Category: Meniere’s

It is Easier to Act Your Way into Feeling…

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Things will get better…

Our pastor at Weem’s Creek has been going through the story of Elijah. Interesting guy, this old testament prophet, Elijah. Through him, God shut off the rain for a long period of time. He put the false prophets of Baal to shame by having his own sacrifice (soaked in water) eaten up by fire called down from Heaven. But… Elijah could be a whiner.

Not only could the man whine, but he could exaggerate as well. After a particularly spectacular display of God’s might – working through Elijah – he claimed to be all alone and the last of his kind (a prophet). Neither were true. Elijah became depressed. God decided to force him into action, and it eventually changed his outlook.

Pastor Orr used a quote, “It is easier to act your way into a feeling, than to feel your way into an action”. I looked all over the Internet for who actually said that. Although I found plenty of examples of people USING the quote, I was unable to actually find who said it “first”.

This quote really hit home for me. I was contacted this last week by a man who follows my blog. I asked his permission to share part of that email.

“I can know that I need to change my attitude about my disability, but knowing and doing are two different things. How do you get to where you know your life is not over after acquiring a disability when you are stuck on thinking your life is over?”

I’ve been very open about my own struggles with depression. Would I have struggled with depression had I not begun to lose my hearing at the age of 25-years-old? Very possibly. But I do know know that there is a correlation between depression and disability. Research has shown that the degree of depression in people with disabilities is directly connected to their own personal acceptance of their disability (Townend, Tinson, Kwan, Sharpe, 2010). You need to accept your “new normal”. I DO realize it is easy to say, but there really IS life after disability.

I realize we all struggle with different things. Some chronic illnesses and disabilities impact important life functions such as mobility, independence, and quality of life. Being late-deafened is minor to having Meniere’s disease in my own life. As a matter of fact, my husband noted recently that Chloe does just as many balance-related tasks as she does hearing alerts (if not more) – and she is a certified hearing assistance dog. When we have a major weather system stall out over the top of us (my main vertigo trigger) I can really struggle to even get up the nerve to leave the bed in the morning. And let me tell you… it can require nerves. A recent fall left me black and blue from shoulder to hip, with an anxious husband trying to decide whether or not to call 9-1-1 as I kept losing consciousness. (Life with Denise can be exciting – grin). However, when the sun shines, my balance related symptoms are minor. I’m very aware there are courageous (and inspiring) people who do not get “sunny days”. They do not have a break in the degree of disability that directly influences the quality of their lives. Acceptance for them is different and I acknowledge may be more difficult. Regardless, one does have to accept where they are in terms of a “new normal”.

Did you know that acceptance of your “new normal” can not only influence depression, but being depressed can actually worsen your disability? I have personal experience with worsening hearing, balance and vertigo when I happen to also be in a downward spiral in depression. Karp, Skidmore, Lotz, Lenze, Dew, and Reynolds (2009), found that symptoms of specific disabilities actually worsen when the individual is also depressed, stressing that depression needs to be taken seriously and treated. I have a number of red flags that I have set up to determine if I am becoming depressed. I know and have experienced the dangers of depression. Having a “blue” day or two is different than depression. Having lived with it, I know what it “looks” like and stay on the look out for specific clues that tell me I need to seek help.

Living with “It”

One really CAN live within a “new normal”. This may mean a acceptance of a  change in your health. Perhaps you are single when you thought it would be “til death do us part”. Death may have indeed parted you from someone you counted on emotionally and physically. So how do you accept where you ARE, and move on to living a victorious life? I truly believe we have to simply take action. Our “feelers” cannot really be trusted. Don’t get me wrong. I believe compassion, mercy, and love are important. But our hearts – our “feeler” – cannot provide a new, healthier way of acceptance.

What kind of actions can we take? Many of us become involved in organizations that provide support for a specific disability we may have. Within these types of organizations, there are numerous ways to get involved. The Internet makes this connection simple. There are a number of community service projects that can use the help of volunteers. Even small communities have opportunities for service. Some people with disabilities prefer to be involved in areas of service that are not directly related to their disability. If you want to take action and get involved in helping others – LOOK. The opportunities are there. Giving back to others is a primary way in which people feel valued and useful. Getting active in giving back to our communities may actually change the way you FEEL about your own disability. We need a purpose.

Leo Rosten

“I think the purpose of life is to be useful, to be responsible, to be honorable, to be compassionate. It is, after all, to matter: to count, to stand for something, to have made some difference that you lived at all.” —Leo C. Rosten

Denise Portis

©2012 Personal Hearing Loss Journal

Karp, J., Skidmore, E., Lotz, M., Lenze, E., Dew, M., & Reynolds, C. (2009). Use of the Late-Life Function and Disability Instrument to assess disability in major depression. Journal Of The American Geriatrics Society, 57(9), 1612-1619. doi:10.1111/j.1532-5415.2009.02398.x

Townend, E., Tinson, D., Kwan, J., & Sharpe, M. (2010). ‘Feeling sad and useless’: an investigation into personal acceptance of disability and its association with depression following stroke. Clinical Rehabilitation, 24(6), 555-564.

 

 

Time Off

Published on by hearingelmo3 Comments
Chloe's vest comes off and she gets the "beach rules" from Denise. Unaccustomed to being "vestless" in public, she was very attentive and unsure in the beginning

 

As a surprise, my husband reserved a couple of  nights in a motel at Ocean City, MD, while we were on spring break from work. (One of the perks in working for a college). Apparently March is the time to go if you are not a crowd lover – or “sun” lover. Too cool to lay out or play in the surf, but beautiful weather for walking and many opportunities for quiet time.

Chloe is normally “working” when she is in public. Determined to give her some time to just be a dog, I removed her vest for large amounts of time. She was at first a little timid about being without her vest. Once she saw some other canines on leash though, the wag was back in her tail. Even working dogs need down time. People ask me all the time if Chloe gets to relax. I always have to grin. Chloe is almost 8 years old and at home? Well, let’s just say she knows how to relax. She doesn’t wear her vest at home, but she still alerts to timers, my phone, or my name being called. But she naps (and snores), she plays with her buddy, Tyco (our family dog), she has several squeaky toys, she squirrel watches, and eagerly awaits family members coming home.

Chloe enjoys working though. She danced her way on campus just this morning and wagged her way all the way to the elevator. Sometimes I wish some of her “wag” would rub off on me as 7 AM classes on Monday seemed awfully early to me after a week off!

Everyone needs time off. It can be hard to do if you are working to pay bills, save money, or try to get out of debt. But time off can be in small, “mini” vacations. Even an hour or two here and there can be very beneficial in helping a person re-group.

People with DisABILITIES Need R&R too!

I have met a number of people with various disabilities that have confided that they rarely do what others call “fun” things. Think about it for a minute. If people who walk without assistance, hear without assistance, see without assistance, and speak without assistance enjoy things like movies, walking, reading a good book, or hanging out with friends, well? It just may not be that easy for others.

I like going to the movies. I went to see “The Hunger Games” over spring break with my husband and 21-year-old son, Chris. But I don’t get the same level of enjoyment out of movies that they do. Even with Chloe by my side, I am very disoriented in the dark, especially if my cochlear implant is picking up the very loud commercials and previews on the screen. As I make my way to a vacant seat, I am often fighting the effects of vertigo. After I get seated – hopefully in a place where people won’t have to crawl over my assistance dog and I – it takes a number of adjustments to find a good program on my CI to best hear the movie. If I do that, I sometimes find it difficult to converse to the person right next to me too. At times I miss things said in the movie. If I’m with someone I know well, I’m not bashful and will lean over and ask, “What did they say?” There are not any captioned theaters close to my home (although I am glad there are some within an hour’s drive), so most of the time I go to the same movies you would attend. However, not having captions mean I have to really pay attention! Can I just be honest and say that I’m unable to eat popcorn and catch an on-screen conversation at the same time? (BIG GRIN). I have to really focus and concentrate to understand what is going on. So it is still “fun” for me… just not perhaps the same level of “fun” it may be for you because it does take WORK.

For some, sitting down and reading a book may not be “fun”, and it doesn’t mean they don’t enjoy a good book. Some folks have trouble even holding a book, or turning pages easily. Taking a walk may relax YOU, but for someone who has Meniere’s disease it can be difficult to do a simple walk. My world constantly turns counter-clockwise. It is a slow rotation, mind you, but a rotation nonetheless! On high humidity days, the rotation picks up speed – one of the reasons I just don’t try to walk on days like that! So walking on a sidewalk in a straight line takes concentration. I have given up walking with family members. Although I enjoy the conversation, I cannot talk and walk at the same time! I can talk to my walking buddy, Chloe, and she just listens. I don’t have to worry about her end of the conversation and my having to make sense of what she said while still putting one foot down in front of the other. We love to go into the woods on trails and in grassy areas too. This requires even more concentration. I usually shut up at this point as I have to carefully balance each step. So yes… I enjoy walks but probably not on the same level you do.

Despite having to make adjustments and find a new way of doing seemingly mundane things, even folks who are differently-abled need to take breaks. Perhaps even a lot of them! They may be in the form of naps. I am learning that napping or resting is a necessary requirement for many people with certain kinds of invisible illnesses. I require 8-10 hours of sleep a night. (When I tell people that, they FALL OUT, but if it helps you get through a day “hearing well”, you do anything necessary). Others may require a nap – or TWO. They aren’t lazy. They aren’t depressed (although just like anyone, people with disabilities can and do get depressed). They simply require some extra rest in order to continue a day’s work.

Chloe "relaxing" on a mini vacation at the beach. She really knows how to de-stress!

Careful not to judge. You may wonder why someone doesn’t enjoy the same kind of “down time” you do even though you have the same disability. Each person has individual differences in their disability. I have a friend who enjoys running in his spare time. I’m talking about REAL races… the kind where you take off after hearing a starting pistol! He’s an incredible runner and does very well. He is a bi-lateral cochlear implant user. When I first met Sam, I was astonished to hear what he did for fun! Having hearing loss and balance issues, running isn’t something I can enjoy.

I’m not saying we shouldn’t look for others who are struggling with some of the same issues. We can mentor, give advice, and support someone else in a way that will give them the tools they need to live a victorious life. But do be aware that you may share a diagnosis, but have different symptoms, struggles, and issues. We can still be a listening ear and give encouragement. Just be careful about insisting on something that works really well for YOU, because it may not work really well for them.

I’d really love to hear about some of the ways you choose to unwind! What do you do to relax? What is FUN for you? What do you need to do in order to enjoy some of the things others do without accommodation?

Denise Portis

© 2011 Personal Hearing Loss Journal

 

 

 

 

 

Why I Love Winter – Restoration

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Part Three of Four…

February starts this week. This winter has been a mild one in my neck of the woods. Very little snow and mild temperatures make many folks exclaiming “What a terrific winter we’re having!” I don’t begrudge the milder winters to those that enjoy them. I do love my snow though! When we have more than our share of winter weather, I’m happily out in it directly after a snowfall, shoveling and scraping and tossing the “white stuff” around!

Some of nature goes “dormant” during the winter while other types of plant life may just conduct photosynthesis at a reduced rate. Animals may hibernate, or only move about sparingly to limit calorie burning. Our winter has been so mild the squirrels have been scampering about much like they do in the autumn. I know for a fact the raccoons are out and about for we finally had to break down and purchase “raccoon proof” trashcans. I’ve seen deer near the creek below our home. So have the dogs:

Foxes stare at us from the bushes and shrubs at night when we take the dogs out for the last time. Animals are busy, busy. The trees and perennials are just – C o N f U s E d.

When I think of winter, however, I think about all the restoration that is taking place. Nature may not LOOK alive, but it is. Many types of life are resting, preparing to get very busy producing new growth or replenishing body fat. Growth spurts cannot happen without winter and the dormant phases many types of life experience. This period of restoration actually prepares and allows this growth.

An old, but favored song about the seasons says it much better than I am able to describe:

Every Season

Every evening sky, an invitation
To trace the patterned stars
And early in July, a celebration
For freedom that is ours
And I notice You
In children’s games
In those who watch them from the shade
Every drop of sun is full of fun and wonder
You are summer

And even when the trees have just surrendered
To the harvest time
Forfeiting their leaves in late September
And sending us inside
Still I notice You when change begins
And I am braced for colder winds
I will offer thanks for what has been and was to come
You are autumn

And everything in time and under heaven
Finally falls asleep
Wrapped in blankets white, all creation
Shivers underneath
And still I notice you
When branches crack
And in my breath on frosted glass
Even now in death, You open doors for life to enter
You are winter

And everything that’s new has bravely surfaced
Teaching us to breathe
What was frozen through is newly purposed
Turning all things green
So it is with You
And how You make me new
With every season’s change
And so it will be
As You are re-creating me
Summer, autumn, winter, spring!

Life Restored

In my own life I have periods of “winter”. Frankly and honestly? I have been more dead than alive during specific life seasons. I don’t know if I could even call it “dormant”, but I do know life continued for spring eventually DID come.

Experiencing deafness as an adult and acquiring a balance disorder is never a welcome addition to life. One doesn’t ASK for disability, chronic illness or invisible difficulties. Yet, some of us are asked to walk this road. I wish I could say that I have always accepted what has come with grace, humility, and courage. I cannot.

Depression is an ugly thing. It comes in many forms. Depression also spawns a number of different symptoms and feelings in individuals. For me, it meant I almost lost my life. There were some close calls. Even when I was able to get past the despair, there were days I simply felt numb – going through the motions of being a mother of preteens, working, and barely surviving. It wasn’t until the crisis had passed that I was even able to share with those closest to me what I had gone through and how close I really came to the “end”. Maybe that is why this blog is so important to me and why I open it up to authors of all kinds to tell their story. In 2002, I was reading a lot of things on the Internet. Some of it saved my life.

As I began to learn to cope with everything that was happening and learned to adjust to my worsening hearing and balance, I got a lot of rest. Not even necessarily the poor type of rest that comes with depression. I did begin to slowly heal from the inside out. No (grin). My ears didn’t heal. But I did gain momentum in learning more about HOW to cope with hearing loss and balance issues. I learned to ask questions. I learned what worked for me and what did not. I surrounded myself with people who were ahead of me in the process and along side of me in the journey. Eventually I discovered I could also reach out to those who were still coming to terms themselves with hearing loss. I felt restored.

I want to close this post out with the video (captioned in both English AND Spanish) of “Every Season”. I hope you find as much wisdom in the simple song as I have. If you are experiencing winter as the result of chronic or invisible disability and illness, please write me. I handle all correspondence through this blog confidentially unless you specifically ask me to post your response for some reason. (Please email me at denise.portis@gmail.com    instead of leaving a comment as these DO become public). Despite my hearing loss I am a good listener. (SMILE) I do not claim to have all the answers, but I have a story, too, and we may share many experiences, frustrations, and successes. I hope (and even pray) that your winter is a time of restoration.

Denise Portis

© 2012 Personal Hearing Loss Journal

Why I Love Winter

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

(PART ONE OF FOUR)

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

Winter Can Be So Quiet

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

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

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

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

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

We Need the Quiet

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

The forest is sleeping during the winter…

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

 

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

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

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

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

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

Denise Portis

©2012 Personal Hearing Loss Journal

Entitlement

Published on by hearingelmo3 Comments

When you think of “entitlement”, do you picture someone with their arms crossed and a demanding attitude? Do you associate  negative thoughts with the word? I have heard the word “entitlement” discussed at length in various groups lately. Parents may bemoan the fact that “kids today have a sense of entitlement that promotes a feeling of justification for all they do and all they DESERVE“. My husband and I even “shake our heads” at our own kids from time to time. Don’t get me wrong… our kids are TERRIFIC. They are well-adjusted, do not use drugs or drink alcohol, their language is acceptable, they make good grades, they are responsible and willingly reach out to others. But sometimes? Sometimes they act as if they deserve certain things even before earning the right to have that luxury, trust, or understanding. Thankfully, we can simply remind them about the blessings they have and use a comparison or two between their own lives and the lives of some of their peers and they are quick to apologize for their previous attitude.

Teachers  confess that students in classrooms across the country are morphing into groups of individuals who demand respect and favors they have not earned. Elayne Clift (2011) said, “Whether it’s rude behavior, lack of intellectual rigor, or both, we are all struggling with the same frightening decline in student performance and academic standards at institutions of higher learning (para. 6)… when teachers refuse to lower standards, those students seem to resort to a new code of conduct that includes acted-out rage, lack of respect, and blame”(para. 8). From what I understand, this attitude is reaching epidemic proportions in classrooms. Thankfully, I have not experienced this in my own classrooms yet. I do, however, believe it CAN be a problem and is certainly happening in many schools. Parents and caregivers may unintentionally (or with very real intent) foster and promote this attitude in their children.

What about “Occupy… ” a city near you movement? I’ve listened to some of my peers argue that those camping out and “occupying” locations in cities across America, are individuals trying to make a point about those in power and wealth, yet harbor a sense of entitlement.

I’m not here to debate any of these issues. Instead, I wanted to point out that a sense of entitlement is alive and well in the disABILITY community. I support being a positive advocate and for educating individuals as to what their rights are under the ADA. I’m not here to debate these issues, however, and recognize that there are plenty of examples of people with disabilities being misrepresented, mistreated, and unfairly judged.

What is ENTITLEMENT?

Webster’s defines “entitlement” as:

1. a : the state or condition of being entitled : right b : a right to benefits specified especially by law or contract
2.: a government program providing benefits to members of a specified group; also : funds supporting or distributed by such a program
3.: belief that one is deserving of or entitled to certain privileges

When I first began losing my hearing at the age of 25-years-old, I knew next to nothing about hearing loss and how it can impact a life. I spent the first decade of progressive hearing loss learning about hearing loss in general. I sought support and information about how to better communicate and how to deal with the emotional consequences of an acquired disABILITY. When I developed Meniere’s disease as well, I challenged myself to learn all there is to know about a disease with no cure. As a result, I’ve learned what my own triggers are, what steps I can take to lesson the symptoms experienced, and reduce the severity of flare-ups. I’ve become an advocate for those with hearing loss… especially those who are late-deafened. I support and advocate on behalf of those who use service dogs to mitigate their disABILITY.

I’ve met PLENTY of folks who do the same. This does not mean, however, that I have not met people with hearing loss, Meniere’s disease (or other balance disorder), and people with service dogs who exhibit an attitude of entitlement. Many have taken laws that protect their rights and use them as a weapon of mass destruction. Instead of resting on the assurances these laws were meant to produce in the lives of individuals with disABILITIES, these laws are used to insist on more than what is deserved and intended. Don’t get me wrong! Companies and local and federal government should be compliant with specific criteria the ADA outlines and determines as provisions for equal access. A person with disability should be given any available means and technology at work so as to do their job in such a way they are on equal footing with another who does not have a disABILITY for promotions, raises, and opportunities. My “beef” with people with disABILITIES begins where folks insist everyone else in their life adjust their attitudes to satisfy their fragile egos.

Respect is earned…

Whether you have a disABILITY or NOT… respect is earned. We are not entitled to respect by our fellow man. Let’s face it. There are mean people out there… and mean people SUCK. But we as individuals who live with disABILITIES are going to get a whole lot further if we treat even mean people with – respect.

In the service dog industry mean people can “bring out the mean” in others. I’ve seen it happen time and again, and frankly? It’s happened to ME. Some wise-guy person in “charge” will barrel up into my personal space, put out a hand to physically stop me from entering an establishment with chest puffed out, hand on a hip and a look on their face as if to say, “over my DEAD, lifeless body“. My first reaction? “That can be arranged…”

Nothing gets my back up quicker than a cocky, insolent ignoramus who chooses to invade my personal space as well! Especially since the latter may mean I over-compensate and “fall down go boom“. I know my rights. I have copies of the law. I’ve been trained (thanks to Fidos For Freedom). But I have learned that fighting “fire with fire” only leaves me with singed body parts. Sure, I may gain access, but at what cost?

One of my favorite Bible verses is Proverbs 15:1. I just love Proverbs! You could read one verse a day… strive to learn and apply something from it and be busy a very long time… or close to three years since there are 915 verses to be exact, but I digress (grin). Proverbs 15:1 (ESV) says, “A soft answer turns away wrath, but a harsh word stirs up anger.” Pardon my grammar… but AIN’T THAT THE TRUTH? Nothing takes the “wind out of the sails” of an angry store associate quicker than to be gently confronted with the truth of the law. The law is on our side, after all. Some folks are “deaf” to the truth though and because of preconceived ideas will thumb their nose at the law and insist persons with service dogs STAY OUT. Even if you need to call the police to file a report and insist on your right of entry and service, staying poised and in control should be paramount. When we lose control, it only exacerbates the situation. Worse? It sets up the next person with a service dog to encounter this same store associate with an even BIGGER chip on their shoulder.

Tired of paying the same ticket price as person’s with normal hearing at a theater, only to hear VERY LITTLE? If you want to promote open captioning or rear-window captioning… do so with a positive attitude armed with information about who uses it, what the law says, etc. Marching up to a theater manager with both guns a-blazing… accomplishes very little. When theaters do provide these services and use this available technology, be sure to thank the management. I’ve heard some HoHearies say, “why should I? Folks with normal hearing don’t have to thank the management for being able to hear a movie they paid for!” But is that the point? We are trying to raise awareness and help companies like movie theaters to provide these things so that we all benefit. (Hearing Loop.org has a great article here). We need to earn their respect. Thanking management does a number of things:

1) it reminds them who we are… real people who enjoy attending things like movies.

2) it helps them keep the numbers in perspective… many people use and enjoy captions. These “thank you’s” equal number of tickets sold and helps them remember the big picture…

3) it helps them see we ARE appreciative… not demanding snobs or spoiled people with a sense of entitlement.

A great blog post by Shanna Bartlett Groves on this issue can be viewed here and here.

Are you trying to get your church on board with providing an induction loop for people who use hearing aids and cochlear implants? Is the task difficult because there are not very many this would effect… or perhaps there is ONLY you? You will have an attentive audience and lay the groundwork for actually achieving this freedom to hear in church if you handle it the right way. Do not march up to the deacon board with a self-righteous sense of entitlement. Should they care that ALL may hear and participate in church? Well duh – of course they should! But we need to ask in the right way… with the right attitude. Non-profits have more freedom to say “no”. However, we can help them understand what this may mean for those who utilize t-coils in a way that our churches are eager to spend that little bit of money necessary to put in a virtually hassle-free technology that allows us to hear. If you hurl accusations about their lack of “Christian love” and belittle and chastise them… you will only insure they begin to believe that people with disabilities are demanding folks with a sense of entitlement. You may even need to show them how much you care about this issue. Offer to head up fund-raising for this technology. For many smaller churches, funds may be very limited in what they can provide even if they WANT to do so. (Hearing Loop.org addresses this issue here). I have a friend in another part of the country that finally talked her church into purchasing an induction loop system. She then went straight to the local newspapers and pushed for a story to be done on what this small church was doing to provide equal access for those with hearing loss. Her church ended up getting a great deal of positive publicity… reminding all in the community what churches are suppose to be doing in the first place. (A great blog post by fellow HoHearie, Shanna Bartlett Groves can be viewed here).

Yes. I think knowing our rights and standing up for equality is important. It is the “how” that concerns me. Heaven forbid that the way I handle something negatively influence the NEXT person who has a specific life challenge! We influence the thinking of those in the general public as well…

Several weeks ago I was at Costco picking up bulk items that we insist on purchasing in case the world should end. The carts there are ginormous (hey… it’s a word!), if only to hold the huge packages of paper towels, toilet paper, and bottled water we purchase to save a little money. In the pharmacy section I was busy searching for generic antihistamine. An older couple noticed me, first by spotting Chloe and then by noticing the cochlear implant (after reading her vest). They sidled closer with genuine interest on their faces. The lady said, “That’s one of those bionic things that people use to hear better with, right?”

“Yes,” I replied with no small amusement. Noticing the hearing aids in the ears of the gentleman I added, “I have no regrets about getting one either!” I had to repeat this actually, for he didn’t hear me very well the first time! I started to share a little information about my own hearing loss when the man piped up and said, “Well if God wanted me to hear better than I do now, He wouldn’t have allowed me to lose my hearing.”

Now I could have gotten all feisty about someone questioning my own acceptance of what God has allowed in my life. I felt a little “twinge” even – to set this man straight. But I knew this would help very little where as a gentle response would accomplish much more in the long run. “Really? I look at my cochlear implant as using technology available that HE allowed as a blessing in this day and age in which we live!” The man looked confused as he had not heard me very well, but the woman said, “Honey never mind him. He can’t HEAR. You hear so much better than he does! Where did you get your implant?” … and with that I had the opportunity to plant a seed of hope and to share information that may one day provide better hearing for this (ornery) man. It is, after all, all in the attitude!

What is your attitude as a person with disABILITY? Do you at times behave as if you are entitled? Learn to gauge the reactions of those around you as you share what could be done to help you communicate more effectively. Ask for evaluations of how you handle these situations from people who are close to you. Respect is earned. May I never behave or respond in such a way that another person with disABILITY is judged at the onset to be a person with a sense of entitlement.

Denise Portis

© 2011 Personal Hearing Loss Journal

Clift, E. (March 27, 2011). From Students, a Misplaced Sense of Entitlement. The Chronicle of Higher Education. Retrieved November 14, 2011, from http://chronicle.com/article/Students-Should-Check-Their/126890/

I Have Meniere’s Disease – Harsh Reminder

Published on by hearingelmo3 Comments

I have Meniere’s Disease. It is easy for folks to forget that as the disease is “invisible”. Amazingly, I sometimes forget I have it myself. So that is just embarrassing! GRIN. Meniere’s disease manifests itself in individuals in a variety of ways. The disease lacks specific symptoms and triggers that are true of everyone. The disease varies person to person. For myself, the weather tends to be a very specific trigger for me. If pressure systems come into the area that include heavy rains or even high humidity, I know that I will have a “bad balance day”. If that day is simply the beginning of a string of similar weather days, I can be so off-balance by day 3 or 4, that I practically have to CRAWL up and down steps. It’s rather embarrassing to crawl when you are 45 – believe me!

Here in Maryland, we have had a significant amount of sunny, low-humidity days. As a result, my balance has been pretty good. Yesterday, I did laundry and actually jogged up and down the steps WITH a laundry basket. Yet I forget sometimes that in spite of my having few visible symptoms, I still HAVE Meniere’s disease even on bright sunny days.

Chloe does a number of things for me, only some of which are hearing alerts (what she was originally trained for at Fidos For Freedom). Chloe has also been trained to help me with a number of “balance assist” tasks which are very helpful on days I am experiencing Meniere’s disease symptoms. As a matter of fact, there are weeks that Chloe actually does more balance work for me than she does hearing alerts. One thing we have taught her to do is to “roll” her own blanket. I carry a blanket that is HERS. The blanket goes to every place I teach. It smells like her and she knows it is her “safe place” to be unless I ask her to do something for me. I usually put it out of the way in the classroom, but where she can easily see me. The blanket and Chloe are usually within 4-5 feet of me at all times. Below is a video of Chloe “rolling” her blanket — she adjusts the carpet square to be high enough that I can easily reach it without having to bend past my limitations.

Harsh Reminders

I get aggravated at family and close friends sometimes when they make suggestions for me to do something or try something that they KNOW I cannot do. It’s easy to forget certain things I cannot do because I don’t walk around with a sign on my shirt that says, “Beware of fall when bending!” You know what? Sometimes the person who forgets what I can and cannot do is – ME. You’d think I’d always be aware of the fact that I cannot bend to get something off the floor without paying the price. For me… bending far enough to retrieve something off the floor means that I lose consciousness for just a few seconds. Everything goes “black” in my vision, and my “hearing” (even with a cochlear implant) turns off. As soon as I stand back up, everything snaps back into focus. If I bend quickly, (for example to try and catch something as it is falling), I usually “join” the item on the floor… only I am sprawled out looking ungainly and mystified as to how I got there.

We’ve had beautiful weather here in Maryland lately. I need to remind myself on days like these that I still HAVE Meniere’s disease. In class this morning, I began gathering my things up to pack into my bag and exit the room. I dropped my roll sheet, so Chloe went over to pick it up and bring it to me (an automatic retrieve). As I was standing next to her pink blanket, I decided to save myself time and reached down to pick up her blanket. I lost my balance and my forehead crashed into the podium. After connecting with a wicked CRACK, the impact popped me back on my caboose. Thankfully, I didn’t lose consciousness. Chloe trotted over to me with the roll sheet and dropped it into my lap. She wagged her tail at me, nose 3 inches from my face.

“Hey Denise! Umm… why are you on the floor?” (Yup. I can read my assistance dog’s mind. Scary, huh?)

“Guess I should have had you roll your blanket, huh Chloe?”

Upon hearing “roll blanket”, she calmly rolled the end of the blanket and then tugged it over closer to where I sat.

I heard a student over my shoulder ask, “Ummm. Mrs. Portis? Are you OK? Was that your HEAD?”

I tried to chirp out in a manner that was convincing, “Oh sure! I’m fine, no problem!”

As I used Chloe in a stand/stay to get off the floor… I thought to myself one word – over and over again.

stupid

Stupid

STUPID!

Harsh reminders are needed from time to time, if not for any other reason than to remind us of the consequences of forgetting our own limitations.

We need to remember our own limitations. As a person with hearing loss, it helps me to remember that I cannot hear well in really noisy, crowded areas. If I need to have a conversation with someone, it is better to ask them to step over to the side out of the “hub-bub” of noise if I need to talk to them. Failure to acknowledge what I cannot do well (hearing in noise) only results in that I will be frustrated and angry at my inability to understand the conversation. If I want to play with my dogs, I need to remember to sit on the floor in order to tug on toys, throw balls, and squeak stuffed animals at them. If I try to “play” standing, I am sure to take an unplanned nosedive.

Have you had some harsh reminders about your own invisible illness or disability? Some lessons are hard to learn!

Denise Portis

© 2011 Personal Hearing Loss Journal