Deaf for a Day

This week, one of my classes will be doing an assignment I call “Deaf for a Day”.

For most, it is a frustrating experience but not for the reasons that you may believe. Most of the complaints that I get from my students are because the assignment cannot be done “totally deaf”. The earplugs simulating hearing loss, simply do not take away ALL the sound. They truly want to try to get a grasp of what it would be like to be “deaf for a day”.

I do everything I can to make it possible (smile), but in the end most experience the day “hard-of-hearing”.

I suppose that most who are late-deafened, have at one time WISHED deafness on someone for a day. Perhaps it was even someone to whom they were close… someone being particularly thick-headed about communicating in a way that made life a little easier. In anger, I’ll admit that I have at times wished “deafness” on someone if only to help them understand what my life was like… to experience the frustrations I live.

In truth, I will admit that I do not wish deafness on anyone. I do not wish it on anyone who was born hearing. I have Deaf friends who were born Deaf and are accepted into the Deaf culture and community. They fully utilize ASL as well as fully experience life. When you are born with normal hearing, however, deafness is not something one becomes accustomed too quickly… nor easily.

Many think that becoming deaf means that voices are no longer heard. Certainly communication is one of the more frustrating things a late-deafened person experiences. And yet, so much in our world makes sound! Learning to live in an environment where everything is silent can be painful.

I think that is why I chose the cochlear implant. It helps to keep me connected to the hearing world in which I was born. Almost everyone I know communicates through spoken word. Many of the things I enjoy the most make sound. I have reached the point in my “hearing loss journey”, that I readily accept changes in my hearing, choose to wear “bling” on my implant, and confidently put my faith in my hearing dog, Chloe! Hugs from this Vizsla darling are certainly a perk I enjoy!

I always look forward to the responses from my students about being “Deaf for a Day”. It is interesting to note, that many of the family members tend to be extremely frustrated and “ill” about the assignment. I had a mother once tell me that she “hoped I never repeated the assignment”, for it was “very frustrating trying to make conversation and make sure instructions were understood” to their hearing child gone “deaf”. After that conversation, I cried. You see, the whole point of the assignment was lost on this parent. At the end of the day… when the lights went out – the earplugs came out as well. In the morning their child woke up to their regular alarm clock, or “get out of bed NOW” reminder! (smile) What I want my students to learn… the lesson I hope they come away with… is how their world and relationships would change should they lose their own hearing. Certainly, the greater number of them will adapt, find help, and discover how very supportive their families are.

But hands off Chloe… grin! She’s mine!

Denise Portis
©2008 Hearing Loss Diary

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Instinct and Learned Behaviors

One of the most frequent questions I am asked about Chloe is “What kind of dog is she?” She is rather striking looking with her muscular build and red coloring. As her breed is “questionable”, I always tell them:

“My trainer believes she is a Vizsla and Golden Retriever mix”

My trainer has had a wide exposure to dogs, their breeds, and AKC shows and obedience trials. I’ve attended some of these functions with my daughter who now shows her Chinese Crested, and other dog enthusiasts have agreed with my trainer’s guess.

I suppose if I ever just wanted to know for sure, there are two tests available to the public now that will identify your dog’s “mix” for you. The Canine Heritage Breed Test and the Wisdom Panel Mixed Breed Analysis Test will take all the guess work out of the equation for you!

I do know by simply observing Chloe, that she is a scent hound and not a sight hound.
Chloe will follow a scent all over the yard when off leash. The scent trail may twist and turn, having her meandering across the lawn, over stumps, around sheds and even across gravel walkways. However I have seen her following a scent and miss a squirrel sitting on a lower branch of a tree watching her with interest. Unless the squirrel makes a noise causing her head to jerk up in awareness, she will never notice that critter unless her nose leads her right to it. If the scent trail she is following doesn’t lead her to the trunk of the tree where the squirrel is, then the trail she is following belongs to something else… something likely not even in the yard anymore.

I’m amazed when her nose begins to follow scents she can smell in the air even! She will even TASTE the air as she “tracks” something that wasn’t on the ground and yet came through our yard through flight.

Whatever her true breed mix may be, the “hound” in her is very obviously a scent hound. And yet… even though instinct drives her to behave a certain way, Chloe has learned particular behaviors and responses. This is why she is such an incredible hearing dog, and balance assist for me. These behaviors and responses were not “bred” into her, rather “trained” into her.

She knows I will praise her for “hearing things” and so will alert to even the smallest sound. I enjoy watching where she intently tunes into, as she tries to discern what is making a sound in order to take me to it. Those incredible ears will perk up, and she cocks her head to one side as if saying, “What in the world was THAT… and should I take Denise to it?”

I think one of the most difficult things for me in learning to live with an acquired disability like deafness, is learning to ignore instinct and instead rely on learned behaviors.

I was born with normal hearing, and like any child learned the different sounds an animal makes. I likely had more success in this than some others as I grew up on a ranch in Southeastern Colorado! I learned what a door closing sounded like, a baby’s cry, a coffee maker percolating, water boiling on the stove, and what water sounds like running in a stainless steel sink. I learned what the dishwasher sounds like, and the sound of a car engine that is running “correctly”. I learned that almost everything in the world makes a sound… even to the smallest whisper of noise like the sound of a breath exhaled on a cold winter’s morning.

Even though I lost my hearing over a period of twelve years, I still had to concentrate on using my other senses. When my coffee maker was finished, I had to see if any steam was still emerging from the top in order to know when it was finished. I had to learn to feel the vibrations of a door slamming to become aware of whether or not one of my children had returned from the backyard. A hand placed on the outside of the dishwasher, helped me to conclude whether or not the machine had completed its cleaning cycle. I think that is why losing one of your senses can cause STRESS in our lives. Our ears still want to HEAR the sounds of the world in order to help our brains make sense of everything around us. I had to “re-learn” how to become AWARE of small, relatively unimportant signals. I very quickly had to learn to perceive important emergency situations, and invested in some signaling devices that were visual or tactile alerts for things like fire alarms, alarm clocks, etc.

After my cochlear implant was activated, I again began to hear things that were silent to me for over a decade. I remember it took me a full week to discover the SOUND my coffee maker made. I didn’t have Chloe at the time to take me to it. It was very frustrating to hear something every morning and not be able to determine what it was. As I only have a CI on one side, I had difficulty with directionality as well. My family were unable to assist me in finding the “sound”, as these noises were things they had long ago learned to tune out as unimportant “background noise associated with life”. Even though it has been almost three years, I clearly remember how I practically HUGGED my coffee maker when I finally pinpointed the sound! In a period of 6 weeks, my husband had replaced our garbage disposal, dishwasher and vacuum cleaner as my brain “reconnected” sound with household items, and I by instinct and memory recall, knew they were not running correctly or effectively. The car ended up in the shop as well for some brake work!

I am “blessed” to be hearing again, however I am quick to explain that I do not hear normally. I am still adapting and learning to “hear” in new way. I allow my bionics to “hear” for me, and yet have learned behaviors that I continue to use to help me make sense of what I’m hearing.

I think people are incredible! The way our bodies work and have been put together at times astounds me! God certainly created something unique and special when He created us. We can adapt to disabilities and re-learn how to accomplish simple tasks.

Chloe? Well no matter WHAT her breed is, she assists me and helps that adaptation and “re-learning” to be a much lighter burden!

Denise Portis
©2008 Hearing Loss Diary

We’re Not So Different, You and I!

We only have one old dog in the house now. Ebony is a 15-year-old Pomeranian that Kyersten adopted in 2003. Since Max passed away 1-1-08, our only family “old-timer” is Ebony now. I noticed she tends to get special favors from all of us, and if she wasn’t spoiled before… she most certainly is now! Ebony is considered “terminal” and we were told she had months to live about three years ago, and then again about 18 months ago. Obviously Ebony doesn’t listen to the vet!

Ebony is not very dog-like. I suppose I should explain that. When she pants she smiles like a little clown. She doesn’t pant like a “regular dog”. Ebony is a little queen, and has each of her “people family” wrapped around her little arthritic paw. She doesn’t really perform any kind of function. She certainly isn’t a watch dog. She doesn’t chase squirrels. She doesn’t alert. Cripes! The little stinker isn’t even potty-trained! WE are the ones who are trained, and simply take her out at regular intervals. Ebony has an enlarged heart, liver disease, she’s almost blind, she has collapsing trachea, luxating patellas, arthritis and has a “near death” experience if we give her heartworm meds. Yet she continues to enchant us with her regal and haughty attitude.

There are times… and mind you they are very few and far between… that Ebony DOES do something that actually reminds us that she is a canine. If Kyersten is delayed in feeding her, she will sit “prim as a princess” and stare her down. If Kyersten moves, Ebony will bark. Those barks take Chloe completely by surprise. I’ve seen Chloe’s jaw snap shut with a “click” as she is so astonished by that bark!

Chloe will tip-toe over close to Ebony and sort of sniff, Sniff, SNIFF… trying to decide if she really heard that little black thing bark! Then she’ll sit and stare at Ebony as if it has finally dawned on her that Ebony may indeed be a dog. I can almost see her thinking, “We’re not so different, you and I!”

When Chloe gets those light bulb moments about Ebony’s genus and species, it reminds me of the encounters I have with people with hearing loss. In many ways, hearing loss is unique for every individual. No one’s audiogram looks the same, no one struggles with hearing the exact same consonants and vowels in specific listening environments. Everyone seems to have different “additional” problems like vertigo, tinnitus, ear infections/disease, Meniere’s, etc. Different people do well with specific types of hearing aids, assistive listening devices, BAHA’s and cochlear implants. Yet… in many ways we’re not so different.

At the 2007 Walk4Hearing in the Capital area, I was standing against a post beside a woman I’ve never met. She had two slim-lined hearing aids and was about my age. I could only see her profile, and noticed she was struggling to understand someone. When that person walked away, she turned around and saw me standing there. She crossed her eyes with an exaggerated grimace, and said, “Gosh! I hate it when people chew gum!” I had to laugh out loud and commiserated with her!

It wasn’t ten or fifteen minutes later, I walked towards a different shelter closer to the starting line for the Walk. I almost quite literally ran into a mother with three children. I crossed her path just in time to her hear groan, “Please don’t walk away from me when you are talking! I can’t hear your back!” I almost had a fit of giggles all the way over to where my family were waiting for me!

Those of us who have hearing loss are so different in so many ways. And yet… “we’re not so different, you and I”. As a matter of fact, if we actually sat down and listed similarities and differences, I imagine we’d find we had more in common than we thought!

That is one of the reasons why the numerous hearing loss advocacy groups should work together. Yes, there may be differences in that some of us use sign language, while some are only oral. Some may have hearing aids, and others a BAHA or cochlear implant. However, there is strength in numbers. We can accomplish so much more if we pool our resources, efforts and voice to make hearing loss a matter of national concern. Besides… it’s much more pleasant to be on the same “team” than to be fighting against each other! “We’re not so different, you and I!”

Denise Portis
©2008 Hearing Loss Diary

But it’s MY problem!

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…

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

Would You Use "Normal" English, Please?

I pride myself in being a little “different“. As long as “different” doesn’t cross the line to being “weird“, my teens are OK with that even!

Every New Year’s, I do more than make resolutions that I try my best to keep! I also determine to “try new new things”. This year I have determined to “try” some fairly strange things (like seeing if I can stay awake for 24 hours straight, and trying clam chowder for the first time… anyone know of what restaurant serves the best?), but most of my decisions are rather sane. (OK, that means they are boring too!)

One of those “sane” things is that I switched from Yahoo to Google for my internet home page! As I’ve only used Yahoo, and as I’m difficult to “teach” new techie things, this was HUGE for me! My husband (patient man that he is) helped me personalize my Google page and make it truly “Denise Portis-ish“. I’m quite proud of my iGoogle, if I do say so myself! I have all of these wonderful little tabs for the different pages, and I’m just a little too tickled about the whole mundane change! One of my iGoogle pages is entitled, “Fun”, where I put silly things, or links that just make me smile when I need a break. On the “Fun” page I added a recommendation from Google that is called: “Slang O’ The Day”.

This morning I woke up and went to my “Fun” page for a quick smile, and couldn’t believe what the first “slang” word was! Steezy! Excuse me, but steezy? Say WHAT? It means “incredibly noteworthy or impressive“. I sat in my chair a full moment trying to wrap my brain around that. I thought these would be words I understood… words I’d heard before! Steezy? If I think something is “incredibly noteworthy”, I simply exclaim, “Wow! That was incredibly noteworthy!” (OK, I probably DON’T say that, but I certainly don’t say “How STEEZY was that?”)

It seems it has something to do with the lingo skateboarders use. It made me realize that we do have some strange “slang” and words in the sub-cultures of our society.

Take the “hearing loss crowd” for example. In writing, people with hearing loss use HL (hearing loss) HA’s (hearing aids), CI (cochlear implants), HoH (hard-of-hearing), etc., a great deal. Both in writing and orally, we use terms like “audi” (audiologist), “hearie” (someone who hears), and “I don’t have my ears on”, to indicate our HA or CI is turned off.

I heard someone at an HLAA (Hearing Loss Association of America) convention say, “I need juice! I need juice!” when their HA batteries had died! I didn’t even have to ask what she meant, and reached in my purse for some extra batteries! Mine (size 13) were much bigger than what she needed (size 11), and she exclaimed, “Good lord, I don’t need THAT much juice!” (smile)

When I was standing in line to meet Heather Whitestone McCallum at another convention, my own batteries died. I exclaimed out loud, “Oh no! I just died!” Unfortunately, this happened right as I got up to Heather! She started laughing and stuck out her hand and said, “I say the SAME THING!”

So I guess it’s ok to have different acronyms and phrases as part of a sub-culture. But could you skateboarders use NORMAL ENGLISH please?

Denise Portis
©2008 Hearing Loss Diary

It’s hard to say goodbye!


Max
November 21, 1992 – January 1, 2008

It’s hard to say goodbye to a family pet… especially if they have been a part of your life for a very long time.

On January 1st, Max suffered a second seizure within twelve hours of the first, and was only able to barely respond afterwards. We knew it was “time”. Even though it’s the “right thing to do”, and “what is best”, none of those platitudes keep your heart from breaking.

Max was my “ears” from 1992-1995. My kids were little and Terry worked full-time and was going to school full-time. As a stay-at-home mom and slowly losing my hearing… I came to depend on Max a great deal. We were unable to afford hearing aids, etc., so Max had his work cut out for him!

A friend of mine who taught dog training classes, helped me teach Max the basics. Mostly, however, he learned on his own as I think he knew I couldn’t hear well. The most “helpful” thing he did was during those potty-training years.

The kids will love I’m sharing this… but I was unable to hear when they needed assistance at the commode! They’d holler for “Mommy! Come help! I’m done!”… and Max would come get me. It worked out well (smile).

After I purchased my first hearing aid, I stopped using Max as my “ears”… and I think he knew I didn’t need him anymore that way. He enjoyed being the family pet.

After I was matched with Chloe almost 12 years later, and am now profoundly deaf without my implant, (plus having balance problems that keep me insisting to all who know me, “No! I don’t drink!”) Max was perfectly fine with Chloe being my new partner. He surprised us a couple of times by remembering some “how to’s” with alerts! Things come back pretty quickly when treats are used as awards!

Even Chloe misses Max. She runs out in the yard and scatters the squirrels… then looks around for Max as if saying, “Get a load of THAT, Max! Aren’t they scared of us?” But Max isn’t with us anymore.

My consolation is that I know we gave him the best home a dog could enjoy in life! He was loved! He is missed!

Denise Portis
©2008 Hearing Loss Diary