November 2012 – Hearing Elmo

Confrontation and Hearing Loss

Published on November 27, 2012 by hearingelmo2 Comments

hlaa feb 046 — Acting out a conversation gone WRONG…

hlaa feb 047 — Acting out a conversation gone WRONG…

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

Volume

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

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

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

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

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

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

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

Proximity

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

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

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

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

Crying

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

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

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

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

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

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

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

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

Misunderstandings

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

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

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

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

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

Denise Portis

Embracing Freedom

Published on November 19, 2012 by hearingelmo7 Comments

Hearing Elmo welcomes Ruth Ilean Fox as guest writer for this week’s post. I was trying to remember the first time I met Ruth – most likely at a HLAA convention, but we’ve also touched base from time to time via email and now FaceBook. Ruth has always been an encouragement to me, so I was thrilled when she agreed to write for Hearing Elmo. Her reminders about embracing the freedoms we have is something we should all remember – and share.

Accommodations for disabilities equal freedom of functionality. Yet how often, instead of embracing freedom, have we turned down accessibility options because of personal discomfort.

Everyone has challenges, some slight and some difficult, which hinder the achievement of a particular goal. There are all sorts of tools and techniques that help to bridge these barriers to functionality. Glasses help some vision impairments; hearing aids and cochlear implants assist some hearing losses; sign language and cued speech provide alternative communication; canes, Seeing Eye dogs provide guidance for those with limited or no sight; wheel chairs, walkers, and service dogs assist with mobility challenges. Then there are ramps that provide building access, assistive listening devices that shorten the distance between the sound source and the listener; and captioned TV, phones, and movies enhance understanding. This is just a tiny fraction of hundreds of forms of assistance that is available to people with challenges. The list grows daily as new ideas are invented and accessibility laws are enforced. Most of these things were not even in the dreams of inventors as recently as 30 years ago. The ADA became law just over 20 years ago. It is exciting time for people with disability; challenges are being turned from absolute barriers to varying degrees of freedom.

Usage – Not Access Provides Freedom

Access to accommodation alone doesn’t provide freedom; it has to be used. Various situations cause people to reject available accommodations. Many people are apprehensive of publicizing the presence of their impairments. It is possible that they don’t like the way the accommodations changes their “average person” appearance causing stares and comments from other people. They may feel awkward with the use of an accommodation because it is new to them. Their patience may be stressed because accommodations don’t always work the way they expect.

As a person with multi-disabilities, who doesn’t want to miss the fullness that life has to offer, I have had a lot of experience with “seeking freedom through accommodations”. I have had the joy of watching the world develop from a time where you provide your own accommodations; develop your own accommodations; or patiently accept a significantly poorer participation in an activity where accommodations did not exist, to a world where accommodations are appearing in many places. Accommodations are appearing as public services, insurance companies are slowly accepting accommodations as reasonable coverage options, the market place is overlapping accommodation needs with features for the average person, and manufacturers are making accommodations more attractive as well as improving their capabilities.

Still even with this greater access to accommodation, it sometimes takes nerves of steel to venture out in public the first time with a new accommodation. My first accommodation experience was glasses at a time that “four eyes” was a favorite taunt of my eight year old peers. I would leave them at home, losing the freedom of sight. A hearing aid was the next accommodation, with which I experienced much anxiety trying to hide it and my hearing loss, instead of embracing the new found freedom of hearing. I did a bit better with the cochlear implant, as the novelty of it was interesting to most people. Then crutches, a walker, a mobility scooter, and a wheelchair became necessary accommodations for me. Each one of them caused extreme anxiety as I first used them in public. Their use provided freedom of mobility, but my focus was on how different they made me and I was sure that everyone was staring at me and my disability.

Hiding and Denying a Disability Does Not Make it Go Away

The one thing I did learn from my youthful response to glasses was to be persistent. Hiding and denying a disability never made it go away. I have find that even if my heart double beats; my face turns red; and my hands shake and sweat, I was where I wanted to be in the community. The discomfort was fleeting and I relax in the knowledge that most people around me respond more to my smiles and communication, than all my paraphernalia.

My wish for everyone struggling with the effects of disability, regardless of its degree or kind, is to explore accommodations; patiently work through the initial anxiety; and embrace the freedom.

– Ruth Ilean Fox

Hypochondriasis

Published on November 12, 2012November 13, 2012 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

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

November Ramblings

Published on November 6, 2012 by hearingelmo4 Comments

Geesh. I rarely miss a Monday’s post, but now two have actually gone by me! I’m working on a post that is an important topic for me, but it is not quite ready. Because I’m having “Hearing Elmo” withdrawals, I thought I’d post some tidbits that have been on my mind.

1. I was unprepared for the power outages affecting my “Dry n Store” in which I house my cochlear implant, as well as nightlights scattered throughout the house for my safety.

2. No matter how many power outages I’ve lived through, I still turn on the light switch when entering a dark room.

3. Dogs do not care about power outages. It hasn’t yet affected their two meals a day and daily walks.

4. Cats care about power outages, but cats seem to care about everything.

5. Young adult children can whine like very YOUNG CHILDREN when their computers will not work because the Internet is down.

6. It never gets old to step out of car (that I was driving) and someone walking by asks, “Is that a guide dog?” I still crack up every, single time!

7. Much to my son’s consternation, I thought it incredibly cute how proud of his “I voted” sticker he sported! This was his first presidential election!

8. My daughter had two wisdom teeth pulled this week. She was very brave. She was very drugged. She is very intelligent, asking her boyfriend to not allow her to post on FaceBook while she was “high”. 🙂

9. My poor husband doesn’t sleep well when his C-PAP machine fails to work due to a lack of electricity.

10. I don’t sleep well when my husband’s C-PAP machine doesn’t work. I may be deaf at night, but the flailing around knocks me right out of bed!

11. I will be glad when this election is over and the political rants stop. Or will they?

12. Missing three days of school isn’t worth it when administration tacks it on to the end of the semester.

13. I think it is silly that our dogs seem to shed right as the weather turns cold. Don’t they need more fur?

14. Garbage disposals do not work without electricity. Fishing out food by hand is not a pleasant task.

15. My favorite weather is clear, cold days. We’ve had a few of those this week!

16. I love volunteering for things that I know I can do despite hearing loss and Meniere’s disease. It gives me a sense of purpose.

17. One of my favorite things is to have coffee in a quiet location with a good friend. Unfortunately, mine live in numerous other states.

18. I may have been gone from North Carolina for ten years now, but I still say “y’all“.

19. I saw a spider the size of a half dollar this week and didn’t squeal like a girl. I stopped breathing – but that’s beside the point!

20. One of my favorite things about November and Thanksgiving is “Aunt Lynda’s Sweet Potato Casserole“. Yes, I know there are more important things to be thankful for, but I’m being honest here!

Denise Portis