Category: cochlear implants

Square Plates

Published on by hearingelmo2 Comments
Exactly what I want at Target!
Exactly what I want at Target!

Square plates. I WANT THEM.

Why are plates ROUND after all? Squares have such nice neat corners. It isn’t as if round plates hold more! Round plates are not any better at preventing food from escaping if you are an – erm – especially aggressive eater. Or, perhaps TWO-years-old!

I really want square plates. They are different. They accomplish the same purpose. Am I rebel? No, no… you see, my friends?

I’m a SQUARE. That’s right, you heard it first here at Hearing Elmo. (smile)

We May be the Same – But We’re NOT

I have met a lot of people with hearing loss and cochlear implants. We may all have hearing loss, but we are not the same. That is why our hearing aids and cochlear implants are programmed especially for our hearing health profile.

I have met many with Meniere’s disease. I may have the same diagnosis as you do of Meniere’s disease. That does not mean that we share the same triggers. It does not mean that what works to alleviate the severity of symptoms for YOU, will work the same for me.

Unfortunately, even though we may belong to the same community of people – those who live with some sort of invisible or chronic illness, those who are differently-abled, we forget that we are individuals. What works for one will not work as well for another.

There are three cochlear implant manufacturers. I love my cochlear implant. Neither I, nor my audiologist at Johns Hopkins, ever thought I would be hearing this well. My cochlear implant is not “better” than someone who chose another manufacturer, however. Consumers – the patients – have a responsibility to thoroughly investigate all the details about all of the brands available. We pick what we believe will work best for US.

Round plates and square plates do the same thing. They hold food. But some of us like round plates – and some of us are SQUARES.

It always grieves me when I see posts at various online support groups where one member bashes the ideas of another. Or perhaps they are insistent that everyone try their extremely low-salt diet (which happened on a Meniere’s group of which I am a member). It didn’t matter that several of us explained we had tried low sodium a number of times and had found it made little difference.

We need to respect other people’s choice to use round plates – or square ones. In the hearing loss community, our mantra should be “whatever works”. In groups that formed to support those living with Meniere’s disease, we should work on actually BEING supportive. If WE aren’t supportive of each other, how can we ever expect the community at large to be?

Are you a member of a support group for your own illness or disability? Encourage others to be supportive and open to new ideas. Everyone just might learn something! Regardless, we need the non-judgmental atmosphere of a friendly, empathetic community. Respect each other. Before you know it you just might start seeing :

by 10 Strawberry Street
by 10 Strawberry Street

… TRIANGLE dinner plates.

Denise Portis

© 2013 Personal Hearing Loss Journal

 

 

 

 

Overkill?

Published on by hearingelmo5 Comments
At the beach in Ocean City with cochlear implant, hearing aid, and hearing assistance dog
At the beach in Ocean City with cochlear implant, hearing aid, and hearing assistance dog

1. I’ve had people with cochlear implants before ask me why I don’t just use a cochlear implant. One (or two) works for them after all!

2. I’ve had people with hearing aids ask me why I choose to get a cochlear implant in my “worse” ear.

3. I’ve had folks with CI’s and HA’s ask me why I use assistive devices in the classroom if I am “hearing again” so well.

4. I’ve had people with cochlear implants ask me why I need a hearing assistance dog if I’m hearing so well now.

5. I’ve had people who were culturally Deaf ask me why I don’t just use ASL since I am proficient in the language.

6. I’ve had people who were late-deafened ask me why I do not just continue to speech read. Why embrace technology?

Overkill?

These are all legitimate questions. I will do my best to answer them.

1. I’ve had people with cochlear implants before ask me why I don’t just use a cochlear implant. One (or two) works for them after all!  Not everyone who qualifies for a cochlear implant can go bilateral. I have Meniere’s disease and I barely squeaked by in pre-surgical balance testing to be a unilateral candidate. I use a hearing aid in the opposite ear because – well, because my audiologist told me too! My audiograms and testing each year astonish my audiologist at Johns Hopkins. Who would have thought I could hear this well? However, the proof is clear. I gain an extra 3-7% when I use a hearing aid in my unimplanted ear.

2. I’ve had people with hearing aids ask me why I choose to get a cochlear implant in my “worse” ear. I chose to get a cochlear implant because with the best BTE hearing aids available, I could no longer hear well enough to carry on a normal conversation. I learned all I could about cochlear implants and took the “plunge” in April of 2005. I’ve never regretted it. A comparison of my audiograms can be found at this post: CLICK HERE.

3. I’ve had folks with CI’s and HA’s ask me why I use assistive devices in the classroom if I am “hearing again” so well.  I hear great in “most” indoor environments. I even hear outside fairly well if there is not a lot of competing noise. But let’s face it. Listening environments are not the same. Some rooms are huge with cathedral ceilings. Some have all hard surfaces. I use assistive devices because it helps to eliminate one of my greatest enemies. NOISE. Isn’t it funny that as a “hearing again” person, noise interferes with my hearing well? My favorite device as a teacher is my clipboard. You can read about it at this post: CLICK HERE.

4. I’ve had people with cochlear implants ask me why I need a hearing assistance dog if I’m hearing so well now.  This is probably the number one question I receive in person, from readers on Hearing Elmo, through FaceBook, and through email. My hearing assistance dog from Fidos For Freedom gives me something that my cochlear implant and hearing aid do not. Independence. When I trained to be matched with a service dog, I was not only learning the commands, but also learning to watch my dog – and to trust my dog. I needed that training! I am confident in knowing that if I do not hear something, my hearing assistance dog will let me know. This may mean becoming aware that a car is coming up behind me in the parking lot. It may mean that I will know before rounding the end cap, that there is a noisy family on the next aisle. I know if I drop things. I know if intercoms are giving announcements. I know about alarms going off. I know when people are saying “excuse me” so that they can get past, and much, much more. I feel safe. I feel confident. I am independent. I didn’t feel those same things when only utilizing a CI and HA. (Besides with my balance issues, Chloe has become just as necessary to me because of her balance work).

5. I’ve had people who were culturally Deaf ask me why I don’t just use ASL since I am proficient in the language. Bottom line? I am not culturally Deaf. I was not born with hearing loss. Everyone close to me has normal hearing. Don’t misunderstand. I love ASL and have been teaching the language for over twelve years. I actually rely on sign at home if I’ve taken my ears out (as well as speech reading). However, I was born into this world with ears that hear. It made sense (to me) that when I began losing my hearing that I fight to regain as much of that as I was able to do. I do not criticize those who embrace their deafness. I love the culturally Deaf and have learned how to advocate in a positive way from Deaf friends. But… I’m not Deaf. I am a person with hearing loss who is “hearing again”.

6. I’ve had people who were late-deafened ask me why I do not just continue to speech read. Why embrace technology? Speech reading (or lip reading) is not an exact science. Don’t believe me? Try it sometime. Get a friend or family member to voice some simple sentences with their volume “OFF”. Can you accurately pick up what they are saying?

According to the CDC (2012), a good speech reader will be accurate 4 to 5 words in a sentence of 12 or more words. I have news for you. 33-50% by the BEST, means they are not communicating well. Even for those who are terrific at understanding “in context”, will still be asking for repeats or clarification (or sit there “lost”). I still speech read some. It is only an additional tool to help me communicate at my best, however.

Use It All!

So. Is the way I’ve chosen to stay connected, to communicate, and to hear the world around me overkill? Perhaps to some it is. However, these choices have helped me to cope, to interact, and to be a confident “hearing again” adult responsible for my own communication. If you are a person with hearing loss, you have chosen your own path, too. I respect that! I am grateful to be living in an age where so many options are available to people with hearing loss. Decide how you want to engage the world around you – and then OWN IT.

Do you use additional things to hear at your very best? Please feel free to share those options by commenting on this post.

Happy hearing!

Denise Portis

© 2013 Personal Hearing Loss Journal

Center for Disease Control. (2012). Hearing loss in children: Learning language. Retrieved April 20, 2012, from http://www.cdc.gov/ncbddd/hearingloss/language.html

Reverse Discrimination

Published on by hearingelmo4 Comments
Kyersten and Chloe at the "Candle Barn" in Bird-in-Hand, PA
Kyersten and Chloe at the “Candle Barn” in Bird-in-Hand, PA

Discrimination. Pronounced, the word even “sounds” ugly. According to the United States E.E.O.C, discrimination can fall into the following cateogries: age, disability, equal pay/compensation, genetic information, national origin, pregnancy, race/color, religion, retaliation, sex, and sexual harassment (U.S. EEOC, 2013).

For those of us with any kind of disability, the Office of Civil Rights enforces Section 504 of the Rehabilitation Act of 1973, Section 408 of the Rehabilitation Act of 1973, and Title II of the Americans with Disabilities Act of 1990. As I mitigate my own disabilities with a service dog, I was thrilled to see the ADA clarify specifics for folks like myself (See ADA 2010 Revised Requirements).

One of the more troubling truths about discrimination, however, is how quickly the “tables can turn”. Those who are often discriminated against can very easily become those who discriminate. It sneaks up on you.

Teaching the Teacher

The photo above is of my daughter, age twenty-three, and taken at one of our favorite “day trip” areas. Bird-in-Hand, Pennsylvania, is a quaint little village in Lancaster county that makes you feel as if you’ve stepped back in time. Kyersten is a young adult now and I’m pleased we are friends. She has taught me many things through the years as she usually presents tough topics with the poise and thoughtfulness someone twice her age would do.

I always welcome one-on-one talks with her, but in early 2010 I initially was NOT pleased when she informed me that I was discriminatory towards people who had normal hearing.

I sputtered, “Wha…?”

Like she tends to do she began to systematically present the proof. “For one thing, when you are exasperated with a communication problem, you call us ‘hearing people’. Makes me feel like a different species!”

She continued her argument by explaining that I often forget that people without disabilities can be just as big a champion for folks with disabilities as the individual themselves. This may be especially true of those who care for someone with disabilities.

Later, a discussion with my husband had me really feeling sheepish about my own apparent hypocrisy. “It’s perfectly natural to seek out people who struggle with the same things you do, but when is the last time you befriended someone without disabilities? You have OTHER things in common with people. For example, your faith, your background, and your profession… all put you in specific environments where you can get to know people and enjoy the reciprocal benefits of friendship.”

OUCH.

“License to Kill”

To “self-identify” is a topic discussed in many forums. Many believe that to do so goes hand-in-hand with acceptance and self-respect. One of my favorite “women of courage” buddies is a young woman by the name of Hunter. She and I both received our assistance dogs from Fidos For Freedom, Inc. Hunter was the first person I heard use the term “differently abled” instead of disabled.

I totally “get” choosing a more positive spin on a word many of us hate at times. However, I’ve also learned that because this is STILL the way the law identifies us (and protects us), I’m OK with being a person with disabilities. (Though like Hunter, I will quickly point out exactly how I simply do things differently…)

Labels – even those we pin on ourselves – can go SO WRONG, however. Once we start behaving as if our status “sets us apart” and in some way elevates us over another, we’ve really lost our purpose. Our goal is equality after all, correct? Many blogs I follow written by people with disabilities or who live with invisible illness, simply want to be accepted and treated normally.

I’m disabled and YOU are not… therefore I’m entitled to this, and This, and THIS. Obviously, a person who does this has missed the point. Yet, just as we may inadvertently reverse discriminate against those who live WITHOUT disability or invisible illness, we may choose to wear our “badge” as if it gives us free reign to disrespect others.

Guard your Tongue

Are you a person with a disability? Do you live with invisible illness? Does a chronic medical condition shape who you are? Do you have a service animal?

YOU are a person of influence.

Recently, I went to get a new contact prescription. I’m having to do so every 4-6 months unfortunately. As a result, I’m getting to know my eye care professional very well. At my last appointment with her encouragement for me to “see a specialist” ringing in my ears, she rolled her chair closer to me and said, “Can I share something with you?”

Immediately wary of the WAY she said it, I hesitated but said, “Sure! What’s up?”

She shared, “Until I started seeing you, I hated knowing a hard-of-hearing patient was waiting for me in the examination room. In the past, hard-of-hearing patients seem to be defensive, argumentative, and easily frustrated. I understand it can be hard to look through corrective lens with the Phoroptor as it means you cannot see my face to hear, but you are the first to not act as if it is my fault”.

I was stunned. I’ve always used humor to try and alleviate any discomfort others may feel as I enter an establishment with service dog and blinged-out cochlear implant. Yet later, I found myself wondering if I had ever treated someone poorly simply because I was frustrated.

Hopefully, my ability to laugh at my own fax pas and miscommunications will compensate for some of the bad experiences my optometrist had with people who have hearing loss. With regret, however, I could remember many times where I “blew it” and had a negative influence.

One rainy day, I entered a new building on another campus for a class and stopped at the security desk for directions. Before I could state the problem, the campus officer asked, “Why is that dog in here?”

Yeah. She could have stated it a little more diplomatically, but I became immediately defensive. I blurted out all the ADA information I knew about service dogs and then said with exasperation, “Where are the elevators for the classrooms above?” Several weeks later after classes were finally routine for me, I had to stop and apologize to her. I was out of line.

Every encounter you have with people at work, stores, places of business, and even church are an opportunity for you to be a GOOD influence. You set the stage for future encounters for these folks. We can be a good influence or a bad one. We shape future encounters for people just like us. Remembering that has helped me be a little more patient.

Bottom line, my point? Let’s practice what we preach…

Denise Portis

© 2013 Personal Hearing Loss Journal

United States Equal Employment Opportunity Commission (2013). Discrimination by type. Retrieved March 25, 2013, from http://www.eeoc.gov/laws/types/

Are Doctor’s Offices Truly Accessible?

Published on by hearingelmo7 Comments

doctorI recently returned to my doctor for a check-up as I’m on a number of blood pressure medications. I have been on blood pressure medicines since the age of 20. My genetics guaranteed I would have blood pressure related issues.

I grimace and swallow my meds every morning and think with tongue in cheek, “Thanks, Dad!” 

I hate going to the doctor even for something as routine as a blood pressure check and to request refills for my medications. I’m not afraid of doctors. I actually LOVE my primary care. His personality and method of “doctoring” suits my personality very well. He’s very business-like and professional, but also has a level of genuine compassion lacking in many who have been in the medical field perhaps too long. His staff is fantastic. The office is close to my home and to my work, so it is very convenient.

But I hate going.

My doctor’s office is not accessible. Oh sure they have properly marked handicapped spaces in their parking lot and curb cuts for those with mobility challenges. Their waiting area is spacious and the hallways are easily navigable. My doctor’s office is very high tech. Written charts? Pffflllttttt. Thing of the past. My doctor and staff use iPads, notebooks, and stylus.

But I hate going.

Again… my doctor’s office is not accessible. At least not for me. Just in case you are new to Hearing Elmo I am a late-deafened adult, “hearing again” with a cochlear implant. I also have Meniere’s disease, a balance and vestibular disorder. I mitigate my challenges with a service dog as well.

Do you know how hard it is to step on a scale when you have a balance disorder? The platform is about 12″ x 9″. Scales are usually against a flat wall, with nary a thing in sight to grab to hold still. It isn’t like I can grab Chloe’s harness when being weighed. I don’t need her extra 62 pounds on the scale – believe me! So I grab the wall and do my best to keep from tilting. I very likely look as if I getting frisked. After some close calls I HAVE noticed that there are TWO nurses with me now when I am weighed in each time. Someone has put a note in my chart I think! I’ve tried to sneak a peek at this electronic chart. “Tilt-a Whirl Queen” or “Weebles Wobble” must be tagged somehow, I’ve just yet to actually see it in writing! (grin)

After getting weighed we head to an examination room. I sit in a chair while the nurse takes my blood pressure. It is always high, but not because of ineffective medications. It is not because I’m afraid of doctors. I’m convinced my blood pressure is high because I know what is coming. In breezes the doctor, with a smile and a firm handshake.

“Let’s hop up on the table. How have you been? Everything going OK?”

I only see the man twice a year so I can’t expect him to remember. The guy is popular with – “Best in Annapolis” kind of awards all over the wall. No way in the world he could remember. **But would it kill you to read my chart?**, I think to myself.

“I don’t hop anywhere. Sorry. As a matter of fact the table is too high for Chloe to help me so I need you to hold your arm like this…” (and I demonstrate with my elbow bent and arm horizontal to the floor). I repeat what I’ve said every time I go there, “It would be nice if these examination tables had rails or something!”

My doc is good-natured and sticks out his arm. I grab it and clamber up onto the examination table. As per usual, when I turn to sit the room tilts and I struggle to stay conscious.

“Wow, Denise. Your eyes! You have positional vertigo.” Yeah. Ya think? He sits on his stool and rolls over closer to me – unknowingly causing another bout of vertigo. I just sit there and hang on for dear life as he uses his finger to “flit” from screen to screen, reading up on my medical history.

“Well your blood pressure is pretty high. Let’s take it again.” he states while reaching for the blood pressure cuff.

I don’t say a word as I’m too busy hanging on for dear life.

After taking it he turns to me and says, “It’s high. Do you take it at home? Is it perhaps high because you are here? Many people have elevated blood pressure at the doctor’s office.”

“I take it at home and it is well within the normal range every single day.” I indicate with my eyes the paper sticking out of my bag – Way – Over – There. He grabs it and scans the paper. “Wow, these numbers look great! It must just be high today because you are here”.

“Doc,” I patiently explain despite having repeated this conversation every 6 months for the past three years, “my blood pressure is high because

I’m

sitting

UP

HERE.”

Again with my eyes, I indicate the death grip I have on the edge of the thin mattress.

He looked thoughtful for a moment, flicked to some more screens on the iPad and turned to grin at me. “We’ve had this conversation before, haven’t we?” Yup. I love my doctor.

So What Can Doctor’s Offices Do?

For people with hearing loss:

1. Sound baffling

Doctor’s offices are full of flat surfaces and medical equipment. It can greatly improve communication to have some type of textured wallpaper, 3-diminsional cloth artwork, or even flat art-deco carpet squares on the walls. Not much can be done for cabinets, medical receptacles, and sinks. These have to be easy to clean and disinfect. I get that.

If possible, a room or two with lower ceilings and foam ceiling tiles can greatly assist in eliminating the bounce and echo of sound.

2. Face the person

Even if you have to look down to write in a chart, or type on an iPad, turn your chair so that you are facing the person. Do this EVEN IF YOU AREN’T SPEAKING. Do you know how often people with hearing loss strain to determine if someone is even speaking?

Checking ears? Looking in eyes? Listening to their thumper? It only takes a second to look the person in the face – FIRST – and explain what you are going to do next. If you want the person to hold their breath for a second, don’t ask behind their back. Actually… what is WORSE is telling them to “OK, breathe normally” behind their back! (Grin)

3. Write everything important down

New prescriptions? Re-check in six weeks? Instructions to check things like blood pressure or blood sugar at home? Write these instructions down.

4. Take their picture

Whether you save a small digital picture to their electronic file, or staple a Polaroid into the manilla folder and chart of their medical history, know what your patient looks like. When the door opens to that waiting room and the nurse calls the name of who is to be seen next, it helps to lock eyes with that person with hearing loss when you say their name. Take my word for it. Another blood pressure spike occurs for anyone with hearing loss sitting and worrying they will miss their name being called. Chloe’s head pops up and looks at anyone saying “Denise”. However, most people with hearing loss do NOT have a service dog alongside them.

If a nurse calls the next patient and every individual still has their head buried in the eight-month-old “Good Housekeeping” magazine, chances are the person didn’t hear you. It may not help to even say the name much louder. Besides… that is embarrassing. Know what your patient looks like.

5. Don’t say, “Call me”

Even though there are many wonderful options for people with hearing loss to use the telephone, it isn’t a good idea to say, “call me”. Email should be an option available to anyone who is more comfortable making contact in written form. If the patient is waiting for test results, email them. If a refill cannot be prescribed until an appointment is made, email them. If the patient contacts your office through email, don’t respond by trying to call the number on file. Email them back. People with hearing loss are on a level playing field with email. Plus, having a written confirmation only insures there are no misunderstandings.

If a patient DOES utilize various technologies and captioned phones, be aware that the patient may ask for repeats. Or, there may be a slight delay as the patient reads what the captions display. Doctor’s offices are busy places. Be aware that another minute or two may be needed to properly and fairly communicate with a patient who has hearing loss.

6. Don’t talk when they’ve removed their assistive devices

Checking the ears of a patient must be standard procedure in medical offices. However, someone with hearing loss will:

1) need a moment to remove hearing aids and/or cochlear implants

2) need something to put them in while you check those lovely ear canals

3) need a moment to re-insert the assistive devices after the quick check

7. Be willing to repeat

You know they have a hearing loss. They know you have a busy medical practice and other patients to see. However, if they ask for a repeat, please just do it? Don’t sigh or begin talking like you are now speaking to a toddler. They aren’t stupid, they simply didn’t hear you. (People with hearing loss should learn to ask for repeats of only the parts they actually didn’t hear. In this way, others aren’t forced to repeat something completely, when perhaps only a section of what you said was actually missed).

8. Ditch the gum

I love fresh breath.

I feel for someone trying to stop smoking.

However, please refrain from chewing gum or sucking on mints when you go into the examination room of someone who probably speech reads.

For people with balance disorders:

1. Understand that heights – even small ones – can be a problem

Offer an arm or grab an elbow when people with balance disorders climb up on scales or examination tables.

Don’t finish up and say, “Meet me up front” to a half-naked patient sitting up on an examination table with a death grip on the mattress. Offer assistance to help them down. (I actually fell from an examination table getting myself down and landed on a stool which rolled and crashed into the cabinet – creating a terrible racket. The nurse ran back into the room clutching her chest and exclaimed, “You scared me to death!” Laying on the floor and looking up at her I sarcastically spit out, “Well gee. How sorry am I?” Note: My good manners fly out the door when I have to respond from the floor).

2. Move slowly

People with balance disorders often have problems with vertigo and focus when others move fast. Love that stool on rollers? Move slowly please. This isn’t a medical office Grand Prix.

3. Follow the light with your eyes…

… is easier said than done. Seriously, you have no idea how hard this can be if you have something like Meniere’s disease.

4. Sit still

Most examination rooms have stools on rollers. Many people fidget and don’t even realize they are. If you are sitting on a medical office stool, chances are this means you can swing from side to side as you talk to the patient. I’m not saying pretend you’re a statue. But bouncing knees, swinging from side-to-side, or rolling quickly from one side of the room to another can really do a number on a patient with a balance disorder.

 Patient responsibility

Ultimately, it is the patient’s responsibility to remind medical personnel what you may need to communicate effectively and navigate safely. However, some small and inexpensive adjustments can be made to make doctor’s offices more accessible.

Denise Portis

© 2013 Personal Hearing Loss Journal

S.O.M.L. – “Snoring On My Light”

Published on by hearingelmo8 Comments
Snoring on my light? Say whaaaa... ?
Snoring on my light? Say whaaaa… ?

Living with hearing loss. My friends, I have to tell you that I have learned long ago that it is much better to laugh at yourself than to get upset when your ears fall short. Besides I’ve tried the depressed, isolated, and “I surrender” route. It isn’t fun and it is lonely. It serves no purpose, nor makes a difference. Continuing to reach out, work hard, and laugh at yourself when needed, is much more productive – and life changing!

Although my classes sometimes have students my age or older in them, the majority of the classes I teach are mid-day so my students are “regular”, college-aged, young adults. I have two young adults living at home while they complete their education. I knew BEFORE I began teaching at a local community college that I don’t know the “lingo”. I don’t think they even CALL it “lingo”. But I digress…

I’m constantly being made aware that I “don’t get it” when students (or my children) use current idioms, slang, or acronyms. I not only have to ask for clarification, but I often need these things EXPLAINED to me. “Gullible” and naive have been terms to describe me since I was knee high to a skeeter. (Yeah… something else I seem to be proficient at is mixing my colloquial expressions!)

So this past week when a student I was working with to assist in getting caught up after being out sick? Well the fact that I misheard them AND missed their acronym is not a big stretch – let me tell you!

“So I’ll work with you to get you caught up. This will be a hard week, but you can do it!” I said with my best cheerleader professor voice.

“A soy meal.” the overwhelmed student replied.

I looked at them quizzically for a moment and repeated, “A SOY MEAL?” (I learned long ago to just go ahead and repeat what I thought I heard to help the other person, 1) learn how things sound to ME, and 2) help them understand the part I need repeated – so as to not require a repeat of the whole story).

With deliberate pauses the student repeated, “S.    O.    M.    L. Snoring on my light”.

Stumped and exasperated, but determined to get it right I repeated, “S.O.M.L. — Snoring on my light? Like a “Clap On” gadget?”

The student’s eyes bugged out and there was a pause. Chloe, my service dog, looked from one petrified person to the other. She yawned and settled into a down-stay. “Girl friend” has been here before and knew it was gonna take awhile…

“Professor Portis! I have NO idea what you are talking about. I never said anything about a gadget! S.O.M.L.  It means “Story of My Life”. The student had that “deer in the headlight” look at this point. Who says young adults don’t have the guts to see a difficult conversation to the end? They continued, “You know… it means my life is always like this!”

It took me a moment or two. After all there is a teeny tiny delay in what I hear to what I process anyway! “Oh. STORY OF MY LIFE. Got it…”

With relief the student gathered their things and proceeded to attempt ESCAPE. A twinkle in their eye and a deliberate pause to get my attention, she looked at me in the face and clearly intoned, “Snoring on my light. You are a hoot, Professor Portis!”

Without missing a beat I retorted, “S.O.M.L.!”

Denise Portis

© 2013 Personal Hearing Loss Journal

Monkey See, Monkey Do

Published on by hearingelmo2 Comments
I've always been an "expressive mime" and mirror people's facial expressions!
I’ve always been an “expressive mime” and mirror people’s facial expressions!

My kids were the first to ever mention it to me. However, since that revelation a number of people have told me, “Denise? You mimic every facial expression I have!”  Some said so with exasperation, and some with amusement. My daughter, age approximately ten-years-old, interrupted herself describing something funny that happened in a class to exclaim, “Mom! You crack me up! You make the same faces I do when I talk!”

Sort of like “monkey see, monkey do” I suppose… but not because I was learning through observational learning or imitation. Instead, as a person with hearing loss, I carefully watched the facial expressions to better speech read and pick up more than I could by simply hearing pieces of words.

It’s different than being empathetic. I know because I’m one of those folks who will laugh with you and cry with you. Yup. Literal tears and equal sobs and hiccups. Don’t get me wrong! I’m sincere! I just get very emotionally involved in communicating and have been known to laugh, cry, or “blow my top” just in commiseration!

I “hear again” fairly well now. I’m bi-modal – meaning I have one cochlear implant, one hearing aid, but AIDED in both ears to better hear. Ideal environments are one-on-one in quiet places. I hear well with only some necessary clarification even in noisier environments. However, despite hearing better, I still have the habit of mirroring people’s emotions and facial expressions.

I learned ASL long before I lost my own hearing. I had some friends in college who were culturally deaf… and this motor-mouth wanted to talk to them. Most people who are late-deafened never learn ASL. (Why? They were born hearing and likely most of the people they know are verbal communicators). However, ASL is actually made up of three things: sign, facial expression, and body language.

So perhaps that is why I mirror facial expressions. More likely? My best guess is that people with hearing loss have a need to really focus, really TUNE IN when communicating. Sure, we speech read to a degree, but we watch people’s faces too. Are they smiling, scowling, surprised or crying? These facial expressions matched with what we CAN hear, help us to determine the overall content of what a person is communicating. So guess what? If you know someone with hearing loss, it can greatly benefit that person for your face to match your mouth.

Sarcasm is a Problem

How do I know this can be a problem? I have a sarcastic son. As a matter of fact, my daughter has been described as having a dry wit. My husband? KING OF SARCASM. It can be really hard to communicate if their face is saying one thing (or nothing at all…) and their mouths are saying something else. Even “hearing again” as well as I do I was taken aback by a conversation I had on the training floor at Fidos For Freedom recently.

Steve (name changed), a fellow client and new buddy of mine, came up to me in his scooter with this big signature smile on his face. “HEY! (What can I say… I’m exuberant!) How has your week been!?”

With huge smile and sporting numerous dimples he responded, “Hi, Denise. Hi Chloe. I had a really bad week!”

I paused a moment. Then a second moment went by. I was confused. In this big cavernous training room with numerous sounds competing with what was coming out of his mouth, his face did not match what I thought I heard.

“Ummmm.” (Yeah. I’m eloquent).

Thankfully, he took my pause as permission to elaborate. It only took another sentence or two for me to realize – yes. He HAD indeed had a bad week, but ever optimistic, positive-thinking young man that he is, wasn’t going to let that stop him from smiling and enjoying his training and friends at Fidos For Freedom.

Another example of mixed signals:

In class today a student rushed into class a few minutes late, causing me to skitter out of the way before I was knocked flat. Big smile on her face, she stopped with big eyes and eager expression to spout, “Crap. Crap, crap, crap. I could kill myself!”

Again, tempered with years of experience I intelligently responded…

“Ummmm.”

“We have a quiz today, don’t we? Crap! I forgot!”

Thankfully people do tend to continue, helping to CLEAR UP that initial confusion. It is a much tougher situation when you get mixed signals and then they pause waiting for a response. You know that terrifying look? Shoulders turned slightly towards you with eyebrows raised and expectant look? (When I see it the blood rushes right out of my face!) Then I have to ask for clarification, “Could you repeat that?”

Many times mirroring another’s expression can be very helpful. If they look concerned and you mirror that concern, it may clue them in you are taking something they are saying seriously – when perhaps it is NOT. I’ve had friends pat my shoulder and say, “Relax. I’m kidding”

Being willing to ask for clarification is key. People with hearing loss cannot be afraid to admit you did NOT get it. You don’t need to complain. You don’t need to “ticket” repeat offenders. No need to point and loudly exclaim, “Everyone look at this person! They are expressively dyslexic!” (Ok, yeah, I made that phrase up).

Instead, just say, “Oh wow. You know what? I didn’t hear that right because your expression doesn’t match what I thought I heard”. That’s enough! In the end… you just may assist helping others become more expressive, genuine communicators. Hey… we can dream, right?

Denise Portis

© 2013 Personal Hearing Loss Journal

 

Sunshine

Published on by hearingelmo3 Comments

sunshine

I was so glad to see the sunshine today. I read the weather forecast last night and tried to tamp down the anticipation and excitement in my heart. We’ve had such rainy, humid weather. I’m just a “mess” for lack of a better word when we have periods of days like that. Meniere’s disease is a burden I do not gladly bear. I’ve yet to be able to “find thanks” for it, though I have learned to do so is the best way to come to a place of full acceptance.

So when I saw the forecast I was optimistic but influenced by the realist within me… you know, the one who has seen the poor forecast predictions for the last week? We don’t get “full sun” today, but I am embracing the “partly cloudy” let me tell you!

Humidity is not really the “friend” of a person with hearing loss without Meniere’s disease as well. Veterans will tell you that faithful use of a desiccant brick (I use “Dry ‘n Store” myself) will prolong and improve the use of hearing technology such as hearing aids, cochlear implants and more!

We’ve no control over the weather. We can try to keep these devices dry, but “weather happens”. I do try to be careful and have an umbrella in every car, near the door, and in my rolling cart that comes into every classroom with me. I faithfully attend to the weather forecast so as to be better prepared for the day ahead.

Sometimes humidity and moisture problems occur in addition to weather-related incidents. Here are some I’ve dealt with myself:

1. Stepping into the shower, “hearing”. You’d think since I cannot hear the shower run anymore as I walk into the bathroom “deaf”, if I can actually hear the water running it would clue me in to the fact that I forgot to remove my “ears”. A couple of times a year I will still step into the shower not quite as “naked” as I should be. Thankfully, realization hits quickly. I shriek, streak to the bedroom, dry them off, tuck them into the Dry ‘n Store, and pray they dry quickly. Bedtime RITUAL is what has helped me avoid any of these wet OOPS lately. Having a routine before doing things like showering may help!

There is a cochlear implant by Advanced Bionics that can be completely submersed in water. My Nucleus Freedom by Cochlear is water resistant. For me this means I can have some of those OOPS episodes and not have to worry about damaging my CI!

2. Sometimes I sweat. Yeah, I know. Not very feminine or attractive. I crack up reading labels in the deodorant aisles at stores. Men’s products claim to control sweat. Women’s products boast of smelling pretty, not leaving white marks, and control perspiration. <snort>

I’ve found a great product though, and highly recommend EAR GEAR. They claim to be hearing instrument ARMOR. I love their products. They have products for BAHA, hearing aids, and cochlear implants. Ear Gear protects our devices from moisture and dirt. They also happen to be very comfortable. I have very small ears and the products actually help my devices “slip” less as well. Click HERE to check them out. They have some cool colors too, which is always a perk in my opinion as I sport my “bling” proudly!

I’m not an athlete, but I know some late-deafened folks who are. There are various companies that sell products that help devices not only stay dry but also help them STAY PUT. Megan at Hearing Sparks discusses seven great products that are of special interest to those who need hearing technology protection that are ACTIVE. You can access this post HERE.

I’m going to cut this post short. I’ve some sunshine to go embrace…

Denise Portis

©2012 Personal Hearing Loss Journal

Confrontation and Hearing Loss

Published on by hearingelmo2 Comments
Acting out a conversation gone WRONG…

I hate debate. Perhaps it is because it is too much like arguing. When my now, 21-year-old son was still in high school, he wanted to take debate. We thought it was an excellent idea as he could argue the paint off a wall. We figured, “Why not channel that?” I was dismayed to discover it made his default to arguing even stronger! I’m just not a big fan of arguing. Now don’t get me wrong… it’s not because I do NOT argue. Heavens! My family will tell you that is not the case! What I do not care for is having to confront someone, or argue a point now that I have hearing loss.

Volume

I’ve had a hearing loss longer than I lived my life without hearing loss. Frankly? I can’t remember if I was loud prior to eventually losing my hearing. Trust me. I recall arguing growing up. I have two brothers and one sister. We argued.

Since becoming deaf, however, I was oblivious to the fact that my family would wince as I proceeded to give my point of view in the midst of an argument. I’m ashamed to admit that the first thing that clued me in to the fact that I was WAY TOO LOUD, was that I often had a sore throat after an argument! Perhaps my family members didn’t say anything to me because they figured… “She’s deaf. Of course she’s loud…”

We can learn (with practice) to lower the volume in our voices when having to confront someone, or when arguing a point. What I have found to be an occasional problem with doing this, is that the other person may lower their voice too! People often vocally mirror what they are hearing. When I’ve deliberately lowered my voice in an effort to be aware of my volume, the other person often lowers their voice as well!

I have a friend here in Maryland that I met at a hearing loss support group. She is bilaterally implanted and hears very well with her two Nucleus Freedoms. However, she was very loud when she communicated with others. I took her aside once and asked her if she realized her voice was raised. I was surprised by her answer!

“Of course I know I’m loud! It’s the only way I can get people to consistently speak up enough for ME to hear. If I talk loud, they do too!”

I secretly set out to prove her wrong, hoping to garner a little more ammunition to argue my own point of view about her volume. But do you know something? She was right! As I eavesdropped and observed some of her interactions, people would increase their volume when turning to talk to her because she was very exuberant and loud. They may have been talking to someone else right before addressing her and would be speaking in a normal tone and volume. After they turned to speak to her, their volume would dramatically increase. I had to go to her and tell her that she was right!

To offset this unfortunate conundrum, she and I set about trying to educate others around us that volume wasn’t as helpful as enunciating properly and making sure they were facing us when speaking to us. Eventually, she (and I) did learn to communicate without quite so much… VOLUME.

Proximity

I have young adult kids living at home. As long as they work, go to school, and do their fair share around the house, they actually live here free of charge. However, living with two independent thinking young adults also means that I occasionally have to confront them about something – usually about keeping up with their end of our “bargain”.

My kids have only known me as a person with hearing loss as they are only 11 months apart, and my hearing loss began after the birth of my youngest – my son. So they are very accustomed to my “getting up in their grill” when we argue about something because they know proximity helps me hear better and see better. A secondary benefit is that I’m close enough to grab, kiss, or hug them when needed to dispel some of the tension.

Other people do not really appreciate close encounters with the “deaf” kind. I’ve had confrontations with students about fulfilling their responsibilities about an assignment. I have to be careful about following my first inclination to step closer to get my point across. Professors are to maintain a professional distance for obvious reasons.

If those of us with hearing loss get into the bad habit of stepping closer to someone in an argument, things can really “heat up”. It is a natural reaction to feel defensive if someone gets up in your personal space. What was only a verbal confrontation could quickly escalate into a physical altercation. It is a natural reaction to want to “push off” someone who is WAY to close for comfort! Even if people understand you are closer because of hearing loss, they may not be able to control their feelings of unease, need to protect, or urge to step away. We should be careful about how close we get to others even when arguing.

Crying

I rarely have to confront anyone who is not an immediate family member. If I have to confront a student, friend, colleague, or acquaintance, it is done through email. This has added benefits:

1. I can think about what I want to say and edit at leisure.

2. I have a written record of what was said.

3. It allows them to respond in kind, allowing me equal access in the conversation as I can read their own response.

My family members do see the “confrontational Denise” at times. I’m mom, wife, and FEMALE. I’m a crier though! If I’m happy, I may cry. If I’m sad, I most certainly will cry. If I’m mad – yup, you guessed it. I’m prone to crying.

I have been arguing with my husband about “this or that” before and had to wave my hands and say, “Wait. WAIT! I can’t hear you anymore!”

It’s rather difficult to hear when I’m hiccuping, sniffling, blowing my nose, and flat out WAILING. Sometimes I reach up and even disconnect my cochlear implant! I sound raucous and noisy even to myself! I take a few, deep, steadying breaths, reconnect “my ears”, and continue the conversation.

If confrontation causes you to burst into tears, I definitely recommend taking a break and “getting a grip” before trying to continue the conversation. You will only miss 1/2 of what you are hearing anyway! Better to calm down and try again after you are able to communicate effectively again.

Misunderstandings

Let’s face it… when we are arguing or are having to confront someone, chances are we are not communicating well. Tensions are high, everyone is on edge, and misunderstandings are bound to happen. I’ve noticed when my husband and I are fussing (usually about those young adult kids I mentioned), I’ve noticed I have to ask for repeats much more often. He has noticed this as well. “Repeat that please?” or “Say again?” are much more frequently said when we are discussing something rather heatedly.

If nothing else provides incentive to CALM YOURSELF… do so because you will actually understand what is being said much better.

Early on in my hearing loss, I learned to repeat what I THOUGHT I heard if it sounded strange or if I realized there is NO WAY that is what the other person actually said. My husband has CRACKED UP before – mid argument – because I repeated what I thought I heard when communication broke down.

“SIX TIMES, Denise… not SEXY SHINE” he’d carefully explain with a huge smile on his face.

Hey. At least the ridiculous misunderstandings serve to diffuse some of that tension!

Denise Portis

© 2012 Personal Hearing Loss Journal