But, Butt, Buttocks and Butte

Isn’t the English language crazy sometimes? Did you know that it is actually one of the hardest languages to learn? (Oxford Royal Academy, 2014). Since most who are reading this likely know and use English as their first language, that may come as a surprise to you. We bellyache about how difficult it is to learn Spanish, French, German, etc., because most of us were born into English speaking households. Yet, many scholars argue that English is quite difficult to learn.

Take homophones for example. “Butt” can mean to “be adjacent to” or it can be your hiney, your buttocks, your butt, your behind, your gluteus maximus, your CABOOSE. Talk about confusing! You have to look at words in context to figure out the meaning. Then… we have acceptable shortened versions of words. For example BUTT is an acceptable, widely used word in the place of BUTTOCKS. However, BUT is not short for BUTocks. As a matter of fact, that isn’t a word! Add an “e” to BUTT and it even changes the pronunciation of the word. Now it is BUTTE (pronounced \ˈbyüt\). However, you don’t ever add an “e” to BUT. The word BUTE is not a word (unless you mean the derivative of the medical word phenylbutazone). You just ran screaming from the room, didn’t you?

Get it Right

But ya know something? Sometimes we use words and think we know what they mean when we do not. It is my opinion, that those of us who live with disability, chronic illness, or invisible diagnosis, should know our own SELF very well. I have Meniere’s disease and am late-deafened. I sought to learn everything I could about both conditions. When I later developed extremity peripheral neuropathy, I learned all I could about this condition as well. However…

I cannot expect everyone I meet to be experts on what is wrong with ME.

Aren’t we guilty of that sometimes? Heck, even with our loved ones we really can expect too much from them. So we have to be careful about our expectations. If I tell a colleague that I’m late-deafened and they respond with, “Oh… OH! I know some sign language!” (and they start to slowly and painfully finger spell their name)… don’t have a COW. (Besides… that is just MESSY!) Not everyone knows that the vast majority of people with hearing loss are late-deafened and do not use ASL. Try gently educating instead.

I told a student who was walking down the hallway and then into an elevator with me, all the things Chloe does for me. She asked about my condition, so I tried to explain Meniere’s disease in layman’s terms. When we exited the elevator, she helpfully took my elbow, and said, “Here… let me help you“. I stopped (after making sure hound dog and my bags were on the right side of the closing elevator door) and dug in my heels. I looked at her in astonishment. I had just walked down a hallway with her, wheeling my bags behind me and juggling leash of faithful service dog not five minutes before! After helpfully disclosing and explaining Meniere’s disease now I’m incapable of walking on my own? Because I knew she meant well, I didn’t scream, spit, or throw a hissy fit (*pats self on back for rhyming so nicely right there*).

I said, “I can walk on my own. Chloe helps me“. She stared and then said, “But… But you are WOBBLING“.

I cheerfully retorted, “Yup. Welcome to my life!” and walked off.

Everyone’s an Expert!

Another problem you may encounter if you have a long-term or permanent diagnosis, is that helpful folks sometimes act “the expert”. I’ve tried to explain that I am late-deafened and hear again with a cochlear implant, only to be interrupted by the person exclaiming, “Oh yeah. I have to turn the volume up now that I’m in my 40’s!” (I’m like… whaaaaaa…?)

I told an employee of my favorite grocery store a little bit about Meniere’s disease. Chloe and I always meet him stocking bread in the same aisle almost every week. After hearing my brief explanation of Meniere’s, he said, “Oh yeah, I walk into things after I’ve been drinking even just one beer!” I stood there trying to determine if my brain heard what I thought it heard. Ever been taken by surprise before and your mouth just blurted out what you were thinking before you had a chance to filter it through your state-of-the-art “Maturity Meter”?

I said, “That’s the dumbest thing I have ever heard“. He stared and then stomped off. We only see the tail end of him leaving the bread aisle when we go to the store now.

All my buddies who are late-deafened joke about this response after telling someone that they are late-deafened: “Oh yeah, I have an aunt who is death“.

Rest in peace, auntie.

Cut ‘EM Some Slack

Just as our English language can be confusing, so can your explanations of who you are to others. Even invisible conditions such as mental illness are so misunderstood. Many folks who try to explain a mental illness diagnosis are then treated like:

1. Fragile porcelain that may break under pressure

2. They are suddenly contagious

3. They are more dangerous than Freddy Krueger

All we can do, is do our BEST. In the end, we need to work hard at trying to understand that others – even those who may care about us the most – may not completely understand your new normal. That’s OK. A healthy acceptance and ability to BE GOOD TO OURSELVES is not dependent on the understanding of others.

Denise Portis

©2014 Personal Hearing Loss Journal

Oxford Royale Academy (2014). Why is English so hard to learn? Retrieved on October 27, 2014, from http://www.oxford-royale.co.uk/articles/learning-english-hard.html

To Be Understood Means to Understand

Melissa and her family
Melissa and her family

On 7/23/12, Hearing Elmo welcomed Melissa Sisco, from Alabama as a first-time guest author. You can access that post HERE. Hearing Elmo warmly welcomes Melissa again with a TWO PART post about her own invisible illnesses. Melissa is the mother of two young daughters and was first diagnosed with Meniere’s Disease in 2007. Melissa also has asthma/allergies, a heart condition, weak bones, endometriosis, and diabetes Type II. Melissa admitted that “Meniere’s Disease has been the single most challenging medical diagnosis I have experienced in my 32 years”.

The hardest things we encounter in life can sometimes be the ones you expect and assume will be easy. I am learning to realign and reign in my own expectations/assumptions. When you have struggled with a progressive illness for over six years, say one like Meniere’s Disease that causes hearing loss and loss of balance, you assume your family will support you the entire way. You assume that they will take the time to read the literature, the pamphlets from the doctors or at least even use Google or WebMD. You expect that they will get the hint as you slow down while walking, because your world has begun to buckle and spin. You assume that they will take it in stride when an episode of vertigo strikes and can only be remedied by lying down –for hours sometimes. You assume they will understand that an impromptu dunk in the water will harm your health in multiple ways because you have holes in your ear drums and have to wear ear plugs when you risk getting wet. You expect those closest to you to understand your new world, but the reality is that they don’t. Not at first. You actually have to teach them, or paint the picture if you will. They are not any more adept at struggling with accommodating my illness than I am. It really isn’t fair to expect them to know what was also foreign to me a decade ago. Experience can be the harshest yet greatest teacher.

Recently, a family member commented, “God, you really are deaf!”    Apparently he had been speaking to my deaf ear for several minutes without my noticing, “testing” my “deafness.” I simply turned to him, so we were face to face (even ground for me), and said, “Yes, so if you want my attention, try my right ear or tap my arm or shoulder please.”  All while smiling a really tight painful smile. Now what I really wanted to say was closer to a negative word, followed by an expletive, and ending with Sherlock. But I digress.

I admit I am still in the resentful stage, I resent that I should have to be the one to teach others about my own illness and its effects on my life. I never aspired to be a teacher; I haven’t the patience of those saintly souls. For reasons beyond me God has placed me squarely in a position where sometimes I have to teach, to save my own sanity. It’s just awfully annoying to teach family and friends who I expected to learn a little on their own in the last few years. My disease is nothing new anymore. I’ve learned a lot of my “new normal” on my own, (although I’ve been blessed to have great advice from those who’ve already invented this wheel –ahem Denise, Gayle, Shanna) but I do get downright angry when I have to teach someone something that should be obvious – at least in my opinion. I haven’t been wearing an absurdly expensive hearing aid in my left ear for 4 years just for kicks and grins. As more of my conversational frequency in my good ear wanes I have found that small talk is just no longer my cup of tea. I still avoid public situations in general. I have learned a distinct dislike of restaurants, malls, arenas and movie theaters. I am working on that, but I am a country girl at heart anyway. My country is just a bit quieter than it used to be, which is rather nice sometimes.

I have also found that there is finally a language I am really struggling to learn.  It’s called American Sign Language.  The only one I really need to know, and it makes Hebrew look like a piece of cake. (I would say Greek, but I can actually read that!) I’m quite certain that I appear as if I am under the influence of some sort of psychoactive drug when I’m trying to sign. The nuances of hand gestures completely elude me in a way that centuries-old grammatical rules never did. I can’t even profess to be able to understand it well, either. I get so focused on trying to comprehend one particular gesture/word I miss the next seven and am therefore totally lost. Like missing the pinnacle episode of your favorite TV show and trying to tune in to the next one and catch up – it just ain’t happennin’. I haven’t given up, but gosh is it hard. Bill is a great guy, but you can only make him repeat a phrase so many times before you start having weird animatronic/you-tube nightmares. (Thank the Lord, and Bill, for Lifeprint.)

I have recently also begun to despise the words disability and handicap with the exception of their necessary legal presence. I really just don’t see myself that way. I still do a number of things on my own; to include working, driving, doing basic household chores, etc. Although I despise it, I can grocery shop on my own, most of the time. I just can’t reach for anything on the top shelf, or on the bottom shelf, without relying on my cane or a sturdy wall or post. Sometimes it’s just easier asking for someone’s help. NOTE: Do not rely on shopping carts (that’s buggies for us southerners) for balancing because they have wheels. Really bad idea. Trust me.

I am able to be much more up front with people about my invisible “handicap.” I can flat out tell a stranger that I am deaf/hard of hearing, I need to see their face to understand them or I will ask them to type/write out something complex.  Most of the time this helps, and it is only occasionally that I encounter special people who begin to mimic Dr. Seuss using a bullhorn. Unfortunately, rhyming and loudness are lost on me. And it really annoys my co-workers or whoever else happens to be with me at the time. Sometimes I wish my hearing aid had a neon flashing light that proclaims “Deaf lady coming, repeat, deaf lady coming,” simply so I can save my breath. Sometimes I am saved by the Grace of God in the form of my own eldest daughter. She missed out on my shyness gene and takes the world by storm. She is quite eloquent when I see her shout at the top of her little six year old lungs, “My Mommy is deaf! Don’t you get it?”  All while sighing, knitting those eyebrows, putting her hand on her hip, and glaring at the perceived offender.  (Yes we are working on the politeness and manners thing- but it is easier said than done.)

A lady, let’s call her an acquaintance, I run into sometimes at work, asked me, “What is your cane for? I notice that some days you have it and some days you don’t.”  Another unexpected and unwanted teaching explanation. I replied to her that I have a balance disorder, some days I need it, and some days I don’t. Though you may not always see the cane it is usually nearby, just in case my power steering fails again without warning. She smiled at me with that look of “Bless your heart,” which forces me to fight the urge to strike her with said cane. I despise pity. I don’t want pity. I just want –a little bit— of understanding.

And I have to understand that not everyone else can see my illness, even if a person has known me for thirty plus years. One of my mandatory responsibilities now is to help others understand me as I learn myself. I have to constantly remind myself that, though my illness is invisible, dealing with it is truly a two way street. No one ever said it would be easy.

PART TWO: “It’s Not That Easy” will run Friday, July 19, 2013.

Thank you to Melissa Sisco!

Denise Portis

© 2013 Personal Hearing Loss Journal

We Are All Ambassadors

We are all ambassadors… of SOMETHING.

We are a living, breathing, advertisement of “something”. How you choose to live your life, and how that choice is reflected in your daily interactions with others is so important. We don’t realize when someone is watching, listening, or studying how we live. I think it is so important that people with invisible and visible disabilities live their lives in a way that reflects how their disability doesn’t overshadow their abilities. I suppose being a mother I have always been cognizant of “who is watching”. But now that my kids are grown and in college, they rarely study mom and her life anymore. Others are watching, however.

I shouldn’t be surprised when people stop me to ask questions or make an observation. In spite of having invisible disabilities (“hearing again” with a cochlear implant, and Meniere’s disease), I try to make them visible so that I’m not taken by surprise by not hearing something or getting bumped by “I’m in a hurry” people. I wear “bling” on my cochlear implant to draw attention to the fact that I hear differently than folks with normal hearing. I am with the constant companion of my hearing assistance dog, Chloe. Let’s face it. Nothing draws attention to “something is different about me” more quickly than entering places of business with a service dog. But in spite of my own mom’s occasional teasing of “you’re such a drama queen”, the biggest reason I am visible about who I am is because I’m not ashamed of it. I welcome questions and curious people. Hearing loss is so misunderstood. People seem to understand the culturally Deaf. People born deaf and then choose to embrace American Sign Language as their primary means of communication seem to be understood better than those who are adventitiously deaf and choose technology, surgery, speech reading, and spoken language.

Baby boomers were recently cited as a fast growing “hearing loss” crowd. (Story can be accessed here). Yet young people are part of a new (and alarming) growing crowd of individuals with hearing loss as the result of iPods, concerts, and environmental noises. (Story can be accessed here). I am proud of my cochlear implant and proud that I am now independent thanks to the assistance of my service dog. I don’t have to worry about what I am not hearing thanks to her alerts, and I know if I drop something she will be right there to pick it up for me. I like being an ambassador.

It’s not always easy. Sometimes I’m in a hurry and do not really want to stop to answer questions. That’s why I try to carry my card with me so that people can contact me through email. I also carry information about my cochlear implant and information about Fidos For Freedom. (We discussed how to handle questions when in a hurry at a recent client chat at Fidos For Freedom!) In this way, even when I am in a hurry I can still be a good ambassador for people with hearing loss and people with service dogs. Am I always a good ambassador?

No. No one is perfect. You are going to have “bad days”.

In spite of those bad days, however, I encourage you to remember that people watch you. Some are people who know about your invisible or visible disabilities. Others may be folks who know nothing about you. I love meeting other “great ambassadors”. If we ever “meet up” in public, don’t be surprised by a HIGH 5 from me!

Denise Portis

© 2011 Personal Hearing Loss Journal

Follow-up to “Community”

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

Very thankful for…

Making copies in the office
Making copies in the office

… copiers who “spit out” the copies high up instead of down low. See the look of disappointment on Chloe’s face? One of her favorite things to do is to “collect” the copies if they come out low.

School is starting! “Back to School Night” is tomorrow night and classes officially start 9/10! I only filled two classes this year so will only be teaching in the afternoon. As I’m in school myself, this will actually be a welcome break.

(pssst… hey Chloe? Ready to be my school bell again?)

Denise Portis

© 2009 Hearing Loss Journal

Reflections from Baby Mirrors

How do I keep an eye on Chloe?
How do I keep an eye on Chloe?

Baby Mirrors for Vans

I had only been matched with Chloe about a month, when I overheard another client from Fidos For Freedom say she had a “baby mirror” in her van. She, too, was late-deafened, and she explained that having the “baby mirror” attached to the rear-view mirror, added confidence about how her canine partner was doing “back there“.

I took a picture of Chloe at work yesterday next to the mirror. (It cracks me up that the Chloe BOBBLE-HEAD made it in the picture too… it’s a long story. I needed a quick way to identify MY silver van from everyone else’s!) Normally, Chloe is in the seat in the far back of the van. She has a special seatbelt, as well as a “sling” that zips her up in order to keep her from sliding on the floor should I make a sudden stop.

Because I have a hearing loss, I depend on that mirror to help me see Chloe. I suppose you could say I hear pretty good with my eyes. The peace of mind this little mirror has brought to me, was well worth the $4.99 that I paid for it at Wal-mart.

The reflection I view in that handy little mirror, gives me confidence and assurance about the well-being of my dog. I see her at a different angle, and can evaluate whether or not I need to speak to her or praise her.

Baby Mirrors for Life

I think too much. Perhaps it’s because I’m married to a Psychologist; or, it may be that as my oldest daughter is a Psychology major, I’m encouraged to THINK. I often “reflect” when I enter a really effective quiet time of thinking/evaluating my life. To reflect is to think seriously about and ponder the past. (This according to my own understanding of the word that is!) Confucius said, “By three methods we may learn wisdom: first, by reflection, which is noblest; second, by imitation, which is easiest; and third, by experience, which is most bitter.” I want to be noble.

I’ve discovered that it’s the “baby mirrors”of life… the angles, or viewpoints that are not a direct line of sight, that give me the best perspective of where I am and how I am functioning.

I suppose an obvious question we ask ourselves when we are evaluating “how are we doin’?” would be, “Am I happy?” However, happiness is not JOY, and the latter is what lasts… what gives us real peace.

FIERCE JOY

A friend of mine writes at a wonderful blog entitled: “The Grace and Wonder of God“. She recently wrote a post called, “Fierce Glory“. I’ll let you read the post, because frankly she said it much better than I could. Sometimes her posts end up on the back burner of my mind – just a simmerin’ away while I contemplate the truths she shared along side of the the reality of my own life.

There are times in my life where I feel desperately unhappy. Those times often occur during times that I put my eyes on “self” and have major PITY PARTIES that family and friends are encouraged to attend. Reality bites, and the “norm” is that I’m at that party all by myself.

I don’t think it’s wrong to acknowledge that sometimes we just aren’t happy. But happiness is a choice (it’s even the title of a great book!). If I need to feel unhappy for awhile, that’s OK. It’s not OK to LIVE THERE. Even in the midst of feeling unhappy, I can and should have joy.

Life can suck. (grin) My joy is not dependent on whether or not I am happy. It’s deeper than that. When God changed me, that inner part of me morphed into a confident child of the King. As a matter of fact, sometimes when I’m really feeling unhappy, what turns that around for me is simply being reminded of my joy. I am FIERCELY joyful.

Heck! The price Christ paid to make sure I had that peace… that assurance,  was too high to act as if it is temporary. The reminder of why I have TRUE joy, feels like a fire rising up within my very soul. My tearful, depressed, worry-bent spine is lifted and straightened with the power of that knowledge. Perhaps it’s a little bit like that saying, “I am WOMAN, hear me ROAR!”  I am HIS, I have JOY.

Lack of Joy is a Red Flag

I was recently contacted by someone through my blog. She is 33-years-old and has started to lose her hearing. Just as she makes adjustments in her life and “finds peace”, her hearing fluctuates and she’s back to “square one”. She admitted to me that the constant battle to “stay sane” is wearing her out. She has thought about how easy it would be to give up the fight. After probing a little bit, she admitted that this could mean “dropping out of life”, or even “taking her life”. (By the way, I have her permission to share this without using her name of course).

I’ve been there. Trying to constantly adapt can wear the starch out of any of us. An acquired disability that is in a constant state of “change” can make someone feel like “givin’ it up”.

In January of 2003, I was “there”. I had just lost more of my hearing and was having trouble communicating with even those closest to me. I was alone in my car headed to a meeting at my church. I remember thinking, “Wow. It would be so easy to just turn the wheel and drive off the interstate at 65 mph. It would be over quickly. No work involved. Those who might miss me would get over it quickly.” It scared me spitless that I found myself there. Perhaps that is why God continues to put people in my life who are also “there”. I “get them”, for I’ve lived that same roller coaster of thought.

It took the reminder of why I have JOY, that I began to “see past today”. If you do not have JOY, you may never find that true peace all of us yearn for in our lives. If you can STAY unhappy, and truly have no reason to exist – take my word for it that this is a RED flag.

Don’t Primp – Look!

Get a “baby mirror” for your life. Stop your primping. Don’t just look at what everyone else sees. Look past that. Check out the different angles that are “you”. Do you have joy? Are you unhappy too much? What do the answers to those questions tell you about your reflection?

I’ll close out this long-winded post with a great song one of my students signed in class recently. I love the words to the song. I’m not a huge Christian Aguilera fan, but the girl can SING.

“Reflection”

Look at me
You may think you see
Who I really am
But you’ll never know me
Every day
It’s as if I play a part
Now I see
If I wear a mask
I can fool the world
But I cannot fool my heart

Who is that girl I see
Staring straight back at me?
When will my reflection show
Who I am inside?

I am now
In a world where I
Have to hide my heart
And what I believe in
But somehow
I will show the world
What’s inside my heart
And be loved for who I am

Who is that girl I see
Staring straight back at me?
Why is my reflection
Someone I don’t know?
Must I pretend that I’m
Someone else for all time?
When will my reflection show
Who I am inside?

There’s a heart that must be
Free to fly
That burns with a need to know
The reason why

Why must we all conceal
What we think, how we feel?
Must there be a secret me
I’m forced to hide?
I won’t pretend that I’m
Someone else for all time
When will my reflection show
Who I am inside?
When will my reflection show
Who I am inside?

Denise Portis

© 2009 Hearing Loss Journal

Not Santa’s Helper… TEACHER’s Helper

kathleen

When my daughter, Kyersten, started college this Fall, I had a brief moment of panic.  For 4 years, she has volunteered to be a “teacher’s aide” for me at school during hours she didn’t have other classes.  It’s really wonderful when your daughter is your teacher’s aide.  I didn’t have to worry about how she’d feel if I “bossed her around”. Smile.

Faced with a school year with no teacher’s aide, I put out a plea to my older students.  “HELP“!

I was surprised that a good number of students eagerly stepped forward to try to fill Kyersten’s shoes.  I could only chose one, and so went with who hit “reply” first.  I’m glad it was Kathleen.  Kathleen (pictured above) is one of my third year American Sign Language students.  She has been SUCH a big help this year.  As soon as she enters my classroom, she is in full “aide” mode.  She doesn’t even ask what needs done, as she figured out after the first class that the camera had to be set up for “Hot Seat”, (* see below), and without being asked she passes out graded work and new lecture notes to each student.

Kathleen didn’t even balk when I made a tiny “big deal” about a Christmas gift I had purchase for her, and even wore the HAT.  (Is that “game” or what?)

Over the past 7 years, I have learned to ask for assistance with much more grace.  If you have a disability and are “grumpy” about the fact you can’t do all you “use to”, then asking for help can be next to impossible.  Someone who is uncomfortable about asking for help, is not even a good candidate for an assistance dog.  Even assistance dogs like praise and the occasional treat.

n1143036281_30221118_5859 Chloe wouldn’t wear the hat, but was glad to pose by the tree.  She loves to work, but there are some things she can’t do for me.  She can’t pick up heavy books that I drop, and I don’t allow her to pick up things that would be dangerous for her.  An example would be that I broke a Christmas bulb when helping to decorate the tree.  I had to intervene quickly, as she has been taught an automatic retrieve (as most things I drop I don’t hear).  I obviously didn’t want her to pick up broken glass.  I had to ask one of my teens to help me.

In the grocery store today, I knocked over a huge box of Cheerios in the cereal isle.  I didn’t want canine teeth marks in the box.  It was big enough that Chloe would have had to exert some pressure to get it up high enough for me to reach it.  Instead, I allowed a person standing there watching to assist as they were eager to do so.  It was pretty easy for me to transition that to my classroom.  I’ve learned to ask my students for “help” when I drop something too heavy for Chloe to pick up.  My students never mind hopping out of their seats to help.

A big online THANK YOU to my 2008-2009 teacher’s aide, Kathleen. See you “next year”!

* HOT SEAT:  One student each week sits in an “interpreter’s chair” and listens to a pre-taped selection from which they are to sign all that they can.  They then take it home and choose 60 seconds to translate, practice and perform the following week.

Denise Portis

© 2008 Hearing Loss Journal

“I’ll take ‘Dead Dogs Can’t’ for $600, Alec”

aacc3

(Alec) “For $600, the answer is… a video clip”:

(Denise) bites nails… “Umm, ‘What is ROLL MY OWN BLANKET’?”

(APPLAUSE)

Kyersten and I attended a play at her college yesterday afternoon.  She attends AACC and had one requirement for ‘Fine Arts Survey’, that she hasn’t been particularly excited about completing.  She had to attend one of the performing art productions and then write about it in a two-page paper.  Somehow, I managed to allow myself to be talked into going with her.  ‘Chalk it up’ to wanting to expose Chloe to new things, while attending something I use to enjoy tremendously – a musical.  “Guys and Dolls” was actually very good and I’m glad I attended.

We arrived early in order to find a good place to sit.  I was thankful I chose to do so, as our tickets had me sitting in an aisle where the floor sloped dramatically towards the stage.  Since I didn’t want Chloe to slide down through the audience during the show, I quickly found a manager and asked permission to change our seats to a section where the floor was level.

We settled into our seats and waited as the opening act was still about 10 minutes away.  A couple scooted around behind us and passed Chloe and I on the left.  The woman jumped a little bit, and slapped a hand to her chest as she looked down at Chloe.  Chloe looked up from a perfect down/stay (perfect because she had already drifted off – smile)

The woman exclaimed, “Oh my… I thought she was DEAD!”

I looked at her with rather bewildered astonishment, and said, “I’m sorry?  What?(I said this while signing “sorry”.  It’s hysterical to me that even when I hear, I start signing if I don’t understand.  Like that clears it up for me?)

She repeated, “Oh, I thought SHE WAS DEAD!

Her husband took her elbow and they moved on down the aisle. Perhaps he wanted to take her to a more private location to HAVE HER HEAD EXAMINED!  I looked over at Kyersten with my eyebrows raised, while Chloe laid her head back down and continued her imitation of a dead dog.  Kyersten has a flair for the understated “duh“.

“Yes,” she snorted rather unladylike, “we carried a dead dog in here and laid it down on a blanket!”  She said it under her breath, but loud enough for me to hear.  (What this lady said must have bothered Kyersten too, as she later whispered, “I think she was just so startled to see a dog, that she said the first thing that POPPED into her head!” She rationalizes well, don’t you think?)

We giggled about it for a few minutes.

———————

SIDE NOTE: I have a very weird sense of humor and my thought process is rather… erm… unique.  I just talked to a trainer at the “Ask the Trainer” booth for the 10th annual Stroll ‘n Roll, “how do you get your dog to fetch something new?”

Tracy B., talked to me about how to teach Chloe to fetch my cane.  (Santa is bringing me one for Christmas because I’ve been a ‘good little girl’)  You start with simply clicking and treating when she TOUCHES what you want her to notice.

So I pictured:

“Chloe… touch the silly lady…”  (Chloe gets up and pushes her nose on the hand of the lady who thought she was dead) Good touch Chloe! (Click… treat…)

Yeah.  Like I said… I have a strange sense of humor…

——————-

The performance was nicely done, and I was rather proud of how much I heard AND understood with the help of my cochlear implant.  As musicals have much of the story line put to “song”, it’s rather important to be able to not only hear the spoken lines, but the ones that are belted out to music as well.

Chloe did great too.  She slept through the whole thing with the exception of one scene where a police officer blew a whistle while chasing after the gangsters involved in “Crap games”.  She sat straight up and peered over the heads of those in front of us and watched the chase.  I threw my arms around her neck to talk to her quietly and to insure I could feel any bark getting ready to erupt from her chest.  Fidos For Freedom Inc., does such a great job preparing these dogs for new experiences even from the puppy stage! Chloe simply settled back down immediately after being given the assurance that “all is well”. (Plus the acknowledgment that she wasn’t invited to participate in the chase!)

Sometimes people with disabilities give up on even trying to participate in things they once enjoyed.  They don’t believe that they can make a difference.  They can easily get caught in a vicious cycle of thinking they ‘can’t do anything’ and therefore think ‘everyone should do things for them’.  Don’t get me wrong – there are things people cannot do if they have a hearing loss and have a cochlear implant.  I can’t deep-sea dive, nor hear really well in places with a tremendous amount of background noise.  I can’t fit in a size 4 dress either… although that may be a bit off-topic.

People who hear VERY well, have things they cannot do.  No one in my family has a hearing loss but me, yet they can’t deep-sea dive either!  (OK, I might should clarify that the fact of the matter is, no one in my family can swim!)

But every individual is capable of “something”.  Every person can make a difference.  You know that scary stairwell I talked about here?  In the very corner of the picture, you can see the edge of a wheelchair.  This wheelchair belongs to one of my students.  She was born with a disability that makes things like walking – – difficult.  Yet, she

comes to classes,

leaves her chair at the top of the stairwell,

with assistance goes down the steps,

and then cheerfully grabs her walker and heads to her classes in the basement area.

She doesn’t walk well… but to know her is to love her. She always smiles, and is graceful and beautiful in her performance of music in sign.

I’ve met a number of bloggers through the internet who also have disabilities.  Each and every one of them make a difference,

somewhere,

to someone.

… and you can too!

Denise Portis

© 2008 Hearing Loss Journal