Tag: disabilities

In Heaven’s Eyes

Published on by hearingelmo3 Comments

deafness-profile-004

What do we look like in Heaven’s eyes?

Many years ago, back in the days I could “hear” and before Sandi Patti’s “fall from grace”, I use to listen to her sing, “In Heaven’s Eyes”.

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SIDE NOTE:  Exactly what IS a “fall from grace”?  One can’t FALL FROM GRACE! (said… with a bit of a screech in my voice).  She only “fell” from a legalistic pedestal erected by bozos who think THEY have never done anything in need of “grace”.  She is as human as the rest of us… living life, making mistakes, saved by GRACE!

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I have “lively” conversations with a culturally Deaf lady from time to time.  “Lively”, because we really do burn calories in signing our own point of view about a topic.  We have “good arguments”.  The kind of arguments that I hope she thinks about (and blogs about?) as much as I do when we go our separate ways.

We ended up talking about deafness as we often do.  She tries very hard not to hold it against me that I chose to get a cochlear implant.  She succeeds in her attempts… MOST of the time.  However, at times it just gets the best of her and we “argue in a good-natured” way.  She is a very self-assured woman who was born Deaf and has lived her entire life deeply involved in the Deaf culture here in our country.  She worries that so many children born Deaf as she was, are being implanted with cochlear implants.  I think she worries about the future of the Deaf.  Her biggest pet peeve is for someone to behave as if she can’t THINK as a result of her not being able to hear.  She doesn’t feel broken.  She doesn’t feel disabled.  She feels very normal.

I know she is a believer and so teased, “Well what are you going to do when you get to Heaven?”

“Not Deaf in Heaven’s eyes,” she replied in sign.  “Not hearing (pointing to me) in Heaven’s eyes.  Same (as she indicated both of us).

I instantly remembered the title of the song by this title, written by Phill McHugh, and sung by Sandi Patti.  I asked her if she’d ever seen the words to the song before.  (You don’t ask a Deaf person if they’ve HEARD a song before – smile).  She had not.

I got us “back on track” in our conversation, and explained that she misunderstood what I meant.  I explained how there will be no deafness, blindness or other disabilities in Heaven.  I perhaps got a little carried away as I often do, in talking about Heaven… it took me a full minute to realize her face was unhappy.

She explained that she knows and has read that there is no sickness in Heaven.  She has heard pastors teach that “the deaf will hear, the blind will see, the lame will walk”. Everyone will have a perfect body in Heaven.

No pain.

No tears, nor sorrow.

No sickness.

No calories.

GLORY! (smile)

I realized that, as she has no problem being Deaf and does not consider her deafness a disability, “whats to fix” when she gets to Heaven?  She even tearfully told me that if she has to “hear in Heaven”, she’s not sure she wants to go.

Woah.

Perhaps that is why when someone develops a disability later in life, their perspective is different.  I’ll probably get some “mail” for saying this, but…

If you’ve never heard before, how can you say you don’t miss sound?

My own study of history and the Bible, convinces me to stand firm in my thinking that in the garden of Eden, Adam and Eve could hear perfectly.  I think every part of their bodies worked perfectly.  We were created with ears, the inner parts of which all work together in a wonderful way, allowing us to hear.  It wasn’t until that bite of fruit and disobedience that deafness worked it’s way into our genes. Along with other disabilities, cholesterol, diabetes, birth defects, and

Weight Watchers.

You know you have a real friend, when you can “agree to disagree” and go on from there. It brings me great joy to hear my own young adult children talk about friends they have that don’t believe EXACTLY the way they do. Even better? Rest in the friendship of one who challenges you to discover what you really believe. Hmm.  I’ll save this for another post!

I could tell with startling clarity, my friend and I were at an impasse. Sometimes it’s better to “zip your lips” if you know nothing more can be said in a constructive way.  I guess in this case, I “sat on my hands” versus “zipping”.

Treasuring our friendship, I decided to back up and share the words of that song with her.  She loved the message as well.  This past month, I found out that my Deaf friend is gone.  I only saw her at her place of work, and she lost her job. I need to put on my detective hat and find out where she is now, and see about meeting her for coffee.

I’ll leave “you” with the words to this song as well.  I love it, for it reminds me that Heaven really does view us all the same.  How we look, what we do, where we were born, nor how well our bodies “work”, matters in Heaven’s thinking.  We all need a Savior.

A fervent prayer rose up to heaven,
A fragile soul was losing ground
Sorting through the earthly babble,
Heaven heard the sound.

It was a life of no distinction,
No successes, only tries.
Yet gazing down on this unlovely one,
There was love in Heaven’s Eyes.

The orphaned child, the wayward father,
The homeless traveler in the rain
When life goes by and no one bothers,
Heaven feels the pain.

Looking down, God sees each heartache,
Knows each sorrow, hears each cry,
And looking up, we’ll see compassion’s fire
Ablaze in Heaven’s Eyes.

Refrain:

In Heaven’s Eyes, there are no losers,
In Heaven’s Eyes, no hopeless cause.
Only people like you, with feelings like me
And we’re amazed by the grace we can find
In Heaven’s Eyes.

Denise Portis

© 2008 Hearing Loss Journal

Parking Lot Adventure

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Mom and I came out of the pet store with two huge dog food bags, a huge bag of litter, and three new litterboxes. It was starting to sprinkle rain, so Mom took her “ears” (her cochlear implant and hearing aid), out and carefully stored them in her purse. We made a plan: she and Chloe would make a break to the van and open it.  I would push the heavy cart to the van. Sounds deceptively simple right?

Mom and Chloe ran out into the rain. I pushed the cart and ran into the parking lot… in front of a car (don’t worry, they had stopped for me).  Suddenly, the three litterboxes fell from my cart, into the exact middle of the road.

“Uh oh! MOM! THEY FELL! COME BACK!!!” I yelled, momentarily forgetting Mom couldn’t hear me without her “ears”. She continued to run into the distance. A woman standing on the sidewalk stared after her.

“Yeah! YOU GO GET THE CAR, I’LL STAY HERE!!” I yelled, as if that was our plan all along… in case anyone thought my mom had abandoned me… to be hit by a car… as I dragged my litterboxes and cart to the sidewalk.

Well, technically she had!  But… she didn’t mean to. I am a CODA – child of a deaf adult – and I was used to having to say, “Oh, she can’t hear me, I’m on my own for this one.”

Mom turned around when she reached the car and realized what happened. She stored Chloe in the van and raced back to help me.

I was howling with laughter at this point. I have a strange sense of humor.

Mom was laughing too. I probably looked ridiculous trying to drag everything out of the way. And so we laughed  in the rain, as we smiled apologies to cars and people.  We finally dragged our cartload to the van.

“What are you – deaf??” I teased when we reached the van.

Being a CODA has taught me a certain level of independence, learning to think for myself. When household accidents, parking lot accidents, losing someone in a store, etc. happen, I learned to calmly handle the situation myself or to walk to my mom. I can’t always call for my mommy…she can’t hear me. It’s something I learned and accepted.

Just like I know I can’t stand behind my mom and talk to her. Because 99% of the time, after pouring my heart out to her back, she’ll turn around and give a piercing scream, all because she didn’t know I was there!

Having a mom with a hearing loss isn’t a trial, it’s just different. My brother and I adjusted just like my mom had to adjust to her hearing loss. It affects the whole family, but it doesn’t have to be negative. We adapt and change along with her.

And it does give us extremely amusing moments…or extremely scary, because having your mom scream loudly when she turns to see you usually causes you to scream in return. Trust me. Ask Chloe.

Kyersten Portis

18-years-old

Kyersten’s mom lost her hearing when Kyersten was only two-years-old.  Kyersten has only known her “mom” as a person with hearing loss.  Kyersten and her family live in Maryland with a menagerie of animals.

“Life is My University”

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Louisa May Alcott (1832-1888 )

“Life is my university, and I hope to graduate

from it with some distinction.”

I have always loved quotes.  I write them down, meditate on them, journal about them, and have learned the power of words.  Although many quotes have taken hold of my very soul… forcing me to make changes and “grow up”… I am very conscious of the fact that I am neither profound nor eloquent.  My own children will remember a couple of quotes all right!  My son will remember how fond I was of saying, “If you’d put it up when you’re done with it, I would not have to interrupt what YOU think is important to do it now!”  My daughter will remember, “You’re being to hard on yourself!”

I don’t “live”, to be “quoted”, and yet still recognize the impact “quotes” have made in my own life.  I am currently reading a book by Drs. Parrott and Warren entitled:  Love the Life You Live.  In the introduction, the authors chose to begin the book with a quote by Louisa May Alcott, “Life is a university, and I hope to graduate from it with some distinction”.  Sometimes quotes seem to leap off the page for me!  It is as if a hand reaches through the pages of the book laying in my lap, to touch my heart with the power of truths wrapped in the guise of words to forever change who I am.  I sat there re-reading, and then contemplating this quote for at least twenty minutes.  (Yes, I know!  It can take me awhile to read a book!)

“Stress 201:  MWF 8-9:30 AM.  Professor:  TBA“

I’ve had a tough year if I’m to gauge it with the type of things that measure stress and anxiety.  If I’ve been “taking classes” in this “university of life”, I’ve not been able to pull a “C” and will likely need to repeat the classes if I’ve any hope of graduating!  The sobering facts about my “school year”, are that outside forces and circumstances did not cause the stress and anxiety.  These “classes” were manufactured by internal insecurities, “righteous indignation”, and the wails of a childish response screaming, “that’s not FAIR”!  I hate these kinds of classes.  The kind of classes where the professor is YOU, and you can’t believe that bad luck in ending up with yourself as the teacher!

When my husband was encouraged to resign his position as Executive Director of a national non-profit last year because his “skill set” was no longer needed, and the organization wanted to hire a younger, experienced fund-raiser that would represent the “new face” of the population, he was disappointed for all of one day.  He has the unnerving, yet enviable ability to see the positive in everything.  He is now in a completely different environment where he is making a difference in a larger population of “others”, than he ever hoped to touch at his previous job.  He is thriving, growing, and more importantly content and excited about the future.

I chose not to look at it as an opportunity to get out of a stagnate, negative environment.  Instead, I was angry that he was not given the opportunity to expose the truth, that he was not given the chance to present what was really going on behind “closed doors”.  However, I quickly went from “righteous indignation” to “praying God’s wrath” on their heads!  Yes.  Hubby and I registered for different “classes”.  His completed coursework complemented his work at life’s university.  My classes are the kind that if you looked at my “transcript”, you’d wonder why I ever chose to invest myself in things that had nothing to do with my “major”.  I may as well have registered for “Underwater Basket Weaving”.

A lady I’ve come to know who lives CLEAR across the country in California, recognized early on the poor choices I’d made in my “class schedule”.  Raegene recommended a good book about the type of forgiveness that is extended only after tough upper level courses in “life’s university”.  From there I found my attitude changing.  Quotes from my own mother came back to me as I read the book.  Quotes like, “You’re right.  LIFE ISN’T FAIR.  Shake it off!” Other quotes she has written on my heart and mind seemed to be intertwined with the words I read.  “You are not responsible for other’s actions.  You are only responsible for how you react to them.”  As a person of faith, I realized that God was hammering it “home” for me that I was not doing well when I received my “mid-terms”.  It’s not that I had even signed up for the wrong classes.  I was simply studying poorly, and failing to take “good notes” in class.

A Forced “Minor” in Hearing Loss

Sometimes we are forced to take “classes” that we have no interest in, yet need in order to graduate.  We can go belly-ache to the “Dean” if we want to, but in the end these courses are needed to complete our degree.  No one chooses to “minor” in hearing loss.  I think this avenue of “study” especially takes those by surprise who find themselves in the classes later in life.  Whether the hearing loss is sudden, or progressive… one never deliberately signs up for classes where the extra class fees include hearing aids, cochlear implants, Dry ‘n Store devices, and batteries by the truckload!

When I found myself in “hearing loss classes”, I immediately looked for tutors.  All tutors are not created equal.

The first day of class your professor may discuss “why” for about 10 minutes.  It’s all the time they have for this topic, as there is very little information to support it.  Yet students “talk it to death”.  When the professor would like to proceed with the lecture series, many students choose to dissect, discuss, and write term papers about “why”.  Some are lucky to have mentors who force them to move on to the next important chapters in the text.  These students have tenured professors who realize the important task of “moving on” and learning “life skills” instead of allowing stagnate thinking.  Others who aren’t so lucky, end up spending the majority of their classroom time arguing and trying to defend and debate a topic that doesn’t matter.  The professor may be apathetic as they will “get paid anyway”.  I long to tell people new to hearing loss to drop the class as quickly as possible.  Enroll in a class that moves on from the “why” to more important topics by the 2nd day of lecture.

Hearing loss, like most acquired disabilities, is not a chosen study.  Yet sometimes a person ends up with enough credit hours that they discover they have inadvertently minored in it!  The wonderful thing about this minor, is that all students can become substitute teachers if they choose too.  When I stopped looking at my course load, and instead sought ways to teach others what I have learned, my attitude about my “minor” began to change.  If I can help tutor ONE person with hearing loss, it will be worth the late nights I’ve spent cramming for exams, and tuition dollars I’ve thrown at “Hearing Loss”.  Because I had a series of good tutors myself, I quickly went on from the “why” to chapter two… “What now?”

I’ve met some people in the seventeen years I’ve lived with hearing loss, who have made a “major” out of hearing loss.  It was never meant to be a “major”. Life is much more than “hearing loss”.  However, I have met some people who have a Ph.D. in hearing loss.  Don’t get me wrong!  Hearing loss can shape who we are, teach us life skills, develop attitudes and mold our character.  It can have a profound effect on our studies in “life”.  But I am not defined by my hearing loss.  Hearing loss has simply brought out unique characteristics that would have never been developed had I not experienced it.  Life is never about a disability.  Life is about our ABILITIES.  I can’t hear well, but you should see what I CAN do!  And I can only do it because I’ve learned to live with the uniqueness of my own personal hearing loss history.

What about you?  Have there been unique trials and triumphs that have steered your coursework towards a special kind of “you”? Are you searching for “teachable moments” in your “studies”?  Are you “teaching” with your own life? I don’t know about you, but I want to graduate with distinction!

Denise Portis

© 2008 Hearing Loss Journal

True Belongings

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There is very little in our lives that we can control. We can make plans and be incredibly organized. In the end, however, this only guarantees the likelihood that we will be prepared for things we’ve predetermined may or may not happen. Planning does not illuminate nor prepare us for things that are impossible to imagine. Robert Burns wrote “To a Mouse”, from which we know the familiar line, “The best-laid plans of mice and men often go awry“.

We do not plan nor prepare for accidents, illnesses, or disabilities. We don’t plan for things to go “awry”. Even when trying to prepare for confrontation with an individual, we cannot fully prepare for every scenario as we cannot accurately anticipate how someone may respond. We do not plan to “get fired from a job we love”, and we do not plan to lose a parent in death, or a child to poor decisions and sin. (I do not plan in advance for Chloe to drop a wet, slobbery duck in the middle of my keyboard attempting to get me to play with her on this wet, rainy day! Play breaks are important to my intelligent assistance dog! If I’m at home working all day, she needs some form of stimulation. I embrace play breaks with wet, slobbery ducks with… umm… enthusiasm?)

I’m a “planner” and someone who happens to be “big on details”. It means that I have developed great organizational skills, having honed some God-given talents to the point that I basically drive my entire family crazy. Someone who has great organizational skills often struggles with control issues as well. I can openly admit that I have “control issues”. I don’t like surprises. Heaven help the person that ever throws a “surprise party” for me. I don’t like them. I’m a planner, and one can’t plan for surprises. Planning for things, and preparing for activities are important to me. The one thing that can suck the air out of my lungs and leave me struggling for breath is a surprise. Have I mentioned yet that I hate surprises?

I never planned to have a hearing loss. I didn’t sit down at the age of twenty-five with a babe on each knee and daydream about being deaf. “I think… in ten years I’ll lose all of my hearing and rely solely on advanced technologies in order to hear and communicate!” We don’t ever plan for loss of any kind. Sure! We all know we WILL experience loss. It’s not a question of “if” we will, rather “when” we will. All types of losses, although expected, cannot be fully anticipated. At some point in time we are going to be sitting in the dirt on our caboose wondering… “What just hit me?”

I am in the process of reading for the third time the book entitled: When the Game is Over It All Goes Back in the Box by John Ortberg. God has used this author in my life a great number of times, and I highly recommend his books. He quotes from Thich Nhat Hanh,’s “I am of the nature” in chapter six.

I am of the nature to grow old. There is no way to escape growing old.

I am of the nature to have ill health. There is no way to escape ill health.

I am of the nature to die. There is no way to escape death.

All that is dear to me and everyone I love are of the nature to change. There is no way to escape being separated from them.

My actions are my only true belongings. I cannot escape the consequences of my actions. My actions are the ground upon which I stand.

The only thing we will ever really own are our actions triggered by personal choices. I have to smile when I hear someone say, “I made an intelligent, informed choice!” We cannot ever truly be completely informed of all of the facts. Life is unkind in that regard. We can make decisions based on things we know, but what we do not know is far more likely to affect us. What we fail to anticipate tends to be the driving force behind change. Who I am today was shaped by what I was not prepared for; I am the result of a Master’s plan and not my own. I am the consequence of my actions, which are my only true belongings.

I try to begin each day by waving a white flag of surrender. I do not have access to the Master Plan. I am not able to even peek over His shoulder to see what my day holds. But I do, however, have access to the “Master”. My daily surrender is to self… I do not have control over my life. But I can actively choose to trust the “Master” and His plan for me. (One of my earliest posts was about having a blueprint for my life).

It gives me a great deal of satisfaction to know I have true belongings. I own my choices and am responsible for my actions. To find true peace, we must trust the Master to the “plan”.

At the request of my husband, I watched the movie “Master and Commander”, starring Russel Crowe. He had to twist my arm to see it as “war films” are not what I normally choose to watch in order to unwind! I actually learned a lot from the movie, but likely not the historical war highlights my husband had hoped. One particularly “educating” moment was when Captain Jack Aubrey, said, “England is under threat of invasion, and though we be on the far side of the world, this ship is our home. This ship *is* England.“

I had one of those incredible moments in time where everything about my life sort of “snapped” into focus. My testimony is a reflection of my Savior… my Master. It gives me great comfort to know that Heaven – “on the far side of the world” – is my Home. But for now, this life… this “ship” is my home. I live each day faced with decisions about how I will live with my disability. Reacting” is subconscious, but it births the conscious decision to “act”. Those actions are my true belongings.

We all have true belongings. Those of us who have “control issues”, need to learn to relinquish our “plan” and focus on our actions TODAY.

Denise Portis
©2008 Hearing Loss Diary

Sometimes? Sometimes it hurts…

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I like to think that I approach life with a really wonderful attitude. One of the biggest reasons that I am able to do so, is that I am really so incredibly blessed! I have the absolute greatest family, a wonderful husband, an assistance dog who loves me in the way God created dogs to love people (unconditionally), a super church, etc. Even my disability is one in which I can “handle” most days, and have been blessed by the friendships of others who really have a bigger burden to bear in their own disabilities.

Some people hate the word “disability”, as it lends one towards thinking they are NOT able – hence “dis” abled. I do like to focus on what I can do, instead of those things I cannot. However, I try very hard to balance that with reality. There ARE things I cannot do as a result of my disability. I think when one says that certain physical challenges (or emotional or mental) do not affect our everyday lives, one is really embracing a state of denial. I think we have to be honest with ourselves. It is only in this way we can then go out and be honest with others. I sit in my house alone as I write this, as my family has gone to participate in RESPITE… a ministry of our church. It is a ministry I cannot participate in, as I cannot allow my own deafness and balance problems place a child with disabilities in danger. I don’t care if I tumble down the stairs, or fail to hear something that ends up hurting me. I do care should I place another in danger. I accept that my disability will not allow me to do some things… things like RESPITE.

“Honestly”? (Grin), I think Christians make a mistake when they choose to go around acting as if life is always good all the time. GOD IS GOOD ALL THE TIME, but sometimes? Life isn’t! Sometimes? Sometimes it hurts…

Oswald Chambers wrote in My Utmost for His Highest, “A river is victoriously persistent, it overcomes all barriers. For awhile it goes steadily on its course, then it comes to an obstacle. For awhile it is balked, but it soon makes a pathway round the obstacle. You can see God using some lives, but into your life an obstacle has come and you do not seem to be of any use. Keep paying attention to the Source, and God will either take you round (it) or remove it. Never get your eyes on the obstacle or on the difficulty.”

I really do try to live that way. I consider myself a persistent little brat! I’ve had a few barriers disguised as boulders thrown into the course of my river! Sometimes, that boulder has acted like a dam. The water rising around me made me feel defeated and useless. There were times I wanted to stay in that stagnate pool so that I didn’t have to continue my journey down the riverbed. But after lessons learned, and a new desire to persevere, the “water” broke over the top of that barrier. And golly! The waterfall created after a necessary period of “standing water” was magnificent! Even in my deafness I could hear the roar of newfound power released, as I heard it from my heart! I know that God must have looked down and saw the water finally cascade over that barrier and thought, “Ah! Now that is why I created her! Look at her go now!”

My deafness has brought me a unique and valuable group of peers, many of whom have become very close friends. My deafness has definitely coerced me closer to my God; sometimes with a gentle push and other times with a giant shove. My deafness has helped me to really “listen” with other senses, as I’ve learned to see emotions play across people’s faces more clearly. People do not realize that their emotions can many times echo off of them like waves. These emotions of tension, happiness, sadness or anger, can almost knock a person over if they are really listening with something other than ears.

It reminds me of when I stood in the Atlantic ocean about 15 years ago. My family I were staying in a condo with my father-in-law on the Outer Banks of North Carolina. I stood in about 18 inches of salt water. Tears of shock poured down my face as I had been “sucker punched” with the knowledge that I could not hear the ocean. I could feel it, but I could not hear it. I grew up in Colorado – a completely landlocked state for those of you with geographical “issues”. (smile) So my very first time to stand in the ocean, trying to hear what I no longer had the hearing to do, wounded me deeply. (Now that I have a cochlear implant I have to get my ears to the ocean… well, the rest of me too! I’m fairly certain Maryland borders the ocean!) That week I did, however, learn how the ocean feels. Even in 18 inches of water, the current could be felt. My toddlers played around me in the surf and would squeal and run when they heard a big wave come crashing towards the shore. I soon learned that what I couldn’t hear, I could feel… and rarely was caught unaware by an incoming whitecap!

I think people with hearing loss can learn to hear better than those with normal hearing… if only we determine to do so.

But you know? Just when I think I’ve got a “handle” on my hearing loss and balance issues, something happens to remind me that hearing loss can still hurt. Sometimes? Sometimes it hurts…

I slammed the door of our van on my son’s hand yesterday. It was only by seeing my daughter’s horrified expression as she faced me and saw the commotion outside my door that I even knew it had happened. My first response was, “Why didn’t you holler?” Both assured me that everyone within a square mile DID hear him holler. Being able to hear, wouldn’t have meant his hand would not have been “in the wrong place at the wrong time”, but I certainly would have opened my door quicker had I heard him!

I’ve also learned that even though I tend to “read someone’s emotions well”, if that person decides to deliberately hide their feelings then I am truly “deaf”. As a mother, I find myself tagging along behind a child who is hurting, trying desperately to sense what is wrong. I feel like Sherlock Holmes sometimes, trying to deduce what might be the problem from analyzing evidence that is clear… about a problem that is NOT. If my children need their “space” and choose to not discuss certain things, it is their choice. I can sense a problem, but not be able to identify it. It can be rather annoying for a mother to shadow your every step and try to find out what is wrong! My children are growing up, and needing me less. My brain knows that, but my heart refuses to let go just yet.

I worry about how I’ll know if something is wrong, when they eventually move out… get married… and have families of their own. If I’m not within arms reach, how can I feel that something is wrong… that something is hurting them? I know and trust that God will always be that “within arm’s reach” source of comfort. Knowing it, trusting it, and being able to truly come to terms with it is something else though!

I suppose that is why my “river” will always have barriers to work around. Sometimes those barriers are big things; things that cause my river to surge to a halt. Other times, those barriers are a series of small things. Ultimately, I must press on. My river has a course to run.

Phil. 3: 13(b)-14 “but this one thing I do, forgetting those things which are behind, and reaching forth unto those things which are before. I press toward the mark for the prize of the high calling of God in Christ Jesus. “

Denise Portis
©2008 Hearing Loss Diary

Preferences

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amish-country-lancaster-pa-october-2006-003.jpgMy daughter, Kyersten was my “picky one” as a toddler. Her diet consisted of a very short list of acceptable foods. She would eat hot dogs, Banquet Chicken Nuggets, Spaghetti’os and Kraft Macaroni and Cheese. I mention brand names in this “short list”, because it really did matter. The kid couldn’t read yet, but really did know whether or not what was placed before her was her “acceptable” food or not! I remember keeping a Kraft Macaroni & Cheese box out and buying the “cheaper stuff” just to test her taste buds. Much to my chagrin, the little tyke ate only a bite! She wouldn’t touch McDonald’s chicken nuggets, but would eat Banquet’s nuggets in a heartbeat! Was I ever glad she would chew a Flintstone’s vitamin once a day! Forget fruits and vegetables!

Thankfully… she grew out of that. I remember celebrating when she would finally eat pizza. Now she eats a great variety of foods, many of which actually happen to be good for you. (Imagine THAT!) The only food that remains a CONSTANT in her life? The only edible thing that has followed her through the terrible two’s, grade school and high school? CHOCOLATE.

In fact, she is so opposite of “picky” now, she comes up with her own concoctions that frankly only she will eat. Some of them are “scary sick” in my humble opinion. But she eats enough healthy things, I count my blessings and ignore the “strange” meals that sometimes grace her plate. Her favorite this year, was discovered by accident. She’s one of those “strange critters” that actually prefers instant potatoes to the “real thing”. She makes potatoes by “eyeballin’ it” (in that she never follows directions and just dumps a little of “this” and a little of “that”), and then adds cubed ham and gigantic chunks of cheddar cheese. I know I blanched in distaste the first time I saw it. It looked… it Looked… well, it LOOKED MONSTROUS! potatoes-004.jpg

As she rarely gets enough calcium, I don’t argue about the amount of cheddar cheese we go through each week. Thankfully, Costco saves me a little on this, and she is skinny as rail so I’m not worried.

Everyone in the family looks at her “creation” and says “no thank you”! (Aren’t we a polite little family?) Her preference is to eat this and OFTEN.

What she considers “yummy”, nutritional, and “worth the effort” is OK for Kyersten. I wouldn’t eat instant mashed potatoes, ham and cheddar cheese all mixed together. But hey! If she likes it… “make it yourself dear and ENJOY”. She is happy to do so.

I thought about how this often parallels people with hearing loss. One person with hearing loss may have a preference for a “label”, while others refused to be labeled at all. One person may welcome assistive devices and tools that make their hearing loss very visible. Others, however, may choose to “appear as normal as possible” and keep things like cochlear implants and hearing aids hidden and private. Sadly, I have witnessed more than one disagreement between people with hearing loss and their choice of “labels”, or their choice of acceptable tools to improve their situation. It seems we aren’t very respectful of other’s preferences.

LABELS

I consider myself an adult with a disability because I am late-deafened. I know plenty of culturally Deaf people and folks who became deaf later in life, who are deeply offended by the word “disabled”. I guess I don’t have a problem with that label because I don’t consider it a negative word. I was born hearing, and I no longer hear “normally”. I hear in a wonderful new way thanks to a cochlear implant, (New Freedom from Cochlear Americas) but I do not hear like I once did. I don’t sit around feeling sorry for myself, and yet I fully recognize that I do have a disability. I am “not ABLE” to hear like I once did. In my thinking, something that was “able”, is now “disabled”. I embrace the accessibility rights I am guaranteed under the American’s with Disabilities Act. I only ask my peers to be accepting of the fact that I’m OK with the label “disabled”, as it certainly does NOT mean that I am not very ABLE in other areas! I don’t judge others who choose not to identify with that word. My preference? I am a disabled American with an acquired disability.

Hearing Dogs

I am often asked, “Why a hearing dog?” They require training, supervision, attention and care. I carry a backpack now that is for “Chloe”. It contains her access documentation, as well as treats, baggies, towel, water bowl, and first aid kit. It reminds in in a weird sort of way, of the diaper bags I use to have to lug around for the kids when they were little. But it’s a burden I gladly carry as it was a choice I made and decision I acknowledged that… YES… the advantages of having a hearing dog far outweighed the disadvantages.

I have had some of my late-deafened peers ask me: “Why would you want to have something with you all the time that makes something invisible… VISIBLE.” I’m sure the fact that I wear BLING on my implant is another reason why I don’t mind my disability being visible. It is my preference to allow others to know that I require a little patience in communicating. I may not hear you if you are a cashier and you say, “I’m open over here!” But Chloe… my bling… allow a cashier to see that there is something different about me. I may need “waved over” to their open line. I’m OK with that. It’s my preference.

If you are late-deafened and only use ASL to communicate with others, and use an interpreter in order to communicate with oral Americans… I’m OK with that! That is your preference, and I respect it.

If you have a cochlear implant and/or hearing aids, but prefer for no one to know that you have a hearing loss… I’m OK with that too. It is your preference.

I suppose everyone… hearing and deaf alike… would get along better if we respected each other’s preferences.

I don’t have to eat instant potatoes, ham and cheddar cheese though!

Denise Portis
©2008 Hearing Loss Diary

Deaf/Blind for a Day?

Published on by hearingelmo3 Comments

usakeller2.jpg Helen Keller with President Dwight D. Eisenhower

A friend of mine named Bob MacPherson (owner and moderator bhNews, a listserve to which I belong) posted the following article: Helen Keller

I have no idea where he found this, but he’s always been incredibly gifted at digging up interesting tidbits that no one else seems to know about. Even people without disabilities or physical challenges appreciate Helen Keller and her life. I remember reading books about Ms. Keller when I was in grade school back in the 70’s.

In the last couple of weeks, one of my classes was “Deaf for a Day“. Due to a few very negative reactions from students and their families, as well the counter reactions from my family and online friends who were looking forward to the assignment’s conclusion, I decided to not discuss the assignment in class this year. I chose to have them write about it instead, and I really look forward to reading what they “learned”. (Hey! I’m wise enough to note my own emotional limitations by which to handle topics that are painful for me!)

I suppose since this is still on my mind a great deal due to everything that happened, Bob’s article on Helen Keller got me to thinkin’…

“Hey! I should remove my cochlear implant and hearing aid… wear a blindfold… and be Deaf/Blind for the day! After all I have several very dear friends who have this combination of challenges!”

Well my husband put a quick stop to this idea. He has numerous emergency room bills from falls I take when I have full use of my sight. He wasn’t about to allow me to take away yet another sense. stick-in-mud.jpg(He can be a real stick in the mud! Kidding) It didn’t seem to matter that it’s been a full 6 months since I’ve been to the ER for an accident due to my poor balance!

I did find myself longing to experience a deaf/blind day as two of my dear friends live this every day. (I posted about them recently here). It is my opinion that the best way to understand how another lives, is to “walk in their shoes”.

As I often do, I digress. Wasn’t it incredible that being deaf AND blind, Helen Keller still learned to speak so well that her enunciation was perfect? Not even someone talking with her on the telephone could tell she was deaf/blind by listening to her voice! Helen Keller learned to SING? It’s an incredible skill and testimony of hours of practice and work to speak well when deaf/blind. But to sing as well? (Honestly, my jaw dropped open when I read this!) I am only “late-deafened”, and was a member of different choirs in high school and college. Think you’ll ever hear me sing now? Think again. When I sing I use my hands now, not daring to trust that I may possibly actually sing in tune with my voice. I do sing around the house sometimes, but it’s usually when I’m hooked up to my Sennheiser TR 820 listening to iTunes. I’m fairly confident that I’m not singing in tune, judging by the winces from my family and Chloe!

Helen Keller is a great example… I suppose in many ways a hero to me. She is the author of several books. I think it’s time I re-read them.

Denise Portis
©2008 Hearing Loss Diary