Cochlear Americas – Hearing Elmo

If Fish Aren’t Stupid…

Published on April 30, 2012September 20, 2012 by hearingelmo1 Comment

I love it when I learn something new. Even when that learnin’ means that it contradicts something I previously thought was true. I grew up on a farm/ranch in SE Colorado. The families I knew, including our own, had all kinds of animals. Common critters included horses, cows, pig, sheep, chickens, turkeys, peacocks, ducks, geese, and even a llama or two! Something you didn’t see a lot of in the family rooms of various ranch houses were aquariums. We had some big ol’ goldfish that grew to an astonishing size in the cow tank near our house. What was even more astonishing than their size is that they survived the frozen tank winter after winter. I can’t remember who first told me that fish are stupid. This was long before “Finding Nemo” even came out in theaters, with Dory convincing us all once and for all that

fish.

are.

stupid.

After I went away to college and married a city boy, I actually lived in town big enough to have cable television. I found that I had a lot of years of catching up to do on Animal Planet, the Discovery Channel, and many other educational animal shows. However it wasn’t until my daughter’s boyfriend – the one who happens to know all there is to know about owning a freshwater tank – put up a couple of aquariums in our home on behalf of beloved daughter, that I began to see freshwater fish up close and personal. As a matter of fact a big 30 gallon tank sits behind my desk, so it is pretty hard to miss the freshwater angelfish swimming around the tank. I very soon discovered that my preconceived notion about the stupidity of fish was – well – WRONG. They really do NOT have 30 second memories. They are affectionate, can remember the easiest “trail” through the freshwater plants to circumnavigate the tank, will follow a person around the tank to “beg” for food, they can be aggressive and yet can be tame enough to actually take blood worms from your fingers. They will live in harmony with other types of fish (but not all), and seem to actually play with each other occasionally. Don’t get me wrong. I’m not ready to whip out an IQ test to see how they fare, but I really no longer believe that fish are stupid.

Other Wrongs – Now Corrected

I just turned 46-years-old this week. That is really hard for me to wrap my mind around. I remember when my mother turned 46-years-old, I was a very young and immature 23-years-old. I remember filling out her birthday card to send from my little apartment in Chattanooga to her “home on the ranch” in Colorado and thinking… “Wow. Mom is O.L.D. She is definitely entering her “senior” years now.” I’ve got to tell you now that I’m 46-years-old myself? Well, let’s just say I want to open mouth – insert foot.

I also grew up with very limited experience with any person with chronic illness or invisible disabilities. I did not have very much experience with people with even visible disabilities. Growing up in a small farming community limits one in that way I guess. It wasn’t until I became deaf and developed Meniere’s disease that I first really began meeting people of all kinds who are “differently abled”. Having an acquired disability today is much different than it use to be simply because we have the Internet that connects us to each other and to a wealth of information as well. I grew up believing that people with disabilities were to be pitied. Knowing what I know now about a community of which I am proud to be a part of, pity is the last thing any of us want. I’m constantly amazed by the perseverance and strength that I see in people with all kinds of various “differences”. I hate to even use the word disability, but it is the language present in our current laws that protect the rights of those who have them. A fellow client from Fidos For Freedom, Inc., first introduced me to the term “differently abled”. I find that this phrase much more accurately describes those who live a victorious life despite any physical, mental or emotional differences they may have. Through networks such as the Hearing Loss Association of America, Cochlear Americas, Invisible Disabilities Community and Invisible Illness Awareness Week I have learned that having invisible issues also creates incredible strength and depth to the human soul. I’ve met some wonderful people who have taught me how to navigate life with grace and a “can do” attitude.

I’ve learned that all of us should “check our preconceived notions” at the door. Assumptions are a discriminatory lot. I do have to admit to also enjoying lessons learned from erroneous stereotypes. After all, that means I’m still learning. You can teach an old dog new tricks! After all, I’ve learned that fish aren’t stupid…

Denise Portis

Follow-up to “Community”

Published on July 12, 2010 by hearingelmo3 Comments

It’s so nice to have guest writers from time to time if not for any other reason, than to give you a break from me! Today I am posting a well-written and thought-provoking comment from Dr. M.E. Osborne, whom I share a “community” with at the Cochlear Community. Feel free to leave your comments (as always), and if you like I can forward personal messages to her via email.

Denise : We are all thankful you are a member of the Cochlear Community. You bring us different, clear viewpoints and concepts to think about.

Your description of the grocery store incident put me there as if I had been a butterfly on the top shelf. Some thoughts flew instantly to mind, and others developed as I thought about the incident throughout the day.

FIRST: How sorry I am for the little boy; he is being taught prejudices. If a parent actively, consciously imparts a narrow connotation of “normal” – for 7 years – you know there are other interrelationship terms that are also skewed.

SECOND: I take it she also was hearing impaired and was referring to “normal” in the “deaf community” through her experiences and the results of the choices she made. By 7 years of age a child’s basic personality and framework of values are 80% set. But the input of details that determine our ability to make our own choices is only about 30% set [Kaugher, 2004] That little boy is on the cusp of making important choices for himself.

His language development is still open. Unless his parents permit his examination, it will be another 11 or 14 years [depending on “legal age for self-care” in the state where he is then living]. Those of us in the Cochlear Community each know at least three people who had no hearing until Cochlear Implant[s] happened. That might be case for that little boy. He would be eligible for speech/ auditory/ aural/ oral services. He might come to speak as clearly as a couple of Cochlear Volunteers. IF THE MOTHER’S ATTITUDE PREVAILS, HE WILL NOT HAVE THAT CHANCE EARLY IN HIS LIFE. HOW TRAGIC.

THIRD: You were SO much more polite than I would have been. I would have flown after her to “ask” her, HOW DARE SHE MAKE THAT IMPORTANT CHOICE FOR HIM! No matter how I had to communicate – sign with the ASL I remember, spell words one letter at a time, or write it. She would understand my intense furor with her making life choices for another person.

She is exactly the type of parent who drives people in my chosen area of expertise out of our minds. She is afraid of technology and teaching that prejudice to a child, not describing options.

[For those of my Cochlear Cousins who do not know, one of my doctoral concentration areas is Special Education Administration. The program I completed was heavy in being an advocate for the client – especially for youngsters.]

Then I would have emphatically flown off into “WHAT IS ‘NORMAL’ IS SITUATIONAL.” The two of them “out in the usual world in a grocery store, using ASL to communicate,” was not normal right then – unless everyone in the store at the same time was using ASL

“Normal” implies behaviors, clothing, manners, foods, rules, customs etc. that are highly predominant among a group of people.

THERE IS NO ONE NORMAL FOR EVERYWHERE, ANYTIME. I have lived both as a citizen and as a military member, literally around the world; traveled extensively on four continents, and have been privileged to be part of many social communities. Communities may be defined internally – people who have chosen to be self-segregated from interaction/ participation with those outside. Communities may be people forced to separate, by customs, laws, etc. Communities may be segregated from each other on some binding reason the members consider enough – an example is the “upstate homies” and the “downstate homies” in a juvenile prison.

While teaching in a southern city, I was accepted by the Deaf Community as one of them because I tutored/ taught the children. The same reason was in force in a northern city as I taught three young people for 6 years. Their three “accompanying interpreters” in public school, agreed to provide a concentrated ASL class for the 24 teachers involved.

What are perceived as communities, sometimes must merge, not just function, but each individual interact successfully. Consider the situation: Nancie was one of the school interpreters; Black; attending an active Catholic church with an almost total Black congregation, and the congregation kept many traditions of Black, southern churches – the Mother of the Church and the Sodality Members wore white, all other members wore navy blue, to any church service. Nancie’s mother passed away. The three students, the two other interpreters, all 24 teachers, students close to the signing student’s, & the students’ families, piled into a school bus at the school located on the fringes of the city, to ride deep into the city, down to the river. In the melee of people were Black, European, Hispanic, Jews, Catholics, Baptists, Methodists, hearing, partial hearing, and totally deaf. We were greeted and welcomed by the Priest and the Mother of the Church. You bet we had it together … because it meant something to Nancie, and us. We sat behind the Deaf Community – one of the two interpreters signed in the front – the other about in the middle, both up high enough to be seen. All teachers, families, etc were in navy blue dresses or suits. The Catholics spread out through the group to help the others get through a completely sung, old fashioned, high Mass. [For those of you who wonder, the cemetery was a short drive to the north. Yes, our bright yellow school bus was in it.]

Imagine the chaos, the pathos, the inflicted insults and injury had every individual clung only to what made them comfortable.

Currently I am in the USA, living in a SC rural area near an average small city, 50K people. Permit me to list some things that might not be the norm, the usual, in public situations:

ASL, or for that matter, any language other than English;
an assistance dog, lemur, ferret, or tree monkey;
a lady who covers the left side of her head, but puts a finger in her right ear when eight F-16s go fly low, landing/ taking off. [Guess who with a BAHA]
people using heavy, metal, leather braces and cup crutches;
families of 21 children;
people wearing clothing that openly indicates their choice of religion/ religious practices – Hutterite plain clothes, burqa, nuns in habits, yarmulke/ Kippah;
people with little screens on their head attached to a weird looking hearing thingy – you can see one on Rush Limbaugh.

Some things that here are the norm:

No matter the time of day, lots and lots of men and women in military uniforms for the Air Force or Army [NOT Navy or Marines] Shaw AFBase is in Sumter, Ft. Jackson Training facility is in Columbia, and the 3^rd Army is coming to Sumter piece by piece
Many large, off road capable, pick-ups with a full gun rack inside the back window of the cab. Often there is not a need to lock the truck, there are a couple sets of large barking teeth on guard
After people have been home from medical, banking, other “white-collar” jobs, welding shops, construction, several groups of motorcycle riders gather – Legion Riders, Sons of God, Hyundai Hots – each in a different huge, parking lot
Men and women who proudly have Concealed Weapons Permits, carry their handgun, and love to take them out [unload all] and compare. [Me too]

NONE OF THE LAST FOUR ITEMS WOULD BE “NORMAL” IN DOWNTOWN CHICAGO AND ZIP CODE 60625.

Thank Our Lord for people in the Cochlear Community who

chose to create and maintain an open, welcoming community
accept input from professionals, family, and friends in making decisions; and also welcome the prayers of us who offer them
respect and embrace the decisions community members make
have the personal courage – sometimes at the cost of pride – to ask for support from others who also live with Cochlear technology
encourage us who are slugging our way through our CI/Baha journey by sharing in both disappointments and joys
are ready to show their own personal hearing technology to people – recently I listened to a campaign manager explain that a car magnet was worth 300 votes for a political candidate – so I was thinking, can we assume every CI magnet explained will bring 300 more people to hearing ? Maybe the person spoken to, maybe someone they talk to ?
belong to SEVERAL social communities and move comfortably from one to another – even if we make a mistake now and then – such as when I heard my name called in exasperation in Eastern Star meeting, and snapped to my feet, smartly made a Navy military about face, to attention, and said sharply, “Ma’am”. Wrong community. The response should have been to stand graciously, make a small bow, and say respectfully, “Worthy Matron.”
are not afraid to risk making new friendships, that begin in the ether of the Internet, and because of geography, might never move to in-person friendships.

Dr. M.E. Osborne

“Play Your Own Hand”

Published on June 11, 2010September 2, 2010 by hearingelmo4 Comments

Play Own Hand — My Mother at Harper's Ferry, WV, in June of 2010.

My parents came to visit last week as they wanted to attend my son’s graduation. They live in Florida, so it was great they could stay awhile after Chris’s ceremony as we don’t get to see them that often. Mom and Dad live in a gated community in Florida. They play cards there… a LOT of cards. When they come, they often teach us a new game. That may seem pretty “ho-hum” to most of you, but I grew up in a household that played ROOK and Gin-Rummy. That Mom and Dad come and teach us brand new games with elaborate sounding names like Shang-hai Rummy, we are pretty thrilled. It gives us a chance to sit around the table and visit while playing cards each night.

They brought a new game with them this time called “Bohemian Poker”. It was really fun, and the hands are relatively short so that those of us with short-attention spans can concentrate. Without going into the details of how the game is played, mom reminded us all through the game (usually after a mistake was made) to “play your own hand”. Eventually I was able to do just that, but it did take quite a bit of repetitious reminding on her part.

The opposite of “playing your own hand”, would be to look ahead at the person or persons after you and intentionally play in such a way that they do not benefit from your play. Some players go so far as to collect more points in their OWN hand to keep others from benefiting from their play. (The object of Bohemian Poker is to have the FEWEST points). Mom reminded the novice players at the table to concentrate on what would benefit them the most… to not look at other’s hands, and concentrate on your own. I suppose another way of putting it would be to “mind your own business”!

So freshly ingrained is this new phrase, I have been thinking about how that applies to so much in our life. With her permission (and blessing) I decided to blog my thoughts on the idea!

What It Is NOT

“Play Your Own Hand” does not mean that you intentionally live an isolated, segregated life. It does not mean that you ignore the needs and problems of others and concentrate on taking care of your “own” exclusively. It does not mean that when we see an opportunity to serve or minister in our community or circle of friends, that we do not reach out to those we see in need.

“Play Your Own Hand” does not mean that you do not make short-term and long-term goals, for in truth, both are wise practices in the life of any adult. Sometimes those goals include relationships with others, and so we must determine how our goals affect those who are in our circle of influence.

What It DOES Mean

I believe that “Play Your Own Hand” teaches the following lessons:

1. Pay attention to what God has given you to do. Don’t worry about what others are doing as it is not your responsibility. Your choices, decisions, and planning ultimately affect YOUR life.

2. Don’t live defensively, countering wise decision for your life in order to keep someone else from benefiting.

3. There are gambles in life. They can be both exciting and nerve-wracking. May the chances you take only influence you, unless some benefit or blessing is passed on to another.

4. If someone you care about is ruining their life, try to be a good influence… pray for them… encourage them. But don’t allow their problems to become your problems. They may have some hard lessons that need to be learned through reaping the consequences of their own decisions.

Hearing Loss – So Much Variety!

I have met a great number of people with hearing loss through the years. Through speaking engagements, conventions, online support groups, HLAA and other hearing loss venues, I have discovered that hearing loss is not “one size fits all”. I have Meniere’s disease as well, and am amazed at the variety of symptoms and triggers individuals who struggle with this disease exhibit.

I have also seen people with hearing loss criticize decisions others have made to best cope with their hearing loss. Those who are pro-ASL, often butt heads with those who are anti-ASL. In my opinion, it makes both crowds… BUTT HEADS. Some people choose to use technology, or to be surgically implanted with a cochlear implant. There are three cochlear implant manufacturers. I have seen “CI Wars” both in forums on the Internet, and also face-to-face. Cochlear Americas, Advanced Bionics, and Med-El seem to have enthusiastic and loyal recipients. Is it not best to celebrate “hearing again”? Why does it matter what implant an individual chooses in order to best hear again? Sure – some companies have different perks, low “fail” rates, etc., but being negative or belligerent to an individual sporting a different brand is stupid and immature. (Not really pulling any punches am I, grin!)

“Play Your Own Hand” and do whatever it takes for YOU to hear best. To do so, insures you may communicate as best you can and to practice independence towards hearing all you can with the ears you have. Celebrate when others are learning to be proactive about their own hearing loss. Always be willing to try something new… you may learn a thing or two about your hearing loss even decades after you began living with these communication issues.

Denise Portis

Do Not Put it Off!

Published on May 23, 2010September 2, 2010 by hearingelmoLeave a comment

This week marked the end of my son’s life as a high school student. In a couple of weeks, my parents will be here to celebrate at his graduation ceremonies for Chieftain Christian Academy. Although Chris did most of his senior year at a local community college (since he goes free thanks to “Dad” working there), he still did a couple of classes at home. I’ve been more “hands off” in his education this year, but still had the opportunity to make sure he was logging hours for that 1/2 credit of Bible he needed. I was still his “teacher” for Geometry, something we put off far too long! I was still busy grading papers, generating paperwork for our co-op, and preparing lesson plans for the kid.

Now the “kid” is done, and I find myself asking, “What do I… want to be when I grow up?” My life has pretty much been on hold for twenty years, in spite of working part-time as a teacher throughout. Every school year revolved around the kids, as did every activity, field trip, book purchase, and support group meeting. Now we are “done” with this chapter in our lives and I once feared I would be left feeling deflated.

But… I have a plan of action. That is part of the reason I have been going to school part-time. I’ve been taking 6-9 hours a semester of graduate level courses in Psychology. I’m set up to complete a Master’s program at the end of 2010.

Looking Back

In spite of all of these years of concentrating on my family, I really didn’t think there would ever be a day I could look to my own dreams. It’s hard to believe that it has been almost twenty years since I first began to notice a dramatic change in my hearing. In the beginning it was so hard! Even my own parents and siblings had difficulty believing I was really losing my hearing. After all, when I was being raised at home, I only had a mild hearing loss in one ear. It didn’t make sense to them that ten years could make that much difference in my hearing. I remember one of my kids coming home from Colorado after visiting family, visibly upset because someone had told them that my hearing loss must be “put on”… that it wasn’t real. They had no idea how to respond to the lack of belief in acquired disabilities. They knew I couldn’t “hear” in the dark (since I speech read). They knew how frustrated I was when my hearing aid battery would die. They knew how terrified I was of the phone and how I was slowly dropping out of activities at church since I couldn’t hear. I remember talking to my little sister on the telephone prior to my cochlear implant surgery.

She wanted to know why I would consider surgery and take that risk. I remember staring at the phone incredulous at her question. Here I was reading captions from a Cap-tel phone, in order to even know what she said… and THAT wasn’t 100%. I explained how minimal the risks were to cochlear implant surgery and tried to explain how desperately I WANTED MY LIFE BACK.

Looking Ahead

I didn’t let their reservations stand in my way. Thankfully, my immediate family understood the struggles I faced each and every day and were so supportive! Other late-deafened adults were encouraging and enthusiastic about my surgery. Getting a cochlear implant allowed me to dream again. Because I can hear as well as I do, I look forward to giving back in some way… of doing something outside the home. Don’t get me wrong… I have loved being a keeper of the home and the opportunity to spend so much time with my kids. However, I really thought that at the end of this time I’d be facing an empty nest and feeling unnecessary. Once I could “hear again”, everything changed. I’m at the end of this journey and at the beginning of a new one! I’m feeling rather hopeful, excited and NECESSARY.

I suppose if the posting this week had a POINT, it would be this:

Do you have a hearing loss? Do hearing aids and other assistive devices no longer help you very much? Have you been evaluated and been told that you qualify for a cochlear implant?

DO NOT PUT IT OFF.

The risks are minimal, the pay-off is HUGE. It has been five years since I was activated (May 13, 2005). I have no regrets other than I waited as long as I did. I qualified for a cochlear implant three years before I finally went through with the surgery! I’m dreaming again. I’m excited about the future. I have plans, goals, and am slowly but surely “getting there”. I can hear with this bionic ear of mine!

Denise Portis

Acclimation

Published on April 12, 2010September 2, 2010 by hearingelmo4 Comments

I talked to my mother on the phone yesterday and she and Dad had a big project in which to look forward to for today. They have a beautiful lanai in the back which includes a very nice fish pond and miniature waterfall. In spite of a pump and filters, the pond does need cleaned once in awhile. Evidently, the time had arrived. The Koi have to be erm… “fished out” and placed in big 5-gallon buckets. Then the pond is drained. Next, the rocks and pond are scrubbed and washed with a high-pressure hose. It takes time, and I imagine it’s a messy job. I also imagine one gets a little wet – at least I would.

I called Mom again around 3 PM today. She was pretty bummed. It seems that when putting the fish back into the now clean pond, they didn’t provide enough time for them to acclimate to the temperature change. At the time I talked to her only 4 were still alive, and she lost some of her “big ones”.

Use to the Scum

I suppose my parents could have chosen not to clean their pond. But it evidently gets bad enough you can’t see the bottom. They have a proliferation of live plants and lily pads, but all of these natural AND man-made filters can’t undo the fact that the pond does not have a constant source of fresh water being piped in like mother nature provides. The Koi do not seem to care that the water gets to where they cannot even be seen swimming around. They grow accustomed to all the scum.

Aren’t we that way sometimes? I remember when I first got married, my husband and I did not go to a movie if there was harsh language, sex and nudity, or “adult themes”. We now use a service from “Screen It” . Before going to a movie, we literally screen it. Screen It tells you how many cuss words are in a movie and what they are. It tells you if the movie has any nudity in it, or adult themes. As a matter of fact, it will actually give the entire movie away if you read the whole review – grin! But we have used it a great deal because I just have trouble sitting through movies that are one curse word after another. I don’t care who plays in it or how highly acclaimed it is. But you know something? We make a choice that our movies have to have “less than 10 curse words” in them, and certain curse words are “worse than others” in our thinking. But are they? Aren’t curse words, curse words? And who decides how many is too many? It’s a slippery slope, let me tell you! It takes a lot of dedication and determination to stay true to what we’ve determined we’ll pay money to see for entertainment. I can’t help but feel as if we are agreeing that “a little scum” is OK though.

I heard a young lady recently say that someone they work with let them borrow a book to read. The owner of the book said, “There are no curse words, and it’s clean… you’ll like it!” This young lady was astonished at not only the language in the books, but there were sex scenes. She wondered out loud how that could be? I hypothesized that perhaps the other woman had grown accustomed to the language and written scenes where they didn’t have an impact on her anymore. She didn’t recognize the “scum”.

The SHOCK Killed Them

I’m a bit of a homebody. (I cringe knowing how my family would groan about that). OK, OK… I’m a HOMEBODY. However, my personality is pretty outgoing. I do like talking to people and interacting with them. However, after I lost my hearing and developed a balance disorder, I pretty much began staying at home. Even though I hear voices very well now (in most environments), I still haven’t reverted back to my (literal) outgoing self.

I’m going to a lady’s home this Wednesday for lunch. She leads a Bible study for women in my church. I use to lead Bible studies; in fact, I was one of the main leaders and went from one study to another ten years ago. I use to go shopping and hang out with friends quite a bit too. Now… not so much.

Don’t get me wrong… I’m HAPPY. But I didn’t start out this way. The more silent my world became, the more silent I became as well. I quit everything that required I interact with people. I intentionally isolated myself. It took some time. It was a slow process – I didn’t wake up one morning having become a hermit. So now that I am hearing again with my cochlear implant, and have some of my independence back thanks to Chloe, it has taken some time to make a gradual adjustment to “getting out there” again.

My parents should have kept their Koi in a 5-gallon bucket a while longer. They may have still died… Koi can be very sensitive to change. People can be too – especially people with acquired disabilities I think. Making adjustments in our lives can take time. For one thing… learning to trust can be hard. Learning to believe in yourself again can be even harder.

I have a friend with chronic fatigue syndrome and fibromyalgia. She is a self-isolated individual. It happened very slowly over time. It became harder and harder to explain her disease to other people. She had more “bad days” than “good days”. Constantly having to cancel plans eventually led her to not make any plans. When you look at her she LOOKS FINE. Try explaining that you are NOT. I feel for her. I know what it is like to have an invisible disability. (Still another reason I sport CI “bling” and decided to be partnered with a canine. Nothing says, “something is DIFFERENT” than going everywhere with a working dog!) She is now trying to reach out again, but she is taking it very slowly. After all, it can be “two steps forward and three steps back” many times. I think taking it slowly is a good idea. Acclimation TAKES time, after all.

Do you know someone with an invisible disability? Do you know someone who has a disease that exhibits “silent symptoms”? Perhaps they have isolated themselves and are convinced they are a homebody by CHOICE. They may seem happy. I’m not saying go BUG the heck out of someone who has opted to avoid being in public as much as they can. But I think it is also OK to reach out. Maybe bring lunch to THEM. Working in your garden? Pick some tomatoes or flowers and take them to this person. Email them occasionally. Offer to take them shoe shopping. Who says no to that? (GRIN) Just be aware it may take them some time to re-acclimate themselves to being out more, or having a friend over.

One reason I love the Internet and love to blog? I have “met” an awful lot of people just like me. Some I call “friend” too… for we’ve gotten to know one another and have learned to share our life’s story. We’ve connected. Things like Facebook can do that too, or joining online support groups. I’ve heard some people say, “yeah but those aren’t REAL people”. Excuse me? Behind that keyboard is the mom of a child with hearing loss – and she homeschools too just like I did! Behind another keyboard is a lady who lives with invisible disabilities who is training her own service dog in a big lovable Great Dane. The person who clicks that mouse has MS and has a wonderful service dog who gives her some independence. Numerous “point and click” folks out there have cochlear implants and love to talk about them too! These are real people; our connection is real.

If you know of someone who seems isolated (whether self-imposed or not), encourage them to get a good computer with reliable Internet service. You’d be surprised at the amount of support they can find out there… the connections… the friendships!

Denise Portis

Try Something New

Published on March 9, 2010September 2, 2010 by hearingelmo2 Comments

My husband called me into his office last night and checked out the “side of my head” to see if I still had my cochlear implant and hearing aid on to hear. I kind of grin to myself when he does this, for after all… I’d not hear him call me into his office if I didn’t have my cochlear implant on my head!

He said, “Can you put headphones on over your implant and hear?”

I looked to see what headphones he was talking about and noted that it was his nice “noise canceling” headphones and not the ear buds. “I’m sure I can,” I responded, “but I’ve not tried!”

Now I’m likely one of the few Americans that does not own an iPod. I also do not have an MP3 player (although I think those aren’t as popular now!). It may have something to do with the fact that I have a hearing loss. Prior to the cochlear implant, I had become accustomed to living without music. (Kinda of sad if you think about it…) My CI has some fancy attachments that I can use so that I can actually use an iPod if I want. However, usually I sit at my computer and listen to iTunes. I make a special time to do that, and enjoy the music better if I’m not busy doing something else that requires my concentration.

My husband has an iPod touch. He is a very techie/gadget kind of guy. I’ve heard him dreaming out loud in his sleep about the new iPad. (I’m fibbing of course… I’m deaf at night!). He held out the headphones to me and motioned for me to put them on my head.

I adjusted them to where I could comfortably place them over the processor (the headphones were HUGE and covered my entire ear!). He handed me his iPod touch. I stared at him blankly. “Ummm. I haven’t a clue as to what to do you know!” I grimaced. (Hubby and I are blissfully married because ‘opposites attract’ as I do not have any techie/gadget cells in my body).

He motioned with his finger, and showed me how to “touch” the screen. My breath caught in my throat as Elmo trotted onto the screen. As only Elmo can, he described how I could make my own monster friend. I listened to the instructions, and made my very own monster with Elmo’s help (see above). Elmo showed me how to make my monster friend dance, exercise, and more. My eyes were wide and my grin infectious… I thought.

One look at hubby and I could tell he was afraid he’d never see his iPod touch again. “No worries, honey!” I explained. “I don’t want your iPod!”

Trying not to look obviously relieved, he motioned for me to remove the headphones. “I can buy you one, you know!”

“Naw! This is a cute application, but I’ll stick to what I know best. Thanks for sharing that!” I replied.

At Least Try

Now I might fall in love with the iPod, if I sat and used it for a longer period of time. I tried it and it worked well for me. However, I really like my iTunes! In spite of how cute that Elmo application was, I wasn’t ready to invest my money on something I may not use much. I am happy with what I have. What if I told my family members (desperately looking for birthday gift ideas) that I did not want an iPod even though I had never tried one? My tone and words might convince them I was serious, but how believable am I if I’ve never tried it?

I remember when my kids were little how difficult it was to get them to try new foods. They weren’t allowed to wrinkle their noses and say “no thank you” to something they’d never tried before! I encouraged them to always “at least try” new foods.

Sometimes we don’t try new things because we are afraid we’ll fail. I could have taken one look at the iPod laying in one of my husband’s hands, and the headphones in the other and said, “Ermm… no thank you dear!” How would I have ever known if I could use the headphones that way? I would have missed seeing Elmo dance across a screen. I would have missed the opportunity to prove to myself that the tiny, slim, techno-intimidating iPod wouldn’t blow up if I touched the screen wrong. I had to at least try!

Trying Something New

Why don’t people like trying new things? Hopefully, I have modeled good behavior for my kids that they should be willing to try new things before deciding on a different route. Obviously I’m not talking about drugs, alcohol, sex or other self-destructive behaviors! I sat down and tried to come up with a list of why people do not like trying something new:

1. Fear of failure. What if I blow it? What if I am not able to complete an 8 km race? What if I don’t reach my weight goal?

2. Old habits. I’ve always done it this way. Why should I try something new? The way I do things now work well for me. There is no reason to start something new.

3. It might cost me. I don’t have the time or money to start something new. What if I have to give up something else in order to do this “new thing”. I enjoy reading books, and that 1/2 hour walk will eat into my “me time”!

What are other reasons we may not try something new? I’ll never forget the first time my assistance dog was asked to do something new that she did not want to do AT ALL. You can read about it here. It took a lot of encouragement from people she trusted for Chloe to descend that staircase at Harper’s Ferry. The staircase seemed to lead “no where”. Does having a group of cheerleaders help you when you are trying to muster the courage to do something new? Maybe you don’t do well with a whole PEP SQUAD behind you, cheering you on! But the quiet encouragement from a trusted friend or two has shown to help you step out in faith – to try something new?

Trying new things is good for us. It gave my assistance dog new-found confidence and strengthened our bond. When I try new things I feel as if I’m exercising my mind and body. I’m growing.

Why should we be willing to try new things?

1. We may find a better way to do something! The “new way” may save time and money!

2. We may discover a new skill or exercise a talent in a new way.

3. We may meet some really incredible people!

4. We may find ways to minister/serve others in our “new hobby”.

5. You may come to the conclusion that the “old way” works just fine! (I really am perfectly happy with iTunes on my computer!)

Being willing to try new things also helps us to learn to put a little faith in others, which for some can be a difficult thing to do! Trying new things may also force us to have faith in what God has for us too! Some folks have an easier time trusting others than they do God. This should not ever be the case. (But I’ll leave that topic for another post!)

What have you tried “new” lately?

Denise Portis

On the Road Again…

Published on November 9, 2009November 9, 2009 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

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!

“Cane” Shopping

Published on October 24, 2008 by hearingelmo3 Comments

I’ve been a little depressed the past week or so. I took a pretty bad fall a “rainy weekend” ago, and had to follow-up with my doctor to make sure I hadn’t broken a leg, arm or rib. I was covered in bruises for a couple of weeks. I mentioned to my husband, that I noticed that if I use my umbrella on the right side (with Chloe in heel on the left), then I do much better on rainy days.

Falling doesn’t make me depressed. Bruises don’t make me depressed. Mentioning “it may be time for me to get a cane for rainy days”, and darling hubby jumping all over it? That made me depressed. I said it half in jest, but he was completely serious.

I’ve been falling all my life. I was one of those “accident prone” kids. I even remember one time in college, my RA told me, “Denise, you fall and run into stuff more than anyone I know!” What is interesting to note, is that I didn’t have a significant hearing loss in college. I only had a moderate unilateral loss due to a pedestrian vs. vehicle accident at the age of six. (The car won)

I didn’t begin losing my hearing (sensorineural hearing loss) until I had a couple of babies at the age of twenty-five. The hearing loss continued in both my ears for over a decade before I did anything about it. All the while, I continued to “fall and run into stuff” a great deal. It’s never been strange for me to be sporting bruises. (The “ATTIC STORY” has become rather infamous!)

Somewhere along the way I developed a mild form of Meniere’s disease. Without my cochlear implant and/or hearing aid, I have constant tinnitus. But it is “manageable”, and I’m quite accustomed to the constant ringing when I’m not utilizing technology and bionics to hear. I sleep very soundly “in spite of”. Along with the tinnitus, however, I began to have vertigo and other balance problems. It is worse when it’s a rainy day, so I know the weather affects it. There is very little one can do for Meniere’s. I cut down on salt, take Manganese tablets, and try to get a lot of rest.

Regardless, on rainy days I have to move carefully and methodically. Chloe acts as a great counter-balance on stairs, ramps, inclines, slopes, etc. However ceiling fans, fast moving bodies (like students running), or loud noises make the dizziness worse. I face a flight of stairs “round trip, each school day. I would think the stairwell is about 8 feet wide, but it is DEEP and STEEP. Just standing at the top of the stairs and preparing to descend, the whole stairwell starts to spin, and I lose a great deal of my peripheral vision due to the vertigo. It can be terrifying, but I’m confident for the most part and Chloe certainly adds stability. On rainy days, however, you can multiply that terror times TEN.

If I happened to fall down THOSE stairs, there is no doubt I would break something. It’s not that I’ve never broken a bone before! My word, I’ve broken a femur, toes, fingers, my sternum, and cracked multiple bones as well. But I’m rather terrified of that stairwell. Perhaps it’s because I’m afraid I’ll hurt Chloe. Perhaps it’s because I know how it would completely freak out the director of my school! (grin)

To humor hubby, I’ve done a little “cane shopping” online. At least some of them are pretty.

But darn… I’m depressed! I find myself asking, “Has it come to this?”

But you know what? I can’t sit around feeling sorry for myself very long. I was taught to “belly-ache if you must”, but then recall how blessed you are! And truly… I am very blessed. With my cochlear implant I hear better than I had ever hoped to “this side of Heaven”. I have a wonderful and supportive family, and a super assistance dog who loves to work. The blessings FAR outweigh my little problems with balance.

I have learned to poke fun at myself when needed, and it has certainly made others more comfortable around my implant, assistance dog, and even dizziness. But I really hate falling…

For now I’m “in shopping mode”. At least they aren’t very expensive! At least I’d only need one when the weather is bad. At least some are pretty! I could add a whole list of “at leasts”! I suppose that’s a form of counting your blessings.

For now, I’ll just “window/monitor” shop. At least… until hubby brings it up again.

Denise Portis