Team Chatter

Tags

Fidos For Freedom, hearing loss, Inc., invisible disability, invisible illness, Meniere's disease

In public, I talk to Chloe constantly. May 4th I learned what this is called…

Photo by Julie Wu, volunteer and therapy dog handler for Fidos For Freedom, Inc.

A trainer exited Pi’s Deli behind me and said, “Great team chatter”.

I’m always so eloquent. I responded, “Ummmmm”, with a questioning look that spoke volumes.

Fidos For Freedom’s trainers have had a LOT of practice and experience with people with hearing loss. She rephrased. “Good communication with your dog”.

Oh.

When I hear a “new for me” phrase, I am often scrambling to catch up to the conversation as I work to interpret the meaning. Having been partnered with Chloe since 2007, I think I can safely say I’m a veteran team. That doesn’t mean that I don’t still learn new things, however. Phrases like “team chatter” may be heard, but not understood until I spend a few minutes pondering it.

What does it mean?

Team chatter is important in a service dog team for two primary reasons. Team chatter keeps your dog’s attention on YOU if you use their name a great deal and talk to them. A second reason, however, is that service dogs need to know when they are doing something right! The tone and certain words connect with them.

This trainer may not have put two and two together like I did when preparing for this post. But the trainers use team chatter as well. When I did something right, this trainer told me so. If something needed polishing, she would tell me. She gave feedback throughout the certification segment we were doing that morning. She is a trainer and I am a client. However, we too, are a team. We are co-volunteers – even teammates in an organization we both love. Fidos For Freedom, Inc. (see http://www.fidosforfreedom.org/ for more information).

Why People with Invisible Disabilities Need Team Chatter

In psychology we use the phrase, words of affirmation, to explain the inherent need we have to receive “high 5′s” literally and figuratively.

Paul Hulijich explains, “The mind is very powerful, and it needs to be spoken to. We are all aware of the power of being told, for example, that we look well; it often immediately evokes the feeling of being well. We are influenced by what people say to us” (Hulijich, 2012, para. 3). Since I have had to learn to do a great number of things “differently”, it means a lot to me when a trainer, friend, or family member tell me that I handled something well.

At my daughter’s college graduation, May 11, 2013.

My husband praised me for how I chose to ascend and descend a number of steps in various arenas this last weekend. Even with Chloe in a close “heel”, I’m just not safe on steps in large cavernous – or open air – places. I didn’t make a big deal about it, only reminding Terry, my husband to either stand immediately in front of me, or behind me. Placing a hand on his shoulder is all I need to keep from falling when going down steps. Going up is a little trickier, but we still have a well-rehearsed plan. He told me, “You use steps with a lot more confidence now. You don’t even miss a beat”.

I don’t know about YOU, but it means a lot when someone notices what was once trial and error, becomes a well-polished, good habit. I need affirmation when I’m told that I pick up cues about my volume better. It means a lot when someone notices that I grin and advocate when having a near miss in a crowded hallway, and make it a learning opportunity.

One day last week, Chloe did not accompany me to work as she wasn’t feeling well. (She has chronic early morning acid reflux). I only had two classes that day and so opted to let her stay home with my husband since he was off. Just like any normal day, I dropped a number of things in the classroom. One student watched with wide eyes as I braced myself against a desk and used my foot to pick up a stack of quiz sheets with a rubber-band around them. “Oh my gosh, you do that without even thinking about it! You live YOU very well!”

I blushed but also BEAMED at the impromptu praise. What Greg said, echoed the beat of my heart. This is what I want – to live ME very well.

We Can Use Team Chatter too!

Do you have a hearing loss? Do you live with a balance disorder? Have you learned to navigate life with low vision? Do you have a chronic or invisible illness? Whether you are new to “the new you”, or a veteran, there are people around you who could use some team chatter.

I know, I know! It may not always seem as if they are ON YOUR TEAM, but there are still co-workers, friends, and family members who could benefit from being told when they are doing something RIGHT.

Sarah, a person with low vision, once asked me where her husband was. I pointed and said, “He’s right over there”. She reached up and grabbed my pointing arm and followed it with her hand in the direction I was pointing. Off she went in the RIGHT direction, leaving me pondering my own OOPS. After that, I did much better about responding with phrases like, “at your 9′ o’clock”; or, “over your left shoulder about 25 feet away”.

She noticed. “Denise, you do a great job at giving me directional assistance. It really helps!” I’ve tried to remember to do the same for the folks in my life.

“Thanks for re-phrasing that. I understood it perfectly the second time. You don’t even have to think about doing that for me now. Thanks!”

“I appreciate you habitually moving to allow me to stand next to the side when we get on the elevator. It really helps to have something to lean against”.

“Thanks for ignoring Chloe when we talk in the office. I know you love dogs, and because she knows you it can be hard to ignore that wag! It really helps me though, so thank you!”

As a person with both Meniere’s disease and hearing loss, I do a lot of reminding about what works well to assist me, and what does not. (This can be tricky because we don’t want to embarrass or offend someone!) Sometimes I feel like I’m constantly in “education mode”. Yet, we need to remember to tell folks around us when they get it right! It affirms what they do or say in interacting with us. Perhaps they even just need to hear that they “leave us be” in a healthy way! “Thank you for not assuming I needed help with that and waiting to see if I ASKED for help”.

I hope you will work to incorporate team chatter into your own relationships. Words of affirmation and open communication can be so important. Don’t assume others know when they are doing a good job. Let them know!

Hulijich, P. (2012). Affirmations. Psychology Today. Retrieved, May 12, 2012 from http://www.psychologytoday.com/blog/mind-wellness-awareness/201211/affirmations

Denise Portis

© 2013 Personal Hearing Loss Journal

Square Plates

Tags

cochlear implants, deafness, differently abled, disability, hearing loss, Meniere's disease

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

… TRIANGLE dinner plates.

Denise Portis

© 2013 Personal Hearing Loss Journal

 

 

 

 

Are Doctor’s Offices Truly Accessible?

Tags

cochlear implant, hearing loss, late-deafened, Meniere's disease

I 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

Unplug…

Tags

chronic illness, disability, hearing loss, invisible illness, Meniere's disease

In today’s world of media overload, with technology and electronics in every household, the word “unplug” usually means when an individual deliberately steps away from these items to recharge.

For many with chronic illness or invisible disability, to unplug might mean something different. Saturday night my small living room was seething with emotions. There were five adults, including myself, parked around a television watching the Ravens beat the Broncos. We had hoped. We had prayed. But all the experts had convinced us the Ravens didn’t stand a chance. To watch the game unfold and the Ravens take the win in double overtime, my senses were in crippling overload. Long ago I conceded using closed captions during a NFL football game. I admire and appreciate the hard work of those who work for the captioning organizations, but the captions really do interfere with watching sports as there is no “perfect” place to put the captions and not cover up a play or stats. So I was watching the game by only utilizing my cochlear implant and hearing aid.

I watched five minutes of the post-game show and quietly headed upstairs. Once in my bedroom, I flipped on the light and opened my Dry ‘n Store in one practiced motion. Off came my “ears”, off came my shoes, and I threw myself onto the bed with all the grace of a wet noodle. Chloe hopped up and snuggled close, perfectly content to escape all that testosterone downstairs. I think I laid there with my eyes closed for an hour – not napping – just coping. I needed the quiet. I love my bionic hearing, but there are times I literally suffer from sensory overload. My eyes, ears, brain, and yes VOICE were worn out. I needed to unplug.

There have been times I have pushed through that feeling of “I need to unplug” and only regretted my choice to do so. I am more prone to fall when worn out. I miss things when communicating. My speech actually deteriorates when I reach the breaking point. Hearing takes work – at least for me it does. You might not be able to tell by looking at me that I need a “senses” break because hearing loss and Meniere’s disease are both invisible. Goodwin and Morgan (2012) explain that, “many chronic illnesses have highly variable symptoms that are largely invisible to others. The symptoms can cause fatigue and pain, affect cognitive function, create sudden emotional shifts, and even impair speech“ (para. 6). It is in my best interest to know when I need to unplug.

I know many people with hearing loss who unplug in their own way. One bilateral friend takes long walks with just her camera. She has a real knack for connecting with nature and sharing that connection through her camera lens. I suspect it is her way of unplugging. She may have her “ears on” still, but nature’s melody is a distinctly different sound than what one hears in a crowded cafe or work environment. Another friend with bilateral cochlear implants actually takes yearly retreats. She not only unplugs, she truly isolates herself in order to fully rejuvenate and refresh her soul. Many with hearing loss, however, simply go to bed early. It doesn’t bother me at all that my family teases I’m the first one in bed every night. I require a full eight hours of sleep – hard to do in the day and age in which we live!

Use a Calendar

My calendar is very important to me. However, it is not because I forget appointments if I don’t schedule things carefully. My calendar is actually a tool I use to help me know when to unplug! By carefully tracking what I do in addition to just a normal workday, I can avoid serious physical and mental fatigue. Having Meniere’s disease means that I have to be responsible for how tired I allow myself to become. If I’m seriously fatigued and weak, I am more susceptible to falls and injury. With my doctor’s recent warning ringing in my ears about doing everything in my power to avoid anymore head injuries, I carefully plan each and every week. Many people with various disability or invisible illness must do the same. The Multiple Sclerosis Foundation Medical Advisory Board encourages us to be careful planners. “Conduct an energy audit. Ask yourself how much energy do I have? What time of day do I have the most energy? What time of day do I have the least energy? What do I want to do? What must be done? What can wait? Keep a journal and record your daily activities along with the times that you do them. This will enable you to recognize your patterns of fatigue more readily. Monitor these patterns and plan your day accordingly” (MS Foundation, 2009, para. 14).

When I see that a day is as full as I dare allow it to become, I block off any other available times. I know I will need the latitude to unplug if needed. I may even have to turn down opportunities to visit with a good friend, or going to something I would really like to do. My calendar enables me track what I know I’m capable of doing in any given day.

Using a calendar can also help people with invisible disability or chronic illness to determine what is really important. I have become an expert on running errands… making sure to do things all in the same area of town so that I do not have to make any special trips – which are time thieves. Having to do spur-of-the-moment errands may mean I do not get to do things that are really important to my mental, emotional and spiritual health. Morgenstern (2008) is adamant about controlling your schedule, and failure to do so creates a life that not only runs you ragged, but regularly throws you curve balls and prevents you from focusing on the things that matter most. For those of us who live with disability or invisible illness, this may mean we set ourselves up for injury, debilitating fatigue, mistakes, or relapse. Getting control of your schedule can only benefit you.

I hope you have learned to unplug when needed. One doesn’t need to lay in the dark, isolated from all sense-sapping triggers. You can relax on the deck with a cup of coffee. Take a bubble bath! Read a good book. Immerse yourself in a hobby. All of these things can help you unplug and recharge!

Denise Portis

© 2013 Personal Hearing Loss Journal

Goodwin, Stephanie A. and Morgan, Susanne (2012). Chronic Illness and the Academic Career. American Association of University Professors, May-June. Retrieved January 12, 2013 from http://www.aaup.org/article/chronic-illness-and-academic-career#.UPQg_mdyHTo

Morgenstern, Julie (2008). SHED your Stuff, Change Your Life. Fireside Publishers, New York.

Multiple Sclerosis Foundation (2009). Fighting Fatigue. Coping with Multiple Sclerosis, July issue. Retrieved January 14, 2013 from http://www.msfocus.org/article-details.aspx?articleID=48

Sunshine

Tags

cochlear implant, Ear Gear, hearing aid, late-deafened, Meniere's disease, Nucleus Freedom

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

What I SHOULD Have Said

Tags

hearing loss, Fidos For Freedom, Meniere's disease, Inc., invisible disabilities, invisible illness, chronic conditions

I’m not really a history buff like some of my siblings, but I do like to watch the occasional autobiographical movie or read books on real people. I have, however, always been an Abraham Lincoln fan. I’m so excited about the new movie coming out and hope it does not disappoint. (Lincoln – the trailer). Needless to say, I’m also a big fan of President Lincoln’s quotations. Many of them I have memorized from my childhood and throughout my life.

In preparing for this post, a quote of President Lincoln’s came to mind: “I will prepare and some day my chance will come.”

I’m a big fan of using hindsight to our advantage. One of my favorite training exercises at Fidos For Freedom, Inc., is role playing… actually putting ourselves in scenarios where we face incredulous, doubtful strangers, belligerent business owners, or even just curious but nosy bystanders. These exercises have allowed me to practice what I need to say – not IF – but WHEN I need to have the words to explain my need for Chloe. I know I may need to defend my right to mitigate my disability with an assistance dog.

Experience Can Be a Harsh Teacher

Did you ever have something happen that was totally unfair? Feelings of righteous indignation and self-preservation well up and literally choke the words right out of you? I’m one of those poor folks who rarely says what I should have said  at exactly the right moment. Instead, my feelings are hurt; or, I’m madder than a wet hen. Not… that I’ve ever seen a wet hen despite my childhood experiences of owning and caring for chickens, but I digress..

Ever replay a hurtful or confrontational conversation over and Over and OVER again in your head… thinking about what you SHOULD have said? Well I take Abraham Lincoln’s advice to heart. “I will prepare and some day my chance will come.” Now I’m the first to admit that one can perseverate on a past hurt and be much worse off than if you just let it go. I’m a planner though (at times to a fault).

If my feelings are just hurt and it is someone I don’t know well, I just let it go (though I may replay the entire horrible episode to my patient husband). If it is someone I have a relationship with, I may decide to let them know that I didn’t like how the conversation went and came away hurt and would like to discuss it some more. However, most of the things that hurt my feelings or ruffle my – erm – feathers, are comments from total strangers or mere acquaintances.

How many of you have heard these comments? :

But you don’t LOOK sick.

You were just fine yesterday. What’s wrong today?

You are feeling poorly AGAIN?

Are you ever well?

You seemed to hear me fine the other day on the phone.

Don’t you get tired of being so lethargic?

I think you are just low-energy.

You are such a drama queen!

Are you sure it isn’t all in your head?

I love my dog too, but I don’t self-diagnose a disability just so I can be with them all day.

Maybe you should see a counselor…

I knew you the first 20 years of your life. There was nothing wrong with you then!

Is this all for attention?

Don’t you worry how your family will feel having to pick up the slack?

People with invisible disabilities, illness or chronic conditions often LOOK just fine. Being late-deafened, I speak with little or any “deaf accent” or enunciation issues. With a cochlear implant and hearing aid (a bi-modal, hearing again peep with BLING), I often hear voices well unless there is a lot of background noise. If it is a sunny day, I not only may have very little “wobble” in my step, I may actually be able to move fast. So to look at me – well, I look fine! But on rainy days or in environments with tons of LOUD surround sound, vertigo can hit me like a freight train and cause me to walk as if I’m intoxicated. I usually clam up because if I speak I may vomit. (I’m serious…)

I have friends here in Maryland, and cyber friends I have come to know across the nation – many of whom are fellow bloggers. They have fibromyalgia and/or chronic fatigue syndrome. Some have assistance dogs, some do not. Some have been diagnosed with Lymes disease. Have you ever thought about how difficult it must be to have a chronic pain condition? And oh my goodness… talk about your invisible conditions! If you don’t know the person well enough to see the pain-filled eyes or pinched expression, you would never know that every step is excruciating – that even their clothing rubbing against their skin actually hurts.

Prepare – it Empowers

Those of you who live a life described above or know someone who does, my advice is to prepare. Use hindsight to your advantage. Think about an encounter that really hurt you – or made you squawk. Chances are, you will hear it again. (I know – GROAN – right?) Plan and prepare, even practice what you will say in the future should that same thing happen again. This can actually empower you to face that “next time” with a little more certainty and courage.

But Be Careful…

I do have some warnings, however. Even good things can become bad things.

1. Don’t be consumed by the preparation.

If all you think about is being prepared for a calm but meaningful/careful reprimand, you may unleash it with venom or saccharin sweetness. Your intent becomes a premeditated choice to wound. You end up saying the wrong thing or say it unkindly and in an offensive, war-like manner.

It could also become a set-up or scenario of revenge. Trust me. You do NOT want to live that way. (Tried it – not a winner any way you look at it).

Use your time wisely in reflection and preparation, but then let it go. If you are thinking about it constantly it should “wave the red flags” for you that it has become an obsession instead of a tool to develop positive responses.

2. Don’t look for what is not there.

After wobbling into the edge of the stove and spilling my coffee, I heard my husband sigh beside me. I turned (aimed) and yelled, “What? You think I like spilling everything I carry? You think I enjoy getting burned? Do you think I…”

He cut me off with a gentle squeeze of my arm. “Denise. I sighed because someone ate all my Lucky Charms.”

OH.

If you are reading this and KNOW someone who has an invisible condition, may I give you some advice? I know it must be frustrating to not ever really understand HOW to help or WHEN to help. But the best thing you can do? Listen and believe.

Denise Portis

© 2012 Personal Hearing Loss Journal

 

 

Note to Self: :-)

Tags

hearing loss, invisible disabilities, invisible illness, Meniere's disease

Sometimes I have to actually remind myself to smile. Don’t get me wrong! I have plenty to smile about! I have healthy kids who just happen to be great human beings. I’m married to the love of my life (26 years!). In spite of hearing loss and Meniere’s disease I have what I feel like is a good “game plan”. I have coping skills that work – most of the time. But you know something? I still forget to smile.

Why I Forget…

1. I get too busy

I stay busy to give myself a sense of purpose. A bored Denise, one with too much time on my hands, is a depressed Denise. It’s not that I don’t take the necessary time to decompress, meditate, and think deeply. I do! But there is a “fine line” between taking time to do these things and having too much time to do these things.

Staying busy helps me to feel purposeful and even necessary. I hope to one day get to the point where I can be less busy and still feel purposeful. But heck… even my favorite scripture verses and quotes are ones about being productive and busy! However, I can get SO busy, I forget to actually enjoy the things I am doing. I forget to smile. Happiness is often a CHOICE, but if I get too busy I may forget to make that choice.

2. I’m hanging out with negative people

Sometimes it cannot be helped. You may work with negative people. Geesh. You may LIVE with negative people. It takes a special kind of person for that not to rub off on you eventually. Ever walk into a room extremely content and happy with life and run into a sour puss? Negative vibes may just ooze out of their pores. And darn, but if they didn’t set their sights on you and pin you down to complain. I’ve left the company of folks feeling shell-shocked. It can be hard to be with these people, yet I also believe that I need to take opportunities to minister to them if I can. It may be just listening. It may be that I can let them know I’ll pray for them. Yet, I certainly do not seek these people out to deliberately spend time with them.

Back when letters were still written (instead of email or FaceBook messages), I remember cringing when I would get a letter from a “certain someone”. Their news was never good news. Talk about a wet blanket. It was hard to plow through all the negative lines penned by this very sad person, but I also felt compassion for them as I knew it had to be a hard way to live.

The thing about negativity though is that it is very contagious. It matters not if you’ve recently been vaccinated. Few of us have the antibodies to fight off this contagious infection if we have to be with folks like this. I really do try to limit what time I spend with people like this. It can be hard if you must see them often though. I have a friend who is married to a negative soul. She loves him. But with premeditation, she must find time away from him during the week to spend time with people who are not like he is. He has become “less” negative through the years, but I doubt he’ll ever change completely. To combat being drug down into the same pity parties, she has to find people to insulate her to negative thinking. It works for her.

Why It Can be Hard to Smile, but Necessary

One of my good friends has fibromyalgia. Frankly, it is really difficult for her to smile on days her body is in a full “fibro flare”. She does some things to help during these times as she doesn’t want to go throughout the day ROARING at everyone. She loves eating a Wendy’s Frosty and she only has one when she is having a bad pain day. She has “feel good” music that she listens to in the car if she has to go out. She has a stack of favorite books that she only reads when she has to curl up into a ball of pain and “deal with it”. She has cats and claims they are therapeutic. She has a short list of people she will call when she is sobbing and needs a smile. She has a plan. She knows how important it is to smile through the pain (her words, not mine).

Earlier I said that happiness is a choice. This is actually the title of one of my favorite books by Minirth & Meier. Joy is different than happiness. I believe that joy is a heart emotion. We can be sad at the graveside of a loved one, with tears raining down our faces, yet feel joy. Joy for the life they lived and memories you have with them.  A person can have joy and have just lost their job, their boyfriend, or their goldfish. But happiness? Happiness is a choice. Sometimes we have to choose to be happy EVEN WHEN IT DOESN’T MAKE SENSE.

This doesn’t mean it is fake. A deliberate choice to smile and be happy is simply a proactive way to entice our thinker to change our feeler. It’s not magic. It’s not a secret formula. Nope! I am not saying that we should never belly-ache, cry, scream, or throw things. (Well, perhaps the last we can let go of forever, hmmm?)

Most folks are about as happy as they make up their minds to be.
    Abraham Lincoln
    16th president of US (1809 – 1865)

I don’t know your story. I do not walk in your shoes. I do know that my own shoes are not always comfortable. They can leave blisters. We can get in a habit of thinking negatively and in frowning. I know I have done this myself. I may have to leave myself notes or messages to “smile more”.

I don’t always do this perfectly. Sometimes invisible illness and disability wipe out my happiness savings account. At various times, I have had to seek counseling to really get back on track. Perhaps I’ve let myself go to long without smiling? There’s no shame in having to receive help in remembering HOW and WHY to smile.

Smiling may be like the Red Cross to a person in need. Smiling may make someone’s day. Someone may be having a bigger poopy day than you are. Even my dogs respond to a smile with a tail wag. Frankly? I like to see other folk’s tails wag. Smiling sends a message – a positive one. Maybe I’ve taken too many classes on Cognitive Psychology, but I truly believe how we think can change how we feel. So I believe we have to really work on thinking positively. I try to make my face match my self talk. Smile, Denise… smile! Make it a habit and you may eventually feel the corners of your heart tug up in an answering grin as well.

I’ll leave you with an oldie – but one I think says a great deal about why we should smile. You may even need to make a note to “self”.

Denise Portis

© 2012 Personal Hearing Loss Journal

They May Not Get It

Tags

acquired disabilities, chronic illness, disabilities, disability, hearing loss, invisible illness, Meniere's disease

(Hey… I’m not an artist! But have you ever felt this way?)

One of the questions I am asked the most by folks who contact Hearing Elmo, is “Why doesn’t my family accept and understand who I am NOW?”

Before I even begin writing, let me express my hope that many of you will respond and share as I am very aware I do not have all the answers.

Why It Hurts

1. It hurts because the transition from “normal” to where you are was painful.

The school of hard knocks is – well – hard. Acquired disabilities and invisible/chronic illness are not easy to get use to when they first change a person. The journey from diagnosis to acceptance is a hard one. It hopefully has made us “better” and not “bitter”. I can attest to feeling stronger, more confident, and much more in tune with who I really am post-disability. Some of us have progressive symptoms and illnesses. We may adjust, only to have to do so again in a year or so. This too can grow us. But honey? It isn’t easy.

However, BECAUSE it was hard, it is hurtful when folks who knew us WHEN (back before our diagnosis), don’t accept or try to understand who we are NOW. We are still the same people. Our personalities have not changed. Our strengths and weaknesses are all still present – although you may have developed some new strengths because of your life path. So it is difficult when family members may sometimes be the hardest to teach how to talk to us now that we have a hearing loss. Or perhaps you are frustrated because a family reunion at a theme park is not ideal for you because you cannot ride any of the rides. Maybe you are utilizing a wheelchair, walker, or cane. A picnic and hike may not be a good way for you and your siblings to catch up – even if it has been a year since you’ve seen each other.

It’s not like we want recognition for the pain we’ve experienced. We aren’t looking for a medal. However, seeing any eye rolls or hearing frustrated sighs serve only to remind us our family

STILL

DOESN’T

GET

IT.

2. You expect your family members to care enough to accept you.

It’s not wedding vows. “In sickness and in health, for richer or for poorer…” But we have a reasonable expectation that our family members are going to love us and be there for us regardless. It doesn’t matter if we acquire a disability. We are still the same person. If Lymes disease has you aching and feverish a week out of every month, we expect compassion, not disdain. If CFS or MS has you weary, tired, and feeling as energetic as a centenarian, you expect understanding and maybe an offer to run an errand for you. If your eyesight is worsening due to various illness or disorders, you never expect frustrated outbursts when you explain you don’t have a ride to go to your nephew’s graduation.

But friends? Family members can need educating. Advocacy may begin at home. We wish it wasn’t necessary, but it may be very necessary. My kids grew up with me at best, hard-of-hearing. My husband, however, knew me before hearing loss. So I have to be willing to tell (nicely) him what works and what doesn’t. Don’t be surprised if it takes numerous lessons. Some heads are thicker than others.

What to Do

Talk to them. I’d elaborate, but honestly? You need to talk to them. Explain how you feel. Be willing to be vulnerable. Start with phrases that explain specifics and not general accusations. Example:

“When you sigh as I wobble into a shelf at the store it really hurts my feelings. I can’t help it when my world ‘twirls’. It’s hard enough to face the stares and hear the whispered remarks from strangers. I expect better from you. I expect your support.”

They May Never Get it

We can choose our friends, but we don’t choose our family. Blood is blood and it simply cannot be changed. However, you do not have to put up with people who ridicule you or try to injure you with words. You do not have to deliberately spend time with people who only make you feel worse. Sometimes? Sometimes those toxic people are family members. I hate it for you. I hate it for me. But it can be the painful truth.

Sometimes those friends that we choose? They become family. Maybe not by blood. Perhaps not by legal adoption. But folks who encourage us, lift us up, make us better people, understand, lend compassion and energy? They can become like family members. My heart’s desire is that you will find some folks like this if you haven’t already.

I welcome your thoughts on this. Knowing family members may grieve the person they once knew, or have trouble adjusting to the fact you are “differently abled” is important. Be patient. But also put healthy boundaries in place to keep unhealthy people from de-railing your progress with your own adjustments.

Denise Portis

© 2012 Personal Hearing Loss Journal

It’s Not Easy Being Green

Tags

ADA, assistance dogs, deafness, hearing loss, Meniere's disease, service dogs

I love Kermit. For the record, I loved Kermit before Miss Piggy loved Kermit. In the early 70′s, Kermit first poignantly croaked out that “it’s not easy being green”. Being green was something he could not help. It simply was.

This song has since been associated with people lamenting their own self-identity, yet coming to terms with “it being what it is”. By the end of the song, Kermit admits it’s OK to be green and that it is how he wants to be.

Am I OK Being This Way?

Something I have struggled with in acceptance of acquired disabilities is “the new me”. You see… I wasn’t born green. I can’t even say the transformation was similar to the beautiful miracle and mystery of a caterpillar changing into a butterfly.

And yet… it’s not like I asked to be late-deafened. It’s not like I asked to have a balance disorder like Meniere’s disease. But just like Kermit being green, it is what it is. There is no changing it.

So if this is me now, am I OK with it? Anyone with acquired disabilities ever struggle with that acquisition? If I asked for a show of hands, you’d first notice my own raised palm. I think you’d also notice a great number of hands. You aren’t alone.

Like many of you, I feel good about who I am much of the time. But I’d be lying if I said it’s always easy to be me. It’s not. So what to do?

Acceptance ≠ Resignation

I’ve never heard a person with acquired disability or chronic illness say, “This is easy”. It’s not. Yet do you know what I have discovered? I have this fuzzy, old memory of “life before disability” and IT STILL WASN’T EASY. My friends? Life is not easy. If you haven’t figured that out yet then you are still very young. Or, perhaps you are a frog.

I am discovering that acceptance of where I am (or even where I may end up), does not mean that I give up. Nor does it mean that I am resigned to an unhappy, unfulfilled life with no chance of ever giving back or having a purpose.

I get some “flack” with some of my readers about using the word “disability”. Rest assured, I welcome ALL opinions and discussion about the posts here at Hearing Elmo, as do the guest writers who participate. Some have suggested that using the term disability lowers one’s expectations and influences self-esteem. I understand the argument and point of view by those who believe this. I use the term because it is the terminology used by the ADA which ultimately protects my rights as a person with disability. It is about my freedom as a person who negotiates life a little differently. You may use disabled, differently-abled, special challenges, etc. In the end though it is green; though some may call it lime, olive, or chartreuse.

So today, August, 20, 2012, I am a person with disabilities. It’s not easy. But it isn’t impossible. Bottom line, because of who I am today, I compromise. I’m going to Hershey Park with a big group of couples from our church. I’m the self-designated pocket book holder. I won’t be riding any rides. I cannot. But I anticipate a day of fun and fellowship with other folks my age. I don’t choose not to go. For me, that would be giving up so it is not an option.

I don’t use the phone well, but I can use captioned phones, assistive technology, and my cochlear implant to make do. I use email a lot – and yes, FaceBook too. I walk like the world is in motion – especially on rainy days. Yes, yes, I know. The world IS in motion, but trust me! My earth’s rotation is faster than YOUR earth’s rotation. So I often walk with a cane. I have an assistance dog who counter-balances, and retrieves things I drop. I say, “Whoa!” a lot.

Don’t Pin a Super Hero Cape on Me!

Before you pin a super hero cape on me, please know that I don’t always have good days. I don’t always wake up and believe I can take on the world. I do not always look in the mirror and like what I see. There are times I worry about where I am in terms of what I can and cannot do. What is important, I believe, is what you do after having those very normal feelings. Worried? Totally normal. Depressed? This can be a very normal reaction. Pissed? Believe it not, being angry is a normal response to acquired disability. When you STAY worried, depressed, or pissed it becomes a problem. Don’t be afraid to talk to others. Perhaps you need to see a counselor. Maybe you need to do something just for YOU to work off some of that negative steam.

You will never hear me say it’s easy being green. It’s not. But acceptance of where we are allows us to then LIVE and even to give back – to be productive and have a life of purpose. Just like Kermit croaks, we may not be sparkly and flashy like others. Within each of us is the desire to discover and acknowledge that our being green – is OK. Perhaps even good.

I welcome your thoughts on this!

Denise Portis

© 2012 Personal Hearing Loss Journal

It’s Not Easy Being Green lyrics

It’s not that easy being green
Having to spend each day the color of the leaves.
When I think it could be nicer
being red or yellow or gold
or something much more colorful like that.

It’s not that easy being green.
It seems you blend in with so many other ordinary things.
And people tend to pass you over
’cause you’re not standing out like flashy sparkles in the water
or stars in the sky.

But green’s the color of Spring.
And green can be cool and friendly-like.
And green can be big
like an ocean
or important like a mountain
or tall like a tree.

When green is all there is to be
It could make you wonder why, but why wonder why?
Wonder, I am green and it’ll do fine
it’s beautiful!
And I think it’s what I want to be.

Unexpected Perk, or Bother?

Tags

Assistance Dog Awareness Week, assistance dogs, Fidos For Freedom, hearing loss, Meniere's disease, service dogs

Several of the emails I receive through Hearing Elmo each week are questions about assistance dogs. This week is actually “Assistance Dog Awareness Week“, so I wanted to take a few minutes to talk about life with an Assistance Dog.

The first thing I always tell people who have questions is that if you are not prepared for the fact that an assistance dog will draw attention to you, then PREPARE YOURSELF. More importantly? If you are not comfortable with the attention, then an assistance dog is not for you.

Because I have a hearing loss and because I don’t hear well in stores or crowded places, I am oblivious to all the comments my family members DO hear. “Look at the dog!” “Oh look, a working dog!” “Why is that dog in here?” “Mom, why does that lady have a dog in here and why is it wearing a saddle?”

Assistance dogs lend independence to those who chose to mitigate their disability or illness with these special canines. I never worry about missing a phone call. I can do laundry without assistance from a human family member. I no longer burn supper. I always know when someone is at the door. I can shop and go out in public and never worry about not being able to bend and pick something up – important as I constantly drop things.

Some things you may not know that are actually perks of having an assistance dog?

1. Pre-Chloe, a routine doctor’s visit would result in the 3rd degree about why I always have so many bruises. It can be tiresome to field questions about whether or not I’m in an abusive relationship, when I simply fall or run into things a great deal because of Meniere’s disease. Now, Chloe lends legitimacy to those bruises. She reminds doctors why I have bruises because folks don’t go to the doctor with a dog partner if they didn’t need the assistance.

2. I’m rarely bumped into or shoved out of the way now in public. When you don’t hear well in these venues, impatient shoppers who don’t give a “fig” about why you are standing looking at dancing electronic flowers in the garden department, assume I’m being stubborn about moving to let them by. Now they see Chloe and if she doesn’t notice them and cue me, they carefully maneuver around me.

3. I never receive comments like “It’s a little early to be drinking isn’t it?” or “You should be ashamed of yourself” when I’m seen weaving a bit on rainy weather days (comments that have really been made). In the past, if I slammed into an end cap in a store, those around me assumed I was high or drunk. Now people see Chloe and think OR SAY, “Gee, it’s great she has that dog to help her”.

4. I’ve grabbed onto a fellow client’s scooter before (sorry, John) when I almost fell down. He understood. However, when what you grab is a nearby shopping cart, others aren’t as understanding. I once had a grandmotherly person stick her finger in my face and sternly say, “Let… GO”. I mumbled an apology and went my way. Now that I have Chloe, the most anyone will say in a “near swoon” moment is “Are you OK?”

Assistance dogs help people with hearing loss, mobility issues, seizure alert, PTSD, diabetes/blood sugar alerts, vision loss, balance problems, fine motor skill difficulties, and much more. I hope the next time you see someone with an assistance dog in public that you maybe take a minute and tell them that you think their independence with their canine is a great testament to courageous people. Don’t pet the dog or distract it though (grin).

Denise Portis

© 2012 Personal Hearing Loss Journal