Tag: late-deafened

Can You Be Arrested for That?

Published on by hearingelmo6 Comments
My favorite cane...
My favorite cane…

I have friends who are police officers. One, Carl, is actually chief of police for a district in our area. I see him most Sundays, and tomorrow I plan to ask him, “Can you be arrested for that?” I love his sense of humor and he and his wife, Pam, are two of my favorite people. Though I know he will be witty, I also know he will be straight with me. Anything that pertains to the law, he’s gonna be frank with me.

Maybe I should back up though, and tell you the story? <grin>

First of all, I’m really tired. I could list you dozens of citations that link differently-abled people with fatigue and insomnia. I’m usually good about listing all those for you, but honestly there are over 26,000 articles since 2012 alone. (Yes… I counted, or rather Google scholar did!). But I digress…

When I’m tired I have a little more trouble filtering what I say. I am much more apt to just say the first thing on my mind. I’m trying to live with the “pause – respond” method (thanks for that Toby Mac post, Helen), and being mindful of not saying the first thing that comes to mind really helps. When I am tired though, I’m less likely to turn that filter on.

I have a dog in hospice care at home (sweet, retired Chloe), and I am very likely involved in way… too… much. Finishing my dissertation, teaching four classes, volunteering at a number of places; the list goes on an on. Just color me tired. This tired woman, with turned-off filter, entered Giant grocery store on Thursday. Milo-bear (my current service dog from Fidos For Freedom, Inc.) was tired as well as we had just completed a long training at the county police academy and he had a fairly long demo (that he NAILED). I only needed to get a few things, and so encouraged Milo for a last push before heading home.

When I’m tired, I wobble. <ahem> Ok. I wobble all the time. However, I wobble MORE when I am tired! I had one of the smaller carts, Milo, cane, and enough time that I did not need to rush. This didn’t seem to matter. I was a mess. I even wobbled when I moved my field of vision from one shelf to another. Being late-deafened, I do not always hear things in a big, cavernous store with lots of tile and hard surfaces. I turned suddenly, and almost plowed into a man standing there shopping with one of those hand baskets. He threw up his hands and watched me wobble, screech (just a little), and grab for everything stationary in my vicinity.

No face plant (this time). I whooshed out a breath of air, and locked eyes with him and was getting ready to say, “Wow. That was close“. He beat me to airtime, however.

“Well you are more than a little pathetic today, aren’t you?” with a grin and twinkle in his eyes.

Now… I’m late-deafened. I often mishear things. My husband could tell you a thousand stories about WHAT I THOUGHT I HEARD. He’s one of the few voices I can hear on a telephone, and has never let me live it down when he called and said, “Dinner at six?” I misheard and thought he said, “Dinner and sex?” Maybe inside I was thinking, “yes, please“, mature adult that I was said, “Excuse me…?” Yeah. That one has been hard to live down.

So this smiling man with a twinkle in his eye standing there waiting for me to respond, may NOT have said, “Well you are more than a little pathetic today, aren’t you?” I had to give him the benefit of the doubt.

Maybe he said “phonetic“. Eh, likely not since I only screeched and had not said anything.

Maybe he said “poetic”. I could dream.

Maybe he said “prophetic“. Perhaps he sensed I was getting ready to assault him.

To clarify, I said, “Ummm, pathetic?”

“Yes”, he replied, “because you….” his voice cut off because at this point? I had my cane raised.

I poked him with it. HARD. “I’M pathetic? You’re the pathetic piece of humanity standing there making snide comments about people who are a little different than you!” 

He rubbed his chest where I poked him, mumbled something that I’m not EVEN gonna pretend I heard well or understood, and wandered off. I sat there hyperventilating.

Milo-bear looked up at me like, “Are we done yet?” cool as a cucumber. Me? My cucumber was fried.

As I stood there wobbling and taking deep, calming breaths, I gave myself a pep talk that the guy likely just had a poor choice of words. He seemed friendly, nice even. I’m sure he didn’t mean the way it sounded… the way I took it. I even had the grace to ask God that if He brought me face-to-face with the man later in the store, I would apologize and try to explain how his comment made me feel. Thankfully, I did NOT run into him, because… well I wasn’t really wanting to apologize.

Yes. I should have just moved on, or perhaps even “only” blasted him with my “how pathetic are YOU” rebuttal. I need to keep my cane to myself. (Can you tell I am preaching to myself?) Who knows why he chose the words he did. I make poor choices all the time.

And I do mean ALL the time.

So perhaps I need to practice the “pause method” even more:

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Denise Portis

© 2016 Personal Hearing Loss Journal

 

But, Butt, Buttocks and Butte

Published on by hearingelmo1 Comment

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

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

Get it Right

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

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

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

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

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

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

Everyone’s an Expert!

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

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

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

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

Rest in peace, auntie.

Cut ‘EM Some Slack

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

1. Fragile porcelain that may break under pressure

2. They are suddenly contagious

3. They are more dangerous than Freddy Krueger

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

Denise Portis

©2014 Personal Hearing Loss Journal

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

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

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

Why I Love Winter

Published on by hearingelmo2 Comments
The woods near our home without their usual foliage…

(PART ONE OF FOUR)

Chloe and I took a walk after lunch today. I had to smile as I saw the snowflakes falling softly around us even though it wasn’t cold enough to “stick”. I just love winter. I love actually getting out IN the cold weather as well. I love bundling up and walking briskly – something I can do even with Meniere’s as my symptoms are usually much more mild in the winter. I love being able to see my breath in the air and being able to smell various fireplaces in use in homes as I pass. However, one of the biggest reasons I love winter might surprise you. As a person with hearing loss, one doesn’t expect to enjoy QUIET.

Winter Can Be So Quiet

When walking, many people are inside where it is warm. So in the wintertime, my walks are often much more quiet than when I go during other seasons. I love the quiet. Don’t get me wrong! I love being able to hear, but I hear best when it is quiet. Am I contradicting myself? (BIG GRIN). Eh… maybe.

Hearing with a cochlear implant is a mind-boggling thing. I hadn’t expected to hear this well again this side of Heaven. When my husband and I realized that my progressive hearing loss would ultimately mean I would not hear at all, we were concerned. Thankfully, through the support and relationships of the Hearing Loss Association of America, we learned that being late-deafened does not necessarily mean the end to hearing. We learned about cochlear implants and I took almost three years researching and “talking the much needed ears off” numerous cochlear implant recipients. As thankful as I am for my cochlear implant, it does not mean that I now hear perfectly. As a matter of fact, I become a little aggravated when people act as if my cochlear implant “fixed” my hearing. Yes, I can hear. But it’s a different kind of hearing, and one made more difficult when trying to understand speech in the midst of noise.

So I love the quiet. I hear better. When walking, as the world around me is more quiet compared to other times of the year, sounds that are present are crisp and clear. If it is quiet on our walks, I can actually hear much of what Chloe is hearing.

Chloe can HEAR the squirrels even though she hasn’t yet spotted them…

I love listening to nature. I pick up many more sounds in the winter because of the quiet. The lack of foliage also assists in allowing sound to carry. In some spots of our neighborhood I can even enjoy an “echo-like” effect in the world around me.

We Need the Quiet

I have had numerous late-deafened folks tell me that they too, go “deaf” on purpose. For those of us who are thrifty, it saves on battery life. However, for many it is simply a matter of being mentally fatigued. It takes a lot of effort to understand and communicate using technology and speech reading. People with hearing loss must employ a number of senses to communicate. Those with normal hearing are not required to use much more than their sense of hearing to communicate. I believe this is part of the reason I need 8-10 hours of sleep a night. (Yes… you read that right!) I am mentally exhausted at the end of every day just because I’m communicating with family, friends, and co-workers. It takes work to hear! Listening requires active participation for those of us with hearing loss.

The forest is sleeping during the winter…

When there is a great deal of background noise, I don’t hear well. As a matter of fact? There are times I don’t even try. Case in point… my church:

 

Want to know the noisiest part of every church service? I think it is before and immediately after the actual service. Or, how about when the pastor or minister of worship says, “Everyone take a few minutes to meet and greet those around you!” ? AAAARGH! I try to make myself invisible if you must know. I am petrified someone will come and talk to me because I know I won’t hear them. I’m getting better though when someone approaches with their hand out and a big smile. I’m taking a risk but “betting on” that they are saying, “Hello, how are you today?” I have learned to smile, shake their hand and say a simple “Hello!” My preference in communicating is definitely one-on-one.  I do really well – IF – it is in a quiet atmosphere.

But you know something? My exposure to multiple disabilities at Fidos For Freedom has taught me one very important lesson. We could ALL do with more “quiet” in our lives. Quiet can foster introspection – and friends? I’m big on reflection, meditation, and soul-searching! For many of us, we face many physical battles on a daily basis. We really NEED quiet time. Contemplation may provide us with resolve, a new “plan of attack”, time to absorb new information about our disease/disability, and the ability to recuperate emotionally and mentally. As a person of faith, it is my quiet moments that I can humbly ask for guidance or assistance… or scream for help!

It is often when we are quiet that we can plan and “gear up” for the journey ahead. Victor Hugo said, “One is not idle because one is absorbed. There is both visible and invisible labor. To contemplate is to toil, to think is to do. The crossed arms work, the clasped hands act. The eyes upturned to Heaven are an act of creation.” For some of you, life’s journey requires a little planning. I have a friend who cannot do anything spontaneously. Errands are planned, cleaning specific rooms of the house are planned a whole day in advance. Errands rely on the goodwill of family and friends who are willing to cart her “here and there” as her eyesight has deteriorated. Cleaning is done when the body isn’t on “strike”. Lyme’s and Chronic Fatigue insist that she double-up on recipes when she has enough energy to cook. That way she can freeze things so that she doesn’t go hungry on days she cannot cook meals. She requires a lot of quiet time. For her… it’s not a communication issue. She needs time to plan and to take strategic steps in organizing as best she can her journey. She even needs quiet time to COPE with her disease.

Winter allows me more quiet time. Outside – fewer people are out and about. Inside – family members at home tend to curl up and do quiet things on their computers or may catch up on reading. Like hibernating bears they tend to sleep more. Co-workers are quieter during the winter. Hubby says it is because of S.A.D. Who knows? I do think winter generates a feeling of “quiet” in many people.

I encourage you to find more quiet time. Winter, spring, summer, or fall – the season isn’t important. Finding time to be QUIET and use the time wisely is important to all. Even if you use the time for a power nap…

Denise Portis

©2012 Personal Hearing Loss Journal

My Goals? Stop Apologizing…

Published on by hearingelmo3 Comments
At City Dock in downtown Annapolis near the U.S. Naval Academy

I find it a little hard to believe it is 2012. Normally, the New Year doesn’t sneak up on me. However, this year it certainly did just that. In the past, I’m almost obsessive-compulsive about planning and organizing my resolutions for the New Year. I suppose that I haven’t allowed myself to obsess about it this year, points to the fact that I continue to change and evolve as I age. I think change is important and hope that I will always grow, mature, and change from one year to the next.

Sometimes though? Sometimes I see things in myself that I need to change because they are negative. In my reflection of 2011, I discovered a real negative that I really want to work on in 2012. Introspection did not really help me discover WHY I have developed this bad habit, but I can make some educated guesses.

I apologize. I apologize a great deal. I apologize for things that are not my fault. Some reasons I may do this?

1. I feel as if it will keep others from feeling the blame or reacting in a defensive way.

2. I default to shouldering the blame for most things.

3. I hope to diffuse any uncomfortable thoughts or reactions by others.

4. I hope to garner apologies and acceptance of responsibility by others by my own example.

5. HABIT

Please don’t misunderstand me. I believe that people should accept responsibility and offer apologies when they are warranted. However, I have developed a habit of apologizing for things that are not my responsibility. Sometimes when I say “I’m sorry”, it is simply a matter of miscommunication. I need to say something… but do so in a way it more accurately communicates my real meaning.

An example: “I’m sorry you misunderstood me”.

A better response would be, “I believe I have been misunderstood. May I clarify my meaning and intent?”

As a person with hearing loss I even respond with a “sorry” when I missed something. Example: “I’m sorry. I didn’t catch that”. It may very well be that it is no one’s FAULT that I missed it. After all… I am a late-deafened adult. Yes, sometimes folks may cover their mouth with their hand, or mumble. When that happens it is better to say, “I didn’t catch that. Could you repeat it please?” – or – “You were covering your mouth and I didn’t catch that. Will you repeat it please?” I’m going to try to stop myself before I respond with a habitual “I’m sorry. I didn’t catch that”.

It’s My Choice to Mitigate My Disabilities with a Service Dog

Recently, I “replied all” to an email in which a group of employees were nailing down details about when to meet for a book group. We are reading “Storm” by George R. Stewart. I actually typed out, “I apologize in advance that I will have my service dog with me as she is with me 24/7”. I sat and looked at that sentence for a minute and thought to myself, “WHAT IN THE WORLD?”

I deleted that sentence and re-typed, “Just a heads up so that no one is startled, I will have my service dog with me as she is with me 24/7”. I re-read and re-thought that sentence for several minutes. I like to give people I’ve never met before heads-up about Chloe, but it isn’t required. However, some people ARE afraid of dogs or have allergies. I like to let people know in advance when I can.

When I interviewed at the local community college, before hanging up the phone I let the person know that I would have my service dog with me at the interview. When I arrived to meet with the panel of people interviewing that day, the director let me know that he was glad I told him about Chloe. He normally has his dog with him at work during the summer, and he didn’t want his dog to interfere with my working dog.

Sometimes it cannot be helped. I arrive and people are surprised (or dismayed) that I have a service dog with me. In the past, I have intercepted looks and stepped forward to apologize that I have Chloe with me. I’m not sure why I felt compelled to do this. I’m NOT sorry I have Chloe. She has given me the independence and confidence I needed to follow my dreams! Yet, I often felt as if I needed to apologize for her presence.

When someone asks if they can pet Chloe, I would automatically say, “I’m sorry. She’s a working dog and cannot be pet while she is in vest”. A better response that I’m trying to remember to say is, “She’s a working dog and cannot be distracted right now. Thank you for asking permission though!”

I realize that many people use the “I’m sorry” phrase without thinking about the ramifications of the meaning. To many it is simply a way to break the ice, or begin communicating a difficult idea. For me, I believe that the overuse of the phrase has only served to weaken my own self-esteem and even development as a confident adult with a disability. Please understand that I am talking about ME – and how being overly zealous with apologizing has inadvertently affected ME in a negative way. You will never hear me correct YOU if you choose to use this phrase.

I believe in giving heartfelt apologies when they are needed. In the right circumstances, it conveys the desire to make right a wrong and to restore a good relationship with another person. One of my favorite books is “The Five Languages of Apology” by Chapman and Thomas. I believe in caring about our fellow man and to learn to apologize in such a way it restores good communication and healthy relationships.

It’s no one’s fault I do not hear well. There is no one to blame that I stumble around on rainy days nor am able to retrieve things from the floor. You may be surprised to learn that I wouldn’t change anything about me. Sure… it’s taken a long time for me to accept who I am and to “like me” just the way I am! I do want to correctly communicate my heart, mind, and intent to others. I believe I apologize in far too many circumstances. I want to accurately relay information without demeaning or demoralizing myself.

You may be thinking “poTAtoes” – “po-TAH-toes”. What is the difference? For me… this is something I choose to work on this year. I want to better communicate with others without taking the blame for things that cannot be helped.

In October I was at a training class at Fidos For Freedom in Laurel, Maryland. One of my least favorite exercises is the “Meet and Greet”. I hate it, yet know it is one of those necessary (evil) tasks that I must learn to accomplish with an assistance dog along side of me. Reality check? I will have to communicate with others in a group when there is background noise. It is very difficult for those of us with hearing loss to do this exercise. I have to remember to turn my t-coil off on both cochlear implant and hearing aid. Thankfully, our training room is looped and I hear the trainer very well when commands are given. However, I have to turn these OFF in order to hear a group of people in the “Meet and Greet”. We introduce ourselves and give a little information about our dogs to new people. To folks we know well we simply “catch up”. Our dogs are suppose to remain in a safe place (sit or stay) and we learn to communicate while also keeping an eye on our partners. When you also speech read, it can be very difficult to watch faces while also keeping an eye on your dog. At this particular training, Chloe was in a down/stay for the inevitable “Meet and Greet”. Some of these dogs Chloe has known for a long time. Some of them are newer puppies recently introduced to the training floor to eventually be matched with a client. I spotted Chloe stretching in her down/stay with tail all a-wag and kisses galore for another dog in a down/stay. I corrected her and then realized I missed what the fellow client said.

“I’m sorry. I missed that”, I said with exasperation.

The other client didn’t hesitate and said, “Don’t be sorry. I don’t apologize for weaving around with both a cane and a dog!”

It hit me that I was implying my inability to hear well in this environment could be changed. It is what it is. I do NOT hear well in “Meet and Greets”. It is not anyone’s fault that I do not. No apologies are necessary. I’m learning to ask for repeats without apologizing.

I wish you success in planning your own New Year’s resolutions and goals. I’m keeping it simple this year. Happy New Year and welcome 2012!

Denise Portis

© 2012 Personal Hearing Loss Journal

 

Once Upon a Time…

Published on by hearingelmo4 Comments

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

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

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

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

 

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

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

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

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

Denise Portis

© 2011 Personal Hearing Loss Journal

 

What does a “Drum Brush” Sound Like?

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drum brush At church on Sunday I watched as the final seconds counted down to designate the start of our services. A timer displayed on the wall allowed everyone to see when the services were expected to begin at Daybreak Community Church. The band members rushed to thier spots and as the last second disappeared, the music director said “Good morning” to everyone present.

The drummer sat down at a single drum and microphone with a tool resembling the one you see pictured here. I had never seen this before as the “norm” for our drummer includes the entire drum set, cymbals, etc. I craned my neck to watch as he used what looked like a “whisk”, on a rectangular drum placed between his knees. I did my best to see if I could hear what sound he was making over there! Unfortunately, I could only hear the keyboard, base guitar and voices around me lifted in praise. It’s NOT that this is usually an unfortunate thing – smile! On the contrary, I am usually extremely pleased to be able to tell where we are as I look at the lyrics displayed on the wall behind the band! But today… I wanted to hear what this “whisk” sounded like!

Drum Brush

Immediately following the final “Amen” and parting song, I rushed up to the drummer with Chloe in “heel”. Because I didn’t even know what it was called, I reached over to his music stand and touched the “whisk”,

“Bobby… what IS that?”

“I call it a drum brush,” he explained while picking it up so that I could see it closer.

“A drum brush? What does it sound like?”

Bobby bent to his drum and “played it” again. I got down on one knee and moved my CI closer to the drum. I strained to listen… and could just barely make out a sound. It was a tiny, fluttery, BRUSH of sound. I smiled and looked up…

“Cool!”

Bobby asked, “What does it sound like to YOU?”

Hmmm… I had to ponder that for a brief yet “ponderous” second or two.

“I think it sounds like rustling leaves,” I replied.

“Hmm. I have always thought it sounds much like Jiffy-Pop popcorn,” Bobby grinned in response.

“Yeah! Yes, it does!”

I knew that agreeing also meant that I had instantly aged myself. For “Jiffy Pop” was something that was long before microwave popcorn. (Since Bobby and I are close to the same age, I knew he dared not make a crack about my age… besides you can STILL buy Jiffy Pop!)

Crackling Leaves and Jiffy Pop

If you click on the videos below, those of you with normal hearing or those who “hear again” with the miracle of a cochlear implant, you should be able to hear the sounds.

    

Memory Makers

Since I have been hearing again for four years now, many times when I re-discover a new sound I equate it to a sound that I still have “stored in my memory banks“. The brain is unique that way. If I am hearing a cat purr, I have a memory of cats purring prior to my becoming deaf. I grew up on a farm in southeastern Colorado. We had many cats and I had stored away what a cat’s purr sounds like. However, if what I am hearing is new to me, I am unable to compare it to the same sound that I was able to hear in my past. The best I can do is compare it to another sound in hopes of being able to describe it and make sense of it as I listen with my cochlear implant.

To me… a drum brush sounds much like the combination of crackling leaves and “Jiffy Pop” popcorn! It is the best comparison that I can think of in my attempts to place a new sound from a new “noise maker”.

Adaptation

Having an acquired disability can “make” or “break” you. I remember when my husband and I first realized that my hearing loss was progressive. I was going to the audiologist about every six months as my hearing was noticeably worse. Holding an audiogram with visible, charted proof that you are losing your hearing is very sobering. It seemed as soon as I adapted to communicating at the current level of loss, I would again lose some more of my hearing. Eventually, I could hear very little in spite of two new BTE hearing aids.

Each time I learned to re-adjust I would try to remember what had worked well for me in the past. Having never been deaf before, I had no comparison. I could only remind myself that I needed to continue to be active and proactive in communication. It worked in my best interest to make my invisible disability – visible. I wore my hair up so that my colorful ear molds could be easily seen. I pointed to my mouth and asked for a repeat if I was having trouble hearing. If I could only make sense of PART of what was said, I would repeat that PART and ask for clarification of what I did not get. If the background noise was extreme, I would ask if we could move to a quieter location to finish the conversation. I tried desperately to remain upbeat and positive. The alternative was scary.

Desperation and Despair

At one point in the process of my becoming a deaf person, I had really lost all hope. I had just moved from North Carolina and was trying hard to not only adjust to a new job, a new level of hearing loss, and a new community, but I had lost every friend that had meant so much to me! My North Carolina friends found excuses not to visit and emails were many times lost in cyber space. I had a great deal of difficulty connecting with people at work and church in my new home. I felt alienated and alone. Couple this with a progressive hearing loss that eventually began to even effect how well I could communicate with my family, and you were looking at one WHIPPED puppy!

Instead of adapting and reaching out for help, I isolated myself and became very depressed. Early in 2003, I found that I was actually contemplating how to end my life. How did I get to this point? At what point had I “given up”? When had I decided to no longer attempt living in spite of a disability? I’m not 100% sure of when it all went wrong, but I suspect I knowingly or unintentionally stopped remembering how wonderful life is! My brain had so many wonderful memories of living a successful and abundant life, and yet I seemed incapable of accessing those memories! I’m very glad that God intervened through people in my life who recognized I had given up.

No Alternatives

There are not any alternatives to adaptation. Life can be… and many times IS hard. We must continue to adapt and “roll with the punches”. There are plenty of blessings and wonderful memories as well. Adapting means we deliberately adjust to change. It is a mindset and a choice.

Lose your job?

Work hard at enlisting the help of friends and acquaintances to help you network to find a new position. You will find your friendships strengthened and you may make a friend or two you didn’t know before. Often times God moves us to a new place to live and serve which ends up providing a great deal more happiness than what we enjoyed before. Most people find that they grow and mature as they re-work that old resume, touch base with contacts and put themselves out there to obtain interviews in their seeking employment.My husband recently went through this and even I noticed the growth in his life at the end of the journey. He is now much happier than he was prior to losing his job.

Lose a loved one?

It can be so hard to say goodbye to someone we care about. I cannot write much about this topic, for truthfully I have yet to experience the loss of someone very close to me. I have seen plenty of people in my life go through this even recently, however. Their lives are a testimony to ME whether they realize it or not. It isn’t a matter of “if” I will experience the loss of someone I love. It WILL happen. I am learning how it can affect a person, and observing God’s grace poured out on the lives of those who desperately need it!

I could go on and on about different things that can happen to a person that requires we adapt. However, I would be writing all day if I did that for in truth, life insists we all learn to adapt. There is no healthy alternative!

Denise Portis

© 2009 Hearing Loss Journal

The “Folly” of Allowing “Deaf” to Define You

Published on by hearingelmo3 Comments

Simba (My parent’s pooch!  He’s the smartest little thing and has made a great addition to their retired life in Florida!  He’s a Cock-a-Poo, and doesn’t look like ANY canine movie star!)

The Folly of Hollywood’s Influence

I love my mother.  Mom is one of my best friends.  But being a mom myself now, I can clearly see that my mother was extremely influenced by the canine stars she saw on television as she was growing up.  I can make this assumption with a great deal of confidence, based on the fact that she has had two “look-alike” dogs of her own through the years.  Prior to retiring to Florida, she talked my Dad into buying a boxer that bore an resemblance to “Pete” on “Little Rascals“.  I don’t see the resemblance.  After all, it is fairly obvious the circle around his eye was PAINTED on, and Mom’s boxer had no make-up whatsoever!  But “Pete” was in black & white!  So… who knows?

“Jingles” did not last very long as she was not a well-trained, super-star dog.  On the contrary, she was a rather destructive and ill-mannered dog.  She found a new home on a new farm with a family who had a little more patience.

Prior to “Jingles”, while I was still living at home on the ranch in Colorado, Mom talked Dad into buying a collie.  I guess Mom had a thing for “Lassie“.  I didn’t mind at all, as I thoroughly enjoyed watching not only the current “Lassie” series, but never missed a black and white re-run of the episodes Mom watched as a child.  Mom may have insisted on a pedigreed collie, but Dad insisted on the name.  “Jean’s Folly” was our … erm… COLLIE!  We called her “Folly” for short.  I wish I had a picture of Folly.  She was actually much prettier than Lassie!  She was the most beautiful collie I have EVER seen.

Living up to a Name

It turns out that Folly was aptly named.  It seemed she was incredibly stupid.  At least that is what we thought in the beginning…

In 1982, Folly was accidentally left outside when there were some stray dogs from neighboring ranches running around.  These dogs thought Folly was really beautiful too… at least that’s what I told myself because she ended up pregnant.  Folly was an outside dog; a different type of working dog than the one I have now.  Folly’s job was to keep the on-site livestock safe, keep coyotes from killing our cats, and made sure that snakes stayed out of the yard.  We didn’t interact with Folly as much as we should have.  Had we done so, we would have noticed that she was pregnant PRIOR to her having puppies.  It was at the birth of her puppies that I first began to suspect that Folly wasn’t as dumb as we first thought.  It was October, and we had our first snowfall on the ground.

Folly went under our picnic table which was next to the house, pulled out most of her own hair, and had puppies on the cold, hard ground.  (Pretty pitiful, huh?)  On the insistence of my three siblings and myself, we brought poor Folly and her puppies inside.  Their new make-shift quarters were under the rarely-used pool table downstairs in the game room.  Folly and the puppies did really well for a couple of weeks.

During those weeks, I had the opportunity to really get to know Folly better.  She would look at me with bright, inquisitive eyes, and watched everything I did with intelligence and attentiveness.  She loved for me to “visit” her under the table with she and her puppies.  (It’s fairly difficult for a teenage girl to fit under a pool table with a large collie and a litter of pups!  But I’m talented!)  I dutifully took her outside “when nature called”, and brought her back inside so that she could be with her puppies.  However, the cold snap lifted and the weather warmed up enough, that my Dad said Folly and her pups had to be moved to the barn.

I fixed one of the rooms in the barn up with plywood and bales of hay.  It was cozy and warm.  The first couple of days I locked Folly into the barn with the pups.  I think part of me was beginning to suspect something about Folly.  I started doing “tests” of my own to see if my “feeling” could produce enough evidence to allow me to verbalize my fears.

Not Dumb… Just Deaf

I would sneak up on Folly when she was asleep, and as long as I took the time to move slowly enough that no vibrations were caused by my boots on the ground, I was able to “scare the daylights out of her” 9 out of 10 times!  I would watch her looking out over the alfalfa field directly south of our home.  She seemed eager to continue her vigilance in keeping the coyotes away.  When I was ready to lock her back into the barn, I would call her… nearly screaming her name and she would continue her guard of the yard.  I found, however, that if I walked into her line of sight and called her name with a smile and a pat on my thigh… she would come running with the unadulterated joy of a dog when seeing someone in their family.

My conclusion?  Folly was deaf.  I mentioned it to my dad.  Dad is a quiet man who is at first pessimistic of others viewpoints until he acquires enough evidence to conclude that they may be right.  He would have made a great debater.  At supper several nights later, he announced in a matter-of-fact way that he thought Folly was deaf too.  To this day, I have no idea what kinds of “tests” he ran himself to come to that conclusion.

As we felt Folly was now comfortable in the barn with her puppies, we left the door open for her so that she could come and go as she pleased.  The puppies’ eyes were just beginning to open, and I couldn’t wait to get home from school each day to go visit them in the barn.  It’s a shame we didn’t leave that door open for the first time over a weekend.  I’m certain I would have noticed that the puppies were failing had I been able to spend more time with them.  But as it was, one evening a few days later, I went to visit them and found them all dead.  Every single one of them.  My parents were at work, so I called my grandfather on the phone in near hysterics.  He and my grandmother lived on the ranch a couple of miles east of us.  I don’t know that he completely understood what was wrong, but he certainly arrived quickly!

He determined that the puppies had not been fed.  He could tell that they hadn’t been cared for in a couple of days.  He asked me questions about what kind of mom Folly had been.  I explained to him how great she was with the puppies when inside the house, and that everything was fine when she was locked up in the barn with them.

My dad must have shared with him that she was deaf.  He concluded that if she couldn’t hear them she didn’t know they were hungry.  I was furious and shouted at both my grandfather and Folly.  How could she not know they needed fed? How could something so IMPORTANT escape her notice?  Did hearing the pups trigger true maternal love?  She couldn’t be deaf AND care for the puppies?  My grandfather insisted I was trying to make her out to be more than a dog.  Instincts only went so far.  Sometimes competing instincts were even more dangerous.  Folly’s instinct to be on guard of our yard and farm overrode her maternal instincts.  She was conditioned to SEE what needed done, not HEAR what needed done.  None of this made sense to me.  I’m ashamed to admit that all I felt for Folly after the day her puppies died was HATE.

To me, Folly was back to being “dumb”.  I looked at everything she did after that with the irrational thinking that mistakes she made were just plain stupid.  I conveniently seemed to forget that she was deaf – that she had a disability that for a DOG was almost catastrophic!  I ignored the impact her deafness would mean on how she was measured in value as a working dog on a ranch.  I ignored it all the way up until the day she walked right out in front of a pick-up truck she couldn’t hear, driven by a distraught neighbor who had no chance of stopping in time.

I grieved for Folly for a very long time.  Quiet, yet bitter tears drenched my pillow at night for several weeks.  I remember thinking, that of every bad thing that could possibly happen to someone or something, deafness had to be the equivalent to a death sentence.  It was for Folly’s puppies.  It was for Folly.

Life’s Little Ironies

My husband and I first began to realize I was losing my hearing when I was twenty-five years old.  My… ermm… puppies, were 2 months old and 13 months old.  I have probably thought about Folly every week since that first audiological appointment in 1991.

For me, my deafness does not define me.  It is simply who I am.  A cochlear implant does not negate my deafness.  Certainly, I am indeed “hearing again”, but it is not perfect hearing.  I will never have perfect hearing again this side of Heaven.

To “hear” and communicate well, I take advantage of the latest technology.  I try to eat right and get plenty of sleep.  I attend support groups with other late-deafened individuals.  When I can, I go to workshops and conferences for people with hearing loss in order to educate myself.  Folks?  I try really hard.  But at the end of the day, I’m still a deaf person!  Actually… at the end of the day when I take my cochlear implant off, I am literally a deaf person!  Smile!

And yet, I’m OK with that.  Learning to communicate differently has made communication BETTER for me.  I drop EVERYTHING to talk to people.  I look them in the eye; I process what they are saying.  I acknowledge when I’m not hearing well, nor understanding well.  There is nothing else on my mind when I talk to someone, other than what it is they are saying.  If anything else is on my mind, I immediately stop understanding.  I truly give people my undivided attention!

I realize that Folly was just a dog.  But I recognize the difference having a loving supportive family has meant.  I recognize that God has brought specific individuals, message boards, writers and speakers into my life to “grow me”.  I wish I had thought of ways that Folly could have lived her life in safety.  I wish I had not equated her disability with her intelligence.  It’s actually a surprise she lived as long as she did, when one considers the enormous number of dangerous possibilities for her demise on a working ranch.

I have thought of Folly more than I have any other dog I have ever owned.  It will likely surprise my family to even read this, for my thoughts were private up until now.  Perhaps I am finally coming to terms with what it means to have a disability and still have a productive and meaningful life.

I raised “puppies”, I teach wonderful, eager students, I have friends who are hearing and friends who are culturally Deaf.  I work hard to minister to a group of peers that are late-deafened.  My deafness does not “define” me.  My deafness is a blessing, and enriches my life.  I didn’t discover this quickly.  I had to become an “old dog” first!

Denise Portis

© 2008 Hearing Loss Journal