Category: Challenge

We Make Do Somehow!

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You know? When I find myself sitting around “counting my blessings”, it’s usually because I’m at a low point. Now a low point for me can simply be the result of a lack of sleep!

I was amazed at the results of an impromptu survey I took at the Omaha National HLAA convention several years ago. Ninety percent of those with hearing loss answered that they do not get enough sleep. Most admitted that they need between 8 and 10 hours of sleep a night in order to communicate well. If you think about it… those with hearing loss must be an active participant in “listening”. For most people, hearing and listening is a passive function of one of our main senses. Because I have a significant hearing loss, I know for a fact I burn calories trying to hear! Why doesn’t the scale show that proof? (smile!)

I have, however, had a hearing loss long enough to know that I have learned to “hear” in other ways… learned to “make do”. Oh sure! My cochlear implant, hearing aid, and assistive listening devices help a great deal! But I have also learned to use my eyes to hear better. Now before you think that means that I can speech read… think again. Speech reading is not an exact science! It use to be called “lip reading”, but the politically correct phrase is now speech reading. I use to love to watch the PAX television show about Sue Thomas, FBEye. The real Sue Thomas has the extraordinary ability to accurately speech read. She does so well as a matter of fact, the FBI hired her! But in reality, speech reading is not exact. It certainly HELPS... and combined with other things like technology, listening environment, attitude, etc., it can certainly help one with hearing loss “hear” better!

I do use my eyes to hear better, but it’s not necessarily to speech read. I “make do” somehow! I use my eyes to attempt to discern emotions, intent and attitude by carefully watching the facial expression and body language of others. I happen to have two individuals in my immediate family who can “tease” with a perfectly straight face! I fuss at them all the time! I search their expression to know whether or not something was meant in jest and to “hear” them better.

My assistance dog was sick the past couple of days. Chloe is not my “kid”, but I do love her a great deal! I’m very thankful that my hearing was still “manageable” when my kids were very small. For now that I am deaf… it was really difficult having Chloe sick and not being able to “hear” her. For two nights in a row, she bumped me and woke me in time to only comfort her while she got really sick! So by the third night, I went to bed with a flashlight. Now Chloe is better! Imagine how perplexed she must have been to have a flashlight shining in her eyes every 30 minutes or so! The poor thing hardly got any sleep for two nights… and the third night Denise is on pins and needles shining the light in her face every few minutes! At night I am completely deaf… no sound at all. Normally this means I sleep very well! But if I’m tense because I’m afraid I will NOT hearing something, the lack of hearing anything at night is not a positive! I needed to reassure myself that Chloe wasn’t going to be sick again. I needed my eyesight – with the aid of a flashlight – to “make do”.

Needless to say, I have always been in awe of two friends of mine who live in New Port Richey, Florida. They both have vision AND hearing loss. Yet… they have learned to “make do” too. It would take me 10 paragraphs to adequately explain all the things they do in order to live full and productive lives in spite of a disability X 2! They “make do” very well! (Their guide dogs are spectacular too!)

At Fidos For Freedom, Inc., in Laurel, where I train with Chloe, the clients all have various disabilities. Yet all “make do”. They train hard, and lead productive lives due in part from the assistance they now have from a canine partner. I love that one of Fidos numerous community service programs is called dAp. It stands for disAbility Awareness Program. The program’s intent is to educate others about disabilities, explain what it is like to be a person with a disability, and to increase acceptance of people who may be “different”. I really do believe that even people with disabilities can be very “ABLE”. It is right to capitalize that “A”! We “make do” somehow!

Denise Portis
©2007 Hearing Loss Diary

No but I do! I bite!

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Yesterday I went into Wolf Furniture to look at some furniture. Our den furniture, ancient and worn, has also been destroyed by three furry felines. I’ve done some research on “kitty friendly” fabrics, and so decided to do some shopping to get an idea of prices.

When I pulled into the parking lot, my hearing assistance dog, Chloe, began barking! I realized she was bristling at a big, black, iron bear in front of the furniture store. Unfortunately, this picture doesn’t show the bear. (Scratching head and puzzlin’ over it… why a bear and not a wolf?)

It took me a few minutes to get into the store, as I needed to reassure Chloe that the bear wasn’t real. My daughter, Kyersten, was with me and went over and “loved on it”. (as they say in the South) That seemed to convince Chloe, so we entered the store.

I greeted some sales reps at the front of the store and then searched over their heads to the section of the store I wanted to look through. A female sales rep came up and talked to Chloe (not me) and reached to pet her. I politely said, “I’m sorry you can’t pet her”. She jerked her hand away and walked on by and said, “Oh she bites!”

I stopped as if frozen! As a matter of fact, Kyersten plowed into the back of me and Chloe was surprised by the sudden stop! I turned to look back at her, and I could tell that another sales lady was “explaining the situation”. I verified with Kyersten that the lady had indeed assumed that Chloe “bites”. Have you ever had something happen, only to find the perfect retort AFTER the incident is over? I would loved to have been able to roll back time in order to say:

“No but I do! I bite!” Sigh.

At the training center where I take Chloe (http://www.fidosforfreedom.org/) … also where Kyersten takes her puppy… we often rehearse situational confrontations. Access can often be a problem when you have an assistance dog who is partnered with you as a result of an invisible disability like hearing loss.

These “rehearsals” are very important, and I’ve learned a thing or two every time I have participated, or even watched a practice take place!

People with hearing loss would do well to rehearse certain situations in which they may find that they need to explain they have a hearing loss. Knowing what to say in advance, as a result of PRACTICING what to say, can be very helpful!

Some various scenarios that may be helpful:

1. When going out to eat, practice a polite way to ask for a quieter corner due to the fact that you have a hearing loss and may not be able to communicate effectively if seated next to the kitchen, stereo speakers, etc.

Practice explaining that you have a hearing loss to wait staff, in order to ask for specials to be written down for you.

2. Rehearse how to check into a hotel so that you can be prepared to ask for assistive listening devices such as the following:
– ask for the instructions and/or code to be able to turn the captions on the television
– ask for a visual fire alarm for your room
– ask to see if any rooms have Captel in addition to telephones

3. Be prepared for doctor visits by writing down the questions with BLANK SPACE in between each question so that the doctor can write their response… even if it is only a quick little “cliff notes” version, based on what they tell you in the office. Practice how to explain that you have a hearing loss and you would love for them to look up from the chart when talking to you.

4. Know the best way to say to your dentist that you can’t hear them if they wear a mask. Ask them to save the discussion for the end, and if they would be so kind as to wait until you have sit up, SPIT, and they have removed their mask. (The SPIT part is important, I’ve found. If you are leaning over the bowl trying to spit out that gritty stuff… how can you see their face?)

5. Practice what to say to your child’s teacher, and write down concerns you have for the parent/teacher conference. Let them know that if they will wait a minute after responding, you will jot down some notes in response to the question. They can then read what you summarized and make sure you are “on track” with what they said.

There are a number of other scenarios that one could practice. Practice, my friend, really does “make perfect”. At least… most of the time!

A dream of mine… to know a quick put down at the moment something happens! A burly overworked teenager working in the parking lot of a Target tries to get around you with 14 carts “smushed” together. (Yes… “smushed” is a word! Don’t argue with me, look it up in the dictionary!) Exasperated, he finally pushes past you. Since he’s finally close enough for your hearing aid and/or cochlear implant to pick up his voice, you hear him mutter…

“What are you … DEAF?”

And without missing a beat… you reply:

“Yes! As a matter of fact I AM!”

Denise Portis
©2007 Hearing Loss Diary

Let’s Start From the Beginning

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So many times we think that people know how to talk to us. Different personalities prefer specific types of communication, and people with hearing loss require even a little more understanding. What most people with hearing loss do not understand, however, is that the burden of responsibility for communicating lies with US… not those around us.
Many think that those with normal hearing should know automatically how to best communicate with us. I am always amazed at this assumption, as even people with hearing loss vary in the degree of hearing loss they have! We need to start from scratch… and educate those around us how best to communicate. We should start from the beginning… and not assume that every person with whom we are in contact, will know how to communicate with a person who has hearing loss.
When I began my training at Fidos For Freedom, I was a “newbie” in every sense of the word. I’ve had dogs all of my life, enjoy dog kisses, and love to scratch an available tummy. (Terry doesn’t seem to mind this either – smile!) However, I didn’t even have a novice understanding of dog training when I began on April Fool’s Day, 2006! (No comments on that please – grin!)
I’ll never forget walking into the training center and being placed with my first “fido” to work. Her name was Tracy B., and she is a trainer – NOT a dog! They don’t ever put you with a dog at the beginning… that’s not fair to the dog or to the client! Tracy actually clipped a leash to her belt loop and handed me the other end of the leash. Imagine her chagrin when I looped my wrist through the leash and said, “Come on, Tracy!” (I had so much to learn!)
To give her credit she didn’t even shake her head and moan! I seem to recall that her mouth dropped open, but she hardly missed a beat as she said, “Ok Denise! You need to learn how to hold a leash!”
How to hold a leash? What’s the big deal about HOW to hold a leash?
The loop of the leash is to go over your thumb… so that a sudden pull cannot separate you from your dog. Who would have known, that all I would come to learn, would begin with… HOW to hold a leash?
I also learned that there are specific commands, and you don’t “make up your own”. My trainer, Pat, reminded me of this just this past week when she heard me talking to Chloe. No real commands were actually coming out of my mouth! You are to use your dog’s name, and you are to use specific commands.
Why do we forget this when communicating? I do it myself often enough, believe me! I am the one with a hearing loss, so I need to take it on myself to educate those around me. How I prefer to have people communicate with me, is not how someone else with a hearing loss may choose. I need to be specific, and not assume others know what I want and in what circumstances different ways work best.
If I’m in a noisy restaurant, I should say, “It would be great if you could hold the menu down. There is a great deal of extra noise in here, so I’m having to rely on what I see on your lips as well as what I catch with my CI”.
I was in JCPenney this weekend shopping with my daughter. I needed some “work clothes”, and I ended up buying only one small item for “me”. (Since we came home with a shopping bag full of things, guess what happened? Smile!) But as we were shopping she kept going to the other side of a rack of clothes to talk. I could tell she was talking because Chloe would prick her ears up and look at her legs on the other side of the clothing rack. I’d wait… and Kyersten would peek around with a “? mark” on her face.
“Excuse me? Sorry I knew you were talking, but your voice gets lost in this big place. Could you stay on my left please?”
Since she wanted to spend my money, she did so… and gladly! And remember… Kyersten LIVES with me! Few people know me better! However, it is still my responsibility to tell her WITH SPECIFICS how to communicate with me if I am having trouble.
How about communicating with people you rarely see? The cashier at Costco may only see me once a month. Several in there “know me” now because Chloe is hard to forget. However, when I get up to the register I politely inform them “how to hold the leash”. What I mean by that, is I carefully explain to them in two or three sentences that I have a hearing loss, and I need them to look at me and pause if they need to talk to me. They are always glad to do it, and aren’t at all upset about my disclosure. On the contrary, I am reasonably certain they appreciate it.
I have discussed with other chapter leaders of HLAA, how ironic it is that many times people with hearing loss are the worst communicators! We learn how to explain to others how best to talk with us, and yet when we are talking to someone else with a hearing loss we break all the rules! We loop our hand through the leash! We fail to face the person, forget to speak clearly and enunciate well, etc.
I have to “start from the beginning” a great deal. I often forget the very basics of good communication. Thankfully, I get a brand new day every morning. There’s nothing wrong with being reminded about what we should be doing out of habit. “Let’s start from the begining!”
Denise Portis
©2007 Hearing Loss Diary

Hearing Dog – Do Not Pet

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I just got back from the HLAA national convention in OKC! We had a wonderful time, and I love re-connecting with old friends and meeting new people!

This year I counted 5 assistance animals, one of which was a service dog. It’s great to see the different organizations who train hearing dogs represented, as well as an owner-trained dog or two!
I had a difficult time enforcing the “Do Not Pet” rule. I left some functions scratching my head as to why some people do not think Chloe’s vest and declaration of “Do Not Pet” does not apply to them!
I didn’t exactly count one petting encounter after another, but I am reasonably certain more than a couple of hundred people had pet Chloe by the middle of Day 3. I certainly do not relish having to tell someone to please not pet her, and it’s even worse if I have to intercept a hand reaching down with my own!
After thinking about it a great deal, and getting some great feedback from my trainer and others, I believe the problem in part, may be that people with hearing loss do not “hear” my pleas to not pet Chloe. I did a lot of pointing to her vest too, which helped some but certainly did not fix the problem. Perhaps, as most of the people there share my disability of hearing loss, they thought that the rule did not apply to them. In my local HLAA chapter, we have had many discussions about how we who HAVE hearing loss are often the worst communicators! We ask others with normal hearing to speak clearly, not cover their mouths, not chew gum, not yell, etc., and yet we often do those very things! So perhaps some people think that the rule applies to people who do not have hearing loss. I’m not sure, and it has certainly left me “puzzling over it” as my grandmother would say!
By day three, Chloe was reaching for every stretched-out hand, irregardless of whether or not I corrected her. I do not think people understand that her attention must remain on me and when I put her in a sit/stay, I have to correct her if she breaks it to visit with someone. Because she believed her vest meant “free” instead of “work”, I took a really bad fall on Day 3. I have 2 huge bruises, a twisted ankle that still smarts, and some major work with Chloe that will have to be “re-trained”!
Some people with assistance animals allow anyone to pet their dog. For someone like myself with a disability of hearing loss AND balance problems, an “unequal standard” of what a working dog is can certainly cause problems… and accidents.
I realize I’ve only been working with Chloe as a fully functioning team for 2 months. Some lessons are learned the hard way. I’ve learned this one! When Chloe is in her vest, I cannot allow anyone to pet her. (I’m telling MYSELF that – not you! Grin!)
Denise Portis
©2007 Hearing Loss Diary

DIRECTION

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Direction. I love to look up definitions to words I already know. I am many times surprised by finding a definition or variation of the word’s use that I had not been aware of before. I looked up the word “direction” this morning and really liked what I found.Direction: guidance or supervision of action or conduct, assistance in pointing out the proper route used, the line or course on which something is moving or is aimed to move or along which something is pointing or facing.

This weekend I had my first of three “overnight” stays with Chloe, my hearing assistance dog. I hear voices so well with my cochlear implant, and can even hear various environmental noises depending on the level of background noise. However, only getting “sound” in one ear makes it difficult to “place” where the sound originates. Many late-deafened people call it “loss of directionality”. Chloe’s ears work really well. That is why she has this job. She thoroughly enjoys alerting me to the direction of where the sound began.

If I pay attention to where Chloe looks, I can then pin point from where the sound is coming. She even looks up for airplanes! I have heard some jets flying overhead and have identified what the sound is – thanks to my kids! But Chloe looks up right to the location of where the jet is, allowing me to find it immediately. The White House sends 4-5 choppers up this way occasionally when President Bush is headed to Camp David. Helicopters make a very strange sound and it’s even hard for my kids to locate them even though they fly low. The sound doesn’t “match” where their actual location is as there is a distortion of sound. We sort of make it a race to see who can find them first. I have a feeling I now have an advantage with Chloe!

But you know? Direction is much more than finding from where a sound originates. To a late-deafened individual, direction can be “guidance or supervision of action or conduct”. When a person first loses their hearing they go to their doctor, and/or an audiologist. It is unfortunate that there are not very many doctors who can help us with more than testing and diagnosis. I have met only a few individuals who had a doctor who cared enough to discuss coping skills with them, or to tell them about wonderful organizations like the Hearing Loss Association of America. Few offer any help for the HoH (hard of hearing) person’s family, or ways to work more efficiently, etc. Few warn HoH people that there will be “hard days”… and that depression is common.

Thankfully we live in a day of the internet, and information, support groups, and “community” can be found very quickly if one simply “googles” hearing loss.

Call me a dreamer, but I really do believe that in my lifetime audiologists will have recognized that hearing tests and the fitting of hearing aids is only a small part of what they do. I think it has already begun to change in some parts of the country. Think of how wonderful it would be if in those terrifying moments after having been told:

“You have a hearing loss and it is likely progressive. I don’t know why you have a hearing loss. It’s called a sensorineural hearing loss… a common diagnosis”.

… that we next feel a comforting hand on our shoulder and are handed information about a local HLAA chapter! Better yet, our audiologist is actually actively involved in the chapter because they care about the “human aspect” and emotions that accompany living with a hearing loss. Advocacy is important to them, they want us to feel connected and to know we aren’t alone. Am I dreaming? I don’t think so.

As important as a community of my peers have been to me, I still meet people when I travel the U.S. that take me aside to ask, “Why are you so darn happy about your hearing loss? How can you even smile about the things you speak about?”

Given the opportunity, I gladly explain how God has brought me through all of this! I don’t ever try to gloss over those “dark days”, or pretend that it has all been a wonderful journey. As a matter of fact, there have been some days that I really did not WANT to go on! There were days that not one person’s words really made a difference. I have a very wise husband who recognized that there are many needs he cannot meet. He reminded me to read, and specifically my Bible. He points me in the direction of God when I’m at a place no one “this side of Heaven” can help me. My relationship with God is not dependent on hearing. Only “listening” is involved. So given the opportunity… I’m glad to point people who ask in His direction!

Denise Portis

©2007 Hearing Loss Diary

People Who Get It

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Hearing loss is often referred to as the invisible disability. Some will argue that it is NOT a disability. I think people who think that however, do not have a degree of hearing loss in which their life is different because of it. If hearing loss does not cause you to miss out on what is being said, and has not directly affected your communication, it really isn’t a disability – yet. If you have a progressive hearing loss, you eventually scrape together the money to buy a hearing aid, and then assistive devices, and perhaps eventually a cochlear implant. You recognize the fact that you have a disability and learn to live with it.I have people in my life who do not “get it”. It is unfortunate that these people are close to me – or at least use to be. When they question why I wear my cochlear implant coil where everyone can see it, and even decorate it with “implant bling”, I realize they believe I’m drawing attention to the fact that I have a hearing loss. Recently partnered with a hearing assistance dog, Chloe, I have learned that instead of being proud of all of the hard work I have put into my training they question why I would want to have a dog partnered with me in public.

Sometimes I think that I have done them a disservice in that I was not very open about how my progressive hearing loss affected my life. I did not let them see the pain, the isolation, the depression, the eating disorders, and the suicidal thoughts. I survived all of that, and am a better person for it. Perhaps if I had been more transparent, they would rejoice with me in what I am hearing with the cochlear implant. Instead they continually forget what my implant is even called and refer to it as “that thing”. If they had seen how I was “then”, perhaps they would see how independent I have become and embrace assistive listening devices, and hearing assistance dogs.

The people in my life who “get it”, are my immediate family as my hearing loss has affected them as well. Knowing that one day my “empty nest” will have a dog to alert me to our alarm, the phone and the door when Terry is out of town gives them stability and relief. “Mom” is going to be ok.

Other people who “get it”, are people who also have hearing loss or someone in their family does. They “get it”, because they live it. They understand. I receive not only emotional support, but even spiritual encouragement from so many of them. They know what hearing loss can do, and they also know how strong it can make you with supportive people around you.

I do have one person in my life; a dear friend named Sandy. I am her only link to hearing loss. Everything she has learned about hearing loss has really been from my family and I. She was my “cheerleader” all through the research I did for the cochlear implant, and she has been supportive of every assistive listening device I have purchased in order to teach better. She also knew nothing about hearing assistance dogs, and yet greatly supports the fact that I will have my partner with me next school year… in her school. Because I know so many people who “don’t get it”… even some very close to me, I don’t really understand why Sandy “does”. However, I am grateful for it!

I think the internet is a fantastic thing. I have “found” people just like me all over the country… even the world. I have access to wonderful yahoo groups like bhnews, and Hearing Dog Teams, many HLAA chapter/state groups, and message boards like myhearingloss.org. I receive digests via email from superb newsletters like HOH-LD News (Hard-of-hearing/Late deafened) and some Google groups related to hearing loss. As members voice their concerns, and questions, other members rally and respond. I believe it has revolutionized the hearing loss community. For you see, we understand this invisible disability… and realize its ok to make it visible. Through education, advocacy, and support we shed some light on a disability that was once in the dark. I appreciate my association with people who “get it”.

I’ll always have people in my life who “don’t get it”. I can try to educate them and respond to them in a positive way. I can do this because of the support I have from people who do “get it”. However, those people who do not no longer have any influence or power over who I am or who I will be.

http://groups.yahoo.com/group/bhNEWS/
http://groups.yahoo.com/group/hearingdogteams/
http://groups.yahoo.com/group/txhll/
http://groups.yahoo.com/group/HLA-LA/
http://www.nchearingloss.org/
http://www.myhearingloss.org/forum
http://groups.yahoo.com/group/HOH-LD-News/
http://groups.google.com/group/hearinglosshaven

Denise Portis
©2007 Hearing Loss Diary

COMMUNICATION – Part One

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FIRST STEPS TO GOOD COMMUNICATION
Part One

“Communication” is something I’ve had the opportunity to discuss with people from all over the United States. Whether face-to-face, or on numerous message boards on the internet, “communication” is always a topic that comes up at some point.

I don’t believe communication is only important to the population I now find myself a member of due to my hearing loss. Certainly communication is problematic for us, but even people with perfect hearing can find that they are poor communicators.

Divorce, childhood background, personalities, and personal tragedies can all influence our ability to communicate effectively. However, I am convinced that unless one has an open and vibrant relationship with God, they will always struggle with communication. It boils down to the fact that if you “can’t talk to God, you can’t talk to anyone”.

Especially true if someone who has an acquired disability is also a Christian. If their relationship with God is “not working” due to bitterness, anger, denial, depression, etc., then how can they even begin to communicate effectively with other people? I would think that their relationship with God must be “made right” where communication is again open and meaningful before they can even attempt communicating with others.

Denise Portis
©2007 Hearing Loss Diary

Pros and Cons of Sign

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January 2, 2007

Pros and Cons of Sign Language

As an oral, late-deafened adult I have discovered there are some very real pros and cons of knowing sign language. I don’t like to “look back” with regret about choices made, as I believe that even bad choices spawned growth and taught me valuable life lessons. As useful as sign language has been for me, however, there are times I wish I had never learned ASL.

I believe that there is an incredible gulf between those who view themselves as culturally Deaf, and those who are oral deaf, or late-deafened. Reading endless stories and viewpoints about the recent Gallaudet turmoil, has in many ways defined those groups, if by no other means, as a result of vehement opposition and disagreements. I’m reasonably certain I would be defined as not being “deaf enough”.

Pros: I first learned a “handful of signs” at a youth camp when I was sixteen. It wasn’t really ASL, as I simply learned a few signs to accompany “campy” type of songs. In college, however, I made a Deaf friend and as the university offered sign language courses, I decided to learn. Since then I have taken numerous courses and been involved in certificate workshops, etc.

So when I do come in contact with a culturally Deaf person, I can communicate with relative ease. Unfortunately, I do not know any Deaf at work, church, nor are there any Deaf in my neighborhood. My receptive skills are “hurting” because of this, and I’ve been trying some new things as I simply do not get to use ASL as a language very often. Teaching ASL is one thing, but using it daily with someone who uses ASL as their primary language is another!

ASL comes in handy at home. My daughter is fluent, and my son – well he tries really hard. My husband cannot sign very well, (he claims manual dyslexia) but has amazing receptive skills. He “reads” sign better than he can “speak” sign. So if I’m giving my ears a rest, or if it’s late at night after I’ve already hopped in the shower and dressed for bed, ASL is a godsend!

Cons: Prior to using the phone more after my CI activation, I would use IP Relay. Whenever I made doctor’s appointments, I was always asked if I wanted an interpreter present, or if the doctor’s office needed to schedule “Deaf Talk”. I would explain that I didn’t need an interpreter, that I was oral. Do you know how hard it is to explain that you are deaf enough to use Relay, but not so “deaf” you need an interpreter?

In shopping, if you explain that you “missed that, and could you repeat it?”, horrified cashiers retort that they don’t know sign language. It’s tough explaining to the same cashier you had last week that you don’t need her to sign. (Just to speak without the wad of gum in her mouth big enough to choke a horse!)

When I looked into an online graduate course this past year, I had to investigate as to whether the required “on site” classes would provide CART. It took forever to explain that I didn’t need to schedule classes where an interpreter could be hired. I wanted CART, not an interpreter!

Friends with the best intentions have given advice to me when I grumbled about a difficult time at a training I attended. They asked why I didn’t ask for an interpreter. I am not Deaf, I’m deaf! I don’t want or need an interpreter. I just ask that the speaker use the microphone all the time. Please repeat the questions asked by those not using a microphone.

I’m sure every late-deafened adult has been in a situation where the assumption is made that because you have a hearing loss, you know sign. When the vast majority of those with hearing loss do not use sign and communicate orally, why is this still the assumption by those with normal hearing?

Yes, I know sign. But I have made the choice to associate myself with oral late-deafened adults. I wish our population did a better job of communicating what their needs are.

I went to hear a decision voted on at the FCC recently. Going through security, I explained to the guard prior to walking through the metal detector that I was late-deafened and pointed to my CI. (I always get a huge buzz walking through that thing, and wanted to make sure that if he said something, he knew I wasn’t going to hear it). He asked if I needed an interpreter and picked up his radio. I waved and said, “No, no! I don’t need an interpreter, just be sure to get my attention if you ask me something.” After walking through he asked to see my cell phone and to demonstrate that it worked. (Not sure what that had to do with security, but I complied). While showing him the phone he asked, “So you don’t sign?”

“Well, I do know sign but don’t use it to communicate. This CI keeps me communicating the same way I did when I was born into this “hearing” world” His confused look told me he didn’t “get” why I do not choose sign to communicate.

So although I am many times grateful I know sign, I have had a couple of weeks where I wish I did not. Pros and cons – I suppose it’s healthy to remember there are both in most things we experience.

Denise Portis
©2007 Hearing Loss Diary

Communication

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COMMUNICATION

I realize that communication issues are problematic for the majority of our population. Gender, race, religion, education, financial status, personalities, nor background, level the playing field for individuals seeking to improve their communication skills. No person is free from the types of problems poor communication creates.

So what happens when a person becomes deaf? According to the National Institute on Deafness, (http://www.nidcd.nih.gov/) deafness is a communication “disorder”. How much more difficult is it to communicate when you are deaf?

My husband has been discussing communication with me a great deal lately, and we’ve had many lively interactions on the topic. Certainly, married couples should strive to have excellent communication skills.

Helen Keller, who was both deaf and blind said, “I am just as deaf as I am blind. The problems of deafness are deeper and more complex, if not more important than those of blindness. Deafness is a much worse misfortune. For it means the loss of the most vital stimulus – the sound of the voice that brings language, sets thoughts astir, and keeps us in the intellectual company of man.”

I believe she succinctly describes what hearing loss can do to relationships. Something that came as a surprise to me after having lost my hearing, was the realization that my husband and I must have been good communicators. For the loss that I felt from being unable to communicate effectively came from deep within, and seemed to touch every part of our marriage. The following journal entries, will be some personal ideas and discoveries I have made in my own trials of communicating. I only know how a tear in the fabric of communication affected me, so my story is rather one-sided. I do know, however, that it took finding a Tailor who could mend those tears and bring me closer to Himself.

Denise Portis
©2006 Hearing Loss Diary

Spitless

Published on by hearingelmoLeave a comment

I’ve not tried to really sit and meditate on the “reason” prior to this; however, I find it very difficult to advocate in a positive way when I am alone.

Yesterday, with my husband in Denver, my daughter at work, and my son at a debate tournament, I found myself traveling to Wal-Mart alone. We have a new “super” Wal-Mart, although it is not exactly new. An “old” Wal-Mart was converted and enlarged, now selling groceries, clothing, hardware, lawn and garden supplies and electronics. My family teases me often and calls me the “Wal-Mart Queen”; however, I normally shop at a smaller one closer to my home. I went to this “super” Wal-Mart, because I was closer to this particular GIANT store after dropping my daughter off at work.

I shopped for about an hour and a half, purchasing different things that we needed at home, along with a few things that weren’t on my list. I changed shopping carts twice while in the store. My CI can easily pick out “squeaky” shopping cart wheels within seconds. The squeaks got the best of me and I changed carts the first time within minutes of arriving. The 2nd cart had a “clunkity-clunk” sound along with a rattling vibration that could be felt clear through the cart and into my sensitive fingertips. Approximately 15 minutes later, I abandoned that cart as well, to a cart I thankfully could not hear at all. I was a little bit in awe of the fact that I could even hear these sounds to the point that they bothered me. On past shopping trips, my kids would have to give me “heads up” about noisy carts, as I never paid much mind to people passing by and wincing at the sound emanating from the wheels of the cart I happily pushed around!

At the checkout, a scrooge of a cashier scanned my items and began a conversation. Now I picked out “Mr. Scrooge” because the other cash registers in the vicinity had people that appeared to have accents working at them. I have an accent myself, and I’m told it can be rather pronounced when angry, tired or even excited. I had to force myself to stop feeling guilty about picking out people who looked like they could speak clear English a long time ago. I don’t consider myself even in the least bit racist. Experience, however, has taught me that people prefer not to have to repeat something once, let alone 4 or 5 times when I’m trying to hear and understand through a heavy accent. As cashiers are busy and have other customers to wait on as well, I try to make everyone’s lives a little easier by looking for someone I will have an easier time understanding.

Mr. Scrooge began a conversation almost right away. It seems he hasn’t had a break and he’s two hours overdue. I responded sympathetically, but it only served as an impetus to lower his voice and whisper something about the managers to me. I reached up and quickly switched my CI program to WHISPER, and I still only picked up snatches of angry words. I finally held up my hand and with the other pointed to my CI.

“I’m sorry, but I have a hearing loss and I can’t hear you when you whisper with all of this background noise”.

His response was to tighten his Mr. Scrooge mouth while zipping it shut. At least his hands could still move as he quickly finished scanning my items. Praise God for technology and the capability of seeing the price yourself, scanning your Am Ex card, punching in your zip code when the security box asks for it, and signing your signature when prompted. I could do all right in some types of check out lines even if the cashier decided conversation was at an end!

I wheeled my cart out of the line and towards the door. I saw a VERY young man in a security guard uniform at the door. I caught his eye for a second and thought, “this boy could be my KID!”

He began to say something, but he was looking beyond me and quite a bit to one side. I didn’t catch what he said, but was certain he wasn’t talking to me. I pushed my cart past and continued through the doors. If only I had thought that he was extremely young and insecure enough not to make eye contact when talking to a stranger.

Out of the corner of my eye, I caught a flash of movement right before a hand forced my cart to stop. There’s a good ol’ saying from the South that adequately explains how that affected me. I was scared spitless. I literally mean that too – I had NO SPIT.

The security guard’s face was red, and he said something to me. Now I’ve discovered something quite by accident. The first time it happened, I was driving with my newly licensed teenager. Fear keeps me from hearing with my CI. I get a sort of “roaring” in my ears as the negative adrenaline surges over me, and I even see stars! I’m certain part of the reason may be vertigo. Irregardless, I stood there with my ears roaring, my eyes desperately trying to read lips on a mouth with a wad of SOMETHING in it, with NO SPIT in my own!

“Excuse me? I can’t understand what you’re saying!” I intoned carefully. I was trying hard not to shout, as I still could not hear due to the slowly subsiding roar in my ears.

Again he said something after moving the “wad of something” to the other cheek, his hand still on my cart and an angry red face. Me? Well I was still without spit!

I finally dug in my purse and pulled out my receipt and handed it to him while saying, “Is this what you need?”

The roar was gone, and he ground out, “YES, for the third time!”

“I’m sorry but I have a hearing loss and I didn’t hear you”, spoken with quite a bit more ease due to the fact that I now had more spit.

“You aren’t Deaf cuz you’re talking!” he blazed out. Later, I was calm enough to pray for him knowing he has to have a hard job looking so young and covered in acne and insecurities. But my first reaction while standing there was shock.

Perhaps it came so easily because I had been without spit immediately prior; but I think it’s because I was alone. When my kids are with me, I tend to be keenly aware of the fact that their ears work just fine as do their eyes. Every way I react is a lesson to them about choices I make when treated unfairly. Life isn’t fair, and they will have plenty of their own lessons one day even with normal hearing.

However, standing there alone, my only reaction was SHOCK. The next thing I knew I was standing behind my van. I don’t remember walking there at all. I mechanically put things into the back and slipped into the driver’s seat. I sat there for a few moments just feeling and digesting how stunned and spitless don’t go together well.

I happened to notice the scrunched receipt in my hand, and noticed that “27 inch Christmas wreath” was now highlighted in bright yellow. My mind raced to put the pieces together as I desperately tried to make sense of what just happened. I can only assume that as the wreath wasn’t in a bag, he had to check it off my receipt.

As I regained my – well my SPIT – my now normal reaction set in. I began to cry, and I allowed the tears to fall silently down my cheeks for several moments, heedless of the fact that my make-up was washing away. Trying to “get a grip”, I searched around for the box of Kleenex.

Why is it so hard to advocate in a positive way when alone? If my children are with me, I am able to advocate effectively. Still feeling rather devastated I thought of all the times I said nothing when something SHOULD have been said.

I couldn’t just sit there and feel sorry for myself as I still had to brave COSTCO. Besides, the cold was starting to seep into the van. As I turned the key and felt the van come to life under me, I noticed my CI was hearing just fine now. I also seemed to have some spit. To unnerved to even pray, I began to hum a favorite song of mine, eventually singing it out loud as I headed towards highway 355.

“…every blessing You pour out, I’ll turn back to praise! When the darkness closes in, Lord, still I will say –
Blessed be the name of the Lord, blessed be Your name! Blessed be the name of the Lord, blessed be Your glorious name”

I may be late-deafened, and can’t carry a tune anymore, but God does not care. All the way to COSTCO I joyfully chose to sing praise to God. I eventually found myself praying for the security guard as well. Funny how that tends to happen when you choose to see the world the way HE sees it.

I had no one to come home to in order to bemoan the unfairness of it all. Terry is living 2 hours behind me right now in Colorado. But I know I’m not alone, nor do I advocate alone. When I’m too tongue-tied to NOT… advocate I am still not alone. I know this because God loves me and reveals this love to me in ways that at times astonishes me.

As I write this, it is Sunday. We just returned from services at Summit Trace Church. This morning we were in a different theatre, and as the kids and I walked into the theatre we were using this particular morn, I noticed right away that all the aisle seats on the left were taken. These seats are ideal for me, as the speakers are on my left and closest to my CI. Pausing only a second or two, I slipped to the middle of a row with the kids.

As the services started, I eagerly worshiped in sign as the congregation sang, “The First Noel”. It should not have surprised me what Jill Craig said. Evidently she and a friend were talking just this week about choosing “joy”. I smiled as I thought about my Wal-Mart experience just the day before. However, in the next moment, I felt the hair on my arms tingle and a warmth of God’s everlasting love flow over me as I heard the opening chords of the next song. “Blessed be the name of the Lord”. I was almost … spitless.

I am reminded of His love in extraordinary ways!

Denise Portis
©2006 Hearing Loss Diary