Tag: disability

Once Upon a Time…

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Once upon a time, there was a young woman from a small farming community in the mid-West. She was healthy and strong. She loved music, “listening” (but mostly TALKING), and books. She went away to college and met a Southern boy. She had so many dreams! She met a “circle of 8” culturally Deaf friends in college and was welcomed into their small sub-culture on this tiny college campus. She learned sign language.

To her sorrow, she couldn’t have children, so she made big plans to go right into graduate school and eventually be in a place where she could help people. She told her husband, “Someday? I want to adopt some Deaf children”. He knew she had a heart for this culture with hearing loss and also knew she longed to be a mother. He supported her dreams.

Don’t you love “Once Upon a Time…” beginnings? My favorite books begin by transporting the reader back in time. “Time” may be a real time period, oozing with history and descriptions of bygone days. The setting may be in a make-believe time and place. Somehow, it still manages to wrap my mind and heart around the characters and story, despite the make-believe.

When I think of my own “once upon a time…”, I have to smile at my naivety and immaturity. NOT that I continue to be gullible and naive at times – even immature!  However, I find that I am forced to hide my “knowing smile” when I hear my 21-year-old daughter “dream aloud”, or my 20-year-old son outline his “life’s blueprint” for me. Life has a way of taking a person down paths that are only visible through the benefit of hindsight. Our story unfolds one day at a time. Decisions are made – some irreversible. We learn to live with consequences – both good and bad ones. We may “roll with the punches” and work hard to be refined like gold. Unplanned detours have a way of changing our direction in life. Our goals may change in order to accommodate our changed lives.

 

At the current age of 45, I look back upon my own “once upon a time…” story. I am late-deafened and have a balance disorder. I “hear again” with bionics and navigate life with a service dog. I have two children. I’m a teacher. I am still married to my college sweetheart. It has been over ten years since I have been able to visit my hometown in that small farming community. I am “mostly” shunned by the Deaf community as I chose a different life path. I am integrated and immersed in a new community of people with hearing loss and other disabilities that I did not know even existed. I actually love technology and even my books are now in an electronic library. I don’t listen to music – but I do listen. Better than most, in fact…

Chances are I have many chapters left in my story. Regardless of the number of pages, my heart’s desire is that I may make a difference – in even just one life. Occasionally, I hear from disgruntled readers who are exasperated at my viewpoint. “You don’t know what I live. You can’t understand how few opportunities I have now”. I gently remind them that whether they are using JAWS or Dragon software or are dictating to another, they have reached across miles to touch base with me. They have shared their ideas, frustrations, and heartaches. Others respond at times in frustration that they lack the support I have around me and cannot build a foundation for happiness in their own lives. I share with them some things I am unable to share in this venue – the people who have abandoned me and have turned their backs on my family and I. I remind them that every obstacle helps me to peel back layers of who I really am to reveal strengths that are hidden when “everything is perfect”.

No. Our lives are not the same. Where is the fun in that?

Hearing Elmo is actively soliciting other writers to contribute their own stories. In other words… I’m begging. GRIN! I prefer that 50% of the posts sheltered here be from people other than Linda Denise Portis. You can have a different viewpoint! Won’t you consider sharing your own “Once Upon A Time…”? You may not consider yourself a “good writer”. I’m not… and that hasn’t stopped me sharing my own thoughts and stories. I ask because I’m astonished at what kinds of things make a difference to another. We cannot know what others are going through and whether or not their own invisible disability or chronic illness forces them to reach out for help. Some are “pointed” to Hearing Elmo by others. However, most chance upon this “once upon a time…” venue. Won’t you consider sharing your story? It can be serious or fun. You can relay facts or express dreams. If you or someone you love lives with disability, chronic illness, or mitigates personal obstacles/disabilities with a service dog… Hearing Elmo would love to be your sounding board. Are you a trainer or health professional? I hope you will consider writing!

Denise Portis

© 2011 Personal Hearing Loss Journal

 

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

Deep Breath – Start Fresh

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Invisible Awareness Week is September 12th – 18th this year. I love the theme of this year’s promotion. How often do we take a DEEP BREATH and START FRESH? Perhaps the better question is how often do we NEED to do these two things?

Invisible illness or disability definitely takes adjustment. However, just when we may feel as if we have adjusted to a new lifestyle something will happen to take us back to “ground zero”. It may be that your disability or illness is progressive. Or perhaps, your life has simply changed in such a way that living with your challenges requires a new plan. For example, my children are now adults. Even though they still live at home at 21 and 20-years of age, both are working and going to college. This means that they may LIVE here, but I don’t see them as often as I did when they were younger. That means I don’t have the assistance of people who hear as often as I once did.

Part of the reason I decided to train and be matched with a canine partner, was so that I would be independent of my family’s help. Chloe has been a big blessing and I am grateful for her work of being my EARS and to help me with balance-related tasks. For all that she does, however, there are things she cannot do for me. A couple of weeks ago I needed to make a doctor’s appointment. The voice on the other end of the line had a heavy accent. Chloe obviously cannot assist me in understanding a voice with a heavy accent. However, I have found that because my life changes have been gradual, I already had a plan in place for when no one was home to help me with a call that had a heavily accented voice.

Are you a person living with a chronic or invisible illness? Do you have an invisible (or visible) disability? Do a quick assessment of your life, coping mechanisms, and skills. Do you need to take a deep breath and start fresh?

If you are a person living with invisible illness, I encourage you to check out the site for Invisible Awareness Week. Perhaps you can help to spread the word! There are a great number of resources available at the website.

Denise Portis

© 2011 Personal Hearing Loss Journal

“I See Him as a Friend”

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Hearing Elmo welcomes guest writers! (I figure you get tired of only hearing my point of view!) Today I welcome a distant cousin, Ted. Ted and I “met” on Facebook, connecting with family and friends in a way only Facebook seems able to do. It is great fun to talk to him because we grew up in the same small town, “middle of nowhere”, farming community. Ted works with a non-profit called “Aids – Out of Africa” (http://www.facebook.com/pages/AIDS-Out-of-Africa/109654919088134) and is also active in his community, helping to dispel myths about people with disabilities. How? By being their friend…

Hope to hear more from Ted in the future!

—————————————————————————————————-

When my cousin was asking for stories for the web site about disabilities I was a little confused.   But I walk around in a state of confusion anyway so it didn’t bother me.  I did however start thinking.  Disability is all around us every day.  Sure we recognize the Disabled Vet in the wheelchair or the blind with the service animal, but we miss many of the other truly disabled.  Disability comes to many in all forms.

Having been associated with the Veterans Hospital for the past 30 some years, I have become accustom seeing “Disabilities” and don’t stop to stare or wonder the why’s or what’s of this concentrated elite group of America’s often forgotten service men and women.  Some are missing arms or legs, some are blinded, some in wheelchairs.  But many have hidden  “Problems” that we don’t see.  They are legally blind but do not require a service animal or the typically white cane.  Some are deaf but with the miracles of new hearing devices are able to communicate without being obvious.  When I walk into the audiology clinic, the receptionist, Peggy, greets every patient looking directly at them, speaking clearly, just a touch of volume, and a little slower.  Suddenly I realize that she cares.  That means a lot.  And when scheduled for the optometry clinic the doctor personally called my home to reschedule an appointment because she was being transferred and wanted to personally follow up on a surgery.  I take that kind of service very serious.  I appreciate those who care to go that little extra distance.

Now for the purpose of this writing and the  personal note.  Charlie is a friend, I call him a friend because he always takes the time to come over and speak to my wife and I every Monday at the weekly auction we seem to always attend.  He jokes with us and tells us what has happened during the past week.  If Mary is not with me, he will ask about her and the same if I am not in attendance.  He pats me on the back and makes me happy.  I see him on occasion at different locations all over town.   He is the kind of friend that never complains about his personal problems.  If his personal transportation broke down, I would help him replace or repair as necessary.  However he has a disability that many shy away from.   Charlie is limited mentally.  His appearance also makes many uncomfortable.  His teeth were not taken care of but that is in a stage of repair now.  Most people see him as a nuisance or embarrassment.  I see him as a friend.  I have asked myself what is there about Charlie that makes me proud to be his friend?  It is because his “Disability” only exist in the minds of the “Normal” people around him.  Charlie is seen all over town because although he is not allowed to drive, rides his bike pulling a trailer, around to selected locations to do odd jobs.  He is at the auction because he helps load items for buyers for whatever “Tip” they might give him.  During the night he sometimes shows me how much money he has taken in from his work that night.  In his mind he is not “Disabled”.  He is however truly challenged.   He lives alone, and pays his rent.  He wears clean clothes, and is showered and shaved.  I cannot compare him to all the people that thinks the world owes them a living because he makes his own lemonade out of the lemons that nature has dealt him.

So as we walk past people at Wal-Mart, or set beside them on a bus, we don’t really understand the limits of their “Disabilities”….. Perhaps better yet we do not understand their unlimited  “Abilities”.  Maybe the person just needs a friend.  I don’t think the word “Disabilities” is a true description.  I think that the word Challenged is better.  But neither fits my friend Charlie for in his mind he is not challenged nor disabled,  he is making a living the only way he knows how.  If he receives a little help along the way, that’s great.  But he would rather be accepted as is, where is.  So when you are asked to repeat a statement because the person could not hear or more likely not understand you, don’t get angry or say, “Forget it” for they can’t forget.  Try to be more like Peggy, louder, slower and facing them.    If the vision impaired need a little assistance, offer to help.  Just a, “Need some help with that?”, can make a person’s day.   It might even make your day.  An older person might be struggling to reach an item off the shelve.  When you hand it to them, there is a moment where you feel like you have really done something great and you have.

Ted C. Burhenn.

When Family Can’t Forget

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For the sake of this post, I’m brave enough to admit my age. I’m 45-years-old. I remember thinking that 45 seemed really old when I saw my parents celebrate that birthday. Now that I’m 45 myself, it doesn’t seem very old at all. As a matter of fact, I spend a lot of my time wondering when I will grow up.

Are you who you were at 10-years-old? (Can you remember back that far?)

Are you who you were at 16-years-old?

How about 20-years-old? Are you the same person you were then?

I think about who I was at these *mile stone* birthdays and realize how much I’ve changed over the years. Oh sure, our personalities, quirks, and even some habits remained ingrained in our make-up even decades later. But something happens to an individual growing older.

Life.

And you know what? Life can be hard. Oh yes – I know! Life can be very good. However, in my own life the more positive changes in who I am, occurred as the result of crisis and difficulties. One of the more frustrating things about “growing up”, however, is that our families won’t let go of who we were.

Think about it for a second. I left home at the age of 18-years-old. Many of you did the same, or perhaps even younger. Our parents, siblings, and close relatives who sat in the same pew as we did at church and attended the same high school football games, very likely have had very little participation in your growing up since that time. That’s what leaving home is all about. We make our own lives, invest ourselves in our own families, make mistakes, and grow. All this happens with very little influence of the people that were ONCE a major influence!

It’s very frustrating to me, however, to not be seen as who I AM around my family as they think I’m still who I WAS. I wasn’t the best big sister in the world. Having dealt with a number of emotional issues in my late teens, I can admit I wasn’t the best daughter in the world either. Now that I’m 45-years-old I don’t get to see my family nearly as often as I prefer. I have seen my sister 5 times since 1986. I have seen my brothers one time in the last 9 years. We all live in different states – spread out all across the U.S. I am able to see my parents at least once a year. However, I haven’t seen my grandparents since 1999 – which grieves me to no end bein’ they had such a major influence on my life in my developmental years. (Colorado is a long way off from Maryland). I was getting a bit aggravated when family members would make comments about me – even in a teasing fashion -as if I’m still the same person that I was. But then it hit me! How could they know who I AM, since they have not been involved in my life on a daily basis for the last 2 decades? The answer to that is that – they cannot!

As a result of this “middle of the night” epiphany, I began to ease out of feeling frustrated at not being able to leave my past – in the past – around my family. Worse? Try evolving into a person with an acquired disability when your family can only remember you “disability free”. I feel for them! It can be very hard to understand exactly what it may mean for you to live life on a daily basis – different now- solely because of an invisible disability or acquired chronic illness. For my immediate family members the process was gradual and progressive. They would be unable to pinpoint a point in time when I began to be who I AM. But for other friends and family members it can be very difficult to understand who you are now that acquired disability or invisible illness has changed you.

A young woman with fibromyalgia said: “I guess, where i’m very frustrated today, is, i’m having a fibro flareup, no doubt due to stress, i work at a bank, and we’re getting audited tomorrow, so checking, double checking, to make sure everything is just right, and i am so tight, and sore today, and NO ONE gets it, to look at me,i might look tired, but they just assume i’m ok, well, i’m NOT. It’s one of those diseases that no one can see that you have it, they have no idea how much pain we’re in, and they just assume everything is ok, and they don’t understand why I’m being so quiet, and they think i’m mad, and it is not that, i just feel like dirt” (Dannape, 2011).

Invisible illness with invisible symptoms are difficult to explain or even complain about. You LOOK fine.

On a hearing loss forum, 16-year-old Xatego explained:  “How do I deal with my family who claim they completely understand my hearing loss? I appreciate the fact that they were supportive and gave some of their time to look after me. But it annoys me when they like to think that they understand my hearing loss and the implications it has on my day to day life. I basically have a 90% loss of hearing. For example, my parents question my need to have subtitles when I’m watching TV. They say if only I watch TV without subtitles, it would reduce my need for it. I explained to them why, they didn’t listen. My cousin and I are basically the odd ones out of our whole family. He has severe autism and behind his back he is labeled by other relatives as the “crazy” one. I wonder what they call me since they treat me like an idiot. One of them even asked me if I was ‘still’ deaf. My sister and my mother gets irritated when I ask them to repeat their words. I get so frustrated; it’s not like I like having to ask them to repeat what they’re saying continually. When they say they understand.. They don’t. If you don’t have a hearing loss you don’t understand the way it cuts you off from people” (Xatego, 2011).

It can be really hard to explain what life is like for you when you are only beginning to understand it yourself.

Trying to Leave your Past – in the Past

Have you ever lived with someone who was losing weight? Someone with a great deal of weight to lose has learned that in order to keep it off, weight loss should be gradual with numerous lifestyle changes. The people who live with you may not SEE a lot of weight dropping off of you. But if a friend or family member came to visit who has not seen you in a long time, they are astonished at how different you look! I think it is the same for family members who spend time with me that have not seen me in a really long time. They are taken aback by the cochlear implant, hearing aid, and assistance dog. They remember who I WAS.

Earlier I asked if you were the same person you were when you were 10, 16, and 20-years-old. As for me? I didn’t really like who I was at any of those ages. Did you make stupid mistakes when you were younger? Did you ever make a decision that left long-term consequences? Ever feel as if you are wearing “scars” as the result of some past experience? I think some of the most crucial, vulnerable moments are in the weeks, months and years immediately following a firm decision to be DIFFERENT. An alcoholic may remember the day and time of their last drink – even if it was decades ago. But they will be the first to tell you that family and friends hurt by their alcoholism had a hard time believing “this time” was for real.

The ex-con will tell you that when they made 180 degree turn and CHANGED, their skeptical family and friends had a hard time believing it was for real!

The drug addict who is now free from the poisons they once put into their body will tell you that family and friends who had “seen it all” – wait around waiting for the other shoe to drop! For a significant amount of time everyone’s expectation is that the person will go back to being who they WERE.

Why do we long for people we love to break bad habits, yet make it hard for them to really do so? Why do we believe they will only fail again? In spite of testimonies of people who have gone on to serve in their communities and churches, raise families of their own, and be contributing, POSITIVE influences in their homes and workplaces, we who knew them “when” expect more of the same. Shame on us! I have seen God use people who were once drug addicts, alcoholics, and criminals in ways He could never use people who look perfect.

At some point in time these changed people made a choice.

and they never turned back.

Victor Frankl said, “When we are no longer able to change a situation, we are challenged to change ourselves”. God uses hardship to change us. But our biggest skeptics may be those who love us best. We may be misunderstood and even spurned. You may feel as if your family cannot let go of who you were. But I’ll never be that needy, selfish, emotional basket-case of young womanhood again. My trials have made me strong. Angela Barron McBride once said, “Full maturity is achieved by realizing that you have choices to make”. I made choices. You’ve made choices. Hopefully we are ALL continuing to reach towards what being mature is all about! For the Christian, it is becoming more like Christ. We’ll never “get there” – but our goal should be to become more like Him day by day.

Because I’m not who I was 2 decades ago, I long to be the kind of person who believes that people who hurt me years ago are not who they were either. That sister-in-law you couldn’t stand? Twenty years may have changed her into someone you can now not only like – but love. That brother who was in and out of rehab and managed to drag the family through the disaster of three failed marriages may not be who he was. At what point do we believe the BEST of people? If God can change ME, He can change anyone. I’m not perfect… and I have not “arrived”. But I do like who I am. I wouldn’t change a thing. The process was (and IS) painful, but worth who I see in the mirror each day.

Try not to be aggravated when family members have trouble letting go of who you were. Time will tell – and if you are lucky? You may live to hear one of them say, “You aren’t who you were… you’ve changed!”

Dannape (2011, April 27). Fibromyalgia General Discussion. Message posted to “The Pain No One Sees”. Retrieved May 25, 2011, from http://www.fibromyalgia-symptoms.org/forums/Fibromyalgia_General_Discussion/The_pain_no_one_sees/
Xatego (2011, April). Yahoo Answers: People with disabilities. Message posted to “How do I deal with my family who claim they completely understand my hearing loss?” Retrieved May 25, 2011, from http://answers.yahoo.com/question/index?qid=20110424135942AA52fMB

Denise Portis

© 2011 Personal Hearing Loss Journal

Follow-up to “Community”

Published on 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.

Dr. M. E. Osborne

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 3rd 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

For Our Own Good

Published on by hearingelmo7 Comments
A dog with a cone that is not FREAKING OUT

Chloe was injured on May 9th and it has been a LONG road to recovery. She had surgery following the accident to save a toe, lost 4 toenails… and it has been “3 steps forward and 2 steps back” ever since! Our biggest problem was getting her to leave the surgical site alone. Chloe is very smart. Chloe has been trained by the best. Chloe attends Fidos For Freedom for follow-up training and polishing. But Chloe? Well… she’s still a DOG. We were given a very nice cone similar to the one in the picture above. The only problem was that Chloe would go BERSERK when I put it on her. During the day, I could simply keep an eye on her while I was working at my desk. However, at night I needed a little assistance. The CONE was suppose to be my assistance. Every time we put the “cone of shame” (a line from the animated movie UP!), she went crazy… running into walls, dashing her head around, and inevitably breaking open the cauterizations and stitches on her foot. We ended up having to use “Bitter Apple” instead.

This saved my life actually! I wasn’t getting a “wink” of sleep and was seriously near a nervous breakdown from fatigue. One of my daughter’s friends at work recommended “Bitter Apple”, and it only took a few sprays for Chloe to LEAVE her FOOT ALONE! All night! (Thank you GOD… quite literally!).

I think part of the cone’s drawback was that it wasn’t transparent. Chloe couldn’t see to the right or left… all she could see was what was directly in front of her. It made her panic – the NOT knowing what was around and about. She could hear our voices, but her world had suddenly become very small. It was only as big as what she could see out the end of the cone.

You can’t very well explain to a DOG why they need a cone on their head. If you could explain that… well GEE! You could probably reason with them about why they should leave a surgical site alone! We could not explain to Chloe that the cone was for her own good.

For OUR Own Good

Isn’t that just like us? How often do we fight against what is only there to protect us? Some things that come to mind:

1. The speed limit. It’s not there to challenge you to see if you’ll get caught speeding. It’s there to protect you and others.

2. Exercise and eating right. How many thousands of Americans re-commit each January to make this change? It’s not because getting sweaty, pumping “iron” and eating fruits and vegetables are a lot of FUN. But we’ll live longer… and probably feel better too.

3. The 10 Commandments. Yeah, I know… it’s OLD TESTAMENT. But aren’t these things we should all continue to strive for even as “New Testament” believers? If you are a person of faith it normally means there is something different about you. If you covet, steal, murder, and hate, it is YOU who is scarred and broken in the end. Those “commandments” are for your good.

4. Taking medicine. Blech. But if you are sick, do you not take medicine when it may be what stands between you and good health… or life?

All 3 dogs were very concerned about my donning the "Cone of Shame"

I tried on the “Cone of Shame”. (Does that make me “game” or nutty?) The dogs were very concerned as you can see. All 3 sat in front of me and Chloe whined and breathed hard in my face every time I turned her way. It was very disconcerting to not be able to see around.

I believe that a “cone” is a good representation of how difficult it is to put your faith and trust in something or Someone that you can’t see. I have never seen God, yet He’s as real to me as anything I have ever experienced. I see Him in His creation. I see Him in the service and love of others. I see Him in answered prayer… even when He says “no”. Yet, I’ll admit to a major frustration in my faith walk. It is really hard not knowing what tomorrow may bring.

It can be very disconcerting to have a disability that may be progressive. It can be frightening to have an invisible disease like fibromyalgia, Meniere’s disease, or hearing loss. Have you ever been told “you’ll only get worse”? That knowledge can make it really difficult to have dreams and hope to see beyond “today”. We have to trust that what we have access too is enough for now. We should reach out to others and form strong relationships. We should research, prepare and educate ourselves. We don’t have to run around in a panic with this “cone” we didn’t ask for! Can you calmly and in faith, believe the “cone” is for your own good?

I have a “short-term” goal and a “long-term goal”. I strive hard to make every minute in pursuing both worthwhile. I know God has a plan for me that is not fulfilled as of yet. I know this because I am still here. It can be very frustrating sitting around with a “cone on my head and heart” — not able to see the big picture that God has access to  — since He PAINTED IT. I know keeping my eye on the short-term goals are important. It’s good for me. It keeps me focused, on track, and “real”. Yet I really want to be able to see 360°. I realize GOD can see the big picture… that’s what “omniscient” means… all knowing. I have to have FAITH that what I’m allowed to see and make sense of RIGHT NOW is enough. Having that “cone” on is for my own good.

It may not be very comfortable, but we have to believe that God has our best in mind.

Proverbs 3:5-6

Trust in the Lord with all your heart,
and do not lean on your own understanding.
In all your ways acknowledge him,
and he will make straight your paths.

At some point… I’m going to see beyond the cone.

Denise Portis

© 2010 Personal Hearing Loss Journal

Insecure Foundation?

Published on by hearingelmo3 Comments
Kyersten and Chloe at the "Candle Barn" in Bird-in-Hand, PA

Spring Break! My entire family was on “Spring Break” last week with the exception of ME. As this was Kyersten’s last Spring at home for awhile she was determined to do something “fun” everyday. Friday, she and her daddy had planned to go to Lancaster County. Since I DID have Friday off, I invited myself along.

Two of our favorite places to go in Lancaster County are Bird-in-Hand, PA and Intercourse, PA. (At the latter, my daughter always tries to talk me into a t-shirt that says, “I love INTERCOURSE!” Let me think for a moment. Umm. NO!!)

We enjoy walking around the shops, and my husband was thrilled because on Fridays the Farmer’s market is open as well! Next to and ABOVE the area where the main Farmer’s market is located, are some neat local shops and antiques. Chloe and I found a rickety, old staircase to the top floor and carefully made our way UP.

When we made it to the top, I noticed that Chloe was lagging (walking behind what is a proper heel) which is something she just NEVER does. Her problem is “forging ahead” on a normal day! So I looked back to remind her to heel and noticed something. Her legs were shaking so badly, I could see the hair on her legs and stomach trembling. (What in the world?) Something had her spooked, but I couldn’t tell what it was. I patted her on the head, and asked her to heel again. As soon as I took a step I knew what had her rattled. (Now that I was paying attention… that helps! GRIN) The old, creaky, wooden floors had a lot of “give” and groaned and moved under our weight. I’m sure she could hear it AND feel it! I thought for a second and then decided to stand next to her and shuffle around, tap dance and “hop” standing next to her. At first she dropped like she’d been shot and lay trembling on the ground. I kept talking to her softly and continued to erm… ACT LIKE AN IDIOT. I’m sure anyone downstairs probably thought the world was coming to an end! Five minutes and 150 calories later, Chloe sat up and watched me with a tentative tail flop. Ten minutes more, with a more normal volume and another 150 calories burned, I found her standing next to me with tail wagging like crazy – simply thrilled that  I was inviting her to dance.

Chloe was afraid. The foundation beneath her had to much “give” and groaned and complained at our movement and weight. She wanted to STAY PUT. It took a more confident friend to convince her that all was OK.

Feeling Insecure?

At some point you are going to be either the trembling pup, hugging the floor with nails dug in and eyes wide as saucers, or you will the confident friend who gently persuades you to “get on livin’ it”.

I can’t think of a time when I felt more unnerved than when I felt as if my very foundation was wobbly. You count on your foundation to “HOLD”. It is from a solid foundation that one can build and grow. What do you do when your very foundation is creaking and groaning? How do you “shore up”?

I’ve not made it a secret that I am a person of faith. I believe that God created everything and remains very “HANDS ON” with His creation. I believe that we BLEW IT. Because we are all sinners and in need of a Savior, God sent His one and only Son. Jesus died for you whether you wanted Him to or not! Salvation only comes through believing and accepting that free gift. Any other foundation is going to fail you.

People screw up. They are going to disappoint you.

Careers are temporary. Someone younger, smarter, better looking, and who will work for LESS is going to come along.

Community service is great! Volunteering and making a difference in the life of someone else proves you are someone who LIVES what they BELIEVE. But you aren’t going to be recognized each and every time. “Man” or “Woman of the Year” is only a plaque that gathers dust.

You may be healthy. Yet that can all change in a day. Disabilities, disease, and suffering are something all of us will experience is one form or another.

Life can be very hard. Life can also be very… VERY good. But what happens to YOU when life is hard? What does your foundation feel like? Will it hold?

When I am FLAT ON THE FLOOR terrified to continue, I often turn to prayer and scripture reading. Sometimes God sends along a friend who will tap dance, hop and gently persuade me that all will be OK. Perhaps they’ve lived the same thing and came out … better.

You know? Chloe left that upstairs shop a different assistance dog. She was confident about that next step we were going to take. (Denise danced and hopped and didn’t fall through the floor!) We made our way back to the Farmer’s market to find something yummy to eat. I’d burned 300 calories ya know…

Scared to go on? Perhaps you need to rest awhile. Rejuvenate. Maybe you need to do some introspective reflection. Does your foundation need some repair?

Found someone hugging the floor? Don’t preach at them. Don’t ignore them either. Pray for them. Let them know you are there. Share your story. Tap dance.

After all, the Amish are outstanding carpenters. That floor is going to hold.

Denise Portis

© 2010 Personal Hearing Loss Journal

The Me I Want to Be

Published on by hearingelmo5 Comments

Here lately I’ve been living my life like… well? Like I’m waiting for the other shoe to drop. I’ve had insomnia, which is something I have very little experience with actually. Having a hearing loss and Meniere’s disease usually means that when I go to bed at night I have reached my “EXHAUSTED” mode. I take my cochlear implant off, brush my teeth, climb into bed and am normally asleep within ten minutes!

For the past month, however, I have not only had difficulty going to sleep, but I’ve had trouble STAYING asleep. There is far too much going through my mind, and I’ll just be honest with you… I’m worrying.

Now I hear others say from time to time that worrying is sin. I actually don’t hold to that. I don’t think it is a sin to worry, because we are all prone to do so. What is wrong is when we let that worry wreck our lives, or sidetrack us from why we are here. I don’t believe worry is sin unless we allow it to produce something negative in us. Worrying has to change to BELIEVING.

I’m in this period of life I like to think of as “pre-EMPTY NEST“. My daughter heads to Liberty University this fall as a transfer student. My son is graduating from high school this coming June. For the first time… I HAVE time. My kids are young adults and I certainly realize that there will be times when they still need MOM. Heck! I’m 43-years-old and there are times I still need MY mom! But for the first time, my short term goals don’t include doing anything on behalf of one of my kids. What were once my long-term goals, are now my short-term goals and I’m having to re-focus and make decisions about what I want to do … when I grow up. Cuz it’s here now…

I think part of the reason I have allowed “worry” to produce such a negative effect, is because I never thought I’d be who I am. Two decades ago I first began to think about    “someday”. I never thought I’d hear and communicate only because of the miracle of a cochlear implant. Being a “bionic woman” was not part of the plan, you see… and yet

here I am.

I never envisioned that when weather systems moved into the area I would have trouble walking. I never thought I’d have an assistance dog to help me find the direction of sounds and alert me to sounds I still don’t hear well. It wasn’t in “the plan” to have to ask my dog to pick up things that I drop.

Don’t get me wrong! I have a very positive self-image and like who I am

who I have become.

But I’d be lying if I said that this was what I imagined. I’m a 43-year-old woman with a couple of disabilities. I didn’t plan for it to be this way. There was a “me I want to be“. So I’ve been laying in bed at night worrying…

Should I go on to get my doctorate?

Will I be able to do what I want to do even though I have a hearing loss?

Will others believe in me and see my abilities, or be sidetracked by the disabilities?

Am I even capable of doing what I dream of doing, or should I change my dreams?

When Worry Becomes SIN

So it doesn’t take a “rocket scientist” to figure out that this period of worrying for ME… has turned into sin. I’m not sleeping. I’m tossing and turning and fretting. So yeah! The worrying hasn’t produced anything positive nor been the impetus for a purposeful change. Instead I’ve been miserable

and tired.

Have you ever been afraid to dream for fear that God would say “no”? Maybe you don’t even want to voice what your goals and dreams are to Him because you are pretty sure He’ll say, “Nope! That isn’t My plan for you!”

I believe that God gifts us and equips us to reach our goals. I think our dreams are simply little seeds that we are born with that grow as the result of our utilizing our God-given skills, talents, and strengths. In each of us there is the potential to realize our dreams. Excessive worrying can side-track us from taking those steps towards our dreams.

I’ve also decided to quit silently worrying and just go public with what I hope for! How else are others able to pray for me, and encourage me? For quite awhile I’ve been afraid to voice what my dreams are for fear of people rolling their eyes. I know it isn’t going to be easy. I also know that it will take time to get there. The “me I want to be” is the me God has equipped me to be after all! Sure… sometimes we make poor choices and the “getting there” may end up being a more indirect route. Or perhaps “life happens” and you end up with a life-changing, daily challenge in your life. It doesn’t make your dreams unattainable.

So… pray for me if God brings me to mind, won’t you? This working towards “the me I want to be” is scary sometimes. I’ll promise to pray for you too… just shoot me an email and let me know how I may do that on your behalf!  denise.portis@gmail.com

My dreams (now public knowledge)…

I want to teach MORE than I am now, and would like to teach in a community college.

I want to write a book.

Denise Portis

© 2010 Personal Hearing Loss Journal

P.S. An incredible book I am enjoying… “The Me I Want to Be” by John Ortberg. Click the book to find out more!