Category: vertigo

A Pocketknife to Clean Your Nails

Published on by hearingelmo2 Comments

pocketknife

ABOVE… My dad in 2011 when he visited Gettysburg with us.

Do you know every time I retrieve a nail file to smooth, clean, or file my nails I think of my dad? Isn’t it funny the kinds of things that will recall a memory for us? Not the kind of recall that triggers our sympathetic nervous system and launches a flashback in folks who suffer from PTSD. Instead, the kind of recall that knocks on the door of our heart with a “feel good” memory. The memory replays a specific conversation or event. For me, when I use a nail file I vividly recall how my dad would clean his nails with a pocketknife.

I couldn’t have been more than 7 or 8-years-old, for we had not yet returned to the family farm. My dad still worked for International Harvester at the time. One day I sat watching him clean his nails with a pocketknife.

“Why do you use your knife to clean your nails?”

Dad continued to clean his nails and thought about his reply. The man never just “spoke off the cuff”. He responded after a bit, “It does the job”.

“Well, will you clean MY nails?”

With less thought he replied, “I can’t. I can’t tell where your nail stops and your finger starts”. He scooted closer to allow me to see from a different angle how he was using his knife to clean up under the nail. I may have been young, but I immediately grasped why he couldn’t clean MY nails with this unconventional method.

Although I never could bring myself to clean my own nails with a pocketknife, I learned over the years that one can do things just as well by means of unconventional tools and methods. I would not have understood if someone had tried to tell me that I would eventually become deaf and develop Meniere’s disease – a balance disorder, and that by doing so I would have to adopt some new means to navigate my world safely.

Works For Me – But Maybe Not for you

I suppose one of my biggest pet peeves is when folks start dictating to someone who shares a diagnosis how they MUST go about treating that disease or disorder. Just because something works well for YOU, does not mean it will work well for someone else. This doesn’t mean we shouldn’t be willing to tell our story and share what works for us. Peer networks and support groups are invaluable in my opinion. However if I chose to use a nail file to clean my nails, and you choose a pocketknife, all that should be celebrated is that the end result yields positive benefits for us both. Clean nails are clean nails no matter how they got that way.

That doesn’t mean the process to clean nails is always easy. I have to sit to brush my teeth. That toothbrush swishing around in my head will make me pass out if I do not do so from a seated position. I never could sit on the lid of the commode to brush my TEETH. So I step into the bedroom and sit on the hope chest to brush my teeth. I have to be sure to keep my mouth closed so that there is no splatter. Ewww, right? This last week as I was sitting there brushing my teeth, it just hit me wrong. Here I was 47 years old and unable to brush my freakin’ teeth over a freakin’ sink like a normal – erm – FREAK! So…

I started crying.

My husband stepped into the bedroom. I can’t imagine what he saw. Here is the wife sitting and brushing her teeth, sobbing her eyeballs out, toothpaste now EVERYWHERE, including dribbling down her quivering chin. He calmly said, “You OK?”

Did I look OK? Alright, yuppers… I didn’t actually WANT his help. I just wanted to finish brushing my teeth. Those FREAKIN’ ones…

When a person with disability or chronic illness finds a way that works for THEM, it doesn’t mean it is easy. But this is why we are not disABLED. We are differently-abled. It is quite a cognitive and emotional boost to discover you can still enjoy something you did before – only in a new way. It may look strange, novel, or genius… but the reality is “it gets it done”. Yet what I find works for me, may not work for someone else with Meniere’s disease. I cannot safely clean their nails with my pocketknife.

Celebrate the Day

Gee, we live in a wonderful age of technology! When I think about the miracle in that I’m hearing again bionically, and all the cool tools available to me through simple apps on my iPhone, or special assistive technology, I get goosebumps! I live in a country where service dogs OTHER THAN guide dogs are fairly common. Email and texting – two communication devices I utilize frequently, are favored among the NORMAL hearing population. This makes my life so much easier!

Folks with mobility issues, learning challenges, hearing loss, chronic illness, and various disorders have options available here in the U.S. that we did not have 30 years ago – or even 10 years ago! Yet some of the things we learn to do are through our own ingenuity! I have quite literally patted myself on the back and mentally “high 5’d” myself when I discover a new way of doing things. To you being able to do the laundry without actually having to change the altitude of your head is not very impressive. But to me? This is a “WOO-HOO” discovery. But the proper lean formation, use of step-stool and service dog work for me. They may not work for you if you, too, have Meniere’s disease. But be willing to share ideas with each other without dictating proper protocol. The end goal is clean nails after all.

Denise Portis

©2013 Personal Hearing Loss Journal

There’s a Goldfish in Mine!

Published on by hearingelmo5 Comments
Half empty, or half full? Well MINE has a goldfish in it.
Half empty, or half full? Well MINE has a goldfish in it.

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

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

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

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

My Goldfish

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

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

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

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

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

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

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

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

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

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

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

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

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

(University of Washington, 2013)

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

Denise Portis

© 2013 Personal Hearing Loss Journal

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

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

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

 

Team Chatter

Published on by hearingelmo5 Comments
In public, I talk to Chloe constantly. May 4th I learned what this is called...
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.
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

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

Square plates. I WANT THEM.

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

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

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

We May be the Same – But We’re NOT

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

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

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

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

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

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

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

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

by 10 Strawberry Street
by 10 Strawberry Street

… TRIANGLE dinner plates.

Denise Portis

© 2013 Personal Hearing Loss Journal

 

 

 

 

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

Cut ‘Em Some Slack

Published on by hearingelmo6 Comments
At the October 2012 Stroll 'n Roll Event
At the October 2012 Stroll ‘n Roll Event

Every once in awhile, something happens that really “jerks the rug out from under me” in regards to disability and invisible illness. Hearing Elmo, numerous support and community service groups, and strong connections with others who GET IT, usually keep me cruising along with optimism and a healthy passion for life. However, once in awhile something may happen and I ALLOW it to undermine my confidence and throw me for a loop.

About a month ago I was at church and turned to walk out of a small group study into the foyer. A person I see every single Sunday stuck out their hand and shook mine saying, “Is this your new dog?” Because I have a hearing loss, I default to a specific response when I hear something that I know cannot be right. I’m desperate to clear up what my ears MUST have misunderstood so I am eloquent in my response:

“HUH?” I asked with big eyes.

He repeated, “Is this your new service dog?”

I stammered and was able to eek out, “No, I’ve had Chloe for almost 6 years now” and walked/wobbled away as quickly as I could. I could hear him still talking and looking uncomfortable (I’m sure I looked completely shell-shocked), but I wasn’t going to stand around and “play nice” when I felt truly sucker-punched! I made my way to the car and sat waiting for my husband, trying to make sense of what I’d just heard.

Prior to this I had missed a Sunday. Chloe had been sick one weekend (something that happens as she is in contact with so many things a pet is not) and having been up all night, I skipped church with her. Had this church leader asked this because Terry probably informed him I was gone because of a sick pup and he assumed much more than what was going on? If he sees me each and every Sunday, how do you not recognize the bright, red dog who has been my partner for almost 6 years? How in the world can someone get a specially trained service dog so quickly even if you DID have to suddenly retire another dog? Did he not know it took me 15 months of training to even get matched with Chloe? You don’t slap a vest on a pet dog and call it a service dog. These dogs are tested for temperament, trained for public access, and trained to perform specific tasks. It takes years and thousands of dollars! All these questions whirled through my head.

I’ll be honest with you and admit…

I WAS MAD. After that though I was actually very hurt. A couple of weeks later I finally ‘fessed up to my husband about what happened at church. Small miracle THAT to keep it quiet from him that long – but proof positive how deeply this had affected me.

There are some real perks to being married to a psychologist. Long story – short,  after discussing all the reasons this person must have misunderstood what was going on in my life, we agreed that some people just don’t get it. This doesn’t mean they don’t CARE. They just don’t get it. My response has to be – CUT ‘EM SOME SLACK.

Even though this person is in church leadership and sees me every Sunday, to my knowledge they do not have anyone close to them who lives with disability or invisible/chronic illness. I don’t think they even own a pet dog and I’m probably the only one they know with a service dog. We don’t hang out. I don’t share my life with them. (They don’t read Hearing Elmo – smile).

You are going to have people in your life you simply must, “cut ’em some slack”. Maybe they are a co-worker that you don’t work with very often – maybe only a couple of times a month. Maybe it is a cashier at a grocery store who you occasionally see when you are in her line; or, perhaps a bank teller, physicians assistant at a doctor’s office, or UPS man ringing your doorbell.

Don’t get me wrong. I’m the first one to encourage folks to educate in a proactive and positive way, how best to communicate, or assist (if needed). However, the people you take the time to share how best to interact with you, are folks you have a more intimate relationship with and see frequently. Close co-workers, friends, parents of your KID’S friends, people you see more often and converse with a lot… these are folks you are proactive with and to whom you communicate your needs. They very likely will care enough to ask YOU how best to assist or communicate. This means there are plenty of folks you’ve left out of the loop

on purpose.

They don’t need to know the details. You may have a relationship with them, but it is not a close relationship. I, for example, do not need to let a church leader know how long it took me to get matched with Chloe, nor how often we continue to train at Fidos For Freedom to polish and perfect our skills each month. We make eye contact and smile once a week. We may shake hands one or two times a month. This person does not need to know how badly he erred, nor do I need to take him to task for being clueless about something I’ve not invited him to know about regarding ME.

There are folks at work, church, and whom I interact with often enough that they have learned how best to communicate with me. It may be a friend inviting me over to her very quiet, empty house to catch up! It may be a nurse I see often at my primary care doctor who quickly re-reads the bookmark I asked to be stapled in my chart that reminds her I need her to face me. It reminds her I have Chloe so she helps me make sure Chloe doesn’t have her paws on the scale when I’m weighed (seriously, right?). It may be the lady I see every morning walking her dog who use to act hurt when she struck up a conversation with me and I didn’t hear her at first. Now she stands nearer and faces me and we talk about the weather or our families as we “potty our dogs” before heading out! It may be the friend in small group at church who knows I’m having a really bad balance day. As I sit in the back out of the way, she stops to confirm, “So if you pass out… I keep everyone from calling 9-1-1, and just get Terry, right?” It may be the co-worker I see every day while retrieving my mail from the Arts & Sciences department. Our boxes are next to each other and it stood to reason that I explain I only need her to get my attention first before speaking…

You know who needs to have a more clear idea of “who you are”. But there are plenty of people we need to cut some slack. We just do not see them frequently enough to take the time to give them our life story (smile). You know the difference. I’m not saying it is EASY when misunderstood. I felt mad, then hurt, then filled with righteous indignation, bent on educating someone who really isn’t a part of my life. I had to let it go.

I’m learning a life worth living is all about choosing the battles and knowing when to take a stand. We learn to determine who to take to task and who to cut some slack. We never stop learning!

Denise Portis

© 2013 Personal Hearing Loss Journal

 

We Need Them

Published on by hearingelmo3 Comments

20121223-182709.jpg
With 3 of my 4 “heartstrings”, a group of cochlear implant ladies – some who also have Meniere’s – who connected through our hearing loss.

I am visiting my parents in Florida as I write this. I haven’t seen them in over a year, so with a lot of cajoling, I talked my husband into giving up a week of his vacation time to go see his in-laws. We went to church with them Sunday morning, and I expected a “Christmas Sermon”… not that this is a bad thing. Their pastor, however, mentioned some things that I had never thought about before, and at my age I was surprised about being made to THINK about some new things regarding the Christmas story.

He read from Luke and brought up that Mary, mother of Jesus, went to stay with friend and cousin, Elizabeth. This was right after Gabriel told her, “Guess what? You will become pregnant”. In that time a 14 or 15-year-old betrothed virgin couldn’t very well go tell mom, dad, and fiancé that she was pregnant. Women were stoned for that… not that they would have ever believed her “I’m still a virgin” story anyway. So off she went to see Elizabeth. Gabriel told her that Elizabeth, too, was miraculously pregnant – simply in a different way. Elizabeth was far past child-bearing age. Her pregnancy was also a miracle. Perhaps Gabriel was giving a hint… GO SEE HER. The pastor suggested Mary NEEDED a friend and someone who would understand. God knew this. Gabriel knew this. Mary needed someone who was pregnant that shouldn’t/couldn’t be, and someone visited by an angel. She needed a friend who was going through similar challenges.

Do We Need Friends?

I have friends from my childhood. I have friends at work. I have friends at church. But do you know the friends I depend on the most are those who struggle with invisible illness or disabilities? Like Mary seeking out a friend and confidant who was also miraculously pregnant, I have sought and found friends who are “differently abled”, who face each and every day with challenges others simply do not have.

Abraham Maslow was one of the first psychologists to suggest we need relationships; we need FRIENDS. Cherry (2012) writes of Maslow’s Hierarchy of Needs, “Relationships such as friendships, romantic attachments, and families help fulfill this need for companionship and acceptance, as does involvement in social, community, or religious groups” (para. 6). Many professionals agree, we need friends.

I have friends that are different than me in personality, beliefs, politics, and culture. Despite these differences, they are my friend. When I’m having a really bad “tilt a whirl” kind of day, falling and bruising, and frankly SICK TO DEATH of having to deal with it all, these friends can sympathize. Yet, the friends I seek out to belly-ache, ask for advice, or beg for prayer even, are those who can EMPATHIZE.

“Empathy is the ability to mutually experience the thoughts, emotions, and direct experience of others. It goes beyond sympathy, which is a feeling of care and understanding for the suffering of others. Both words have similar usage but differ in their emotional meaning” (Difference and Comparison, 2012). My closest friends are those who can empathize. They “get it”.

People with invisible illness or disability often fall into a dangerous, self-imposed isolation. Rubinstein (2012) suggests that there is a difference between solitude and isolation. Solitude is healthy, something most of us do not take the time for, missing out on opportunities to meditate and re-charge. However, isolation is different. It is a negative thing… “We don’t feel better by spending time alone, or if we do, it is only that our anxiety about being around people is quelled” (Rubinstein, 2012, para. 2).

When my progressive hearing loss began to cause significant communication issues, I slowly but surely began to isolate myself. It took an “intervention” of sorts to wake me up to what I was doing. We may isolate from friends and family, all the while trying to convince ourselves that by doing so we help others as well.

“When I move to fast and pass out, it only upsets others, which isn’t fair to them.”
“I hate being trouble to anyone. Best I stay home.”
“My disability makes folks uncomfortable. I’m doing everyone a favor by not participating.”

I know some folks with logical reasons and sound argument for why they do not need friends “post-invisible illness or disability”. Have you ever thought, however, that even if you are better off you are robbing another of the gift of your own friendship? There are others dealing with invisible illness. If you do not make yourself available, you may miss opportunities to empathize and connect with others like yourself. Who better to recognize another with invisible or chronic health concerns, than someone who lives the same?

We need friends. Others need the gift of your own friendship. Make yourself available!

Denise Portis

Cherry, Kendra (2012). Hierarchy of Needs: The five levels of Maslow’s Hierarchy of Needs. Retrieved on December 23, 2012, from http://psychology.about.com/od/theoriesofpersonality/a/hierarchyneeds.htm

Difference and Comparison (2012). Empathy and sympathy. Retrieved on December 23, 2012, from http://www.diffen.com/difference/Empathy_vs_Sympathy.

Rubinstein, Noah (2012). Isolation: Issues treated in therapy. Retrieved December 24, 2012 from http://www.goodtherapy.org/therapy-for-isolation.html

Hypochondriasis

Published on by hearingelmo6 Comments
Aren’t I brave to post my “just out of surgery and anesthesia” picture? I look “high”, don’t I? (GRIN)

Many folks might be surprised that hypchondriasis is an actual psychological diagnosis. Perhaps it is because we misuse the word hypochondriac a great deal! We tease each other, making a big deal about stating we “may be coming down with something“; or, perhaps you know someone who complains about “something” being wrong with them ALL THE TIME. Something always hurts, or they have aches and spasms and feel “poorly”. In writing this, I can think of one or two people I know personally who are like this. I guess since I’m from the South, I mentally categorize them as WHINERS… although that isn’t a very good psychological label.

Hypochondriasis is misused a great deal, however. A whiner is not necessarily a hypochondriac. The diagnostic features of hypochondriasis includes: 1) a fear of having a serious disease based on a misinterpretation of one or more bodily signs or symptoms, 2) an unwarranted fear or idea of having a disease that persists despite medical advice and test results to the contrary, and 3) a preoccupation that greatly influences or impairs other behavior and the ability to function (DSM-IV, p. 462).

So we all know a whiner… but they are not really a hypochondriac. Sure we use this to tease – or discuss someone negatively behind their back. This person is comfortable verbalizing how they really feel… to anyone who will listen! However, the reality is they do not have hypochondriasis.

Invisible Illnesses and unwanted labels

Yup. We’ve established we all know whiners. Some of us work with these folks. Some of us love these folks. Some of us (gulp) are these folks!

However, in recent months a common theme has come up in many of the conversations I’ve had with people who have contacted me through Hearing Elmo. It seems a good number of folks with invisible illness or disability are often accused of being hypochondriacs. Not simply because the word is misused either. People around them honestly believe it is “all in their heads”.

I posted the picture I did for this post because shortly after sharing this picture when I first had my cochlear implant surgery, an individual (whom shall remain unnamed – grin) told me in response to my “how I’m doing” email that they thought it was terrible I had this surgery – permanently changing the way I hear, all because I was pretending I had a hearing loss. You see? This person knew me growing up. They knew me when I could hear. Approximately 4 or 5 months before my CI surgery we talked on the phone. They didn’t know that:

I was using a captioned phone and was READING what they were saying.

The phone was on speaker and my husband was enunciating words I did not understand.

I tell people when they ask me what motivated me to get a cochlear implant was I was TIRED OF FAKING IT. I had reached an all-time low and struggled to communicate despite my numerous coping mechanisms and communication strategies that I had in place. I was exhausted. I dreamed of being able to communicate orally with fewer difficulties.

I didn’t sound deaf (not having been totally without sound long enough to really develop a “deaf accent”).

I was still teaching and working.

I can’t really describe for you how these comments from this person affected me. I was – in a word – devastated. I couldn’t wrap my mind around why someone would seriously believe someone would pretend to not be able to hear, fake their way through all the tests, and undergo surgery that would enable them to hear – but electronically, all for attention or for “show”.

Many invisible illnesses can be difficult to diagnosis. Some test results for diseases like Lymes, may actually come back with false results. Many pain disorders, including fibromyalgia, are difficult to diagnosis. There are still medical practitioners that believe this diagnosis is “a crock” and it can be difficult to find a doctor who takes your symptomology seriously. It doesn’t help that many women are prone to these types of illnesses or disorders, as women are more likely to be accused of being “drama queens”, worriers, and hypochondriacs. The DSM-IV points out that hypchondriasis is equally common in males and in females (p. 464).

What can YOU do?

The problem with invisible illness or disability is that they ARE invisible. You cannot see the problem. People with invisible illness or disability also start to hide what is going on with their own body. Like myself, I actually faked being able to hear better than I actually could. Some may answer “how are you?” with “fine, how are you” out of habit. However some may respond that way out of FEAR to disclose the truth. Many choose to not even tell loved ones how severe symptoms may be that day because they believe their family members are tired of hearing it.

I checked in with a friend this week to let her know I was thinking of and praying for her. She responded to “how is the pain today?” with “pain is a constant friend”. You may not be honest with how you are doing because you believe others are tired of hearing about your “bad days”. Many choose not to disclose how they REALLY are doing as they fear derisive comments, exasperation, or disdain from those around them.

Do you know someone with an invisible illness or disability? If you ask them how they are – and you REALLY care about them – be a “safe” person for them to be truthful with when they respond! Have you blown it and shown your exasperation before? Do better. It’s not like your poor response has to be your normal response. Are you married to, or do you love someone who lives with an invisible illness or disability? It can be hard; but, wouldn’t you want them to love you and encourage you if the “shoe had been on the other foot?” – rather YOUR foot?

What is the Cost?

I believe that the reason many invisible illnesses and disabilities also have a co-morbid diagnosis of depression and even suicidal ideation, is because those around them do not believe them. They live with constant negative feedback when they do open up and honestly share how they are doing with others. Your disbelief can cause them to isolate themselves – dropping out of life. Your misinformed comments could cause them to start internalizing their feelings, making it difficult for them to trust anyone. Don’t be an – erm – DONKEY. One of the best things you can do for someone who lives with invisible illness or disability 24/7 is to simply BELIEVE them.

After I found people I could trust with how things were REALLY going? I was able to actually deal with my bad days in a more proactive way. Just knowing that someone believed me – empowered me. I couldn’t hear. I staggered because my world really DOES revolve all the time. That belief enabled me to refocus my energy in discovering ways to COPE.

Will you be that person to someone this week? Can you listen without skepticism and provide that assurance?

Denise Portis

© 2012 Personal Hearing Loss Journal

American Psychiatric Association. (2000). Diagnostic and statistical
manual of mental disorders (4th ed., text rev.). Washington, DC: Author.

“You are Getting Sleepier…”

Published on by hearingelmo1 Comment

— Oh for a patch of sunshine and an afternoon nap…

“You are getting sleepier…”

I could have handled a little hypnotic suggestion this past Friday. Thursday morning before going to work, my hearing assistance dog did just what she was suppose to do – sort of. I had just placed my breakfast of bacon and eggs on the table when Chloe alerted me to the front door. I went to see who was there to find the UPS man and a delivery for my husband. I should have been suspicious. Chloe normally wags and flirts with whomever is at the door, but she disappeared while I made small talk with the UPS guy.

Meandering back into the kitchen I noticed all three dogs sitting in a row, Chloe closest to the table of course. My plate was empty. As a matter of fact, it had been licked so clean it appeared to have come straight from the dishwasher. I fussed, even though I knew it was my own fault. Well-trained assistance dog – yes. Still a dog? YES.

I could have predicted the outcome, but was sort of hoping if I kept my hypothesis to myself it may not prove to be true. But my sensitive-tummy service dog was sick as a – ERM – DOG, by Thursday evening. As a matter of fact she was sick all night long. I was up every 90 minutes to 2 hours with her – for up to 30 minutes at a time. At 3:30 in the morning, I sent out an email to all my students cancelling classes. I was so tired I was hallucinating. Seriously. After taking Chloe out around 3:00 AM I was freaked out by the hundreds of mice running all over the yard – or so I thought since I was seeing things that weren’t there.

Being a person with disability, I require more sleep than an average adult anyway. It wasn’t until hound dog was feeling better Friday night that I finally got a solid nine hours of much needed sleep.

How Much Sleep Do You Need?

According to the National Sleep Foundation, average, healthy adults need 7-9 hours of sleep every night (National Sleep Foundation, 2011). While most of us very likely receive far less than that, the experts agree that this is the amount we should strive for every night. However, people who live with disability or invisible illness may actually require more. At the very least, these folks should make the 7-9 suggested hours a priority.

People with arthritis may need more sleep (Eustice, 2012), as do people with epilepsy (NYU Langone Medical Center, 2012). What can be frustrating, however, that for many living with invisible illness or disability, sleep disorders are often a co-morbid diagnosis. I know people with fibromyalgia, Lymes disease, and other chronic pain conditions that explain sleep is difficult to obtain. Your body may need extra sleep; however, because of the illness itself the person may have difficulty falling asleep or staying asleep.

Training along side of fellow clients at Fidos For Freedom, Inc., I have a new “family” of folks who have various disabilities and illnesses. Some have chronic pain conditions, some have MS, mobility issues, Parkinson’s, and hearing loss. Since getting to know them over the years, I have heard ALL of them explain they simply do not get enough sleep, or have trouble getting a full sleep cycle in each night. As a result, each have stories to tell of “things getting worse” and symptoms causing near accidents or actual falls, bumps, bruises, etc. I recall overhearing a conversation of one of the trainers talking to a newly matched client. They were falling more and having trouble with even cognitive functioning. The (wise) trainer asked them, “How much sleep are you getting?” The client explained that they were so excited about this new chapter in their life that they had trouble sleeping – night after night. They quickly surmised this may be increasing the severity of some of their disease’s symptoms. Sleep matters!

People with hearing loss may actually require more than the average 7-9 hours necessary for most adults. According to Healthy Hearing (2008), because our brain is actually more involved than our ears in communication, a tired brain can impair how well we hear. Even if we are “hearing again” with cochlear implant, BAHA, or hearing aids, sleep deprivation may impair our ability to communicate well and to maximize what we are able to hear.

People with hearing loss often forget how much harder they have to work to communicate effectively. As a result we actually tire out much faster than our normal hearing peers. If you must pay attention and concentrate wholly on a conversation to adequately understand and respond, your brain actually TIRES.

I also have Meniere’s disease, a vestibular and balance disorder. Because I have to pay attention to stepping up, stepping down, avoiding visual vertigo triggers such as ceiling fans, paying attention to my surroundings to avoid snags in carpet, etc., I actually “think my way safely” throughout each and every day. It can take a lot out of me to constantly remain on “high alert” to possible problems to avoid falls.

So Exactly How Do I get More Sleep?

There are NUMEROUS places online from which you can find information about how to get a better night’s rest. Some of these “tips” include:

1. Avoid caffeine 5-6 hours prior to when you plan to go to sleep.

2. Avoid complex carbohydrates such as breads, pasta, and sweets several hours before bed. Some experts suggest avoiding eating ANY large quantity of food before bed.

3. Avoid exercising within several hours of when you plan to go to bed.

4. Limit “light” – especially those created by many types of technology and electronics. Computers, iPads, televisions, etc., all may stimulate your brain activity and make it more difficult for you to sleep.

5. Worried? It can keep you awake. Try writing down things you need to get done the next day so you do not lay in bed worrying about remembering to do them. If you are worried about things you cannot control, try talking to someone. It doesn’t have to be a counselor – even a close friend or family member may work.

6. Try going to bed at the same time every night. Many stay up later on Friday or Saturday nights. This can actually disrupt our sleep schedule. Our bodies like routine – especially when it comes to sleep. Or, you may love sleeping in on Saturday morning. This too, can disrupt our sleep schedule. Try waking up and going to bed at the same time – no matter what day it is.

7. Many people sleep better in a dark, cool room. Do you need to purchase room darkening blinds? Maybe purchase a fan for just the bedroom?

8. Depending on who you read, opinions vary about whether or not taking an over the counter sleep aid like Tylenol PM or even Benedryl can be helpful. There are also medications specifically FOR sleep, though most warn they are not to be taken long-term. There is a new drug to hit the “over the counter” scene called “ZzzzQuil” believe it or not – made by NyQuil. It has been getting fairly positive reviews. Some may find they need a prescription sleep medication. Discuss with your doctors any risks associated with the prescription.

Do you think you are “getting by” on what sleep you are able to get? There are too many articles (written by medical experts) that show links to very serious, even life-threatening health problems for those who are chronically sleep deprived. Check out this great article by Dr. Stephanie Schupska at WebMD: Click here. “Not Enough Sleep: 7 Serious Health Risks”

Please feel free to comment and share how sleep deprivation has posed problems for you; or, ideas about how to get a better night’s rest!

Denise Portis

©2012 Personal Hearing Loss Journal

About.com Arthritis and Joint Conditions (2012). Arthritis patients need more Zzzzzz’s. Retrieved October 22, 2012 from http://arthritis.about.com/cs/betterliving/a/needmorezzzzzs.htm

Healthy Hearing (2008). Sleep your way to better hearing. Retrieved October 22, 2012 from http://www.healthyhearing.com/content/articles/Hearing-loss/Treatments/24201-Sleep-your-way-to

National Sleep Foundation. (2011). How much sleep do we really need? Retrieved October 22, 2012 from http://www.sleepfoundation.org/article/how-sleep-works/how-much-sleep-do-we-really-need

NYU Langone Medical Center. (2012). Sleep and Epilepsy. Retrieved October 22, 2012 from http://epilepsy.med.nyu.edu/living-with-epilepsy/epilepsy-and-lifestyle/sleep-and-epilepsy

What I SHOULD Have Said

Published on by hearingelmo7 Comments

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