Month: October 2011

Courage!

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The Cowardly Lion from "The Wizard of Oz"

Cowardly Lion: Courage! What makes a king out of a slave? Courage! What makes the flag on the mast to wave? Courage! What makes the elephant charge his tusk in the misty mist, or the dusky dusk? What makes the muskrat guard his musk? Courage! What makes the sphinx the seventh wonder? Courage! What makes the dawn come up like thunder? Courage! What makes the Hottentot so hot? What puts the “ape” in apricot? What have they got that I ain’t got?
Dorothy, Scarecrow, Tin Woodsman: Courage!
Cowardly Lion: You can say that again!

cour·age

[kur-ij, kuhr-]

noun

the quality of mind or spirit that enables a person to face difficulty, danger, pain, etc., without fear; bravery.

What Kind of People Have Courage?

Exactly what kind of people have courage? In my opinion, courage is not found in a specific “kind” of person, personality, gender, or culture. Courage can be found in the heart of any individual. Facing life develops courage in our hearts. I began thinking about courage this past week. I was waiting outside a classroom as I had arrived a bit early. I have no idea what kind of class was being held in room 406, but I heard the professor say, “When you think of someone who is courageous, who comes to mind?”

I couldn’t hear all the responses, but some that I did hear included:

men and women in the armed forces

parents

law enforcement officers

and firefighters.

As I sat leaning against the wall eavesdropping on the class discussion, I thought about how I would answer that question should anyone ever ask me.

“People with disABILITIES have courage”

Part of the reason I love Fidos For Freedom so much is that the clients, trainers, and volunteers have become like family to me. There are a number of disABILITIES present in people who are “family” at this organization. People who are “differently-abled”. Some of the clients are deaf (or Deaf), some have balance problems, chronic fatigue syndrome, fibromyalgia, chronic pain (from accidents or illness), CRPS, MS, and the list goes on. No matter the background or current health status of any one individual, one thing I see in the face of ALL is – COURAGE.

How can we be SO different and struggle with such a wide variety of challenges, and yet all have courage? Bill Tipton said, “Increasing your courage to take calculated risks can improve your general well-being and attitude in life. Learning to transform the negative reaction of fear of failure to a positive sensation of opportunity can enhance your chances for success. I believe people with disabilities, or perceived differences, get more opportunities to demonstrate and practice courageousness” (Global Dialogue Center, 2011)

I believe when a person takes a “calculated” risk and strives to improve their life, courage results. I have seen people work very hard to train assistance dogs. I have seen people work very hard to train to be matched with an assistance dog. Different people have different obstacles, but all push on… reaching for that goal of more independence. I’ve seen clients training who are in obvious pain. I have seen people work hard at taking risks and learning new ways of doing things so that they may safely and confidently handle a dog partner. This is courage.

How Does One Find Courage?

Jayne Leone said, “Related to the word courage are the words encourage and discourage. (In fact within the word courage is the word rage.) Think of the times we have encouraged ourselves or encouraged others. Now think of the times we have discouraged ourselves and discouraged others. There are many buzz words being used today — such as empowerment, challenged, support — used by many professionals, when in reality the operative word is courage, encourage or discourage. As we well know, many social institutions can encourage us or discourage us as disabled persons. They can help us be empowered, help us to maintain self-control, help us be self confident, help us gain courage. By discouraging us they can do the opposite” (Independent Living Institute, 1997).

I believe that courage isn’t an attribute one learns and then “ya got it“. I do believe that courage, though hard-earned and a difficult teacher, is practiced by choice on a daily basis. This is why we have “good days” and “bad days”. I think the key to having an abundant life is to have more “good days” than “bad days”, but allow “bad days” to act as a learning experience as well. Let’s face it. We are going to have bad days. Don’t you think the key is in how one RESPONDS to a bad day? Courage doesn’t disappear on bad days. Courage doesn’t guarantee success.

Sometimes? Courage is going to bed after a “bad day”, with resolve to try again tomorrow. Courage means you simply refuse to accept defeat.

The Lion now walked to the Throne Room and knocked at the door.

“Come in,” said Oz.

“I have come for my courage,” announced the Lion, entering the room.

“Very well,” answered the little man; “I will get it for you.”

He went to a cupboard and reaching up to a high shelf took down a square green bottle, the contents of which he poured into a green-gold dish, beautifully carved. Placing this before the Cowardly Lion, who sniffed at it as if he did not like it, the Wizard said:

“Drink.”

“What is it?” asked the Lion.

“Well,” answered Oz, “if it were inside of you, it would be courage. You know, of course, that courage is always inside one; so that this really cannot be called courage until you have swallowed it. Therefore I advise you to drink it as soon as possible.”

The Lion hesitated no longer, but drank till the dish was empty.

“How do you feel now?” asked Oz.

“Full of courage,” replied the Lion, who went joyfully back to his friends to tell them of his good fortune.

Swallow Courage

Ever get caught up in wishing things were different? Do you ever wish you were simply “normal”? (Who defines what is NORMAL, anyway?) I’m at various stages of accepting who I am today. Sometimes I have a clear vision of my “new normal” and seem to understand the “new me”. At other times though? I’ll be honest – I flounder. There is a part of me that wants to “fit in” and do things like “normal” people do.

Why do I have to find batteries so that I can continue hearing when my CI “dies”?

Why do I have to stand and sit slowly?

Why do I have to remove my hearing aid at times when the ear mold leaves a sore in my ear?

Why do I have to use my hands (or Chloe) on the stairs to safely navigate “UP”?

One must “swallow” courage – to believe!

My husband reminded me the other day that even people without disABILITIES struggle with acceptance. As a psychologist, he has seen folks from all walks of life struggle with accepting the way things are TODAY. Age may have made a change in your “normal”. An accident, illness or disABILITY may have changed your “normal”. He said, ““You have differences that make you uniquely you, but that also require some assistance. Without Chloe you’d fall more and miss more. Without your implant you are deaf. You need to accept who you are without apology and stop looking to be treated normally”.

Courage ≠ Never Being Afraid

“But how about my courage?” asked the Lion anxiously.

“You have plenty of courage, I am sure,” answered Oz. “All you need is confidence in yourself. There is no living thing that is not afraid when it faces danger. True courage is in facing danger when you are afraid, and that kind of courage you have in plenty.”

“Perhaps I have, but I’m scared just the same,” said the Lion. “I shall really be very unhappy unless you give me the sort of courage that makes one forget he is afraid.”

You can have courage and still feel fear. The unknown can be a scary thing. When an acquired disABILITY occurs in the life of a person, there are no guarantees things will not get worse. Many have progressive symptoms. Courage does give us the ability to deal with change, however. Few are born with courage. It is a learned skill, an acquired characteristic.

The Cowardly Lion has always been a favorite of mine in “The Wizard of Oz”. I loved both the movie and the books. I smile when he uses his tail to wipe his self-pitying tears away. I grin when he “shakes” in fear of the Wicked Witch and trembles at the sight of the flying monkeys. I know the end of the story. The Cowardly Lion shows courage time and again throughout the movie, putting himself at risk for others and to achieve his own ultimate goal… a gift bestowed from the Wizard – that of courage. Unbeknownst to the Cowardly Lion, courage lay dormant in his fearful heart. He only had to exercise what was already there.

I hope that YOU believe that courage is in your heart. You may not even recognize it. If you take risks and live life “in spite of”? You have courage!

Denise Portis

© Personal Hearing Loss Journal

http://globaldialoguecenter.blogs.com/disabilities/2011/05/courage-enabler-for-people-with-disabilities-or-perceived-differences.html

http://www.independentliving.org/docs5/Leone97.html


 

Imagine!

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Emmanuel Kelly The X Factor 2011 Auditions.

Click on above link for short performance!

I’m not a huge YouTube fan, because captions on music and video are not “perfect”. It’s better than it use to be, but it isn’t good enough that I could say I really enjoy it.

However, this past year I discovered “The X Factor”. It is now in the U.S. and the FOX network is underway on season one. I still like watching the shows in other countries as well. I came across this very special one this past week.

I was so impressed with Emmanuel Kelly’s performance. I think he and his brother’s adoption story and courage can teach so much. Bravery, courage, and “spunk” are not narrowly defined by a body that wields these attributes. Imagine what our world would be like if everyone saw with filtered eyes what Emmanuel’s mother did. Imagine what it would be like if everyone had someone in their corner during developmental years to mold and shape phenomenal human beings. Imagine if every individual with bodies that are broken, damaged, disABLED, or diseased learned to refine and use their gifts.

Learning to live with an acquired disability can be hard. There are always harsh lessons. Yet… acquired disability is not the end of life. We all have talents, skills, and gifts that are not affected by any changes you may find that define “the new me”. Sure… you may lose a few opportunities. I use to sing in choirs. (SMILE). Yet, I still choose to discover, refine, and eventually use the gifts that I DO have. You can do the same. May we all learn to look past first impressions and appearances… learning to IMAGINE.

Imagine there’s no Heaven
It’s easy if you try
No hell below us
Above us only sky
Imagine all the people
Living for today

Imagine there’s no countries
It isn’t hard to do
Nothing to kill or die for
And no religion too
Imagine all the people
Living life in peace

You may say that I’m a dreamer
But I’m not the only one
I hope someday you’ll join us
And the world will be as one

Imagine no possessions
I wonder if you can
No need for greed or hunger
A brotherhood of man
Imagine all the people
Sharing all the world

You may say that I’m a dreamer
But I’m not the only one
I hope someday you’ll join us
And the world will live as one

Denise Portis

© 2011 Personal Hearing Loss Journal

Walk4Hearing – Washington DC – November 6th

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Sponsor Me for the Walk4Hearing

Dear Friends and Family:

At the age of 25-years-old I began to lose my hearing. Over the following 12 years, I would eventually go completely deaf. I now hear through the miracle of a cochlear implant, and the Nucleus Freedom changed my life in allowing me to “hear again”.

If not for the intervention of a friend who invited me to my first chapter meeting of the Hearing Loss Association of America, I would have never learned that there IS LIFE after hearing loss.

Your support goes to help HLAA both on the national and local levels. This support will help them continue to provide assistance and resources for people with hearing loss and their families to learn how to adjust to living with hearing loss. HLAA is working to eradicate the stigma associated with hearing loss and raise public awareness about the need for prevention and the importance of regular hearing screenings throughout life.

Your support also will help HLAA continue to influence communication access, public policy, research, public awareness, and service delivery related to hearing loss. Its national support network includes an office in the Washington D.C. area, 14 state organizations, and 200 local chapters.

My team (Frederick Hearing Loss Advocates) is walking for one of these local chapters, the Frederick County Chapter in Maryland. Please know that even the smallest donations add up to help us reach our goal. Thank you in advance for helping in my goal of raising money and creating awareness about hearing loss.

Click here to visit my personal Walk4Hearing page and find links to securely donate online: Denise Portis

Sincerely,

Denise Portis

and Chloe (Hearing Assistance Dog)

A link to my cochlear implant activation: Click here

I Have Meniere’s Disease – Harsh Reminder

Published on by hearingelmo3 Comments

I have Meniere’s Disease. It is easy for folks to forget that as the disease is “invisible”. Amazingly, I sometimes forget I have it myself. So that is just embarrassing! GRIN. Meniere’s disease manifests itself in individuals in a variety of ways. The disease lacks specific symptoms and triggers that are true of everyone. The disease varies person to person. For myself, the weather tends to be a very specific trigger for me. If pressure systems come into the area that include heavy rains or even high humidity, I know that I will have a “bad balance day”. If that day is simply the beginning of a string of similar weather days, I can be so off-balance by day 3 or 4, that I practically have to CRAWL up and down steps. It’s rather embarrassing to crawl when you are 45 – believe me!

Here in Maryland, we have had a significant amount of sunny, low-humidity days. As a result, my balance has been pretty good. Yesterday, I did laundry and actually jogged up and down the steps WITH a laundry basket. Yet I forget sometimes that in spite of my having few visible symptoms, I still HAVE Meniere’s disease even on bright sunny days.

Chloe does a number of things for me, only some of which are hearing alerts (what she was originally trained for at Fidos For Freedom). Chloe has also been trained to help me with a number of “balance assist” tasks which are very helpful on days I am experiencing Meniere’s disease symptoms. As a matter of fact, there are weeks that Chloe actually does more balance work for me than she does hearing alerts. One thing we have taught her to do is to “roll” her own blanket. I carry a blanket that is HERS. The blanket goes to every place I teach. It smells like her and she knows it is her “safe place” to be unless I ask her to do something for me. I usually put it out of the way in the classroom, but where she can easily see me. The blanket and Chloe are usually within 4-5 feet of me at all times. Below is a video of Chloe “rolling” her blanket — she adjusts the carpet square to be high enough that I can easily reach it without having to bend past my limitations.

Harsh Reminders

I get aggravated at family and close friends sometimes when they make suggestions for me to do something or try something that they KNOW I cannot do. It’s easy to forget certain things I cannot do because I don’t walk around with a sign on my shirt that says, “Beware of fall when bending!” You know what? Sometimes the person who forgets what I can and cannot do is – ME. You’d think I’d always be aware of the fact that I cannot bend to get something off the floor without paying the price. For me… bending far enough to retrieve something off the floor means that I lose consciousness for just a few seconds. Everything goes “black” in my vision, and my “hearing” (even with a cochlear implant) turns off. As soon as I stand back up, everything snaps back into focus. If I bend quickly, (for example to try and catch something as it is falling), I usually “join” the item on the floor… only I am sprawled out looking ungainly and mystified as to how I got there.

We’ve had beautiful weather here in Maryland lately. I need to remind myself on days like these that I still HAVE Meniere’s disease. In class this morning, I began gathering my things up to pack into my bag and exit the room. I dropped my roll sheet, so Chloe went over to pick it up and bring it to me (an automatic retrieve). As I was standing next to her pink blanket, I decided to save myself time and reached down to pick up her blanket. I lost my balance and my forehead crashed into the podium. After connecting with a wicked CRACK, the impact popped me back on my caboose. Thankfully, I didn’t lose consciousness. Chloe trotted over to me with the roll sheet and dropped it into my lap. She wagged her tail at me, nose 3 inches from my face.

“Hey Denise! Umm… why are you on the floor?” (Yup. I can read my assistance dog’s mind. Scary, huh?)

“Guess I should have had you roll your blanket, huh Chloe?”

Upon hearing “roll blanket”, she calmly rolled the end of the blanket and then tugged it over closer to where I sat.

I heard a student over my shoulder ask, “Ummm. Mrs. Portis? Are you OK? Was that your HEAD?”

I tried to chirp out in a manner that was convincing, “Oh sure! I’m fine, no problem!”

As I used Chloe in a stand/stay to get off the floor… I thought to myself one word – over and over again.

stupid

Stupid

STUPID!

Harsh reminders are needed from time to time, if not for any other reason than to remind us of the consequences of forgetting our own limitations.

We need to remember our own limitations. As a person with hearing loss, it helps me to remember that I cannot hear well in really noisy, crowded areas. If I need to have a conversation with someone, it is better to ask them to step over to the side out of the “hub-bub” of noise if I need to talk to them. Failure to acknowledge what I cannot do well (hearing in noise) only results in that I will be frustrated and angry at my inability to understand the conversation. If I want to play with my dogs, I need to remember to sit on the floor in order to tug on toys, throw balls, and squeak stuffed animals at them. If I try to “play” standing, I am sure to take an unplanned nosedive.

Have you had some harsh reminders about your own invisible illness or disability? Some lessons are hard to learn!

Denise Portis

© 2011 Personal Hearing Loss Journal

Untreated Hearing Loss

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An initiative by Phonak – http://www.hear-the-world.com/

I just loved the movie UP! Not just because it had main characters that were dogs – and ones that could talk at that! Carl, a 70’s something animated actor sported hearing aids and spunk. Mostly the latter…

I recently ran into a 70’s something gentleman at the gas pump. I was leaning against the car waiting for my tank to fill, trying desperately to avoid looking at the high numbers scrolling across the screen as my 12 gallon tank drained my bank account. It was a pretty fall day, so I had the car windows down and was talking to Chloe. She could really care less about the price of unleaded, but she does like to flirt with other people nearby. I caught sight of a low tire, and changed positions so as to look at it better. This gentleman caught my eye and said, “I noticed that too… you need air in that tire”.

With some apprehension I looked around the station and could not see an air pump. I responded, “Oh dear, I don’t see an air pump!”

The gentleman cupped his ear and said, “teardrops and dare what?”

I think my eyes popped wide. Another person with hearing loss! I just beamed at him and turned to face him while repeating, “I don’t see an air pump, do you?”

He dropped his cupped hand and turned in a circle looking around the islands of pumps at the station. “Nope! I don’t see one either. You may have to go to another station and get some air in that tire!”

I pointed to my head and said, “I have a hearing loss too…”

He looked at me quizzically and moved to see the side of my head. “Oh! I thought that was one of those new-fangled gadgets people use to talk into. Is that a hearing aid?”

I beamed again, always excited to share and said, “No. It’s a cochlear implant.” I pointed to my other ear,… “but I have a hearing aid in this ear even though it doesn’t do me much good”.

He shook his head sadly and said, “Yes, I tried them for awhile but all I got was squeals and whistles. I never could hear better.”

Pointing to my CI again I said, “You should go to your audiologist and get evaluated for a cochlear implant. I hear much better than I ever did with just a hearing aid.”

He moved closer to me, still occasionally cupping his ear. I couldn’t tell if he was understanding all I was saying, so I really concentrated on speaking at a moderate pace and clearly. At least as clear as a pronounced southern accent would let me.

He stood within a yard from me and looked longingly at my CI. “If I were young again, I’d get that surgery!”

I put my hand on his arm and said, “Oh! You shouldn’t let age stand in your way. I know plenty of folks who are older who get the CI. They do very well!”

“No… no. I’m too old. It’s too late for me”, he said sadly. His eyes glistened and his chin dropped. It was all I could do not to throw my arms around him and hug him tight. Demonstrations of physical affection and empathetic squeezes were not likely to be accepted by a total stranger. So I restrained my impulses and instead said clearly, “You should think about that some more. It’s the quality of life that matters.”

My tank was full, as was his and cars were in line. I gave him my card and told him to email me. I hope he does.

Untreated Hearing Loss

Untreated hearing loss may result in depression, anxiety, little to no social activity, and insecurity (cited by Zounds). Helen Keller, who was both blind and deaf, said that deafness cuts one off from people, whereas blindness cuts one off from things. Even those who have received treatment for hearing loss may experience some of these same results, but in different degrees.

I recently went to a small group Bible study and had trouble hearing when I first came in since everyone was talking at the same time. Someone addressed me and I didn’t hear them. They ended up reacting negatively to that and I sat in shock at having been misunderstood and unfairly judged – and “I’m a veteran!” I thought to myself. But I think as a result of taking concrete steps towards hearing better, those of us who have made an effort to communicate with assistive listening devices and technology have also developed coping skills towards dealing with bouts of depression, anxiety, and insecurities. We have very likely also made great strides in being more socially active. In my case, having a negative experience at least meant I could email my peers and belly-ache about it and get some great advice!

But what if your hearing loss is untreated? If your hearing loss began as an adult, do you remember those early days of not hearing well? I sure do. I can tell you they aren’t GOOD memories either. Slowly, but surely I dropped out of nearly everything. When Terry and I first got married we vowed to continue to date. So even after the kids were born, we’d swap baby-sitting favors and go out on dates. After I began losing my hearing (when our 2nd child was born), those dates dwindled away and eventually stopped. I’d have hubby “order in” so that I could eat something I didn’t have to fix but would not have to face the noise of a restaurant. Now that I have a CI, I’m enjoying dining out again.

If you are still a working adult when hearing loss occurs, it can greatly impact your ability to do your job. You can only “fake it” so long. Hearing loss can be treated discreetly and privately. I have met some people at work, church, or in public who I didn’t realize had a hearing loss until they noticed my own “bling” (or hearing assistance dog) and mentioned it to me. For many, disclosing hearing loss is a choice you can make, whether you are at work or another place you often hang out (ballgames, church, community events, etc).

If you know of someone who may have a hearing loss, you may discover they can be stubborn about agreeing to go get evaluated by an audiologist. Encourage them to do so! Many times audiologists will do a hearing test for free. Even if you do not yet need a hearing aid or other technology in order to maximize hearing, it is good to get a baseline audiogram to chart where your hearing is “going”. Not all types of hearing loss are progressive – but then again there are many that ARE. Having a real way to chart what is happening to your hearing is important.

We use to get our hearing checked regularly in school. Because of budget cuts few schools do hearing tests anymore. Parents should be diligent about periodic hearing tests for their children. Especially those who had tubes put in when young, or suffered from numerous ear infections. If hearing loss runs in the family, it is even more important to religiously set up audiograms for members of the family.

Don’t Chalk it Up to “Age”

I have heard many say that they expected some hearing loss when they reached their late 60’s or 70’s. Age-related hearing loss is not uncommon. However, many choose not to do anything about it. Hearing aids have “come a long way baby”. They come in all sizes, shapes, and COLORS. (Yeah, of course I would mention THAT!) They can be worn discreetly or worn all “be-dazzled”. You may find that you hear fine in “most” situations, but perhaps you have trouble understanding and hearing in noisy places. Hearing aids are also able to isolate voices close and zero in on direction of the listener. You’ll never know what is available until you go see an audiologist and talk to them about your options!

If you tried hearing aids and hated them, but know your hearing loss has worsened – please don’t discount cochlear implants without sitting down and talking to recipients. All three cochlear implant manufacturers have message boards and forums in which you can ask questions and discover answers from actual cochlear implant recipients. Age doesn’t matter either – the oldest person I personally knew who was implanted was 87-years-old. I have read stories of others who are even older. A person does need to be healthy enough to undergo outpatient surgery and anesthesia, but age doesn’t disqualify anyone!

The American Academy of Audiology reported the findings of a study done by the National Council on the Aging. Over 2,300 individuals participated in the study, and 2,090 hearing family members were also surveyed. The results of the study can be viewed here. The study noted that, “Hearing loss is one of the most prevalent chronic conditions in the United States, affecting more than nine million Americans over the age of 65 and 10 million Americans age 45 to 64. But about three out of five older Americans with hearing loss and six out of seven middle-aged Americans with hearing loss do not use hearing aids”.

If you or someone you know has a hearing loss, go get an audiogram and information about your hearing loss. What have you got to lose?

Denise Portis

© 2011 Personal Hearing Loss Journal