Tag: hearing loss

Peek-a-Boo! I Hear You!

Published on by hearingelmo2 Comments

peekaboo

When my kids were little we played “Peek-a-Boo” just like other moms with little ones. However, I would say, “Peek-a-boo, I hear you!” and uncover my mouth as well as my eyes. Nursery workers very likely wondered who taught my kids such a simple game – incorrectly!

My readers tell me that one of their biggest frustrations is when hearing folks around them act as if steps they have taken to manage their symptoms = normalcy. Readers with MS have told me that family members behave as if they should now be symptom-free since they are on medications. People with hearing loss are frustrated when family members and friends communicate as if a cochlear implant or hearing aid means they now have normal hearing in all situations. A friend of mine who lives with chronic depression told me how aggravated she was when friends did not understand that she still deals with symptoms of clinical depression despite medications and therapy. I try to tell people that managing our symptoms does not cure the disease or eliminate a disability.

I hear SO WELL with my cochlear implant…

In quiet places

when I’m not distracted

when I’ve had plenty of rest.

At my annual mapping appointment each year, my audiologist continues to say I’m hearing super well! But there are environments in the “real world” where I don’t hear as well as I do in the sound proof booth or in her office. Because of this, my family have learned that despite how well I’m hearing, I need to still see their faces in most “real world” situations. Yes. I get a thrill when I am able to easily talk to them from the other room. But the water isn’t running in the sink, the dishwasher is finished with its cycle, and the television isn’t on as they speak from the distant living room.

Ever once in awhile I reach up to gently move a hand or turn a face. They sheepishly say, “Sorry” and continue what they were saying – now fully facing me. I can’t do this with people I don’t know well, however. How important is seeing speech to understanding and hearing well?

Seeing Clear Speech

We all know a mumbler. Even people with normal hearing ask them to repeat. We all know someone with a heavy, “Duck Dynasty” kind of beard. We all know someone who shyly covers their mouth with their hand when they are laughing and talking.

In a study by Cassie et al., (2005), adults with hearing loss scored the same as those with normal hearing after the speaker was given instruction to face the other person and speak clearly (not loudly). Volume doesn’t help by the way… it only distorts speech. Hard to remember when a friend or loved one with hearing loss says, “huh?” You default to yelling! 🙂

Another study by Reed and Delhorne (2009) showed similar “near normal” results in adults with profound hearing loss when other conditions such as clear, visible speech was included in even noisy environments! (These folks were also aided or had cochlear implants). There are simply too many studies to cite that show how important visible, clear speech is to children who have hearing loss and are learning language.

Bottom line? People with hearing loss hear better if they can see your face. I’m not saying shave your beard (trimming it would be nice, however). Even if the person with hearing loss seems to hear you really well in a quiet room and actually looks away from you while communicating, when other people start filing into the room for the meeting they may need to see your face when you speak to hear well.

As to other kinds of chronic illnesses and invisible disabilities? Please reach out and celebrate the GOOD DAYS with the person you know who lives day-to-day with a diagnosis that is permanent. Your own circumstances could change and you find yourself living with a similar condition.

Denise Portis

© 2013 Personal Hearing Loss Journal

Caissie, R., Campbell, M., Frenette, W., Scott, L., Howell, I., & Roy, A. (2005). Clear speech for adults with a hearing loss: does intervention with communication partners make a difference?. Journal Of The American Academy Of Audiology, 16(3), 157-171.

Reed, C. M., & Delhorne, L. A. (2006). A Study of the Combined Use of a Hearing Aid and Tactual Aid in an Adult with Profound Hearing Loss. Volta Review, 106(2), 171-193.

You’re So Vain…

Published on by hearingelmo8 Comments

chloe hug

I love my local grocery store. Not so much that I was pleased I had to go twice this week after forgetting a few items, but the aisles are spacious, the employees know me (and Chloe) by name, and I save a lot of money in both sale items and even gas points. My unexpected impromptu second visit this week was disastrous, at least from an emotional standpoint. I came down the aisle looking for those elusive cotton balls that I failed to remember on my first trip and met a lady only slightly older than me with two canes. We stopped to chat for a minute and thought I had met another who understood when she surprised me by saying, “I just couldn’t work with a dog. It seems so vain because so much attention is brought on by being with one“.

I could feel the heat creep up in my face and I blinked back tears as I stuttered out, “Well different strokes for different folks I suppose“. (I’m always so proud of how eloquent I am in a pinch *rolls eyes*).

I really had very little left to say so quickly cut it short and moved on to find those STUPID cotton balls. Because ya know? Now I was MAD after that initial “kick in the gut” feeling so I determined then and there those cotton balls were stupid. Made me feel better anyway.

My husband and I kid around about how vain Chloe is. Her biggest fault as a service dog is that she is too friendly. She’s a flirt. She gets gently reprimanded on days my balance is really off if I put her in a sit/stay while talking, but then she wags and flirts and stretches for a kiss. Heaven forbid someone actually switch their attention to HER! Then she is like, “You love me. Denise loves me. We all love me. I love me.” She’s so vain! (♫♪ Chloe, you probably think this post is about you! Don’t you? Don’t you?♪♫)

Many people with invisible disabilities are not in favor of mitigating their disabilities with a service dog because it DOES bring attention to you. As a matter of fact, I know of cases where folks drop out of training programs when they discover that this service dog will bring unwanted attention to them. That isn’t worth it in their opinion. And… that’s OK. I have Meniere’s disease (a balance disorder) and am hearing again with cochlear implant technology. I HAVE chosen to mitigate those invisible disabilities with a service dog. I wear bling-bling on my cochlear implant processor. On days my balance is REALLY bad, I use a bright purple, metallic cane. This works for ME. It doesn’t mean it will work for YOU.

could’ve should’ve would’ve

If I could’ve… if I shoud’ve.. or if I would’ve – I suppose if I hadn’t been on the verge of tears I would have told this woman:

“Do you know that before Chloe, I spent 20-30 minutes before work each day changing outfits trying to find one that hid all the bruises from my falls?”

“Do you know that when the elevator was temporarily out of service this week I didn’t have to cancel class because Chloe was able to counter-balance for me on the stairs?”

“Do you know this cochlear implant bling-bling helps people remember to face me when they speak if it is obvious I’m not hearing well?”

“Do you know all these patches and certification tags on Chloe’s vest legitimize her role as a service dog so that I have less access issues?”

“Do you know it takes me 45 minutes to get groceries each week now because Chloe picks up the things I accidentally drop compared to the 2 1/2 hour trips I use to have?”

“Do you know I never have to ask a stranger to pick up something for me now?”

“Do you know I’m working again because I don’t have to worry about putting students out to pick up pens, erasers, markers, or papers for me in the classroom?”

“Do you know I never have to worry about missing a phone call now?”

“Do you know I have the sweetest, “kiss me awake” alarm clock in the whole, wide world?”

“DO YOU KNOW I THINK YOU NEED A DOG BECAUSE YOU OBVIOUSLY DON’T HAVE ENOUGH LOVE IN YOUR LIFE?”

Ok… maybe that last one is unnecessary.

But the reality?

weather vane

People with invisible disabilities or chronic illness are more likely to deal with VANES instead of vanity each and every day. We have things we pay attention to so that we stay SAFE, red flags that remind us we are pushing our limits. Boundaries in place to keep us from over-doing things. I know my body better than anyone… even my doctors. This past week we had torrential rains on Thursday. On Wednesday, I was in “full disability regalia“. Chloe, cane, and fresh batteries in the “ears” and still I wobbled and fumbled my way through the day because there was a system coming into our area! A student said, “Wow your balance is really off today!”

I replied, “Yes! I’m a human barometer and much more accurate than the Weather Channel!”

A thoughtful pause and then, “Is there an app for that?” (snicker… I love my students).

Like a weather vane that helps farmers or meteorologists know which way the wind is blowing, people with disabilities have things in place that allow them to “take their pulse” each day to see how to safely navigate the world around them.

I’ve met a good number of people who have a service dog. I’ve never met anyone that I suspected of choosing to do so because they wanted the attention. And so please understand that the only one who is vain in my partnership is CHLOE.

♫ You’re so vain
You probably think this POST is about you
You’re so vain
I’ll bet you think this POST is about you
Don’t you? Don’t you? ♫

That’s OK. If Chloe’s weakness is that she is warm and friendly… I can live with that.

Denise Portis

© 2013 Personal Hearing Loss Journal

Permission to SLOSH

Published on by hearingelmo1 Comment

coffee spill

“I didn’t give you permission to slosh!”

Tuesday was NOT a great day. When it is rainy out and the barometer matches my internal “tilt-a-whirl” meter, I expect to have a bad day. When it is sunny though, I get aggravated when I’m having balance problems. Tuesday was a beautiful, sunny morning! I’m beginning to think that fatigue may have something to do with it because I know I didn’t sleep well Monday night.

I headed downstairs with my morning coffee, a whole day ahead of me to work from my basement, home office, only to slosh the coffee right out of my cup on the first step. I paused. I took another two steps down. More sloshed out. I paused. Aggravated I was going to have come back with cleaner, I took one more step. Coffee sloshed out. I…

(paused? WRONG)

I screamed. “I didn’t give you permission to slosh!”

Hound dog, (a.k.a. Chloe the wonder dog) sat at the bottom of the stairs safely out of the way and quirked an eyebrow at me. ♥♥ Talking to your coffee again, Denise? ♥♥

I’d do anything to be in CONTROL

One thing that I hear people with disabilities complain about is that they really would love to control their lives better. They may even make feeble attempts (or aggravating ones) to do so.

People with hearing loss may monopolize conversations. If they are the only one talking, they don’t have to deal with the frustrating inability to hear well.

A friend of mine with Meniere’s disease admitted to me that she actually acts cold and disinterested around people because she found it keeps them at a distance. If they approach and try to talk or even hug her hello, she is overwhelmed with vertigo and nausea.

I think it is natural to want to control our environment – even our lives to a certain degree. It can help us feel safe, even secure! But let’s face it… there is much in our lives that we cannot control.

We can eat right, not smoke, and exercise and still develop high blood pressure if it is in your genes. (Yes, it can improve your health and maybe delay the onset, but according to experts you are still at risk).

We can do our best to live a healthy lifestyle and still get cancer. We can be a safe driver, never going over the speed limit and still get in a car accident. We can avoid high-crime areas and still be the victim of a crime. There is much in life that is NOT in the scope of our control.

Control or Management?

I feel very frustrated when I’ve carefully watched the weather and still get caught away from home when it starts to rain. I didn’t give the skies permission to SLOSH! I can wear tennis shoes and have my head up and eyes open on a walk, and still stumble and trip over a crack in a sidewalk. I feel – erm – sloshy.

However, people with disabilities or invisible illness don’t have to give up hope of controlling their symptoms. You may not be able to control your life, but you can manage it. Symptoms cannot be controlled but they can be managed. One of my favorite psychologists is Albert Bandura. He was one of the first to define and promote self-efficacy. Bandura said that self-efficacy is, “the belief in one’s capabilities to organize and execute the courses of action required to manage prospective situations” (Bandura, p. 72, 1994). It makes us feel better to MANAGE our lives.

With my hearing loss, I can always make sure I carry extra batteries, clean and dry my cochlear implant and hearing aid, watch my service dog for cues, ask people to email instead of call, and request moving to a quieter area to have a face-to-face talk with someone. With Meniere’s, I can avoid sodium, limit caffeine, be prepared for bad weather, and keep my service dog’s vest in tip-top shape so she can help me. I’m “managing” my life as a person with disabilities. This gives me confidence and helps me feel less – SLOSHY.

You’ve done all you can

In spite of what I’ve learned, sometimes life still sloshes. You’ve done everything in your power to navigate life and “hope for the best and plan for the worst”. Life ends up sloshing anyway. I’ve wanted to put my coffee in a sippy cup before. Or one of those cups that can be used in a moving vehicle. You know… those “slosh-less” ones? But I want my coffee in a beautiful, ceramic mug. The kind I can wrap my hands around and feel the warmth while inhaling the pleasant and comforting aroma of slow-brewed coffee! The risk of “sloshing” is worth it.

I hope that even when you’ve done all you can to manage your life, you can pick yourself up and wipe off the sloshed coffee when life …

T I L T S.

Because it will… be ready for it! 🙂

Denise Portis

© 2013 Personal Hearing Loss Journal

Bandura, A. (1994). Self-efficacy. In V. S. Ramachaudran (Ed.), Encyclopedia of human behavior,4. New York: Academic Press, pp. 71-81.

How Should I Take That?

Published on by hearingelmo4 Comments
Ever scratch your head and wonder what the heck did they mean by that?
Ever scratch your head and wonder what the heck did they meant by that?

Did you know that hearing loss is considered a communication disorder? However, I know plenty of people with normal hearing that seem to have a communication disorder. People have trouble communicating. Either they have the right words to say but the receiver interprets them wrong, or the person has “foot in mouth disease”.

Even more tiresome is the fact that we communicate with far more than our mouths. Our facial expression, body language, even our “vibe” or “aura” communicates something to others. Peter Drucker said, “The most important thing in communication is hearing what isn’t said.” Isn’t this the truth? Yet, it is so difficult to master the ability to accurately “hear what isn’t being said”.

I am learning, slowly but surely, to use reflecting – or paraphrasing – when I don’t completely understand what someone said. Either I’m not hearing all the words, or I’m hearing them but they don’t jive with what I’m seeing (either from speech reading or facial expression and body language). Here are some examples:

1. “Oh wow, I can’t believe you’re Deaf! You speak so well!”

While my first, knee-jerk reaction may be to respond: “Oh wow, I can’t believe you said that. You don’t look stupid!”, I try to take in the whole situation. What prompted their statement? Does their facial expression show confusion or delighted discovery? Do they look embarrassed seconds after having diarrhea of the mouth? I try to respond positively.

(small laugh) “Well thank you – I think. Is it your understanding that deaf people cannot speak? You know, most people with hearing loss are not culturally Deaf. They speak perfectly and are adventitiously deaf.”

2. “Why do you need a service dog? You don’t look like anything is wrong with you!”

Again, I try not to wince as I explain, “I’m glad I don’t look like anything is wrong with me, but I have invisible disabilities. Standing here you wouldn’t notice that I fall flat on my face if I try to pick things up that I’ve dropped. You wouldn’t know I have a balance disorder and am deaf by looking at me”.

This usually prompts a repeated brain fart response of #1. Scroll up and re-read.

What if it isn’t “SAID” at all?

Many of us communicate through email, texting, or even FaceBook. It is a whole ‘nuther set of problems when you take something wrong that has been written. We don’t get the extra cues of facial expression or body language. We rely more heavily on context, or what we already know about the person.

I have actually responded to an email or other written communication by asking for clarification. I do indeed have TMI (too much information) disease, but I’m learning to keep it brief. “What did you mean by that?” and then copying the sentence or question that I took wrong or in a negative way. Many times the person re-reads what they wrote and are appalled at how it came across to you. They re-word it, apologize, and you gain a better understanding of what they really meant.

I live in a family of very sarcastic people. We also text a lot. I have a family that is super thankful for unlimited data plans because we’d be homeless if we had to pay for every text kind of gratitude. Despite how much we communicate this way while apart…

SIDE NOTE: I’ll just slap you up side the head if you ever text me when we are standing next to each other.

… sometimes I can’t accurately interpret the meaning when I can’t see their faces. I’ve learned in face-to-face communications that a certain twinkle in the eye, quirk of the lips, or tension from suppressed laughter, means that the family member is being sarcastic.

So I put the gun down.

In texting or email I don’t get that. My usual response?

“Ummm. what?” (Took me a long time to teach auto-correct that for ME, ummm, is really a word).

This allows my family member to repeat in a more direct way. “Say what you mean. Mean what you say” is morphed into “Text what you mean. Mean what you text”. Hey… it works for us!

Flat out… MISUNDERSTOOD

What happens when you are flat out misunderstood though? You meant well, but someone jumped to the wrong conclusion. They are mad. They took it wrong. You are shaking your head and silently recording into your thinker, “Note to self: Never try to help so-and-so again”. Before you hit SAVE, try giving the person a chance to understand what you REALLY meant by helping, or by what you said.

I have actually said something along the lines of:

I tried to help and only meant to encourage you. You took what I said wrong and that grieves me. I wish you could see my heart and know how I meant for this to be taken. I know you’re mad. I’d like to work this out. Let me know if we can discuss this further.

Nope. It isn’t a guarantee you will make things right. Offering that olive branch may mean that the person grabs it up and smacks you on the head with it. But hey! Who did the right thing? Pop an olive in your mouth, puff that chest out, and walk away with the kind of swagger only those who know they did their part in communicating WELL can do.

Sometimes I wish we were all dogs. I’d always know you meant well if your tail was wagging.

Denise Portis

© 2013 Personal Hearing Loss Journal

If I’ve Said it Once…

Published on by hearingelmo1 Comment

If I've said it once

The photo above was taken at the 2006 Walk4Hearing in Pennsylvania. It was completely coincidental that the Walk coordinators invited “Elmo” to interact with the children on site that day. Poor Elmo had no idea what hit him as I squealed and came flying across the parking lot to hug his neck! Children he was expecting. A grown woman – not so much. However, Elmo encapsulated my reemergence to the hearing world – the first toy I heard months following my cochlear implant activation. Elmo’s voice (emanating from the “Tickle-me-Elmo” toy I found on the shelves of a local store) was the first CHILDHOOD voice I recognized after having been tweaked and re-programmed numerous times following my activation. It was an epiphany for me. From that moment on, I knew I was going to be OK. I could hear again – and more importantly RECOGNIZE voices. So to find Elmo that beautiful August day, 7 years ago, was thrilling for me!

I stepped back to introduce myself and explain “why the exuberant hug“. Elmo interrupted me and mumbled something. I said something to the effect of “HUH?” (I’ve always been particularly good with words).

Elmo spoke up. “I CAN’T HEAR A THING INSIDE THIS SUIT“. I stared blankly at Elmo for a moment and then broke into peals of laughter. Elmo put his hands on his hips and looked as exasperated as a character was able while inside a red furry suit! I apologized. Profusely. Welcome to my world!

Welcome to My World

Something numerous readers email me about is their frustration at trying to explain what is working – or not working, to closest friends and family members. I was at an ADI (Assistance Dogs International) conference in Baltimore several years ago and just happened to be in the right place at the right time; relaxing against a wall in the hallway outside a conference room. Because of my position, I was in the perfect place to see and hear a lady take her husband by the elbow and drag him over to the side (near me) to fuss.

She whispered (loud enough for even ME to hear), “If I’ve said it once, I’ve said it a thousand times… I cannot climb over your bag when you put it in the aisle. Do you want me to fall in front of everyone?”

Readers constantly tell me how frustrated they are to have to repeat “how to’s” to those closest to them. Folks they don’t interact with much they expect to remind about what works well for them and what doesn’t work. However, people think that if they are closely acquainted with someone they don’t ever need to be reminded of what they can do to communicate better, or to assist if needed.

A close friend of mine and follower of Hearing Elmo has MS and deals with fatigue frequently as a result. She was out to eat with her mother recently at which point her body just shut down. Although they were not finished eating, she needed to leave and needed to do so right away. She stood up and wobbled, and ended up asking her mother for assistance. Her mother did so but was very quiet on the walk out to the car. It was there her mom let her exasperation get the best of her.

“I don’t understand how you can be out on the field to oversee your son’s soccer team one day, and need help to the car the next. I don’t know how things can turn on a dime like that with you!”

My friend was shocked – and grieved that her mom, someone as close to her as anyone, failed to recognize what to her was obvious. One cannot pick and choose when fatigue and weakness will hit. My friend thought she had explained this to her mom (and very likely HAD). But her mom needed a refresher course in how symptoms of MS manifest themselves to my friend – a unique individual.

When my frustrated friend relayed what happened to me I thought, “Well welcome to my world”. Don’t all of us who live with invisible illness, disability, or chronic conditions deal with the same thing? We have to repeat ourselves – often.

Learning to communicate

It cracks me up to be on the training floor at Fidos For Freedom, Inc. sometimes. Clients and volunteers are asked to “Meet and Greet”. I hate these exercises. I’m not gonna lie. You pair off in groups of 2 or 3 and shake hands, talk, and introduce yourself. This is very “real life”. It is something we do in the “real world”. But I have to tell you there are few things I dread more. For one thing, that wonderful “voice in my head” via the training room floor’s hearing loop system is gone. Instead there is a BUZZ of voices overlapping and rising in volume all around me. I struggle and ask for repeats the entire time – all the while making sure my dog is in a proper down/stay and not flirting with nearby dogs. If more than one of us in the group have hearing loss, we juggle for position trying to put everyone on our “best hearing side”. If you look around the room there are plenty of people with cocked heads leaning close, or others who have definitely invaded the personal space of someone in their group. I’ve been in groups of people who did not have hearing loss who ask, “Now remind me which is your good side?”

My balance disorder allows me to move just fine. Standing still? Not so much. I wobble when standing still. Especially when standing in a large room with low ceilings and ceiling fans. I’m not the only one to be wobbling though. I giggled out loud one day when I lost my balance and a fellow client who uses a walker reached out to steady me and almost lost her own balance. She giggled right back in response and said, “I forgot you can’t hold still!” It was comical actually. Yes, we may both have balance problems, but we could help each other. We learn to laugh at ourselves if needed. We learn to accept help. We learn to communicate what it is we need.

Significant others and Spouses are “Just PEOPLE”

Do you get frustrated with the people in your life who should “know better”? “If I’ve said it once, I’ve said it a thousand times…”!

Even those we love the most are NOT mind readers. They may know how best to communicate with you if you have hearing loss. They may know that certain things like weather or temperature influence how you feel. They may know how certain medications may help – or hinder you. If I’m honest with you, however, I will admit that even *I* do not know how I will feel from one day to the next. Maybe even from one HOUR to the next. It is my responsibility to communicate my needs. It is my responsibility to give gentle reminders. I am responsible to explain 1001 times if needed.

We need to remember that those who love us? They’re just people. They do the best they can – and 9 times out of 10? They are not being a butt-head on purpose. My own spouse doesn’t even blink when I ask him to take my elbow one day, and maneuver my way around a crowded mall without assistance the next. If I’m telling him once AGAIN that I cannot take a call in a crowded store and to please answer my phone? He simply says, “Oh yeah!” (He’s cute that way)

Someone recently belly-ached to me, “At what point do I assume they will never get it? When do I give up?” Who said anything about giving up? There is no “end game” here. It’s a journey.

Let’s all be willing to communicate – again – what we need.

Denise Portis

© 2013 Personal Hearing Loss Journal

Significant Challenges Can Actually Help – our KIDS!

Published on by hearingelmo2 Comments

The video above was made in 2007. I was implanted with a cochlear implant in 2005 and matched with a service dog in 2007.

My kids have never known me with perfect hearing as my hearing loss began when they were born.

I’ll let the video tell the story.

Your thoughts? Have your own challenges influenced those closest to you?

Denise Portis

© 2013 Personal Hearing Loss Journal

To Be Understood Means to Understand

Published on by hearingelmo4 Comments
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

I Don’t Like Music

Published on by hearingelmo7 Comments

cd player

“Music was my refuge. I could crawl into the space between the notes and curl my back to loneliness.”
― Maya Angelou

If you follow Hearing Elmo you know that I want the emphasis here to be on invisible disabilities or chronic illnesses. Yes, my own challenges include hearing loss and Meniere’s disease but I always try to draw parallels to what unites us as a community of differently abled people!

I normally do not let this much time go between posts. I like to have guest bloggers (interested? email me at denise.portis@gmail.com), and I prefer that new posts are uploaded every Monday. I was dismayed to see that so much time has passed since my last post. It isn’t because I haven’t had the urge or the time. I’ve actually been trying to figure out HOW I wanted to say something without really getting caustic.

Do you have some pet peeves? Come on…’fess up! We all do, don’t we? Because we are individuals, we all have preferences, dislikes, and pet peeves. We have special things that MOVE us. There are things that energize our spirits. Yet, there are things that depress us. And folks? There are things that TICK US OFF. Consider me ticked off.

Not a Great Example?

While prepping for this post, I was relieved when I realized the person I bawled out is not a reader of Hearing Elmo. Small chance they will discover I’m relaying what happened on here – but rest assured they were fully aware of my opinion when the conversation was finished!

“I can’t believe you don’t listen to music. As a cochlear implant advocate, that is not a very good example! ‘It is too much work, is a cop out’ ”

I was stunned.

Cochlear implant companies have been working hard to make sure that those who “hear again” can also enjoy music in addition to hearing voices, being able to use the phone, and most recently to be able to enjoy water sports without having to “remove your ears”.

But I don’t listen to music. I concentrate better in the car when I do not have the radio on to interfere with my attention. On really long commutes, I do listen to talk radio. However, I don’t listen to music. Not even 80’s music which include songs I listened to while in high school! Oh sure, I have all the gadgets, wires, and assistive technology to allow me to listen to music. I just don’t like the way it sounds. Just as I worked hard at hearing voices I couldn’t see (phones), and hearing voices amongst a ton of background noise, I could devote time to listening to music – but I don’t.

Ummm… How is this Relevant?

You are probably wondering where I’m going with this. You’re shaking your head “yes” at your computer screen, aren’t you?

We have to respect the individuality of other people.

I have chosen to make the invisible things about me – visible. It was my choice. I did these things to celebrate who I am and to unashamedly live MY life.

I use a metallic purple cane on my really bad balance days. I chose to mitigate my disabilities with a service dog. I chose a cochlear implant instead of “embracing my deafness”. After a great deal of research, I chose the Nucleus Freedom instead of another brand. I wear bling-bling and would wear blinking lights on my coil if I could figure out how to make a go of that. I am only unilateral and have chosen not to go bilateral. I chose to work hard at communicating effectively. Music was just not important to me.

Is music important to you? As a person with hearing loss did you work hard at being able to once again enjoy music? Are you a musician? Does music fuel your soul? I’m am so happy for you – really I am!

But we are not cookie-cutter versions of each other. What was necessary, important, and “worth it” to you may not be the same things another would choose to work towards.

There ARE a few types of music I listen to one of which is Christmas music during the holidays. However, can I get a shout out for DISNEY TUNES? For some reason, I have really connected to a number of songs from Walt Disney movies. These animated movies were the first I viewed with closed captions as I developed hearing loss when my kids were small. Once I was implanted with a cochlear implant in 2005, one of the first types of music I DID make sure I listened to were some of these Disney songs. One of my favorite was detailed here AND just so happens to go along with this post.

United we Stand, Divided we fall

So as people who have invisible disabilities or chronic illnesses, we should strive to be respectful of individual choices. It is hard enough to work and live among folks who don’t always get it. Surely in our own community of courageous people we can respect individual choice?

Don’t agree with everything someone says or does despite your sharing a diagnosis? Cut ’em some slack.

What are some things that have left you feeling peeved when judged by your peers?

Denise Portis

© 2013 Personal Hearing Loss Journal

I’m NOT Always Upbeat. Sometimes I’m just “BEAT”

Published on by hearingelmo7 Comments

depressed 1 (2)

I received an email this week from one of Hearing Elmo’s readers. With her permission, I wanted to use one of the questions she asked for this post.

“Love your blog, but sometimes it makes me depressed. You are always so upbeat, and it seems as if you have it all together. Don’t you ever have a bad day?”

I had to smile when I received this email, and I’ve had this question before in various venues. I have actually shared “the good, the BAD and the UGLY” before on Hearing Elmo, but I do try to keep it positive. In doing so, I also strive to keep it REAL.

Having said that, I have bad days. Believe me! As a matter of fact the summer months are often my worst. I don’t work as much – or like this summer, not at all. Too much time on my hands is not a good thing. I try to stay busy and I made sure I signed up for some classes. I’m busy applying to grad schools (again). I’m cleaning more (grin), and have some extra time for Fidos For Freedom, Inc. However, I get depressed. I have days I just feel BEAT.

i surrender

Did you know that it is perfectly normal for people with chronic illness or invisible (or visible) disability to get depressed? Everyone struggles with periods of depression. Life is hard. I use to wonder if people with physical challenges had a higher probability to be depressed compared to the population without those challenges. In my interactions with various populations, I couldn’t help but wonder if we are more prone to depression? Then I developed a passion for psychology, so I thought one day, “What do the experts say?”

After writing a number of papers on the topic and being forced to look up scholarly, peer-reviewed research, I found that people with disabilities CAN be more prone to depression. So if you have days you just want to surrender? Give up? Wave that white flag? You are NOT alone.

Bryan Kemp (2005) said, “Depression is one of the most common, if not the most common, secondary conditions associated with disability. When it is left untreated, depression can cause inordinate personal suffering, increased disability, additional health problems, and stress in others” (p. 234). I thought it was very interesting that although depression is not an uncommon diagnosis, in folks with disability it can actual make your disability WORSE. I have friends and fellow-bloggers whose disability actually IS depression. We cannot continue to pretend that a diagnosis of mental illness is not debilitating. It is a SERIOUS illness. However, depression can be and is often a comorbid diagnosis to people who live with chronic illness or invisible disabilities.

In one study, 71% of people with Meniere’s disease were also depressed (Coker, Coker, Jenkins, and Vincent (1989). For people who have hearing loss, “Several studies have shown that uncorrected hearing loss gives rise to poorer quality of life, related to isolation, reduced social activity, and a feeling of being excluded, leading to an increased prevalence of symptoms of depression” (Arlinger, 2003, p. 17). These stats are only for the two “major players” in my own life. People with Chronic Fatigue Syndrome, Fibromyalgia, Lyme disease, Multiple Sclerosis, Parkinson’s, Diabetes, vision loss, anxiety, and many OTHER conditions are often struggling with comorbid depression.

So are you having a tough time coping with your own physical or emotional challenges? Do you struggle with symptoms of depression in addition to your day-to-day challenges? You are not alone.

So please know that although I don’t often write about feeling depressed or anxious, although I do not post about what a “terrible, horrible, no good, very bad day” I am having, I do indeed have these kinds of days! I’ve struggled to get out of bed (despite my red-headed, well-trained alarm clock). I’ve cried myself to sleep. I have pushed people away in anger – embracing self-imposed isolation. I’ve yelled at God at how unfair it is. But in the end, I do strive to be upbeat. It isn’t always easy. There are times I feel like a big, Fat, LIAR. Yet, I work hard at having a positive attitude. I’ve learned that if I change the direction of my “thinker”, I will change the attitude of my “feeler”. It is really cognitive behavioral therapy in a nutshell! Laura King (2011) said, “… the emphasis is on reducing self-defeating thoughts, with its emphasis on changing behavior. An important aspect of cognitive-behavior therapy is self-efficacy” (p. 538).

Something that really helps me is working hard to reach out to others. I have a number of support groups that I meet with in person, others through venues like FaceBook, and still others in online forums. Knowing I’m not alone is very important to me. Being able to commiserate with others who truly understand is of great value. I encourage you to reach out to others. Even if you are unable to locate “in person” support groups, there are a number of ways to find this support online. We need each other.

Denise Portis

© 2013 Personal Hearing Loss Journal

Arlinger, S. (2003). Negative consequences of uncorrected hearing loss: A review. International Journal of Audiology 42(2), 17

Coker, N., Coker, R., Jenkins, H., Vicnent, K. (1989). Psychological profile of patients with Meniere’s disease. Archives Otolaryngoloy Head and Neck Surgery 115(11), 1355-1357. doi:10.1001/archotol.1989.01860350089021.

Kemp, B. (2005). Workshop on disability in America: A new look. Washington D.C.: The National Academies Press.

King, L. (2011). The Science of Psychology. (2nd ed). New York: McGraw-Hill Publishing.

 

There’s a Goldfish in Mine!

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Half empty, or half full? Well MINE has a goldfish in it.
Half empty, or half full? Well MINE has a goldfish in it.

I was in line at my local grocery store recently and overheard two women talking behind me. They were there to purchase their lunch evidently as they had salads and drinks only. Normally, I let people with just a few items go in front of me. For once, however, I was actually only there to pick up a couple of things I had forgotten in a previous trip. Besides… I was having too much fun eavesdropping.

Evidently one of the women had recently been dumped. Her friend and co-worker was trying to give her a pep talk using the old analogy of a “glass half full or glass half empty”. I continued to listen in, partly because I was thrilled I could do so <BIG GRIN> but also because I was really fascinated by the arguments she put forth about an issue that to her, was black and white. It was either a great thing you got dumped, or a really awful thing.

Lines were moving pretty quickly, so before I knew it I was headed out the door with my bag and faithful hound dog in heel. I continued to think about the analogy. The original intent was meant to convey, “Are you a pessimist or an optimist?” We all have relatively fixed personalities, but they can be adjusted. Cognitive behavioral psychology capitalizes on that truth to help people change negative thoughts and behaviors.

I really believe most of us do not respond to everything in a “half full” or “half empty” way, however. The more I thought about my own responses to life as it happens, I realized it certainly isn’t a “half full” or “half empty” option for me at least. My glass has a goldfish in it.

My Goldfish

I think folks who live with disability or chronic illness, cannot react to life in a concrete, optimistic or pessimistic way. For me, hearing again with a cochlear implant and navigating life with a balance disorder means that I react to life in a different way just because those two things are a part of who I am. I don’t just have a glass of water. Mine has a goldfish in it. I’ve learned how to take care of my goldfish. I wouldn’t be who I am without my goldfish.

I have some friends in a Meniere’s disease support group who have said that because their “glass is half full” (or half empty depending on their personality), things normal people deal with are just different for them. If they have a headache, are diagnosed with cancer, or lose someone close to them it is compounded by the fact they also live with an invisible or chronic illness. I get where they are coming from and understand what they are trying to say. They believe that experiencing normal life things (diagnosis, loss, etc) are different for them because they do so from a body that is already dealing with something else.

We all know each other pretty well in this group so when I bring psychology into it, they all roll their eyes at me. I truly believe that living with a chronic illness is all about perspective – but not in a “half full” or “half empty” kind of way. When I mentor someone, I try to help them get to a point of acceptance as soon as possible. Acceptance is not an attitude of “I give up. I’m not fighting anymore”. It is a recognition of the “new you” and learning to understand your new normal. That “normal” may even change if you have an illness that fluctuates or is a degenerative disease. For me, it was important to acknowledge this goldfish. I can’t change it and I don’t get a new glass. This is me… and I have a goldfish.

Just accepting that, has allowed me to be the best ME I can be. Psychologist Jennifer Kunst said, “The good news is that when relative changes can be made in one‘s basic approach to life, it makes a big difference. A modest change in your filter doesn’t change who you are at the fiber of your being. It helps you become a better version of yourself” (Kunst, 2012, para. 4).

For me, the hardest thing wasn’t that goldfish or learning how to take care of it. The tough thing was being around a whole lot of other people with only water in their glass.

“Sure, I’ll meet you up in the classroom, but I’m taking the elevator at the end of the hallway. See you in a few…”

“The dishwasher is running so I need you to come in here if you are going to ask me questions.”

“I hate to interrupt you, but I need to go up these stairs and I have to actually concentrate. Hold that thought…”

Family, friends at church, co-workers, and neighbors, are so accustomed to my goldfish they don’t really even see it anymore sloshing around in my glass. No one knows me better than my husband, Terry, I suppose. Yet, I even have to remind him that although I can talk to him in a restaurant that is almost empty without looking at him, I really need him to put his coffee cup down if the restaurant is full so that I can read his lips. It is my responsibility to feed my goldfish. Not his. I may have explained to him twenty different times that there are atmospheres I will hear “near normal”, and environments in which I’ll need his lips plastered to my forward microphone. However, it is my responsibility to communicate this to him.

We have very narrow staircases at home. On “good” days, I can jog up and down the stairs. Terry isn’t surprised anymore if I ask him to carry the laundry downstairs before he leaves, when I may have been “jogging” earlier. He isn’t shocked if I tell him to “go on up” at the end of the night, knowing I’m going to need to go up on all fours and take the time to do so. He knows I will communicate what I need. This goldfish is mine.

There is a terrific list of “acceptance rules” that the University of Washington put out. You can access it here. Two of my favorite “acceptance of the goldfish” quotes are:

Do not make people feel sorry for you or pity you. Get people to view you as an able person who is capable of anything within your reach if the doors of opportunity are open. (graduate student with a hearing impairment)

We should focus on the ABILITY in disability more than the DIS. If we can do that, then we are more apt to succeed. Also, know your limits. If you don’t know what you can or can’t do, how do you expect other people to know? Plan for success by using more of the cans than the can’ts. (college student with mobility impairments)

(University of Washington, 2013)

Don’t be aggravated about the goldfish. Honestly? Everyone has something in their glass besides water. If we were all just glasses of water, we’d all look alike. We are unique individuals. We all have something else in our glass. My opinion is that we accept that. I’m not this person that has a goldfish temporarily. The goldfish isn’t visiting and it isn’t something I can scoop out. This glass with a goldfish IS me. And I’m OK with that. I love what Karen Hall, Ph.D., said in her article “Radical Acceptance”. She said, “Radical acceptance is about accepting of life on life’s terms and not resisting what you cannot or choose not to change. Radical Acceptance is about saying yes to life, just as it is” (Hall, 2012, para. 1).

Denise Portis

© 2013 Personal Hearing Loss Journal

Hall, K. (2012). Radical Acceptance. Psychology Today. Retrieved June 12, 2013, from http://www.psychologytoday.com/blog/headshrinkers-guide-the-galaxy/201203/is-your-glass-half-empty-or-half-full

Kunst, J. (2013). Is your glass half empty, or half full? Psychology Today. Retrieved June 12, 2013, from http://www.psychologytoday.com/blog/pieces-mind/201207/radical-acceptance

University of Washington (2013). Mentor tip: Acceptance of disability. Retrieved on June 12, 2013, from http://www.washington.edu/doit/Mentor/mt_acceptance.html