that you will live long and prosper”, doesn’t count. It has to be something that only you and God know. We’ve had a great time trying to “guess” who has blessed us “unaware”. Just a few “anti-Eggo” character building ideas –
1. Bring in the mail without being asked
2. Lug your sister’s heavy backback from the top of the stairs where SHE left it after co-op classes, to her desk for her.
3. Get out a cereal bowl for the other person without being asked. They are asleep on their place mat anyway.
4. STICK AN EGGO IN THE TOASTER as you leave the kitchen and let another’s nose lead them to the “squares of gold”

I think if we all actually tried hard enough, we could all come up with “anti-Eggo” random acts of kindness.

DeniseP
©2007 Hearing Loss Diary