Category: Challenge

But it’s MY problem!

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Although Chloe’s main “job” is to hear for me and to assist me when my balance is “off” any particular day, she also has come to believe that she is the SQUIRREL POLICE. Now that the weather has finally started to act like it’s Winter, her beloved backdoor where she watches the squirrels is now closed. It hasn’t stopped her from her diligent stance of protection when she isn’t alerting for me. Because my door was getting scratched up, I became an “enabler”. I provided a chair for her to sit on so that she could continue her look-out duties. (It doesn’t hurt that the paint on my door is now safe!) I’ve never told her that “protecting Denise from the squirrels” was her problem, but Chloe has made it her problem.

Chloe is a dog. (I just wanted to clear that up for anyone in doubt!) She acts like a dog, and has instincts like a dog. She has taken it upon herself to be the squirrel police for our family. She has made it her problem. I can assure her I’ve got it “handled”, and it doesn’t matter. The squirrels are her problem.

The squirrels are going to act like squirrels. They are hungry and many are pregnant. As long as someone keeps putting out corn for them, they will continue to come… in spite of the red furry sentinel they see on the other side of the glass! Chloe will continue to worry that the squirrels are on our deck, even if I continue to reassure her that this isn’t part of her job. Since she isn’t losing sleep over it, and since she eats and acts normally, I let her act like a dog in this regard.

I know people with hearing loss who take it on themselves to feel responsible for the way other people act regarding their hearing loss. They can attend workshops, read “self-help” books, and attend support groups and chapter meetings to learn that they are only responsible for the way that they respond to things. Don’t get me wrong… I believe that it’s important that we “gently educate” others about hearing loss. This will help the next person who doesn’t hear well that our “chosen student” comes into contact with in the future. However, many people with hearing loss make it their problem when someone continues to react in a negative way.

Our first HLAA chapter meeting after the holidays, had me overhearing some stories from members about how hard it was to interact with family members who have never truly accepted the fact that they have a hearing loss. They continue to communicate poorly in spite of the pleas and encouragement from their family member with hearing loss. They talk with their mouths full, or their hands in front of their mouth. They turn away to look at something else while talking, instead of making eye contact with the individual with hearing loss. Perhaps their house reverberated with the sound of Christmas music and the person chose to have a conversation next to the stereo!

Sometimes you have to come to the realization that some people do not fully understand in spite of your coaching. Worse? Maybe they don’t care. However, this doesn’t mean that it is your problem. It’s their problem. Don’t you have enough problems of your own? Why take on the problems of someone else?

It’s OK to even get a little miffed at this person. You may even “wish” hearing loss on them for just one day! But at the end of YOUR day, leave the problem where it belongs! With them! You can’t control them, or force them to “get it” in communicating with someone with a hearing loss. Don’t make their problem, your problem.

Chloe adopted a problem that wasn’t assigned to her. But she is acting on instinct, and her new problem doesn’t cause her any harm. When we take on the problem of someone’s poor attitude about our hearing loss, we don’t handle it well at all! It wasn’t meant to be ours! Our blood pressure goes up, we harbor “ill will”, and we think negative thoughts. We can’t curl up in our doggie bed at night and go right to sleep.

Do your best, and let other’s deal with their own problems!

Denise Portis
©2008 Hearing Loss Diary


If You Could Bottle It…

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I love candles and lotions/soaps. So I was tickled to death that one of my students gave me lotion for a Christmas present right before break this last semester.

It’s been sitting on my dresser, and I’ve been using it for over a month now. My husband noticed it for the first time this past week, however and exclaimed:

“Darn! They bottle this stuff now?”

I looked at him in confusion and he gestured to the hand cream bottle…

“They package, and sell this stuff now?”

Well I like to claim that my hearing loss makes me a little slow in picking up a “play on words”, but I have a feeling that sarcasm and dry wit was something lost on me long before I acquired a hearing loss.

Wouldn’t it be great if intelligence, and other characteristics, skills and gifts could be bottled and “applied when desired”?

People with hearing loss are often treated like they are less intelligent. I suppose I consider myself blessed in that I have not ever felt as though my students, peers, co-workers, or family members have ever treated me like my hearing loss meant that I processed things less “intelligently” than others. However, I am a member of numerous forums, list serves and online support groups. Not a week goes by where someone has not posted that they were treated like a “2nd class citizen”, or “less intelligent” due to their disability.

I think sometimes it is a misunderstanding. People we know many times try to change the WAY that they say things in order to communicate effectively. They may noticeably slow their speech down, or over-enunciate words in an effort to help us understand what they are saying to us. Perhaps people with hearing loss are hyper-sensitive to facial expression or perceived exasperation and misconstrue those with the very best of intentions.

My family and I have had the wonderful opportunity to attend large conventions whose target audience is people with hearing loss. They have come to me in astonishment before after having overheard one person with hearing loss make fun of another with hearing loss. What astonished them is how everyone thought it was funny! As people with normal hearing, they would never dream of teasing someone about anything to do with their hearing loss. (Nor should they, as it likely would result in hurt feelings). I “poke fun” at myself a great deal. In many ways, I believe this helps put people at ease about my disability. I have to admit, however, that if I don’t know someone very well and they should tease me about my disability… I will walk away hurt.

Perhaps I should look for a hand cream that is called “Understanding”. We all should apply more of that.

Denise Portis
©2008 Hearing Loss Diary

Line Of Sight

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My husband and I figured something out driving home from church today. At a certain stoplight that seems to always be RED when we get to it, Chloe begins growling and barking. Up until today, I had not figured out what it was that had her so rattled.

Normally, I would ask one of my teens in the backseat, “What is she looking at?” However, they drive to church by themselves as they have to get there earlier than we do as they are “greeters” for the 2nd service. (It’s wonderful to have teens who can drive and choose to be involved in things that mom and dad are NOT. It shows they are as comfortable with “growing up”, as I am with their doing so!)

I happened to look back right at the right time “mid-growl” of Chloe, and realized she was angry at the big red horse that stood on top of Red Horse Inn and Restaurant. As you can see from this picture, it’s hard to miss!

Yet, as I never could get in the same line of sight of Chloe, I could not figure out what it was she was barking at prior to today. Understanding is much more clear when you have the same line of sight.

One of the first things I learned from my trainer, Pat, was to pay attention to your hearing assistance dog. Trust your dog. Chloe has much better hearing than I do. (Chloe has much better hearing than a person with normal hearing too!) If I pay attention to where her attention is suddenly drawn, I’m sure to be more aware of my environment and “things that make sound”. Chloe is actually really easy to watch for cues… even from behind. Her forehead and eyebrows get all wrinkled up, and she has that cute “one of a kind” canine characteristic of cocking her head to the side. However, sometimes I cannot tell what has her attention. Sometimes I must get down on her level so that our line of sight is the same. Only then can I see what has caught her and those incredible ears, attention.

It reminded me about how we often fail to understand others if we do not have the same “line of sight“. Sometimes it is difficult for me, a forty-one year old woman, to understand a teenage girl. I was one once… long, long ago in a land far, far away! (Hey! Walsh, Colorado… a ranching/farming community in SE Colorado is a world away from the DC area in which I now live!) Yet much has changed and I have changed. Time has changed all of that for me!

It is difficult to understand a disability unless you have the disability yourself, or are close to a person with that disability. I have two deaf/blind friends living in Florida of whom I love and respect. I cannot completely understand their frustrations and struggles as my disability although similar, is not exactly the same. One of my friends… although not as blind/deaf as their spouse, understands more clearly than I. They have a closer relationship to that person than I do. Our line of sight is not exactly the same.

I am convicted in the knowing that one doesn’t have to have the same line of sight to feel compassion for someone else.

So I feel like I learned something about line of sight today. It’s important to put yourself in a position if at all possible, to share the same line of sight as someone else. When you have the same line of sight as another, be willing to commiserate with them and encourage them… you know what it is they live. If your line of sight is completely different than another, we are still responsible to reach out in love, compassion and PRAY.

One day, our line of sight will be the same as Christ’s. Won’t it be wonderful to have Heaven’s line of sight?

Denise Portis
©2007 Hearing Loss Diary

It Makes a Difference

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I recently attended a dog show with my daughter, Kyersten. She was showing her Chinese Crested at the Turkey Cluster Dog Shows over Thanksgiving.

I consider myself a “high achiever” in that according to my hearing tests at Johns Hopkins, I’m a “star pupil” in hearing again.

In spite of how well I hear, I do recognize that there are still things that are difficult for me. Case in point? Dog shows.

Not only is there a great deal of barking going on (which is a percussion type of sound), but it is impossible to understand what the judges are saying. I don’t often admit this… but there are some things a person with hearing loss cannot do. I believe participating in dog shows is one of them. I just don’t know HOW you would know what the judge is wanting you to do if you are struggling to hear. I can enjoy going and watching… but I don’t know how a person with hearing loss could ever actually participate in a dog show!

My cochlear implant makes a big difference in what I am hearing, and even in how I communicate. Some things won’t change though. There will be situations where I still will not be able to hear well.

I hate social functions. You know the kind where the church is having potluck, and everyone comes to fellowship and eat, etc.? I do great at home with my own family now during dinner… no more food getting cold while trying to eat and listen at the same time. But in a more crowded atmosphere, I still have trouble eating and talking at the same time!

Candlelight dinners? (shudder) That’s an activity scary enough to make me feel slightly ill. There is nothing worse than trying to listen with low light!

But you know? There’s not a thing wrong with recognizing what your weaknesses are! We all have them. Sometimes, we are blessed in that the things we struggle to do as a result of an acquired disability, can be done if one “thinks outside the box”. Perhaps an assistive listening device will help. Maybe that staircase is not so terrifying with a hearing/balance dog by your side.

Sunday, I needed to talk with someone in my church. The auditorium has hardwood floors (another acoustic nightmare), so I simply asked the lady if we could find someplace quiet to talk. The coat closet was a perfect location! How simple a “fix” was that?

Yet sometimes there is no solution. It’s OK to recognize that too, as long as you aren’t all bent out of shape about it!

Even people with normal hearing don’t do everything well when it comes to communication. My husband tells me constantly, “Denise! Not even hearing people are hearing well right now!” Said outside a store with a girl scout troop selling items on one corner, and the salvation army ringing a bell on the other!

One person may be extremely gifted in the arts. Another person… maybe in the same family… can’t even color inside the lines of a coloring book! No person does every thing well. A person with added difficulties of a disability should not expect to do everything well.

Me? Well I love to teach. I can only hope that love rubs off on my students, whom I also love. But don’t ask me to bowl. Don’t ask me to dance! Don’t ask me to handle your dog at a dog show.

And that’s OK by me!

Denise Portis
©2007 Hearing Loss Diary

The Bee Movie and Reading Lips

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This past weekend, I took 17 teenagers to the movies. Before you think I was totally out of my mind (which I am on very rare occasions), I had 3 other grown-up chaperones with me. Ok, Ok… I realize that may not make me less crazy, but let me get on with my story!

Chloe, of course came along… and as per the norm was “good as gold“. She’s not a stranger to the movies, but I do believe this was her first animated one.

There was one scene where the main bee character found himself on a tennis court and stuck to a tennis ball. As tennis balls on a tennis court do not normally just “lay there”, he found the ball to which he was “stuck to”, picked up and SERVED. I hope my mouth was not the only one hanging open in awe that he survived the serve and several hits back and forth! (Of course, had he been squished, the movie would have been over and thousands of kids traumatized!)

Now let’s stop and think about it from a working dog’s point of view! I wish I had a camera to snap a “kodak moment” of Chloe’s astonishment at the size of that tennis ball on the big screen. If HER jaw could have dropped open when the ball began to volley back and forth on the big screen… all the while SCREAMING (due to the “stuck” bee), I’m sure it would have. Needless to say I’m glad the tennis match was quickly over. It took Chloe a full 5 minutes to settle back down in a “down/stay”!

The movie was good, but I have to admit I struggled some through it. After calming Chloe, I found myself trying to listen… by reading the bee’s lips. Before you laugh out loud, think about it for a second! Could YOU read an animated bee’s lips? Do they even HAVE lips? (groan)

So I forced myself to ignore the bee’s … ummm… “lips”, and concentrated on what my CI was picking up. It took me a few minutes to sort of “tune in” to what I was really hearing (and not seeing), but it DID work! I could hear the bee talk.

I’m sure my audiologist will be glad to hear I have a new “CI moment” to share with her. I would imagine the last time she mapped my programming, she didn’t envision that I would be able to hear a bee talk!

Denise Portis
©2007 Hearing Loss Diary

Stress and Hearing Well

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You know I’ve heard a lot of different speakers discuss the different things that can make hearing difficult. Background noise is a common culprit, as well as poor technology or NO technology. Soft voices, people who chew gum, covering your mouth, or the common cold can all make hearing difficult for someone who has a hearing loss.

I don’t often hear (pardon the pun) people talk about how stress can affect hearing, however. I wonder why that is? We all have various levels of stress depending on our jobs, relationships, health, etc. I tell myself that there is NO WAY I am alone in the fact that stress greatly affects my ability to hear. And yet… I have not read or seen that it has been openly addressed in any forum or list serve.

Stress greatly affects my ability to hear. As a family, we just experienced one of the worst weeks we’ve probably ever had. As “mom” I struggle to answer questions and concerns in a calm way, trying to relay my assurance that everything will be ok. As “wife”, I try hard to encourage and affirm my husband. I think even prior to hearing loss, my personality was such that I tended to “shoulder responsibility” for the emotional well-being of those I love.

Do you know how difficult it is to be supportive and helpful when you aren’t hearing well? Stress tends to negate any positive assistance even the very best of technology has to offer me! I love my CI. Even so, this week has been a difficult “hearing” week for me. I think it’s because I am so very distracted… making it difficult to concentrate fully on communication.

People with normal hearing interact verbally and communicate with little concentration. I remember being able to peel potatoes over the garbage disposal… WITH the water running… WITH the radio on… all the while discussing how great the Denver Broncos are with someone else, while in the kitchen with my back turned! (Hey! Long ago when I could hear, the Broncos were awesome! Go Orange CRUSH!) Yes, now I am able to hear voices so much better, and communication is so much easier. Yet I still burn calories just listening… at least compared to folks with normal hearing. (Why doesn’t the scale show that listening with a CI burns calories? grimace)

But when I’m feeling overloaded with stress, grief or despair… that distraction is enough to keep me from hearing well. My family have all shot me looks of surprise this week in the number of times I’ve said, “Will you repeat that?” They, too, have grown accustomed to my hearing better and communicating with confidence.

I guess I didn’t realize that communication for someone with a CI still requires concentration. I am encouraged, however, as I simply cannot see around the fact that this must get easier. The longer I have my CI, I really think that I will have to concentrate less. Perhaps stress will not be a hindrance to hearing well in the future.

For now… I am saying “huh?” a lot!

I imagine, that is why prayer has been a constant in my adult life. It’s only through prayer that I communicate with ease. I don’t have to read God’s lips… I can disconnect my CI and feel very confident in my ability to express myself to Him. Stress doesn’t come into play at all. As a matter of fact… when finished I find there is less stress anyway.

Denise Portis
©2007 Hearing Loss Diary

What a Cochlear Implant is NOT

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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


Between a Rock and a Hard Place

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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

Spiders!

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This weekend my daughter discovered something rather horrible. As I am a “recovering Arachnophobe” please know that I did indeed think her discovery was THAT… horrible! It seems her bedroom had a mommy spider and a daddy spider pro-create and produce numerous offspring. They were fruitful and multipied…

Now I have a reason for having arachnophobia. In southeastern Colorado where I grew up, we did have tarantulas. In some of the canyons in Baca County, there are certain times of the year where the tarantulas would “migrate” across roads, etc. to find mates. I’ve only seen a couple of the migrations, but I believe it is what “messed me up” as my kids would say. These migrations still go on today… as this link clearly shows. I am “recovering” in that I do not jump out of moving vehicles anymore upon the discovery of a spider on the inside of my car (like I did when I was 7 months pregnant with my daughter… thank goodness for my husband’s quick hands!) Yes… I believe there has been real growth in this area!

Kyersten came to me with fear and trembling about the fact that she had killed a couple of large spiders similar to the picture above, and “lots of babies”. We discussed it in great horrid detail. I felt the hair on my arms stand straight up! Pesticides were out… we have too many pets, and Chloe (my hearing assistance dog). So she has determined to kill as many as she can each day in hopes of wiping out the colony. (Do spiders have colonies?) We hung up tacky fly paper in the corners in hopes of snaring some of them. We went to war she and I. She doesn’t really have arachnophobia like I do, but she does have a fear of tiny crawling things. (Ants are her main paranoia if you must know!) However, little spiders fit right into that category, so she spent some sleepless nights. It didn’t matter that the babies were so teeny-tiny, that they couldn’t bite her. It didn’t matter that spiders do not crawl into your bed with the primary purpose of biting you. None of this matters at all when you discover numerous uninvited guests. She and I have been a little jumpy lately.

Now I am “recovered” enough from my phobia of spiders, that I actually felt compelled to explain how unreasonable she was being as she attempted to stay awake at breakfast over her pop-tart. (Don’t get me started on how Kyersten never eats a nutritious breakfast!) Isn’t it funny how we can “preach” at somebody when we aren’t walking in their shoes? It was very easy for me to do… I didn’t have spiders in my bedroom. (And I refused to sit around thinking about how easy it would be for them to migrate upstairs). I should have been a little more compassionate.

I have thought very poorly of people in the past who try to tell me how I should work to communicate with a hearing loss when they have normal hearing. It never goes over well at HLAA chapter meetings for a person with normal hearing to speak on what those with hearing loss should do to communicate more effectively. They should not be speaking on something they don’t live… they don’t have spiders in THEIR bedroom. And yet, I have learned so much by listening to what the hearing people in my life have said to me. Things that they themselves struggle with in communicating with me. I may think that I shouldn’t have to tell someone to face me when they are talking to me. However, they can’t understand why one time I may hear them fine from the other room, and then another time I will not. THEY are suppose to know when I’m tired and not hearing as well? THEY are suppose to know there is enough background noise going on that I cannot hear them as well and need to see them? That is more than being a little unreasonable on my part!

Do you know something else I’m guilty of? Sometimes when I just went through a communication FLOP… a situation where everything that could go wrong in listening… DID… I ask for opinions and then don’t want to listen. But if I ask for an opinion of someone who does not have a hearing loss… I need to learn to listen. I can at times, whine about the problem and discuss it to death… not really ever choosing a way to handle it better the next time. Instead I choose to only look at the problem and feel sorry for myself. Everywhere I look, there are spiders.

Kyersten’s big brown eyes were wide with terror about the spiders all over her bedroom… and she asked for my opinion. We discussed it at great length… I came up with several options and she choose a course of action. She listened. She chose.

I have whined so many times about a “poor hearing” situation and asked for opinions and options. I need to be willing to listen, discuss and choose a plan of attack. I want to grow. How about you?

Denise Portis
©2007 Hearing Loss Diary

Do You Ever Get to Quit TRYING?

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Denise with “baby” of the family, Chris (16 years old)

Do you know that I’ve been trying to lose my “baby weight” since 1991? The fact that my “baby” is now 16 years old, means nothing! The “battle of the bulge” is a war I’ve fought since I myself was 16 years old. I’m comfortable with my weight now, but I could stand to lose 10-15 pounds. I’m trying to concentrate more on “getting healthy”. My trainer at Fidos For Freedom has been encouraging me to lift weights to “strengthen my core”, more by her own example than any coaxing she gives verbally. She’s one of those women who run local races, lifts weights, eats right and is an annoying “Spark” person. (Well, she’s not really annoying, but the fact she makes it look easy is!) But ya know something? There are times I stand in front of that open refrigerator door and long to choose a big bowl of ice cream instead of humus and whole wheat toast. I’ve asked myself… “Do You Ever Get to Quit TRYING?”

My mother lives in a “closed gate” community (meaning no one under 50 years old is allowed in unless you are there to visit… mow someone’s lawn… or deliver the mail) in central Florida. I guess she actually lives there with my dad too, but they do a number of things “without the other” and TOPS is one of those things. My mother is actually a TOPS leader (Taking Off Pounds Sensibly) and has lost over 50 pounds since retiring. If anyone can be an example of “getting healthy” it’s my mom. But sometimes I groan inwardly… “you mean I’ll be 65 years old and STILL be trying to eat healthy? Even then, I won’t “Get to Quit TRYING?”

But you know at 41 years old, I’ve finally figured something out. Things worthwhile take time, and being “healthy” is a lifestyle not a 3 month diet plan. I’ve even discovered this to be true of my hearing loss.

If you would have asked me at 24 if I thought I’d have a disability at 41, I would answered “of course not”! I simply would not have understood the magnitude of a progressive hearing loss… a downward spiral of loss that would eventually result in a full-blown disability.

I’ve had a number of people tell me what a great attitude I have about my hearing loss and deafness. What they don’t realize, is that I have to get up every morning and determine to have a good attitude about it! Nothing about hearing loss is easy. It affects every relationship I have.

I’ll be honest with you… at times I just want to quit trying. I get tired of asking for repeats. I am tired of having to be in the same location as another person to have a conversation! (I long to talk to my son over the 6 foot privacy fence to let him know he better get his tail back in the BACKYARD because he missed several places with the lawnmower!) I get tired of my food growing cold, because my husband wants to “talk” while eating at a restaurant. I’m simply incapable of eating and talking at the same time. I get really weary of the entire globe spinning like a top, causing me to walk like I’m intoxicated because a storm front has moved into the area. I get really tired of facing a flight of stairs with “fear and trembling” as my vertigo makes stairwells the single most dangerous place for me to be. It gets really old to not hear a single thing in the morning until I walk over to my Dry N’ Store container and put my cochlear implant on. Sometimes I just want to “Quit TRYING“.

But what is the alternative?

Regarding our health… we’d all be obese and have heart disease, diabetes, and high blood pressure. No one would live past 50 years old. (My mom and dad’s retirement community would be empty).

Regarding hearing loss… I’d be in a self-imposed isolated world. A very SMALL world. I’d be bitter, angry and deaf. I choose to be accepting, happy, and coping with deafness.

So… I don’t “Get to Quit TRYING“. And neither should you!

Denise Portis
©2007 Hearing Loss Diary