Category: Nucleus Freedom

Operation Christmas Child and Thankfulness

Published on by hearingelmo1 Comment

Chloe and I went shopping for items to put into our Operation Christmas Child shoe boxes on Saturday. Armed with the following list, Chloe and I marched into the retail world:

GIFT IDEAS

TOYS
small cars, balls, dolls, stuffed animals, kazoos, harmonicas, yo-yos, jump ropes, small Etch A Sketch®, toys that light up or make noise (with extra batteries), Slinky®, etc.

SCHOOL SUPPLIES
pens, pencils and sharpener, crayons or markers, stamps and ink pad sets, writing pads or paper, solar calculators, coloring and picture books, etc.

HYGIENE ITEMS
toothbrush, toothpaste, mild bar soap (in a plastic bag), comb, washcloth, etc.

OTHER
Hard candy and lollipops (please double bag all candy), mints, gum, T-shirts, socks, ball caps; sunglasses, hair clips, toy jewelry, watches, flashlights (with extra batteries)

As a family, we had agreed to do one shoebox for a girl, and one shoebox for a boy. This year we chose to do items for two children ages 10-14 years old. At some point in the shopping trip, I realized how sobering it was to realize that for some children a pad of paper, pencils, and stickers were considered a luxury item. When I purchased some toothbrushes and toothpaste, the idea really came to settle in my heart and mind. We are so blessed here in the United States. Many items to us are necessities and common staples of our every day life. To children in other countries, those same items may be considered true luxuries and priceless gifts.

For the boy package, we purchased stickers, pads of paper, pencils, crayons, small slinky, small book, pencil sharpener, kaleidoscope, kazoo, skipper jump rope, ball, toothbrush, toothpaste, hand puppet of a triceratops, and some other odds and ends.

For the girl package, we purchased much of the same, but instead of a kazoo we included a set of bells and the puppet was a ladybug.

Perhaps it is because this is the week of Thanksgiving, that I am particular thankful for things I normally take for granted. I’ve often thought about how blessed I am that I live where I do in regards to my hearing loss and Meniere’s disease. I live within “spitting distance” of the Listening Center at Johns Hopkins Hospital, and my cochlear implant surgeon was one of the best in the country. I can easily purchase batteries for my CI, and have access to other assistive listening devices. I live within 65 miles of Fidos For Freedom, who only match assistance dogs with people within a certain radius of their organization. It is one of their commitments to provide follow-up training and support for the life of the dog. Trainers are all volunteers and live locally, so to participate and become matched with one of their special dogs one must live within a certain “workable distance”.

If you are having difficulty finding a way to be thankful this year due to life’s stresses, problems and trials… pack a shoe box for Operation Christmas Child! I think it will quickly help you discover things you are truly grateful for in the end! Plus… you will make a difference to a child who may never know the true meaning of Christmas if not for you! Check out the link and find out where the nearest drop-off location is for YOU!

Operation Christmas Child Link

Denise Portis

© 2009 Hearing Loss Journal

 

Braille Menus

Published on by hearingelmo5 Comments

Kyersten has always loved the outdoors... here she is on Lookout Mtn. in Georgia.

Kyersten, my “going on 20” daughter and I, went to Baltimore yesterday. She had a field trip she had to complete in order to earn some extra credit in her 200 level zoology class that she is taking. This has been a TOUGH class for her and she earnestly reasoned with me why she so desperately needed the car to go the National Aquarium. She can be pretty convincing. I had not been in awhile, so invited myself along so that I could spend some one-on-one time with her. Perhaps since we’ve recently visited some colleges on her “short list” that she will be transferring to next Fall, it was still keenly evident to me how precious little time I have left with her before life really changes! She was very willing to endure my company and cheerfully agreed (even before I promised lunch out!).

The aquarium is a great place to be with a CI and working dog. There is SO much to hear, and it can be a great place to practice using some of my special programs like “BEAM” to hear just Kyersten in a din of NOISE. It is good for Chloe, for we do not frequent really noisy places out of habit. It is good practice for her to stay calm and focused amidst all the “merry mayhem”. Towards the end she was wagging her tail at every squealing group of school children, and even met another service dog. Butch was a HUGE black lab that was built like a tank. He was very “lab-like” and friendly. He and Chloe said a brief hello and went on accompanying their partners. Chloe was much more relaxed after that – smile. A harmless moment of flirtation is enough to put the wag in the tail of my hound dog!

A Dolphin Show can be really noisy and tough to hear at with all the echo! Doesn't keep it from being REALLY FUN!

Lunch at the Cheesecake Factory

I gave Kyersten the option of several places to eat there in the Inner Harbor. She gave me one of those “duh” looks that 19-year-old’s are so good at… She loves cheesecake, so I really didn’t need to ask her! She eats a pretty light lunch there in order to save room for what is important. CHEESECAKE. Smart kid, yes?

Even though it was 12:30, we didn’t have to wait in line at all. Perhaps because it was a weekday? The young man asked us to follow him back through the restaurant. The area he led us to looked out over the promenade and one wall was all glass. I made the mistake of glancing around too much and caught site of the ceiling fans in my peripheral. I sort of “toppled” with a decided lack of GRACE into my chair. Kyersten just grinned at me, as she guessed my problem. I situated Chloe under the table, and turned to look at the young man who seated us.

“May I bring you a Braille menu, ma-am?” he asked politely.

I could see Kyersten’s eyes widen across the table.

Without missing a beat, I pointed to my CI and said, “Oh no thank you! I’m fine with this one” (and then pointed down to the regular novel-length menu on the table).

When the young man walked away, Kyersten rolled her eyes and said, “OH BRUUUTHER!”

I just grinned and said, “Hey! He was polite, and I do have a service dog with me. I toppled into the chair… for all he knows I don’t see well!”

Kyersten just looked at me, and looked at the cochlear implant on my head decorated in gold, red and green jewels for Christmas. She then looked at the opposite ear with the prominent BTE hearing aide and bright red ear mold.

She didn’t say another word, but that 2nd eye roll said it all.

Not the first, won’t be the last!

This was not the first time I’ve ever been offered a Braille menu before. I have friends with low-vision or are legally blind. I appreciate the fact that many restaurants have Braille menus!

I also appreciate it when restaurants train their employees “enough” that they have learned to recognize someone with a special need. Oh sure! They might not identify the need correctly, but I truly believe it is the thought that counts! When I have students in my ASL classes do projects like “go to the mall” without your voice and only sign, (“Deaf for a Day“), many come back to class and tell me that they were offered a Braille menu at the food court at various places. We discuss how they handled this and what this may mean.

Hearing Loss is Unique to Each Individual

Hearing loss itself is unique to every individual. The disability is not a “cookie cutter” change in hearing. I get some responses from people sometimes that do not like that I use the “disability” word. I’m OK with that, and respect their opinion and choice to not identify with that word. Personally, I am OK with admitting that I have a disability. I believe it does not strip away any power, self-esteem or pride to admit that. I am NOT, however, disabled. Yet, my disability may not be anything like that another person with hearing loss experiences.

I have Meniere’s disease. I do not meet many people with hearing loss who have Meniere’s. I am bi-modal (one CI, one hearing aid). I am more likely to meet bi-lateral people if I meet someone with a cochlear implant now! (Which I think is JUST TERRIFIC!) What they experience in their hearing loss is different than what I experience. Some people use a “bit of sign”, while others are culturally Deaf and do not use their voice at all. Some people have hearing aids that they do very well with, while others put their own in a drawer and “fake it” through life. I hear very well in quiet to “medium-noise” environments. I don’t even have to speech read anymore thanks to the wonderful technology of my Nucleus Freedom! However, in really noisy environments I do have to speech read even when using special programs. Other people with cochlear implants may do better in noisy situations.

I have had the privilege of participating in various forums, workshops, conferences and conventions. I have seen people with hearing loss really become defensive with other people with hearing loss. You know? (scratching head and really ponderin’ on that) I just don’t get that! So what if someone hands you a Braille menu! Were they genuinely trying to help? Does it matter that they don’t realize your hearing loss is different than their own? Perhaps they do not understand that what works for them may not work for you. Why come unglued and act defensive?

Here are a few real-life examples I have observed:

1. A person with hearing loss walked up to another person with hearing loss and pointed to their wires connected to their body-worn processor for their cochlear implant. “Why on earth would you wear something like that with all those wires showing?” Oh yeah… that produced a positive response!

2. “Bling” on cochlear implants and hearing aids are often disdained by other people with hearing loss.

3. “Why would you go with THAT company for your CI? The one I went with is so much better and their success rate is much higher!” (Should we just be happy someone is HEARING AGAIN?)

4. “I’m sorry, I didn’t catch the last part of what you said”. “What? You have a cochlear implant now, shouldn’t you be hearing better than I am with two hearing aids?” (Yeah… as long as you aren’t talking while crunching raw broccoli, bozo…)

Let’s face it! We will likely meet someone else with hearing loss who has chosen different techniques, coping mechanisms and technology in order to live life to its fullest. They may hand us a Braille menu. Our response should be positive… and let them know we genuinely appreciate their attempt to be helpful. An angry retort, thrown “menu”, defensive attitude and “hearing loss sermon” will not bring anything positive out of their mistake. Relax. Smile. Educate in a positive way.

Denise Portis

© 2009 Hearing Loss Journal

 

On the Road Again…

Published on by hearingelmo6 Comments
Denise and Chloe at Covenant College
Chloe enjoyed visiting these colleges, and "tolerated" the long drive.

This past Thursday, my daughter and I headed out on a road trip to visit two colleges on her “short” list. Bryan College is in Dayton, TN, and Covenant College is on Lookout Mtn, just over the TN border in Georgia.

Traveling with a hearing loss can be intimidating, but honestly I’m not new to this! Not to hearing loss, and not to traveling with one. In the past, knowing I had to travel would keep me up nights and worrying about the details weeks in advance. Hearing loss is such a part of my life, I do not really remember life with normal hearing.

Things that Help

I think one of the more obvious things that help me when traveling with a hearing loss is that I make my invisible disability – visible. From wearing bright “bling” on my cochlear implant (currently sporting Christmas “bling”), to wearing a bright red ear mold on the hearing aid in my other ear, I really try to make my hearing loss noticeable. I wear my hair up, and I pay attention. I hear really well with my CI, but I’m also wise enough to understand that late at night after I’ve become fatigued and am standing in a large cavernous, echo-producing foyer of a motel, I may have difficulty hearing! So the reliable, noticeable reminder of my disability only comes to my aid when checking in and reserving a room. Almost instantly, front desk employees “change tactics” and are careful to point out where to sign, wait for me to look up to continue speaking (although I actually hear well when not looking now), and are careful to point for directions instead of simply telling me where to go next.

People must travel with assistance dogs regularly enough now that I never am asked what Chloe does or why she is with me. She is less trouble than “some people’s” kids, so she is only help to me when traveling! Thankfully, at Fidos For Freedom, puppies travel with their trainers quite a bit to expose the dogs to motels, airplanes, etc.

hug
Kyersten and Chloe at Rock City for a short "break" to visit a tourist attraction

When stopping for gas, thankfully one can easily pay at the pump. The few times I had to go inside to grab a bottle of water for Kyersten or Chloe, the “visible reminders” served the same purpose at these places as well.

Why do I Believe Visible is Better?

I know plenty of people who choose to keep their invisible disability hidden. That is certainly their choice, and I am very supportive of “whatever works” for each individual. It is my personal opinion, however, that being up front about your hearing loss is only in your best interests. I have heard some folks say that they keep their cochlear implant or hearing aid hidden because they do not want to be treated differently. However, it seems these same individuals are very vocal in their criticism of people who continue to forget to get their attention before speaking, failures to set up assistive listening devices in conferences or meetings, or in disdain rebuke those who have accents, are gum chewers, mumble, or are soft spoken. I believe that in keeping a visible reminder that you do not hear the same way others do (with amplification, speech reading, or cochlear implant technology), others are reminded to communicate more clearly and with better speaking skills than they might otherwise employ.

chloe1
Chloe at Covenant College waiting for the Admissions Office to open.

I believe that by being visible, I have in many ways become more approachable to others and are more accepting of who I now personally. The moment I decided to become transparent about my hearing loss, my blood pressure numbers began to come down and I became more relaxed and at peace with who I am. Think about it this way… what is your demeanor, attitude, and feelings when in the process of trying to hide something?

loved the wildlife
Lots of critters in the mountains of Tennessee! I had to keep Chloe "tight leashed" to keep her from forgetting her job when on a trail!

Hoping mom doesn’t notice a missing cookie from the cookie sheet that just came out of the oven and are desperately trying to lick the last bit of chocolate chip from your fingers?

Have you ever lied and hoped no one would ever discover the truth? One often has to cover one lie with another… and then another.

Have you ever played hide-and-seek? Your heart accelerates as the person who is “it” draws closer to your place of hiding. You may even hold your breath in an attempt at keeping your hiding place from being discovered!

I believe that deliberately trying to hide something like an invisible disability eventually produces anxiety, unease, and produces a fear of discovery. These are all negative feelings! They do not provoke positive change and influence.

In spite of my bling and wearing my hair up, I still take some folks by surprise. Let’s face it… not everyone pays attention to detail. My husband is one of those people who I can greet at the door when he gets home from work and he will never notice I cut my hair 5 inches or am wearing a new outfit. (I don’t buy new clothes very often either!). Terry just doesn’t pay attention to visual detail. It always gives me a bit of a thrill to see the look on someone’s face who did NOT notice my visible reminders, when I’ve finally had to point to my mouth and say,

“I’m sorry. I missed the last part of what you said because of all the noise in here. I’m deaf and hear with a cochlear implant and just could not make out what you said. Could you repeat that please?”

The person’s mouth drops open and they totally FORGET what they said. Instead they exclaim, “Wow! I would have never known you were death! (Intentional mis-spell here in loving attention of all the times I’ve heard this instead of the correct identification). You are so… So… NORMAL!”

Another reason why I do not want to try to hide my invisible disability, is because I tried “the other way”. Do you know what I felt when something I tried to keep hidden became known to someone? Shame. That shame and embarrassment led to poor self-esteem and anger.

Again, I’m not “preaching” at others to adopt what I have done in order to bring awareness to their hearing loss. I really do believe that each individual must do what work best for them.

This is Who I Am

I am comfortable in my own skin. I don’t believe God reached down and caused me to become deaf. I also don’t believe God is “hands off” and set the world in motion just to sit back and watch everything happen. My life is not God’s Youtube. I believe everything has a purpose. Every good thing, and every bad thing happens in order to grow me. I really believe that! I make choices every single day. Sometimes the choices are small and may only involve what kind of tea bag to grab in the morning. However, many choices involve shaping and molding our character to produce a unique individual equipped to make a difference where I happen to be planted. My choices affect my attitudes and future decisions.

Sometimes our decisions are processes. For example, I did not “wake up” a secure and confident late-deafened adult. I “messed up”, acted out, hid, grieved, griped and smacked people. This was a process God allowed me to experience. The process grew me. I don’t regret the process even though I shed a lot of tears.

I’m still a work in progress! Just because I’m 43 and have been an “adult” more years than I was not, I continue to grow, mature and evolve. I don’t care how old you are, you still have a great deal to learn! We are ALL works in progress. Heck. If I was a “finished product”, God would just take me home!

Denise Portis

© 2009 Hearing Loss Journal

chloe2

P.S. If you do NOT like attention being drawn to your disability, I do not recommend being matched with a hearing assistance dog! People notice the dog as if it were a flashing neon sign!

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

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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

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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