Braille Menus

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…

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.

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.

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?

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

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!

Mandy Harvey – Jazz Vocalist with Hearing Loss

Check out this talented singer! You can preview selections from her CD at her site below.

From: http://www.mandyharveymusic.com/about

Sometimes you know…you just know! The instrumentation is tight and crisp. The songs are classic and timeless. The vocals are rich and captivating. And you know why a simple CD can comfort, entertain and inspire. It just makes you smile.

“Smile” is a collection of Jazz standards featuring vocalist Mandy Harvey. Give a listen and you’ll find yourself settling into an experience resembling a conversation for a close friend: familiar, yet enriching.

This CD is also an expression of hope. Nearly three years ago, Mandy experienced an unexpected and profound hearing loss. Though legally deaf, she continues to sing. You will hear the music of her heart…and it will make you smile.

Mandy lives in Northern Colorado and is a regular performer at Jay’s Bistro in Fort Collins. Her love for music and singing has been years in the making. She was selected as the top female vocalist of her high school and entered the Music Education program at Colorado State University. During her freshman year she lost her hearing and left the university.

While her dream of becoming a music teacher has died, the music is still alive and well within her. Though her hearing loss is profound (110 decibels in each ear) her timing, pitch and passion are perfect. With support from friends, family and her faith, Mandy continues to find joy in the music. Smile!

It Takes Just One Voice

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’.

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

Sit in the Sun

Even hound dogs can miss the sun after days of rain!

After FOUR DAYS of drizzle and rain, we have enjoyed SUN. I forget that not being able to go outside can affect our furry family members as well. I was very lucky to not have any errands to run during the days of rain with the exception of running my husband to the airport (whom I let out at the curb) and going to church.

Folks don’t realize how difficult it can be to go out in “inclement weather” when you have a disability that involves your balance. Luckily, I was able to put off running to the store, etc. and work from home during most of those rainy days. I did have one day I had to go in and teach, and Chloe was much more of a “balance assist” dog that day instead of a hearing assistance dog. Poor thing had to retrieve 19 dropped items (yup! I counted!) and had to help me down the very LONG staircase. I guess I shouldn’t say “poor thing”, for truthfully this dog thinks work is PLAY. Her tail is in a constant state of WAG.

Important to Rest and Re-charge

Even Pegasus loves the sun... but he IS naked! Chloe has enjoyed her naps in the sun!

People ask me sometimes if Chloe ever gets to “just be a dog”. She absolutely does! At home she does not wear her vest. Having said that, however, she doesn’t stop working! She has been trained to alert me to the sounds in my home. If someone is at the door… she comes to get me. If my phone rings, she comes to get me or will bring the phone and drop it in my lap. If one of the kids or my husband call my name, she’ll come and get me and take me to them. If the kitchen timer goes off, she comes to let me know. All these things she does without her “working clothes”.

Chloe gets plenty of opportunities to rest and play, however! She barks at bunnies, chases squirrels in the backyard, and tumbles and wrestles with her Elkhound puppy, Tyco. In the evenings she parks her hound-dog self next to me while hubby and I visit and/or watch some taped shows of NCIS. She gets a loving belly-rub the entire time. So don’t feel sorry for working dogs… they are loved, well cared for, and spoiled in many ways!

When to Rest and Re-charge

People need to learn to take a break and go sit in the sun. Especially after numerous “rainy days” that pours itself out on us in the form of stress, difficulties and life problems. We all know when stress is starting to “get to us”. Perhaps you can feel your blood pressure go up, or maybe you develop tummy troubles. You might have difficulty sleeping, or go around BITING THE HEAD OFF of everyone you know.

I just love lists. If you saw my office, you’d laugh out loud! I make lists for everything! My favorite Bible verses are lists that God made for us! He may not “number them” for us, but series of phrases and words are still lists written by God. I have a couple of books my husband got me as really a joke one year. They are called, “Lists to Live By” and I love them! One list I came across this morning reminded me that when we have the opportunity to “sit in the sun”, we should make that time count. Sure… you need to learn to rest. Maybe nap! Relax and unwind! But when you “get back to work” and to facing your problems, it is great to have a plan!

Pat Williams wrote a book called, Unsinkable. Check out this list… and maybe begin brainstorming and thinking about how you can do some of these things during an opportunity you find to “sit in the sun”. In parenthesis, I’ve added my own thoughts.

1. Use what you have. (Don’t tell me you do not have any talents. Even people with disabilities have skills and talents they can use.)

2. Don’t worry about what you don’t have. (Do you have a disability that keeps you from doing something? So what! There are people without disabilities that don’t swim, bungee jump, water ski or travel all over the country! Learn to enjoy what you CAN do, and if you can… ADAPT and change the parameters of an activity so that you can participate. If it cannot be done, don’t worry about it! Find something else you CAN do!)

3. Stay cool when the heat is on. (Under pressure? Biting your nails? Are you WAY TO BUSY? Learn to take time to re-charge… go “sit in the sun”!)

4. When you fall down, get up, dust yourself off, and keep going.  (You are gonna fall. It can even hurt. Don’t just lay there… get up and keep going!)

5. Follow through on your dreams. (Don’t let a disability keep you from a dream! Find a way… talk with others and get advice… dreams aren’t only for those who are 100% healthy and problem free)

6. Discipline your thoughts. (Take time to reflect. Exercise your brain. It makes planning and working much more effective. Being organized can save you time… you may even be able to use that extra time to go “sit in the sun”!)

7. Find comfort in helping others. (No matter who you are or what your abilities… you CAN help others. It doesn’t have to be big things. Little things matter to people. Don’t believe me? Think of 5 or 6 little things that do not require money, tons of time, and incredible skill. Do those things on behalf of other people and see if they do not notice!)

8. Give God control.  (Ya know He is anyway, right? Relinquishing control allows us to trust in the One who can make these things happen for us anyway!)

Hope you find some time to “sit in the sun” at least figuratively this week!

Denise Portis

© 2009 Hearing Loss Journal

Not an Exact Science…

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. 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!

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

Happy Birthday Chloe!

Chloe turned five-years-old on Thursday, October 1st. According to one source, that makes Chloe about 36-years-old in human years. No wonder she is perfectly fine with a Sunday afternoon nap now!

History in a Nutshell

Chloe came to Fidos For Freedom in January of 2005 as a three month old puppy. Chloe was puppy raised by Linda O., who is a long-time Puppy Raiser for Fidos For Freedom. Chloe has an anonymous sponsor, however we have been blessed to get to know her as well over the years. Chloe’s sponsor has acted as such on behalf of numerous Fidos For Freedom dogs.

Chloe had two fantastic trainers. First she trained with Jolanthe W., and later with Pat J. Both were instrumental in helping Chloe to learn basic obedience, public deportment, and hearing alerts.

In January of 2007, I was matched with Chloe at a Wednesday night training. I’m not sure who had the happiest tail wag!

Chloe and I graduated from Fidos For Freedom at the Tux & Tails Gala in May of 2009.

I cannot imagine life without Chloe! Whether it is doing her job alerting me to sounds I do not hear, or retrieving dropped items so that I do not topple from the Meniere’s, Chloe is simply glad to be with me. She doesn’t even consider her job, “work”.

In honor of all those canine partners who assist their human with various tasks, I want to wish Chloe a very Happy Birthday!

Denise Portis

© 2009 Hearing Loss Journal

Raindrops on Roses

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

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