Category: cochlear implants

It Takes Just One Voice

Published on by hearingelmo2 Comments

DSC031201

My “morning chore” this morning included cleaning up the porch and putting patio furniture up for the season. Each Autumn I accomplish this task, I’m reminded how desperately our deck needs replaced. I haven’t been out on the deck in about a week and was startled to find more Zinnias in full bloom. Don’t they know it’s late October? Most had died and I thought part of my morning chore for this designated “deck clean-up” morning was going to be to shut the flower pots down for the year. I just couldn’t do it… not with brand new Zinnias raising their beautiful colorful heads to celebrate this Fall Fashion Show going on in mid-Maryland right now!

I explained to Chloe how surprised I was to see brand new blooms on the Zinnias. Patient dog that she is she listened attentively, but I could tell she didn’t really understand what all the excitement was about! But you see? The Zinnias were not finished…

Disabled and finished?

This week I received a tearful email from a fellow HLAA (Hearing Loss Association of America) member. She was upset about the state of her local chapter. It seems they are having trouble attracting new members and the old members are rarely participating. They are SPECTATORS, but not PARTICIPATORS. A peer mentor at one of the local hospitals that performs cochlear implants for people in our area, she explained to me that she cannot even generate any interest in those relatively new to hearing loss.

“You can see that the word ‘disability’ has sunk into their very soul, impacting the way they choose to live their lives,” she explained. “I try to explain to them that hearing again through a cochlear implant is something to be celebrated! It is not normal, perfect hearing, but it is hearing and choosing to stay involved in the hearing world in which they were a part! If you talk to them you can tell they are depressed, defeated, and ACTING disabled. It’s as if all the color has gone out of their lives.”

I thought about my own support group and local chapter of HLAA. There are a handful of people who volunteer for everything, work hard at making sure the chapter is well run, make it a priority to attend each month, and reach out to other members who are on the ‘roll’.

DSC03113

These folks stand out. They smile, are involved in numerous OTHER community endeavors, love people, make a difference… they are colorful. In spite of their hearing loss, deafness, communication needs and problems, they are noticeable because of their focus on ABILITY instead of DISABILITY.

dAp

Fidos For Freedom participates in dAp programs throughout Maryland. Chloe and I have been to two of these early on in our training together. The disABILITY Awareness Program was started in the late 1970’s. The intent of dAp is to educate children and their teachers about disabilities, what it’s like to be a person with a disability, and to increase acceptance of people who may be ‘different’. I’m given the opportunity to talk about what I CAN do. Fidos For Freedom has been instrumental in helping me to be independent again. I have learned so much about what it means to live “in spite of” a disability. There are so many different disabilities represented in our client family. For many, being partnered with a canine partner helps them focus on the “can do” instead of what they cannot. Many enter the training program at Fidos pretty much beaten down by the fact that their life is now completely different because of a disability. They finish their training in full bloom. They stand out and make a difference. Their independence grants them the courage to re-take their life.

One Voice

I love people with disabilities. Near and dear to my heart are populations with hearing loss, deafness, Meniere’s disease and brain injury. I belong to these populations. I wrote back to my friend this week and tried to encourage her. Many small chapters of organizations like HLAA have to make the decision to perhaps only meet quarterly instead of monthly. What you can’t do is “close shop”. If you make a difference in ONE person each year, is that not important?

Do you feel alone? Ever feel as if you are carrying the load alone and GEE HAS IT BECOME HEAVY? You may be one voice. Are you caring for an elderly parent who has Alzheimer’s? Are you a stay-at-home mom with three little ones under 5-years-old and no one at home SPEAKS ADULT? Do you work with people with addictions, and feel your heart breaking every time someone returns to their drugs or alcohol? Do you love someone with TBI who will never be the same person they were prior to their accident? Do you or a loved one live with a terminal illness?

You can remain in FULL BLOOM … in spite of it being late October. You can be ONE VOICE that makes a difference. An amazing thing can happen to ONE VOICE that remains in full bloom in spite of the season. It may take time and a lot of effort. It may not even happen in your lifetime. But one voice is usually joined by another… and then Another… and ANOTHER. You may never discover your own influence this side of Heaven. Be influential anyway. Stay in full bloom. Be one voice… one that makes a difference. If your life is all that is changed, is that a bad thing?

Some of you may cringe. I love Barry Manilow. (Sue me!) My older brother got me hooked on him in the late 70’s. This is a short song, but I ask you to listen to it and think about it from the point of view of making a difference.

Denise Portis

© 2009 Hearing Loss Journal

Not an Exact Science…

Published on by hearingelmo5 Comments
Just because I can zero in and concentrate, doesn't mean I'll always get it right!
Just because I can zero in and concentrate, doesn't mean I'll always get it right!

Having a hearing assistance dog has its advantages when I do not hear “surround sound”. I have trouble with directionality as I only have one cochlear implant (and due to my balance problems very likely will not ever have a second). I have learned to pay attention to where Chloe is looking in order to figure out from what direction a sound is coming. The only problem is… sometimes I don’t pay attention.

Today our sweet cat, Kiki, found herself stuck due to my inability to hear and failure to take note of WHY Chloe was parked on the stairs instead of next to me. Kiki decided to squeeze between the door and the glass storm door in order to better partake of the sunlight and “view”. I did not know she was there, and closed the door because of the draft as I walked by. Thankfully, my husband came home about 10 minutes later and saw “cat on glass” as Kiki was smushed like a sardine between the storm door and metal door. We retrieved her amongst a chorus of “poor kitty”, and “I can’t believe I did that” while Kiki just purred and basked in all the attention. yellowchairkiki Having a hearing assistance dog is not an exact science when it comes to utilizing her amazing ears if I don’t pay attention to where she is fixated! I really have to pay attention to why she is parked and pointedly looking in one direction!

Reading Lips/Speech Reading

Some people believe that everyone with hearing loss read lips well. Actually, they call it speech reading now, as really you are trying to discern what someone says solely by what you see on their mouth as they speak. Speech reading is not an exact science. As a matter of fact, mistakes are often made by even the best of speech readers. Now that I hear as well as I do with my cochlear implant, I have lost the ability to speech read to some degree as I may once again rely on what I am hearing to understand in many situations. I do still rely on speech reading in noisy environments, and I will always be a big fan of closed captions. Several friends (God bless ’em) have started posting video links in Facebook that have the lyrics attached as well. This only enables me to hear BEST, so I am always thankful for what I see in addition to what I hear.

A couple of nights ago, my daughter was talking to her boyfriend on Skype. They go to separate colleges and during the school year have a “long-distance” relationship. My husband and I graduated from different colleges as well, but our only hope of contact was through a weekly letter (through good ol’ fashioned snail mail) and the occasional phone call. I was still able to use the phone well at the time, and waited by the pay phone at the end of the hall every Friday night. Technology has changed “long distance relationships”. My daughter actually has “candlelight dinner dates” with her boyfriend via Skype. They talk almost daily either “face-to-face” with Skype and webcam, or a minimum of numerous texts sent immediately through the easy access of cell phones. I popped my head in the other night and found them “talking”. My daughter “muted” the long-distance boyfriend so that she could ask me what I wanted. (Another interpretation, “Can’t you see I’m busy? Hurry up!”) Her boyfriend was still talking, so I told her what he was saying. She quickly typed (as you can both speak and type thru Skype) and asked him if what I said he asked was what was actually said. I was right on the button! She unmuted BK (the boyfriend) and both were amazed at my ability. I immediately chalked it up to “luck” and reminded them both that it isn’t a cheap parlor trick! It takes work and concentration to really be good at speech reading. I simply got lucky!

Think About What Looks Alike

I picked up a good HoH (hard of hearing) habit from a friend in California in 2006. She coached me to learn to repeat to people what I thought I heard even if I knew it could not be right. By doing so it did several positive things:

1. It allowed the person with normal hearing to only have to repeat what I got wrong, saving them the time and possible exasperration of repeating everything verbatim.

2. It allows the person with normal hearing to begin to understand what things sound like to ME… a person who hears with a cochlear implant. They learn to be experts at rephrasing things and finding synonyms to explain the same comment.

3. It allows both parties to see the “funny” in trying to make sense of what I hear. I both SEE in speech reading and hear with a cochlear implant.

4. It allows the HoH person to learn to extend grace and to accept that mistakes are made and most people are eager to help clear up the confusion. It creates a positive communication environment.

Stop for a moment and think about what looks the same on the mouth when words are enunciated. Some mistakes I’ve made:

1. I thought someone walked towards me with an admiring glance and said… “Sweeeeet…. heart”!

Really they were looking beyond me and saw a red corvette… they were saying “Sweeeeet Car!“

2. The words six and set look the same as SEX. (yikes!)

3. Mom I’m knitting hard!

Which was really, “Mom, I need the car!”

4. Mrs. Portis, I forgot my paper. Canons get formica? (I was really scratching my head in confusion on this one)

Mrs. Portis I forgot my paper, can I run get it from my car?

Learning to speech read more accurately, can however, help a HoH person communicate better. My local chapter of HLAA has plans to do a 2 hour “speech reading tips” class in the next couple of months. Some great resources that we will be utilizing, come from CHHA (Canadian Hard of Hearing Association), and include:

“Sound Ideas: Managing your Hearing Loss” manual and video

“Lip Reading Naturally” by Frances Mezei and Shirlee Smith

Think It Looks Easy?

I have a challenge for you. Mute your television and see if you can figure out what is being said. You might be surprised at how well… or how poorly you do!

Some additional resources:

1. http://www.agbell.org/docs/speechreading.pdf

2. http://www.lipread.com.au/Products.html

3. http://www.amazon.com/Lessons-Lip-Reading-Self-Instruction-Edward-Nitchie/dp/1428638008

4. http://www.lipreading.com/

Denise Portis

© 2009 Hearing Loss Journal


Yup! Wind in the Trees!

Published on by hearingelmo4 Comments

Who would have thought even five years later I am still picking up sounds that I hadn’t heard the year before? I have had my cochlear implant for close to five years. I am only mapped once a year now at Johns Hopkins. Whatever my audiologist did this past May enabled me to hear the wind in the trees like never before.

I grew up in Baca County Colorado and we had PLENTY of wind… but not so many trees really. Where there were trees, it meant there was a house there. A bunch of trees in one place, meant there was a town. Many folks think Colorado is all mountains, but a good part of it is grasslands and plains. Yup. I grew up on “Little House on the Prairie”.

When we first moved to Maryland in 2002, I could not hear without the help of two powerful BTE hearing aids. Over the next two years I would lose what remained of my hearing. People with normal hearing do not stop to think about what it means to lose your hearing gradually over time. You don’t even realize sounds “go missing”. I can’t put my finger on when I stopped hearing the phone ring… I only know it was when my kids were little and I lived in NC. I can’t remember when I stopped hearing cats purr, the wind in the trees, or the sounds of a vehicle.

One of my friends who is bilaterally implanted with cochlear implants heard a strange noise in the motor of her car this week. She went by the mechanics and explained that she uses cochlear implants to hear and “I’m not sure if it’s a new sound or just new to ME”. She was so tickled to have been RIGHT about the sound, and very glad to catch something early that ended up being a simple “fix”. Had she not been able to hear it, eventually it may have been a more expensive and difficult “fix” for the mechanic. I was practically jumping up and down for her… understanding what it is like to realize you can hear something! I think especially to adults who are able to recognize something new and understand it’s the result of being able to hear again… these new sounds are special!

With wind it is a little tricky. You don’t actually see the wind, you see what the wind can do to objects both in nature and man-made. I have memories of the sound of a windmill on the ranch I grew up on in Colorado. I’d love to “hear it again” some time! I realized I was really hearing the wind when I parked myself in the yard in a place where the fence acted as a windbreak. If I closed my eyes (so that my brain wouldn’t SEE the wind and influence what my cochlear implant was hearing), I could hear the wind. In the trees. WOWSIE.

So yup! It’s only the wind in the trees. But to me? I’m hearing something I haven’t heard in over a decade I know! I just love my Nucleus Freedom!

Denise Portis

© 2009 Hearing Loss Journal

Raindrops on Roses

Published on by hearingelmo1 Comment

rose Some of you may have seen the title of this post and cringed. Me? I’m not ashamed to admit that I love “The Sound of Music“. I remember watching the musical on television as a kid, which very likely resulted in my seeing it at least once a year. As a young adult I purchased the movie in VHS, and saw it with closed captioning for the first time. Later, I asked for the DVD version! So now if I’m really in the mood I can slip downstairs, watch it, and sing along! (At least… if one of my teens turns the T.V. on and instructs me AGAIN about the TIVO remote!)

The Discover of Re-Discovery

You may HATE “The Sound of Music” – normally made evident by the cringe and shudder that rips through your body when you hear the name – but everyone has a list of “favorite things”. You may not even be AWARE that you have a list of “favorite things”, but you do! It’s there… tucked away in the corner of every person’s mind. Your list may not include raindrops on roses, but you have special things that make you smile with simply the thought of those “special things”.

I try to periodically look through my own special list and perhaps make updates or “tweek” it a bit! Yes (embarassed grin), my list is actually typed out and saved on my computer. But honestly! Did you expect any less from ME?

If you haven’t thought about your own list of “favorite things” in awhile, I encourage you to do so. You see? I believe it is important to re-discover the simple things that make us happy. Don’t fool yourself into thinking it is all about money either. You could win the lottery, sure… but you’d only be rich, not necessarily happy. I think you will discover like I did, that my “favorite things” list consists of relatively simple, yet heart-warming pleasures!

The Ever-Evolving “Favorite Things”

It may have been awhile since you really sat and thought about your own list of “favorite things”. In fact, it may have been so long since you indulged in this luxury of thought, that your list has changed quite a bit. I admit that at 43-years-old, my list looks different than it did when I was 23-years-old. Yup! A few things are reminiscent of my younger decades! For example I will always love “Curling up in my pajamas with a good book and a candle burning nearby”.

Obviously, my life has so dramatically changed since the activation of my cochlear implant, I have numerous new “favorite things” that make sounds. A cat’s purr, my hound dog’s longsuffering SIGH, and miracle of miracles? On a quiet afternoon on the back porch this summer, I heard the beating of a hummingbird’s wings. That was a real jaw-dropper for me, and one that I’m sure will be permanently etched in my own list of “favorite things”!

Care of the world on your shoulders? Worrying? Making mountains out of mole-hills? Just feeling blue?

“I simply remember my favorite things… and then I don’t feel… so bad!”

(If any of you ever find the video with captions, let me know?)

I’m not remiss in remembering to thank God for my “favorite things”. I’m certain the times I spy a double rainbow, He is tickled to have provided something special for me on a day I needed a glimpse of a “favorite thing”!

Denise Portis

© 2009 Hearing Loss Journal

Random Contemplations

Published on by hearingelmo2 Comments

istock_woman_thinking.70184934 I was trying to fall asleep last night and decided to brainstorm about what I could write about this week. It’s been an “uneventful” week, which is really a good thing! I don’t mind uneventful weeks.

As I tried to think of something that might interest YOU, I realized that my brain was busy with random contemplations. Some were serious. Some were… erm –

NOT.

1. Why is it that now I am over 40 I get these stray hairs on my CHIN? And why must these hairs have roots that stretch all the way to your big toe? It’s the only reason I can think of that when you pull one with the tweezers your big toe curls as you scream.

2. Why is it that I enjoy hearing with my cochlear implant so much, and yet there is a certain relief to remove it at night before bed? Perhaps it is just the knowledge that I always know I’ll sleep well (unless I’m brainstorming). Perhaps it’s because there is a difference between hearing and hearing WELL? It takes work in the form of attentiveness, concentration and perseverance to communicate in this noisy world. I’m not complaining… I’m just sayin’! Relief!

3. Why do dogs turn around three times before they lay down? Why do three of our dogs turn in “one direction” before they lay down, and one of the dogs always turns in the other? Is he “left-handed”?

4. Why is it so difficult to find plain sweettarts in a roll? Who carries those now? I can’t find them anywhere!

5. Why does my cochlear implant always give me a warning “beep” that the batteries are low when I’m driving in the car? Why can’t it happen at home before I leave? How DOES IT KNOW? Sigh.

6. Why do young adult kids in college sigh and roll their eyes if you knock on their door to bother them while they are doing homework, yet will pop into my office to bother me while I’m doing homework of my own now? Why doesn’t it matter to me? I drop everything and give them my undivided attention and sit and contemplate how special they are after they leave. I’m pretty sure they don’t do that when I leave THEIR room!

7. Why am I the only one that can close the bread properly? I don’t even eat a lot of bread! How hard is it to twist the excess plastic at the end, and twist a “twistie-tie” around it? It apparently requires a college degree.

8. Why does God always send me “something” just when I need it most? Whether it be a verse, or an email/post from a friend who cares, or a song? I had forgotten how much a song can do for the soul, and try to “tune in” now that I can hear again. Sometimes? I don’t even realize how much I need something from God until He sends something my way.

9. How did I let blackberry season come and go and not get out somewhere to pick some? What will I do this winter without blackberries to eat? I’m going to have to corner friends next year and beg them to go with me.

10. Why does it seem like we don’t have time to send someone a “real” card (not an e-card)? It isn’t until I get one in the mail myself that reminds me why it is so nice to see the real hand-writing from someone who cares.

11. Why does Chloe bark at horses if she’s in the car, causing my cochlear implant to stop (ADRO program) because her bark is too loud, but when she sees a horse face-to-face and outside the car she tries to hide behind my legs?

12. Why do people say men are from Mars and women are from Venus? Cripes, people… we are all living on EARTH. Get over it! Yeah we act different, but that makes life interesting.

13. How does Chloe know when I turn my alarm off the night before I know I can sleep in? She must have an internal alarm clock, because she gets me up at the same time regardless. If my alarm is SET and goes off, the licks my arm or hand and bumps my face. If my alarm is NOT set, she jumps on the bed and tackles me?

14. Why do I love bananas, but cannot stand banana pudding, popsicles, taffy or moon pies? Sorry… can’t add much to this one.

15. Why is that I felt like my mom was a know-it-all growing up, and now that I don’t live with her I realize she really did? I miss my mom…

16. Why can’t the Denver Broncos have a winning team? I mean… I miss the Orange Crush. I even (gulp) miss Elway. Somebody shoot me…

17. How hard can it be to find the LOTR trilogy in DVD? I can’t find it ANYWHERE because they are coming out with Blue Ray soon. What about those of us who still use regular ol’ DVD players?

18. Why is it that I have a college degree and am in grad school and can’t work a remote? I can’t even turn ON our television. There is one remote that turns it on, one that runs the TIVO, and one that runs the volume. My kids can do it, and I cannot.

19. Why are solitary walks (with perhaps just a dog by your side) one of the most peaceful things a person can do? Why don’t I deliberately and habitually make time to do something that brings me so much peace?

20. What’s not to love about Facebook? I love to look at … faces.

Denise Portis

© 2009 Hearing Loss Journal

Disappointed and it’s ALL MY FAULT

Published on by hearingelmo2 Comments
This is one of my all time favorite paintings by Ron DiCianni
This is one of my all time favorite paintings by Ron DiCianni

Last night our church had a special prayer meeting. I’m always “in” for prayer meetings! I wish we could have them more often than we do. I’ve been a big fan of prayer since about 1993. That was the year I began losing my hearing. Nothing like slowly losing the ability to communicate well with other people, to drive you to your knees to learn to communicate with God. I suppose in many ways, prayer is one of the reasons I do not regret being late-deafened. I’d never want to go back and undo all that I’ve learned about prayer.

My Own Fault

I’ve learned plenty about prayer, but I must not have learned much about asking for assistance in advance! You would think I would learn to ask for help in the right way, and in time to allow folks in charge to be able to assist me! I mean? How hard is it to shoot an email to the pastor to remind him that I’ll need everyone to use the microphone if they speak from the floor?

There were around 20 people there last night. Small groups are something I look forward too. As soon as the pastor saw me he made eye contact and let me know he was going to use the microphone. Whenever possible, he asked folks to come up to the microphone. When he asked questions that required “popcorn answers”, he repeated what they said into the microphone as it would not reach to the back of the group. Sometimes, however, a person answered much longer than what may have been anticipated. The pastor was forced to “interpret” and condense what they said. At certain points, he could tell someone was going to speak longer, or perhaps someone volunteered to pray for a specific need. He asked them to come up to the microphone. (whew). Had I let him know in advance I was going to be there, I’m sure they would have had a cordless microphone ready!

As a person with hearing loss, it is YOUR responsibility to make sure that the people at a meeting you are going to attend know in advance that you will need some assistance in order to hear well. People with normal hearing in a group of twenty very likely do not need a microphone at all. As a matter of fact, I don’t think our pastor had planned in advance to use one because he had to “borrow” one off the musician at the keyboard!

I love my cochlear implant! LOVE IT! It doesn’t make me a person with normal hearing, however! So when I know I’m going to attend something in which I may have trouble hearing, it is my responsibility to give someone in charge a “heads up” that I’ll be there.

Sometimes you may need to attend something in which there is no easy way to offer assistance so that you hear better. (Birthday parties, baby showers, picnics, etc.) We as late-deafened people still have a responsibility to have the right attitude about the activity. Let’s face it! There will be times you simply will not hear well. It’s not anyone’s FAULT… it’s just a fact of life for a late-deafened person. Your responding in a gracious way is the right way to go. Learn to ask people to repeat things the right way. Perhaps that means repeating for them what you DID hear, so that they only have to repeat what you did NOT. It may mean asking to step over to the side so that you are not quite so much in the middle of a lot of noise. It may mean that you are willing to bring a neck loop and/or assistive listening device. Relax, and learn to have fun even if you are not able to hear everything. Chances are the people you are with really care about you. They cannot ever fully understand what you live. Don’t punish them for that!

After prayer meeting last night, I was crying before I could even get out the door. And let me tell you Chloe was having to jog to keep up! I was just so ticked off at myself for having poorly planned, and so disappointed about not hearing very well… I hate crying in public, but gee was I mad at myself! I know better! I’ll do better! GRIN

How to Handle It?

So? What does a late-deafened person do when you’ve alerted a group that can assist in ways such as a cordless microphone being ready, and the group “forgets” or overlooks your need?

A. Continue to remind them, but don’t mention how you weren’t able to participate this time.

B. Express sincere regret at not being able to fully participate and ask if there is anything you can do to make sure assistance is available next time.

C. Knock some heads together.

D. Whine and complain and never return.

E. Pout and embarass anyone in charge with a loud verbal rebuke after the meeting.

Hmm. You know? There may be more than one right answer here and it may depend on your own personality. (Answers C, D, and E are really not great choices folks!) The key is to remember that what you say and how you react may affect how another person with hearing loss is assisted by this group in the future! Lay the groundwork for good relations! Another person with hearing loss may reap the benefits of you having handled things the right way!

Denise Portis

© 2009 Hearing Loss Journal

Get My Attention First

Published on by hearingelmo1 Comment
Denise and Chloe at the Aquarium in Baltimore Aug. 23, 2009
Denise and Chloe at the Aquarium in Baltimore Aug. 23, 2009

Dog Training 101

When I first began training at Fidos For Freedom in Laurel, Maryland, I learned from trainer Tracy B. that it is very important to use your dog’s name. This was especially important on the training floor where there were numerous dogs present all of which were being given obedience commands by their human partner. Calling the dog’s name gets their attention first. Follow that with a command about what you what them to do, and then lavish praise.

Even though I only attend the trainings on average twice a month now, I still make it a habit to use Chloe‘s name first. We have another dog that is never far from Chloe when she is home. Tyco is our family dog and is a two-year-old Norwegian Elkhound. He’s a “dog’s dog”. Oh sure… he loves us, but he idolizes Chloe. So where Chloe is, Tyco is there as well.

My husband was running into a road block on the stairs when he first arrived home from work. Both dogs would park on the stairs – entire bodies all “a-wag” waiting for him to acknowledge them.

I have finally taught Terry actual obedience commands (you CAN teach an old dog new tricks) so instead of saying, “Would you please MOVE?” he will say “move” with some authority in his voice instead of a question. The only problem was that he failed to use either dog’s name. I had to remind my “old dog” that he needed to use their name first. Now when he arrives home he will say, “Chloe move” (and she does), and “Tyco move” (and he does only because he follows Chloe – GRIN).

When he gets to the top of the stairs, he can put his things down and greet the dogs “proper-like”.

Hearing with a CI

When you have a hearing loss for twelve years and then receive a cochlear implant, you still do not hear perfectly. In spite of the fact that CI’s are bionics, you will also discover that you are not Jamie Sommers who can hear BETTER than folks with normal hearing. As a matter of fact, hearing takes WORK. Don’t get me wrong… I LOVE what I’m hearing and am so thankful for this technology! In a quiet room with few distractions, I can usually carry on a conversation without even having to look at you!

Let’s face it… the world is not a quiet place and the times I find that I’m trying to have a conversation in a quiet room are few and far between. Instead there is normally background noise. It can be noises like the television, stereo, pets, restaurant noise, crowd noise, etc. So the majority of the time I am trying to hear ONLY your voice amidst all the sounds my CI picks up for me. I have special programs (Smartsound NOISE or FOCUS) that allow me to pull only what I’m looking at closer; a type of directional microphone really! However, it is NOT a perfect solution. The background noise never stays at a constant level. It can get louder or softer. Hearing will never again be something that just “happens” for me.

It takes work.

I must concentrate.

It’s a shame I don’t burn calories!

Is it any wonder why late-deafened folks are so exhausted at the end of the day? I require 8-9 hours of sleep each night. If I don’t get it, I do not function at 100% the next day. I’ve had days where a sick teen or ill service dog have kept me up most of the night. I rarely even attempt wearing my “ears” (cochlear implant and hearing aid) the next day as I know I will hear little since I cannot concentrate.

Use My Name Please

It is very helpful to first use the name of someone you are conversing with that has a hearing loss. Hearing with a CI, I learned pretty quickly that in a crowd of noise it is in my best interest to work at tuning out all the sound. I recognize my name very easily, even among the buzz of voices around me. I’ve always been very thankful my name starts with a harsh consonant! Hearing my name first allows me to identify who is addressing me. I can turn and face them and begin concentrating in earnest.

Unless we are having a face-to-face conversation, I may look away from you after we have visited a bit to see if Chloe is doing as I asked (normally a down/stay or stand/stay). Or, I may smile at people across the room, wave, etc. If I am not looking at you, it is VERY helpful to say my name again to let me know you are talking to me again. It gets my attention. My CI zeros in on the voice. I’ve even been able to discern my name coming from the mouth of someone across the room! I think the most difficult listening situation is to be in a small group of people who are talking in a larger room with other small groups talking. You find that you are “part of the group” and attempt following the conversation as different speakers say different things. It can be exhausting!

Look at Me Please

I find it amusing that people with hearing loss are often the worst communicators. At my local HLAA (Hearing Loss Assoc. of America) meeting recently, I attempted to have a conversation with someone after the meeting. People were talking and standing around; some were busy tearing things down. There was a LOT of noise. The person I was trying to talk to spoke to their feet. Granted… they had the nicest brown sandals I have seen in awhile. Out of habit I looked to see what they were looking at while they spoke. I had to apologize several times and ask them to repeat something. At one point, this person’s attention was snagged by the activity of another member who was cleaning up the snacks. The person I was talking to turned to see what this other member was doing. I could tell they were still talking, but it became a buzz of sound as soon as they turned their back to me.

I said, “Pardon me? I missed that part after you said what you did about the recent rains”.

They looked at me exasperated and said, “Even though you have a cochlear implant now you don’t hear any better than I do!”

I decided to walk away (as I didn’t think I could speak “kindly”). They were on their way to grab a snack before they all disappeared anyway.

You’ve Come a Long Way, Baby!

I have learned a few things in the four years I have been “hearing again”. It is OK to stand next to someone who WAS talking to you and wait until you are spoken to again. A touch on my arm, or using my name alerts me to the fact that you wish to speak to me again. When I was first activated, I would attempt to not look as if I were ESCAPING after someone finished talking to me. I’d go and find a quiet place and look with wide eyes at the different groups of people standing around talking. If someone waved and then started toward me, I would “brace myself” for the difficulty in conversing with them.

Now I can stand in a crowd of people and wait to be acknowledged. If no one gets my attention, I am at ease. I find that I am even brave enough to start a conversation on my own. After all, I pursued a cochlear implant so that I could continue talking to the people in my life.

This week my schoolwork was interrupted by an “incoming IM” from my daughter. She was in between classes and wrote, “Hey mom! Do you have your ears in? Can I call you?”

Seconds later I was talking to her on the phone. Perhaps this isn’t a big deal to those of you who hear normally. But I haven’t been using the phone for very long. Even after receiving a cochlear implant, it took a lot of practice and courage to start using the phone.

… and here I was in the middle of the day

… talking to my daughter

… on the phone.

I cried.

But they were happy tears!

Denise Portis

© 2009 Hearing Loss Journal

What does a “Drum Brush” Sound Like?

Published on by hearingelmo1 Comment

drum brush At church on Sunday I watched as the final seconds counted down to designate the start of our services. A timer displayed on the wall allowed everyone to see when the services were expected to begin at Daybreak Community Church. The band members rushed to thier spots and as the last second disappeared, the music director said “Good morning” to everyone present.

The drummer sat down at a single drum and microphone with a tool resembling the one you see pictured here. I had never seen this before as the “norm” for our drummer includes the entire drum set, cymbals, etc. I craned my neck to watch as he used what looked like a “whisk”, on a rectangular drum placed between his knees. I did my best to see if I could hear what sound he was making over there! Unfortunately, I could only hear the keyboard, base guitar and voices around me lifted in praise. It’s NOT that this is usually an unfortunate thing – smile! On the contrary, I am usually extremely pleased to be able to tell where we are as I look at the lyrics displayed on the wall behind the band! But today… I wanted to hear what this “whisk” sounded like!

Drum Brush

Immediately following the final “Amen” and parting song, I rushed up to the drummer with Chloe in “heel”. Because I didn’t even know what it was called, I reached over to his music stand and touched the “whisk”,

“Bobby… what IS that?”

“I call it a drum brush,” he explained while picking it up so that I could see it closer.

“A drum brush? What does it sound like?”

Bobby bent to his drum and “played it” again. I got down on one knee and moved my CI closer to the drum. I strained to listen… and could just barely make out a sound. It was a tiny, fluttery, BRUSH of sound. I smiled and looked up…

“Cool!”

Bobby asked, “What does it sound like to YOU?”

Hmmm… I had to ponder that for a brief yet “ponderous” second or two.

“I think it sounds like rustling leaves,” I replied.

“Hmm. I have always thought it sounds much like Jiffy-Pop popcorn,” Bobby grinned in response.

“Yeah! Yes, it does!”

I knew that agreeing also meant that I had instantly aged myself. For “Jiffy Pop” was something that was long before microwave popcorn. (Since Bobby and I are close to the same age, I knew he dared not make a crack about my age… besides you can STILL buy Jiffy Pop!)

Crackling Leaves and Jiffy Pop

If you click on the videos below, those of you with normal hearing or those who “hear again” with the miracle of a cochlear implant, you should be able to hear the sounds.

    

Memory Makers

Since I have been hearing again for four years now, many times when I re-discover a new sound I equate it to a sound that I still have “stored in my memory banks“. The brain is unique that way. If I am hearing a cat purr, I have a memory of cats purring prior to my becoming deaf. I grew up on a farm in southeastern Colorado. We had many cats and I had stored away what a cat’s purr sounds like. However, if what I am hearing is new to me, I am unable to compare it to the same sound that I was able to hear in my past. The best I can do is compare it to another sound in hopes of being able to describe it and make sense of it as I listen with my cochlear implant.

To me… a drum brush sounds much like the combination of crackling leaves and “Jiffy Pop” popcorn! It is the best comparison that I can think of in my attempts to place a new sound from a new “noise maker”.

Adaptation

Having an acquired disability can “make” or “break” you. I remember when my husband and I first realized that my hearing loss was progressive. I was going to the audiologist about every six months as my hearing was noticeably worse. Holding an audiogram with visible, charted proof that you are losing your hearing is very sobering. It seemed as soon as I adapted to communicating at the current level of loss, I would again lose some more of my hearing. Eventually, I could hear very little in spite of two new BTE hearing aids.

Each time I learned to re-adjust I would try to remember what had worked well for me in the past. Having never been deaf before, I had no comparison. I could only remind myself that I needed to continue to be active and proactive in communication. It worked in my best interest to make my invisible disability – visible. I wore my hair up so that my colorful ear molds could be easily seen. I pointed to my mouth and asked for a repeat if I was having trouble hearing. If I could only make sense of PART of what was said, I would repeat that PART and ask for clarification of what I did not get. If the background noise was extreme, I would ask if we could move to a quieter location to finish the conversation. I tried desperately to remain upbeat and positive. The alternative was scary.

Desperation and Despair

At one point in the process of my becoming a deaf person, I had really lost all hope. I had just moved from North Carolina and was trying hard to not only adjust to a new job, a new level of hearing loss, and a new community, but I had lost every friend that had meant so much to me! My North Carolina friends found excuses not to visit and emails were many times lost in cyber space. I had a great deal of difficulty connecting with people at work and church in my new home. I felt alienated and alone. Couple this with a progressive hearing loss that eventually began to even effect how well I could communicate with my family, and you were looking at one WHIPPED puppy!

Instead of adapting and reaching out for help, I isolated myself and became very depressed. Early in 2003, I found that I was actually contemplating how to end my life. How did I get to this point? At what point had I “given up”? When had I decided to no longer attempt living in spite of a disability? I’m not 100% sure of when it all went wrong, but I suspect I knowingly or unintentionally stopped remembering how wonderful life is! My brain had so many wonderful memories of living a successful and abundant life, and yet I seemed incapable of accessing those memories! I’m very glad that God intervened through people in my life who recognized I had given up.

No Alternatives

There are not any alternatives to adaptation. Life can be… and many times IS hard. We must continue to adapt and “roll with the punches”. There are plenty of blessings and wonderful memories as well. Adapting means we deliberately adjust to change. It is a mindset and a choice.

Lose your job?

Work hard at enlisting the help of friends and acquaintances to help you network to find a new position. You will find your friendships strengthened and you may make a friend or two you didn’t know before. Often times God moves us to a new place to live and serve which ends up providing a great deal more happiness than what we enjoyed before. Most people find that they grow and mature as they re-work that old resume, touch base with contacts and put themselves out there to obtain interviews in their seeking employment.My husband recently went through this and even I noticed the growth in his life at the end of the journey. He is now much happier than he was prior to losing his job.

Lose a loved one?

It can be so hard to say goodbye to someone we care about. I cannot write much about this topic, for truthfully I have yet to experience the loss of someone very close to me. I have seen plenty of people in my life go through this even recently, however. Their lives are a testimony to ME whether they realize it or not. It isn’t a matter of “if” I will experience the loss of someone I love. It WILL happen. I am learning how it can affect a person, and observing God’s grace poured out on the lives of those who desperately need it!

I could go on and on about different things that can happen to a person that requires we adapt. However, I would be writing all day if I did that for in truth, life insists we all learn to adapt. There is no healthy alternative!

Denise Portis

© 2009 Hearing Loss Journal

B.L.I.N.G and Invisible Disabilities

Published on by hearingelmo9 Comments
B asically L iving I nvisible is N ot G ood
B asically L iving I nvisible is N ot G ood

My 19-year-old daughter came up with the witty acronym of B.L.I.N.G. (B asically L iving I nvisible is N ot G ood). It can be tied to a variety of life lessons.

Cochlear implant “bling” and Assistance Dogs

I am a late-deafened adult and I also have Meniere’s disease. Being “late-deafened” is a fancy way of saying that I lost my hearing after I learned oral language. Hearing loss can be mild, moderate, severe or profound. Although all levels of hearing loss affect the way in which a person freely communicates, a person obviously has more serious problems the more severe their hearing loss is. I think part of the reason that HLAA (Hearing Loss Association of America), ALDA (Association of Late-Deafened Adults), and other non-profit organizations for people with hearing loss have trouble attracting new members is that for most people, hearing loss is a nuisance and not a life-changing disability.

According to NCHS (National Center for Health Statistics), there are 37 million Americans who have trouble hearing (NCHS, 2006). A study done by Gallaudet in 2001 reveals that 8 million Americans have difficulty hearing even with the use of a hearing aid (Gallaudet Research Institute, 2007). This leaves approximately 29 million Americans who communicate effectively in spite of a hearing loss. This vast majority of people with hearing loss enjoy the invisibility of their disability as they function well “in spite of”. They “look” like everyone else. They do not have a need for support groups, advocacy or a connection to a non-profit organization because they have no need to identify with the hearing loss group. (I discussed why some people choose to not seek help when they DO have a significant loss here.)

When it became obvious that my own hearing loss was progressive, I began to realize how difficult it is to have an invisible disability. Prior to my cochlear implant in 2005, you would never know I had a disability unless I opened my mouth to speak to you. My speech was beginning to deteriorate just a little bit due to the fact I had not heard my own voice in a number of years. I may have interrupted conversations, not realizing someone else was speaking. I had trouble balancing the volume of my voice and more often spoke to softly than to loudly! Meniere’s disease kindly bestows noticeable symptoms for me when it’s a rainy or overcast day. You would never know it, however, unless I tried to walk a straight line or go up or down steps!

Being surgically implanted with a cochlear implant felt a little bit like a miracle. I could hear my own voice again in most environments and my speech improved dramatically over the period of only a couple of months! Having a cochlear implant does not mean I hear perfectly, however. There are some situations with a lot of background noise or poor acoustical environments that I may have to ask for a “repeat”. I may have trouble following conversations if I’m extremely fatigued. Prior to my implant, I had already adopted bright colored ear molds for my hearing aids and wore my hair up. I found out through a great deal of “trial and error” that it was in my best interests for people to know that I have difficulty hearing. After I received a cochlear implant, I didn’t see the need to change my adopted visibility. I wear “bling” on my CI, and it does draw attention to the fact that I hear but not in a normal way. It allows people to quickly identify that they may need to be sure to face me when they talk, or be aware that if I ask for a repeat it is not because I’m not paying attention. I really believe my “bling” helps other people as much as it helps me.

Having a hearing assistance dog who also does balance related tasks for me, brings attention to my disability as well. If you’ve ever thought about having an assistance dog, but do not like to field questions or have people notice you, then you may want to reconsider. Chloe comes from Fidos For Freedom in Laurel, Maryland. It’s not her bright red vest that gets attention. What makes people notice is simply the fact that she is a DOG! It’s not very often you see a dog in a store, restaurant or even church!

B asically L iving I nvisible is N ot G ood

Recently, God allowed a very mean person to be a part of my life for a short time. I say that GOD allowed this person, because it actually served to remind me that there are bigoted mean people who not only do not understand disabilities, but choose not to understand. Through FaceBook, I ended up “accepting a friend invite” because they were involved with someone I trusted. It didn’t take very long for this person’s true colors to be revealed. Comments left on my uploaded photos or “Notes” and eventually conversations between this person and myself and my husband through “instant messaging”, all revealed how there are still people who don’t “get it”. We received over 45 comments and messages from people astonished that there were still people like this out there! Some people do not realize that disabilities are often invisible. They do not understand that there are good reasons to make an invisible disability… visible! Some people do not understand that disabilities are not chosen. There are some that do not understand that disabilities may not only be life changing, they can be terminal. Many diseases and disabilities are those that shorten a life. God used this person in my life to remind me that some people are not only uneducated about disabilities, but they may willfully choose to believe the worst about those who have them. (It’s a great relief to not have to put up with this person anymore, but I do thank God that it was used to open my eyes!)

For me… basically living invisible is not good. There may be other people with Meniere’s disease or deafness who choose to live another way. I respect that! “Bling” works for me. It reminds even those I know well that in spite of my speaking perfect English (with the exception of a southern accent), I do not hear normally. It reminds them that if I repeat part of what I heard and wait for a repeat of what I didn’t… that it isn’t because I chose to stop paying attention. If I say, “whoa” under my breath and touch the wall in order to snap my visual field back into focus, they are reminded why I have a dog who picks up things for me and “braces”.

“Bling” and an assistance dog both serve to allow me to live with some independence. I don’t have to have family members with me now just to go to the post office or a store.

Invisible Awareness Week   0e1c199b505195ca9883a3faad5994b4

There are others who know what it is like to have an invisible illness or disability. September 14-20 is “Invisible Awareness Week“. If you or someone you know have an invisible illness, I encourage you to check out this site!

If you do not have an invisible disability, chances are you know someone who does. Do you know some of the strongest advocates for people with disabilities are those who do not have one? Think about it… who will get further with a person who misunderstands the needs, reactions, or communications from a person with an invisible illness or disability? Certainly people who live with invisible illnesses or disabilities should learn to advocate in a positive way. Their ability to do so helps us all! However, if you take a person aside and teach them… explain to them a little bit about another person’s disability or illness, it may mean even more! Every person can be a strong advocate for others.

Denise Portis

© 2009 Hearing Loss Journal

Sponge Bob Turns Ten!

Published on by hearingelmoLeave a comment

sponge

I remember when Sponge Bob first came on the scene! My son was only eight-years-old at the time, and kept talking to me about “this really funny sponge”. Thank goodness for closed captioning, because it is VERY DIFFICULT TO READ A SPONGE’S LIPS!

Now that I’ve been “hearing again” for FOUR WONDERFUL years, I’ve learned that Sponge Bob has a rather annoying voice. But… it’s at least not as annoying as Patrick’s!

Happy Birthday Sponge Bob! I’m glad I was finally able to HEAR YOU!

Denise Portis

© 2009 Hearing Loss Journal