Category: Challenge

To Be Understood Means to Understand

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Melissa and her family
Melissa and her family

On 7/23/12, Hearing Elmo welcomed Melissa Sisco, from Alabama as a first-time guest author. You can access that post HERE. Hearing Elmo warmly welcomes Melissa again with a TWO PART post about her own invisible illnesses. Melissa is the mother of two young daughters and was first diagnosed with Meniere’s Disease in 2007. Melissa also has asthma/allergies, a heart condition, weak bones, endometriosis, and diabetes Type II. Melissa admitted that “Meniere’s Disease has been the single most challenging medical diagnosis I have experienced in my 32 years”.

The hardest things we encounter in life can sometimes be the ones you expect and assume will be easy. I am learning to realign and reign in my own expectations/assumptions. When you have struggled with a progressive illness for over six years, say one like Meniere’s Disease that causes hearing loss and loss of balance, you assume your family will support you the entire way. You assume that they will take the time to read the literature, the pamphlets from the doctors or at least even use Google or WebMD. You expect that they will get the hint as you slow down while walking, because your world has begun to buckle and spin. You assume that they will take it in stride when an episode of vertigo strikes and can only be remedied by lying down –for hours sometimes. You assume they will understand that an impromptu dunk in the water will harm your health in multiple ways because you have holes in your ear drums and have to wear ear plugs when you risk getting wet. You expect those closest to you to understand your new world, but the reality is that they don’t. Not at first. You actually have to teach them, or paint the picture if you will. They are not any more adept at struggling with accommodating my illness than I am. It really isn’t fair to expect them to know what was also foreign to me a decade ago. Experience can be the harshest yet greatest teacher.

Recently, a family member commented, “God, you really are deaf!”    Apparently he had been speaking to my deaf ear for several minutes without my noticing, “testing” my “deafness.” I simply turned to him, so we were face to face (even ground for me), and said, “Yes, so if you want my attention, try my right ear or tap my arm or shoulder please.”  All while smiling a really tight painful smile. Now what I really wanted to say was closer to a negative word, followed by an expletive, and ending with Sherlock. But I digress.

I admit I am still in the resentful stage, I resent that I should have to be the one to teach others about my own illness and its effects on my life. I never aspired to be a teacher; I haven’t the patience of those saintly souls. For reasons beyond me God has placed me squarely in a position where sometimes I have to teach, to save my own sanity. It’s just awfully annoying to teach family and friends who I expected to learn a little on their own in the last few years. My disease is nothing new anymore. I’ve learned a lot of my “new normal” on my own, (although I’ve been blessed to have great advice from those who’ve already invented this wheel –ahem Denise, Gayle, Shanna) but I do get downright angry when I have to teach someone something that should be obvious – at least in my opinion. I haven’t been wearing an absurdly expensive hearing aid in my left ear for 4 years just for kicks and grins. As more of my conversational frequency in my good ear wanes I have found that small talk is just no longer my cup of tea. I still avoid public situations in general. I have learned a distinct dislike of restaurants, malls, arenas and movie theaters. I am working on that, but I am a country girl at heart anyway. My country is just a bit quieter than it used to be, which is rather nice sometimes.

I have also found that there is finally a language I am really struggling to learn.  It’s called American Sign Language.  The only one I really need to know, and it makes Hebrew look like a piece of cake. (I would say Greek, but I can actually read that!) I’m quite certain that I appear as if I am under the influence of some sort of psychoactive drug when I’m trying to sign. The nuances of hand gestures completely elude me in a way that centuries-old grammatical rules never did. I can’t even profess to be able to understand it well, either. I get so focused on trying to comprehend one particular gesture/word I miss the next seven and am therefore totally lost. Like missing the pinnacle episode of your favorite TV show and trying to tune in to the next one and catch up – it just ain’t happennin’. I haven’t given up, but gosh is it hard. Bill is a great guy, but you can only make him repeat a phrase so many times before you start having weird animatronic/you-tube nightmares. (Thank the Lord, and Bill, for Lifeprint.)

I have recently also begun to despise the words disability and handicap with the exception of their necessary legal presence. I really just don’t see myself that way. I still do a number of things on my own; to include working, driving, doing basic household chores, etc. Although I despise it, I can grocery shop on my own, most of the time. I just can’t reach for anything on the top shelf, or on the bottom shelf, without relying on my cane or a sturdy wall or post. Sometimes it’s just easier asking for someone’s help. NOTE: Do not rely on shopping carts (that’s buggies for us southerners) for balancing because they have wheels. Really bad idea. Trust me.

I am able to be much more up front with people about my invisible “handicap.” I can flat out tell a stranger that I am deaf/hard of hearing, I need to see their face to understand them or I will ask them to type/write out something complex.  Most of the time this helps, and it is only occasionally that I encounter special people who begin to mimic Dr. Seuss using a bullhorn. Unfortunately, rhyming and loudness are lost on me. And it really annoys my co-workers or whoever else happens to be with me at the time. Sometimes I wish my hearing aid had a neon flashing light that proclaims “Deaf lady coming, repeat, deaf lady coming,” simply so I can save my breath. Sometimes I am saved by the Grace of God in the form of my own eldest daughter. She missed out on my shyness gene and takes the world by storm. She is quite eloquent when I see her shout at the top of her little six year old lungs, “My Mommy is deaf! Don’t you get it?”  All while sighing, knitting those eyebrows, putting her hand on her hip, and glaring at the perceived offender.  (Yes we are working on the politeness and manners thing- but it is easier said than done.)

A lady, let’s call her an acquaintance, I run into sometimes at work, asked me, “What is your cane for? I notice that some days you have it and some days you don’t.”  Another unexpected and unwanted teaching explanation. I replied to her that I have a balance disorder, some days I need it, and some days I don’t. Though you may not always see the cane it is usually nearby, just in case my power steering fails again without warning. She smiled at me with that look of “Bless your heart,” which forces me to fight the urge to strike her with said cane. I despise pity. I don’t want pity. I just want –a little bit— of understanding.

And I have to understand that not everyone else can see my illness, even if a person has known me for thirty plus years. One of my mandatory responsibilities now is to help others understand me as I learn myself. I have to constantly remind myself that, though my illness is invisible, dealing with it is truly a two way street. No one ever said it would be easy.

PART TWO: “It’s Not That Easy” will run Friday, July 19, 2013.

Thank you to Melissa Sisco!

Denise Portis

© 2013 Personal Hearing Loss Journal

I’m NOT Always Upbeat. Sometimes I’m just “BEAT”

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depressed 1 (2)

I received an email this week from one of Hearing Elmo’s readers. With her permission, I wanted to use one of the questions she asked for this post.

“Love your blog, but sometimes it makes me depressed. You are always so upbeat, and it seems as if you have it all together. Don’t you ever have a bad day?”

I had to smile when I received this email, and I’ve had this question before in various venues. I have actually shared “the good, the BAD and the UGLY” before on Hearing Elmo, but I do try to keep it positive. In doing so, I also strive to keep it REAL.

Having said that, I have bad days. Believe me! As a matter of fact the summer months are often my worst. I don’t work as much – or like this summer, not at all. Too much time on my hands is not a good thing. I try to stay busy and I made sure I signed up for some classes. I’m busy applying to grad schools (again). I’m cleaning more (grin), and have some extra time for Fidos For Freedom, Inc. However, I get depressed. I have days I just feel BEAT.

i surrender

Did you know that it is perfectly normal for people with chronic illness or invisible (or visible) disability to get depressed? Everyone struggles with periods of depression. Life is hard. I use to wonder if people with physical challenges had a higher probability to be depressed compared to the population without those challenges. In my interactions with various populations, I couldn’t help but wonder if we are more prone to depression? Then I developed a passion for psychology, so I thought one day, “What do the experts say?”

After writing a number of papers on the topic and being forced to look up scholarly, peer-reviewed research, I found that people with disabilities CAN be more prone to depression. So if you have days you just want to surrender? Give up? Wave that white flag? You are NOT alone.

Bryan Kemp (2005) said, “Depression is one of the most common, if not the most common, secondary conditions associated with disability. When it is left untreated, depression can cause inordinate personal suffering, increased disability, additional health problems, and stress in others” (p. 234). I thought it was very interesting that although depression is not an uncommon diagnosis, in folks with disability it can actual make your disability WORSE. I have friends and fellow-bloggers whose disability actually IS depression. We cannot continue to pretend that a diagnosis of mental illness is not debilitating. It is a SERIOUS illness. However, depression can be and is often a comorbid diagnosis to people who live with chronic illness or invisible disabilities.

In one study, 71% of people with Meniere’s disease were also depressed (Coker, Coker, Jenkins, and Vincent (1989). For people who have hearing loss, “Several studies have shown that uncorrected hearing loss gives rise to poorer quality of life, related to isolation, reduced social activity, and a feeling of being excluded, leading to an increased prevalence of symptoms of depression” (Arlinger, 2003, p. 17). These stats are only for the two “major players” in my own life. People with Chronic Fatigue Syndrome, Fibromyalgia, Lyme disease, Multiple Sclerosis, Parkinson’s, Diabetes, vision loss, anxiety, and many OTHER conditions are often struggling with comorbid depression.

So are you having a tough time coping with your own physical or emotional challenges? Do you struggle with symptoms of depression in addition to your day-to-day challenges? You are not alone.

So please know that although I don’t often write about feeling depressed or anxious, although I do not post about what a “terrible, horrible, no good, very bad day” I am having, I do indeed have these kinds of days! I’ve struggled to get out of bed (despite my red-headed, well-trained alarm clock). I’ve cried myself to sleep. I have pushed people away in anger – embracing self-imposed isolation. I’ve yelled at God at how unfair it is. But in the end, I do strive to be upbeat. It isn’t always easy. There are times I feel like a big, Fat, LIAR. Yet, I work hard at having a positive attitude. I’ve learned that if I change the direction of my “thinker”, I will change the attitude of my “feeler”. It is really cognitive behavioral therapy in a nutshell! Laura King (2011) said, “… the emphasis is on reducing self-defeating thoughts, with its emphasis on changing behavior. An important aspect of cognitive-behavior therapy is self-efficacy” (p. 538).

Something that really helps me is working hard to reach out to others. I have a number of support groups that I meet with in person, others through venues like FaceBook, and still others in online forums. Knowing I’m not alone is very important to me. Being able to commiserate with others who truly understand is of great value. I encourage you to reach out to others. Even if you are unable to locate “in person” support groups, there are a number of ways to find this support online. We need each other.

Denise Portis

© 2013 Personal Hearing Loss Journal

Arlinger, S. (2003). Negative consequences of uncorrected hearing loss: A review. International Journal of Audiology 42(2), 17

Coker, N., Coker, R., Jenkins, H., Vicnent, K. (1989). Psychological profile of patients with Meniere’s disease. Archives Otolaryngoloy Head and Neck Surgery 115(11), 1355-1357. doi:10.1001/archotol.1989.01860350089021.

Kemp, B. (2005). Workshop on disability in America: A new look. Washington D.C.: The National Academies Press.

King, L. (2011). The Science of Psychology. (2nd ed). New York: McGraw-Hill Publishing.

 

Active Listening

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Having learned early on in my hearing loss journey to "actively listen", by 2005 I was a near expert - but only because of necessity!
Having learned early on in my hearing loss journey to “actively listen”, by 2005 I was a near expert – but only because of necessity!

In a recent PSY-215 (Psychology of Relationships) class, I went over some details in regards to communication. We were studying “active listening” and how it can benefit people when communicating.

Communication is more than being able to articulate your ideas and feelings. We have a responsibility to be the best communicators that we can. We owe it to ourselves to learn to write well, speak well, and convey our thoughts AND emotions in a positive way that will be well received. However, part of communication is on the receiving end. After all, if you are talking or writing and no one is there to listen, that isn’t really communication. According to Miller (2011), there are two important tasks as “receiver” in a conversation. “The first is to accurately understand what our partners are trying to say, and the second is to communicate that attention and comprehension to our partners so that they know we care about what they’ve said” (Miller, 2011, p. 170).

We can do this by paraphrasing – repeating in our own words what we heard to give the other the opportunity to correct anything we were mistaken about in listening. As a person with hearing loss, I learned early on how valuable paraphrasing was to communication. It was more than a matter of understanding the true intent of what was being said… at times I wasn’t HEARING all that was being said. Paraphrasing allowed me to – in my own words – repeat what I thought was said. If I misunderstood both words or meaning, the other person was able to correct anything.

Paraphrasing is a great tool if you know someone with a communication disorder or hearing loss too! I would often frustrate family members by saying, “HUH?” after they said something. I later learned to repeat all that I heard and to be more specific about what I didn’t. This allowed them to fill-in-the-blank for me, or to paraphrase what they said so that I might hear more if it was put a different way. Example:

Terry: “I think we should go to The Point tonight because it won’t be crowded. We need to fill your car up with gas first so let’s take your car.

Denise: “I heard we should go to The Point but then I only heard something about my car…”

Terry: “Oh… I said your car needs gas. I noticed the last time I was in it, so let’s swing by the gas station first and fill it up!”

When communicating with a person with hearing loss, words – or even just PIECES of words (prefixes or suffixes) may be lost. Paraphrasing may put what you had intended to say in a different pattern, or using a different choice of words that the person with hearing loss DOES pick up.

Another valuable listening skill is perception checking. Perception checking is when “people assess the accuracy of their inferences about a partner’s feelings by asking the partner for clarification” (Miller, 2011, p. 170). Example:

Daughter: “I can’t believe you said that  — —–  , (wails) I’ll never be able to go there again!”

Me: “I missed what you explained that *I said*, but I can tell you are very upset – perhaps embarrassed. Is that right?”

Using active listening tools allows us to be RESPONSIVE. That can only be a good thing! You don’t have to be tucked away in a quiet nook of the kitchen like the picture above either. Once you become a skilled active listener, you will use these tools automatically when communicating. It can be done with environmental noises competing. Active listening can be done when in a hurry, with only a moment or two to communicate before you rush out the door.

Something Miller fails to mention in his review of active listening is eye contact. Yes, I believe we can practice active listening without eye contact (though maybe not if you have hearing loss). However, I believe to truly engage the other person, to acknowledge that we are listening and working to listen, requires eye contact. This can be done even when we are in a hurry. Trying to get out the door while someone is explaining they’ll need picked up from work? Put the cell phone up as you reach for the door handle, take a deep breath and make eye contact. Listen. Actively. (smile)

Denise Portis

© 2013 Personal Hearing Loss Journal

 

A Stolen Life

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stolen life

It’s that time of year again. The end of a semester. The beginning of “panic week” for students in colleges all across the country. For my own classes, this means that students are rushing to get it the extra credit because their grade isn’t going to be  what they’d hoped. I offer a fairly easy, yet time-consuming extra credit incentive.

– Read “A Stolen Life” by Jaycee Dugard

– Take a quiz on it (and pass)

– Turn in a 3-5 paragraph essay of your own reflections on the book

I’m always tickled at reading the student’s responses to this book. It’s an “easy read”, but difficult material. Jaycee Dugard writes about her long-term confinement after being kidnapped. Students normally respond with one of three attitudes.

1. They are ticked off. The theme of their essay is how unfair and unjust this case was. They are upset at all the many “players” along the way that should have seen, should have intervened. They yearn (and demand) justice.

2. They are shocked. Many are fully aware these horrible crimes occur, but to read a first-person account of someone who SURVIVED really leaves them wondering how the world can be so evil.

3. They are grieved. Some feel very down – even depressed – after reading the book. Many actually try to contact Jaycee through forums or email to let her know they look up to her and wish her the best. Some may have experienced some form of abuse themselves so they feel empathy as well. They admire Jaycee’s courage and resilience.

How Do We Respond?

While reading essays this weekend and assigning extra credit points to hyperventilating students, it struck me how similarly we tend to react to life’s problems and challenges.

I know plenty of folks who have responded to invisible illness or disability by being ticked off. They feel it is unfair they have to shoulder this burden. They may enter “offensive mode”. They make sure everyone around them are aware of the unfairness of it all, and to make sure everyone treats them with continued respect – disregarding the changes in their lives. After all, they didn’t ask for them.

Some people are shocked. The rug has been jerked out from under them and they are still sitting on their fannies watching the room spin. How did this happen? Why did this happen? I’m all ALONE! Someone HELP ME! They are often at risk to isolate themselves or become depressed.

Many people feel grief, actually going through the stages of grief as they learn to cope with their “new normal”. They may reach out to others – their peers who face the same struggles that they face each and every day. They eventually find – and become – heroes.

Do you feel that your invisible illness or disability has essentially “stolen” your own life? Do you feel out of control and unable to cope? Have you responded with anger, shock, or grief?

The Internet is a wonderful thing. I truly believe that people with invisible illness or disability are at an advantage compared to the lives of those who experienced the same before the Internet. It is a simple thing to go to your browser to search, discover, and benefit from online forums, support groups, and advocacy communities. You are not alone.

Do you feel as if your life was stolen? Jaycee eventually confided in someone, was rescued and reunited. Need a listening ear? I may be deaf but I listen very well. Or, there are many other avenues that you may find peers to help you through this time. Take part in your own rescue by reaching out. Reunion and a victorious, purposeful life may be just around the corner.

Denise Portis

© 2012 Personal Hearing Loss Journal

 

Embracing Freedom

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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

What I SHOULD Have Said

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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

 

 

I Confess I Can’t Hear You…and That’s Okay

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I met Shanna a couple of years ago through FaceBook. We share a passion for positive advocacy and a love for people with hearing loss. Shanna has taught me a thing or two about good advocacy towards movie theater captioning! I’m always thrilled to have her guest write for Hearing Elmo!

By Shanna Groves / LipreadingMom.com

Time to ’fess up. My ears aren’t as sensitive as they used to be.

I confess that I pretend to hear everything my kids say even when they’re calling each other “stupid” and I don’t know it.

I confess I laugh before a joke’s punch line, not because of a warped sense of humor, but because I didn’t catch the joke’s first sentence.

I confess that I am unable to hear my telephone ring without my hearing aids in.

I confess that I don’t understand most dialogue on TV without the closed captioned turned on.

I confess that I get irked when the closed captioning isn’t working is turned off.

I confess that most people I haven’t seen in years are shocked when I tell them I have to read lips to “hear” them.

I confess that my older two kids usually act as my ears in the following situations: when a person asks me a question and I don’t respond; when someone knocks softly at my door and I don’t answer it; when the phone rings and I’m not wearing my hearing aids; when my youngest child wakes from his nap upstairs and is crying at the top of his lungs; when anything in the house beeps.

I confess that I have learned to accept my limitations. I will never be successful in making a phone call without some sort of special accommodations (i.e., using a loud-volume phone or speaker phone; asking the person on the other line to repeat themselves 2-5 times).

I confess that being a hard of hearing mom is not my choice. In fact, it can make me downright cranky.

I confess that being a hard of hearing mom makes me smile sometimes, especially when my kids are squealing, whining, moaning, or acting like brats.

I confess that being a hard of hearing mom has changed me. I’m not as quick to judge others who are different than me.

I confess I’m not as impatient as I used to be. I don’t get as frustrated with having to repeat things to a store cashier, to wait in a long line, or drive in rush-hour traffic.

I confess that being a hard of hearing mom has changed me. And I like how I’ve changed.

Show Me Your Ears

Now that you know my confessions, can I ask you a favor?

Join me in my new awareness campaign Show Me Your Ears: To Promote Deaf and Hearing Loss Community Awareness.

The idea is simple:

1) Take a picture of your ears, hearing aids, and/or cochlear implants. Even if you don’t wear anything in your ears, take a picture.

2) Email your photo to Lipreading Mom at sgrovesuss (at) msn (dot) com. Include the subject line: Show Me Your Ears. Include your first name, name of your hearing aids or cochlear implant product (if applicable), and how long you have worn them.

3) Watch my blog, LipreadingMom.com, in the coming weeks. Your photo may be featured!

I have blogged extensively about my progressive hearing loss on this site and my initial reluctance to wear hearing aids or show them off to anyone. I was afraid of what people would think about them. Would they think I was unable to communicate with them? Would they ignore me?

Finally, I made a decision: I am going to embrace my hearing loss. I’m going to show my hearing aids to the world. And so I do!

Will you help me to embrace that—hearing loss or not—all ears are unique, beautiful, special?

Hard of hearing or not, I confess that showing my ears to the world has been liberating. Will you join me in this campaign?

About the Author
Shanna Groves has been a hard of hearing mom since 2001. She is the author of the novel Lip Reader and writes extensively about hearing loss issues at http://LipreadingMom.com.  

The Road to Rescue

Published on by hearingelmoLeave a comment
Hunter with service dog, Raven.

A young woman I have come to admire, Hunter Lia Zager, received her service dog from Fidos For Freedom, Inc. where I train with Chloe. Hunter has a rare and unusual disease that even leaves her doctors stumped at times. She desperately needs the funds to get her vehicle modified for accessibility. The state is helping with a big chunk, but she still needs to raise over $12,000 herself. Hunter is only 25 years old and currently relies on (often unreliable) public transportation to go to work, doctor appointments, and much more. Imagine being limited to your home many times, simply because you lack a vehicle that can carry wheelchair, service dog, etc. Minimum donations are only $1.00 and you can donate using PayPal, or debit or credit card. If you would do two things?
1) Share this need with others on your own BLOGS.
2) Consider donating – even SMALL amounts add up.

I know times are hard for many people. However, I want to help this courageous, wonderful young woman reach her goal so that she can have reliable, accessible transportation. Please help. Please share! Thank you!

TO DONATE

Hunter’s story:

My name is Hunter Lia and for the first time in never I’m asking for help. At 25 years old I am terminal, but I have never held my arms up and said I was willing to stop my fight. 5.5 years ago I became ill with a very rare neurological disease, Complex Regional Pain Syndrome (CRPS), the most excruciating disease known to modern medicine. The road has been hard, but I am so terribly blessed to have such wonderful people and a wonderful service dog in my life who have helped carry me through the toughest of times.

This disease has consumed my entire body and caused me to reach deep stage 4. CRPS didn’t stop there, it turned my body into melting pot of other diseases. It has paralyzed areas of my body such as my intestines, which are incapable of processing food (Gastroparesis), created a neuro-cardio disease, Postural Orthostatic Tachycardic Syndrome, a neuro-pulmonary disease, Respiratory Dystonia of the Chest Wall, Spinal Stenosis, and countless other conditions and diseases. It is also now believed that on top of all this, Multiple Sclerosis (MS) might be one of my latest additions. Having every aspect of your body fail you is a tremendous burden for one to carry, especially when you’re just 25. Most 25 year olds are able to go out at night, travel, make plans for the future…for me, just the thought of that takes up all my energy. I wear devices for low hearing and low vision, but outside of attempting to take my wheelchair and service dog everywhere, it’s difficult to make my life easier and manage with a disintegrating spine, excruciating pain, and countless other symptoms and challenges.

One reason I’ve struggled so much is that my vehicle is not accessible. I traded in a SUV for a minivan in the hopes I could outfit it to all my body’s needs. I never realized the costs would be over $45,000 to adapt the vehicle. I am getting state assistance, but the last 25% is my responsibility. With all the other medical expenses I’ve had to incur, I don’t have even a fraction of the money to pay the company responsible for outfitting the car. I need your help. I am trying to raise over $12,000 to make my vehicle accessible. If I could do this, I would no longer have to worry I wouldn’t be able to keep my job and health insurance due to transportation challenges, worry about not having a vehicle in an emergency, reach doctors and specialists, and really just live life to the fullest. I know this economy is difficult, but every penny will help me reach my goal. And if that’s too difficult, passing this on would mean the world to me. Thank you for taking a moment to ready my story.

TO DONATE

It’s Not Easy Being Green

Published on by hearingelmo5 Comments

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

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

Am I OK Being This Way?

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

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

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

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

Acceptance ≠ Resignation

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

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

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

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

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

Don’t Pin a Super Hero Cape on Me!

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

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

I welcome your thoughts on this!

Denise Portis

© 2012 Personal Hearing Loss Journal

It’s Not Easy Being Green lyrics

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

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

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

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

A Whispered Thank You

Published on by hearingelmo7 Comments
Praying Mantis calisthenics – photograph by Deborah Marcus (NC), friend and nature photographer

Not long ago while visiting in NC, I spent an afternoon with my friend, Deb, at the North Carolina Zoo. Deb takes pictures of life in nature; everything from plant life to animal life (and everything in between). She sees things that most folks miss and often stopped and pointed out things I would have just walked right by as my “notice-er” is out of practice. When Deb takes a picture she always whispers, “thank you”. When I first caught her doing it we were just thrilled and tickled that I was actually hearing her whisper of thanks! Cochlear implant sisters-in-arms, we always celebrate those moments.

However, since my visit I have given her habitual murmured thanks a lot more thought. When I tend to think on somethin’, I ponder, speculate, question, and soul-search. Eventually I write about it – even if it takes me almost 15 months to get around to it!

Like a Dangling Spider Cares?

I have to admit, when I first heard her thank a lily-pad, skimming dragonfly, I thought, “Umm. This critter does NOT care if she thanks it for the Kodak moment or not”. But it’s deeper than that. An attitude of gratitude and respect is cultivated. We certainly aren’t born with it. I remember teaching my toddlers “please” and “thank you”. Sure… some of that can be a learned behavior from appropriate modeled examples. Some folks are just naturally friendly and easy-going. Some walk around like a sour puss (I’ll not mention any names) and thanks is a foreign language. Most of us fall somewhere in between, our emotional health dependent on life circumstances. This is why an attitude of gratitude must be created and exercised faithfully to instill a HABIT.

It starts with the small things. Walking out underneath my porch to dispose of an empty plastic container, I thank the spider who just snagged that mosquito. (No. I haven’t found it in my soul yet to thank any skeeters). I try to thank my family members for doing things – EVEN IF IT IS THEIR JOB TO DO SO. I thank my students for turning their work in on time; or, if late, for eventually turning it into me! I thank the very pregnant, adjunct coordinator for my department, as she certainly has better things to do (like nesting) than to email all of us our reminders for the semester. I thank the person in training at the U.S. Post Office for waiting on me – which they stuttered out a very surprised “Your welcome!”. (Doin’ everything I can to assist in a decrease of “goin’ postal”). I thank the cashiers at the grocery store, Wal-mart, and CVS. (I thank the produce department workers, which is only funny to you if you know me well). I thank my waiter/waitress every time they do the smallest thing for me at a restaurant… even though it is their job. I thank “hound dog” for every task she does for me, which only increases the tempo of her wag. Do you see how far this attitude of gratitude can go?

Sitting with a friend waiting for small group to start one Sunday morning, I startled her by saying, “thank you for being my friend”. She sat there with her mouth hanging open waiting for “more” or for “the other shoe to drop” (like… would you DO THIS FOR ME?) She said, “That’s it? Well gee. I’ve not received a thanks like that in awhile!” I grinned at her but thought, ►well why not?◄  Why do we not thank the folks in our life even when there is no real reason? Keeping it to ourselves doesn’t bless anyone.

“Silent gratitude isn’t much use to anyone.”

~ Gladys B. Stern

Expressing our thanks must be EXPRESSED. William Ward said, “”Feeling gratitude and not expressing it is like wrapping a present and not giving it.” According to “Happy Life U” (you should check it out!) expressing thanks can actually improve emotional happiness.

New research shows that practicing gratitude may be the fastest single pathway to happiness, health, long life, and prosperity. In a remarkable study performed by Dr. Emmons, people who kept a gratitude journal for just 3 weeks measured 25% higher on life satisfaction after wards. They exercised more, drank alcohol less, and their families and friends noticed that they were nicer to be around. And the effects lasted for several months beyond the initial 3 week study. Other studies on gratitude are confirming these results. People who take the time to notice and appreciate the good things that come their way through grace, or luck, or the goodness of others are happier and more peaceful. They do better on cognitive tests and tests of problem solving skills. They practice healthier habits, have better relationships, are more optimistic and live longer. Gratitude is one powerful emotion (Happy Life U, 2011-2012, para. 5).
 

So What Has This Taught Me?

I already explained I’ve been thinkin’ on this topic for better than 15 months. I’ve even followed up with a conversation or two with my friend, Deb, about this which likely has her wondering why this is so important to me. I write a great deal about invisible and chronic illness, acquired disabilities, and living victorious lives in the bodies in which we find ourselves living.

Naturally, I had to research if being thankful could help folks in the community of souls of which I self-identify. Wood, Joseph, and Linley (2007), suggest that gratitude can be a powerful social support tool that folks with disabilities can use to help them. They asked 236 folks with various burdens (disabilities, chronic and terminal illnesses, addictions, etc.) to participate in a study that asked them to keep a gratitude journal. Folks discovered their written “thanks” eventually jumped off their pages and out of their mouths. “Gratitude correlated positively with seeking both emotional and instrumental social support, positive reinterpretation and growth, active coping, and planning” (Wood, Joseph, & Linley, 2007, p. 1076).

Allison Shadday has MS. She believes we need to shift our attention. “Sometimes we all have to slow down intentionally before we’re able to genuinely appreciate the many positive aspects of our lives. If you find yourself feeling critical or negative during the day, take a deep breath and redirect your attention to something for which you’re grateful. Notice if your body becomes more relaxed and your breathing more steady. Tune in to how your attitude shifts when you focus on the sweetness in life. This is living consciously” (Shadday, 2006, p. 51).

It seems… being thankful makes us healthy. More than that… it can make us HAPPY. The recipient of our thanks may not deserve it. They may not look like they need it.

Do

It

Anyway.

I think you will find it can change YOUR life, for the better.

Denise Portis

© 2012 Personal Hearing Loss Journal

Note:  You can “see” and “hear” more from Deb at http://visionsofsong.wordpress.com/

Happy Life U. (2011-2012). New Science of Happiness. Retrieved August, 12, 2012, from http://www.happylifeu.com/Attitude-of-Gratitude.html

Shadday, A. (2006). Embracing an attitude of gratitude. Inside MS, 24(6), 50-51.

Wood, A. M., Joseph, S., & Linley, P. (2007). Coping style as a psychological resource of grateful people. Journal Of Social & Clinical Psychology, 26(9), 1076-1093.