What I SHOULD Have Said

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

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

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

Experience Can Be a Harsh Teacher

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

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

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

How many of you have heard these comments? :

But you don’t LOOK sick.

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

You are feeling poorly AGAIN?

Are you ever well?

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

Don’t you get tired of being so lethargic?

I think you are just low-energy.

You are such a drama queen!

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

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

Maybe you should see a counselor…

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

Is this all for attention?

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

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

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

Prepare – it Empowers

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

But Be Careful…

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

1. Don’t be consumed by the preparation.

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

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

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

2. Don’t look for what is not there.

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

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

OH.

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

Denise Portis

© 2012 Personal Hearing Loss Journal

 

 

Note to Self: :-)

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

Why I Forget…

1. I get too busy

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

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

2. I’m hanging out with negative people

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

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

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

Why It Can be Hard to Smile, but Necessary

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

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

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

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

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

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

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

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

Denise Portis

© 2012 Personal Hearing Loss Journal

Decisions, Decisions…

For a totally unrelated reason, I was reminded this week that my husband cannot swim. I hate it when a discussion brings up old nightmares about the topic too! Goes to show how much our subconscious is at work… especially when sleeping. Anyway, this conversation about the fact that my husband cannot swim had me dreaming about one of the most terrifying events that led up to my banning him from going into the ocean.

The year was 2001, and my family and I were in Siesta Key, Florida. Terry was taking some classes to finish up his doctorate. Always nice when degree completion requires on-site classes in Sarasota, and you can time it where the whole family can be dragged down with you! Terry wasn’t getting much rest and relaxation. Going to class all day and putting the finishing touches on his dissertation were exhausting. At night he was glad to just catch whatever sunshine was left in the day and rest on the beach while I corralled the kids into a distance I could easily manage their activities.

I’m not sure what prompted a non-swimmer without a life vest to decide to get on an inner tube, launch one’s self into the ocean, and drift off to sleep. He swears up and down he had no idea he’d drift out to sea. After all, when he got past the breakers and could just snooze, the ocean was calm and serene. I’m the one with hearing loss (a fact I’ve made plain on this blog). But exhaustion and FREAKIN’ DISTANCE FROM SHORE will dissipate sound waves and keep someone from hearing shouted warnings; even from hearing ear-drum piercing screamed warnings. That’s right. Picture me on shore with kids, jumping up and down, screaming warnings that a riptide had caught him and he was oblivious to the danger. I remember thinking, “he has the room key around his wrist so I can’t even get into our condo and have one of the kids call my parents to let them know Terry drowned”. Morbid, yes? But I knew Terry could not swim AT ALL. The man cannot even dog paddle (something Chloe has told me since that she’s a little embarrassed about actually).

We may not have been able to attract Terry’s attention, but we did other folk’s. Soon a small crowd of people were whistling and hollering for “Terry!” A man, likely a native, stopped close to me and said something. I could hear the rumble and pitch of his voice. I stopped screaming long enough to sputter, “I have a hearing loss and have to see your face to hear”. So he touched my shoulder to get my attention and said, “He can’t swim? Want me to go after him?” I looked out at my still sleeping husband and agreed immediately. “YES PLEASE!!!!” (At least I’m polite...)

So the man went after my husband. He must have been shouting as he swam, because when he got closer to Terry, I could barely make out that Terry finally woke up. I saw a flail of hands, legs, and arms and prayed he’d hold on to that inner tube! The rescuer had started further up the beach to Terry and I think the tide and his strokes eventually got him safely to Terry’s side. He must have given him instructions to kick, which he did as well along with some steering, and eventually ended up on shore about a mile from where we all started. The small crowd of people had followed the kids and I down the beach. Some kind soul had picked up our things and carried them with us, knowing I wasn’t cognizant enough to even do that.

Drifting Off

A very popular topic for writers who discuss acquired disabilities and chronic illness, is social isolation. Isolation does not happen all at once. It is a gradual process; a series of small decisions and choices that eventually yield a self-perpetuated aloneness. We become “deaf” to the shouted (and well-meaning) warnings of people around us. Can we be rescued? Will we even allow a “strong swimmer” to intervene?

For people with hearing loss, isolation is almost a part of the process of learning to live with it. I know few people who are late-deafened that did not have at least a short period of self-imposed isolation. Why? Well experts have said of the late-deafened, “They no longer felt they belonged in the hearing world, and neither did they belong in the prelingually deaf world. Onset of deafness had left them in a twilight zone between worlds and had robbed them of their identity” (Barlow, Turner, Hammond, & Gailey, 2007, p. 442). Other acquired disabilities can produce the same isolation, however.

Physical difficulties can prevent people with a mobility impairment from creating social networks. Even the weather can keep some folks with mobility issues away from others. If you have a power wheelchair or scooter, you do not want to go out in the pouring rain or blistering heat. Despite the intentions of the ADA, not all places where friends get together are accessible. Whether you are born with some limitations, or acquired them later in life, disabilities or chronic illness may result in feelings of loneliness and isolation, and a lack of access to support information (Matt & Butterfield, 2006).

Not As It Seems

Not all decisions to RSVP to invitations with a “No, thank you” are because of isolation, however. Friends and relatives need to understand and trust that sometimes? Those “no’s” are not a pity party nor decision to pull back. I don’t go to pool parties. I have technology that cannot get wet and a husband who cannot be in the heat because of having one kidney. (And have you picked up yet that THE MAN CAN’T SWIM?) Sometimes there are very legitimate reasons for declining an invitation. A person may not be able to do evening gatherings because they have legitimate needs for an early night. Folks with disabilities and chronic illnesses often require more sleep than the average adult. It is not always possible to nap the afternoon before in order to go to some evening “shin dig”. Some people have to offer late apologies to activities they had planned to go to… but they have a “flare” when it comes time to prepare for an outing of fun and fellowship. The weather gets the final say for some of us. I can agree to go to a “Girl’s Night Out” a week in advance, only to have a weather system move in to where I can barely move in an upright position.

But…

I have also fudged about going to things I really could have had I really wanted to attend. Sometimes we say “no” because that is

EASIER or

HABIT.

We have to learn to police ourselves and ask ourselves some legitimate questions when our first impulse is to decline an invitation.

Social Networks

Nothing gets on this female’s nerves more than when I hear someone ‘pooh-pooh’ social networks like FaceBook, My Space, Blog networks, online support groups, and message boards and forums. I have heard holier-than-thou folks spout that these avenues “aren’t real people” and therefore are not “real relationships”. Drs. Patricia Obst and Jana Stafurik refute this much better than I can. “Online we are all able-bodied“. Online there is a “psychological sense of community and social support found through membership of disability-specific websites” (Obst & Stafurik, 2010, p. 525). These researchers looked at 160 different individuals who had various disabilities or chronic illnesses. “Results indicated that users did receive moral support and personal advice through participating in such online communities. Further, results indicated that online social support and feeling a sense of community online were positively associated with participants’ well-being in the areas of personal relations and personal growth” (Obst & Stafurik, 2010, p. 526).

I am always thrilled to have guest writers here on Hearing Elmo. (Interested? Email me at denise.portis@gmail.com). This forum has provided information and support to individuals “living it” and to family members and friends for information. I have been invited to write in other forums and welcome the opportunity. Ever heard the phrase, “dissemination of information”? The Internet makes us equal. It provides an easy, inexpensive way to find support, learn, advocate, and connect.

It can also serve as an avenue in which a warning comes through loud and clear… even to those of us who are late-deafened.

Are you avoiding outside activities?

Are the reasons you are doing so legitimate?

Are you connecting with others?

Are our decisions prompted by necessity or the result of anxiety, depression, and an attitude of giving up? These are important questions to ask ourselves. Please don’t find yourself adrift on an ocean with the shore out of reach. Ask for help. Discover a hero swimmer on their way to rescue you.

Denise Portis

© 2012 Personal Hearing Loss Journal

Barlow, J., Turner, A., Hammond, C., & Gailey, L. (2007). Living with late deafness: insight from between worlds. International Journal Of Audiology, 46(8), 442-448.

Matt, S. B., & Butterfield, P. (2006). Changing the disability climate: Promoting tolerance in the workplace. American Association of Occupational Health Nurse, 54, 129–134.

Obst, P., & Stafurik, J. (2010). Online we are all able bodied: Online psychological sense of community and social support found through membership of disability-specific websites promotes well-being for people living with a physical disability. Journal Of Community & Applied Social Psychology, 20(6), 525-531. doi:10.1002/casp.1067

Why I Love Winter – Restoration

 

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

We Are All Ambassadors

We are all ambassadors… of SOMETHING.

We are a living, breathing, advertisement of “something”. How you choose to live your life, and how that choice is reflected in your daily interactions with others is so important. We don’t realize when someone is watching, listening, or studying how we live. I think it is so important that people with invisible and visible disabilities live their lives in a way that reflects how their disability doesn’t overshadow their abilities. I suppose being a mother I have always been cognizant of “who is watching”. But now that my kids are grown and in college, they rarely study mom and her life anymore. Others are watching, however.

I shouldn’t be surprised when people stop me to ask questions or make an observation. In spite of having invisible disabilities (“hearing again” with a cochlear implant, and Meniere’s disease), I try to make them visible so that I’m not taken by surprise by not hearing something or getting bumped by “I’m in a hurry” people. I wear “bling” on my cochlear implant to draw attention to the fact that I hear differently than folks with normal hearing. I am with the constant companion of my hearing assistance dog, Chloe. Let’s face it. Nothing draws attention to “something is different about me” more quickly than entering places of business with a service dog. But in spite of my own mom’s occasional teasing of “you’re such a drama queen”, the biggest reason I am visible about who I am is because I’m not ashamed of it. I welcome questions and curious people. Hearing loss is so misunderstood. People seem to understand the culturally Deaf. People born deaf and then choose to embrace American Sign Language as their primary means of communication seem to be understood better than those who are adventitiously deaf and choose technology, surgery, speech reading, and spoken language.

Baby boomers were recently cited as a fast growing “hearing loss” crowd. (Story can be accessed here). Yet young people are part of a new (and alarming) growing crowd of individuals with hearing loss as the result of iPods, concerts, and environmental noises. (Story can be accessed here). I am proud of my cochlear implant and proud that I am now independent thanks to the assistance of my service dog. I don’t have to worry about what I am not hearing thanks to her alerts, and I know if I drop something she will be right there to pick it up for me. I like being an ambassador.

It’s not always easy. Sometimes I’m in a hurry and do not really want to stop to answer questions. That’s why I try to carry my card with me so that people can contact me through email. I also carry information about my cochlear implant and information about Fidos For Freedom. (We discussed how to handle questions when in a hurry at a recent client chat at Fidos For Freedom!) In this way, even when I am in a hurry I can still be a good ambassador for people with hearing loss and people with service dogs. Am I always a good ambassador?

No. No one is perfect. You are going to have “bad days”.

In spite of those bad days, however, I encourage you to remember that people watch you. Some are people who know about your invisible or visible disabilities. Others may be folks who know nothing about you. I love meeting other “great ambassadors”. If we ever “meet up” in public, don’t be surprised by a HIGH 5 from me!

Denise Portis

© 2011 Personal Hearing Loss Journal

On the Level

The “cheap” level I purchased this weekend.

We recently moved to reduce my husband’s daily commute from 3 hours to 10 minutes. In moving, things are often “lost”. A phrase often heard in our house lately has been “It’ll turn up!” Although cheerfully voiced and repeated with conviction, over the last 6 weeks there have been some items that have not turned up. One such item was the “level”. It was a really nice level too – approximately 18 inches long and very well made. I know that Home Depot advertises these digital gadgets that use an infra-red beam to determine – “level” – but I want something I can wrap my arms around and move around as if I need a hard hat and knowledge of construction! I have neither… but I like the illusion!

Anyway – I digress…

In the move, my husband and 20-year-old son put together a new T.V. stand for our 42-inch flat screen. The first time I sat down to watch a taped “favorite” I knew something was wrong.

“Umm… honey? The screen is crooked” I announced with confidence.

Terry did get up to stand in front of the T.V. with a critical eye, but explained with some assurance in tone and stance that, “It isn’t crooked. It’s fine!”

I gave him one of THOSE looks. You know the kind where you don’t actually SAY anything, but yet SAID a lot?

“Besides”, he teased, “how can YOU say whether or not anything is crooked or straight?”

“My world may revolve, but it isn’t skewed,” I retorted.

Over the next 3 weeks I continued to insist the screen was crooked. I watch very little television and what I watch is usually a taped show. When I sat to watch a taped cooking show or “Bones”, I didn’t want to have to turn my head to watch it “straight”. I was starting to let my frustration show that I seemed to be the only one who noticed the screen was crooked. Determined to prove my own “sense of level”, I went in search of our – erm – level.

It’s very frustrating to go through every nook and cranny of a new home looking for something you clearly remember packing and not finding the item! While picking up a few things at Wal-mart this weekend I got my husband’s attention as I headed for the hardware section. “I’m getting a cheap level,” I announced with NO ROOM for argument. He rolled his eyes but followed Chloe and I to the hardware department.

Ignorance is Bliss

When we got home, Terry and I unpacked the Wal-mart bags. I was busy in the kitchen when I caught sight of him in the family room standing in front of the T.V. He was putting the level on the television stand and then the T.V., all the while looking very thoughtful. I walked over to see if my sense of “level” could be trusted.

“It’s crooked,” he admitted with some surprise.

I tried very hard not to crow, for I’ve never done “chicken” very well. “Yes, honey. Do you think you can fix it? It is driving me bananas!”

“Oh sure I can fix it, but I’ll need Chris’s help. I’ll get it done this week,” he promised.

Do you know that over the last 2 days I have caught Terry standing in front of the T.V. numerous times with his head tilted? Ignorance is bliss. Now that he KNEW it was crooked, it seemed to exasperate him as well. The T.V. hasn’t MOVED or been ADJUSTED, yet now it seemed to really distract Terry too.

What “Bugs” Me, May Not “Bug” You

If you follow this blog because you have an invisible disability or service dog you will recognize a theme that often shows up here. No two disabilities are the same. Even folks with hearing loss have differences that make their hearing loss – or “hearing again” unique. I have become “pen pals” of a sort with numerous people who have Meniere’s disease. Yet I have never discovered any one individual who has exactly the same triggers as I. Through Fidos For Freedom, I have met a number of individuals with Multiple Sclerosis, mobility issues, deaf or hard-of-hearing, suffer from fibromyalgia, or other invisible “enemies”. I have learned that what may “bug” me may have no influence on someone else who may have a similar disability.We are as unique as our disability and abilities. I for one, like it that way. Something may look “crooked” to me and in need of straightening, but it may actually be fine to someone else.

I think we have to be very careful about assuming that every individual with a similar disability lives life the same way – experiencing the same frustrations and triumphs. The late-deafened crowd can be very bad about this as hearing loss is not “one size fits all”. Frequency, pitch, and decibel levels are all experienced differently by folks with hearing loss. Those of us who use cochlear implants and/or hearing aids may not experience the same benefit as another whose audiogram may look very similar. A listening environment may be very difficult for me because of the level of background noise, but you may be able to tune out things very easily with a specific “map” of your own CI.

Yesterday in church I experienced a painful reminder that what is “level” for one person may not be “level” at all for me. After church, the organist plays a piece of music as everyone leaves. People do a quick “catch up” with those around them or greet newcomers. Can I be honest a moment and say that it is all I can do not to wince when the organist begins to play? I try hard to control my expression, but I found myself gripping my hands together as I tried to make out the voices around me while my CI picked up the organ music loud and clear and deciphered the sound as best it could. I felt the hair on my neck stand up and …

I didn’t even know I had hair on my neck!

A plan of action is needed… I’m going to turn my CI off immediately after the service and just read lips.

If I tried to explain to someone else with hearing loss, they may not understand what the problem is and do just fine in that listening environment. As a matter of fact, I have noted a number of hearing aids in ears around me in the auditorium. They aren’t snatching the technology off from behind their ears and running from the auditorium screaming like a maniac. As I inwardly “shackled” my own maniac I couldn’t help but wonder how they did it. How can this surround-sound, swelling noise be ignored while they focused on actual voices around them?

Easy.

What was “crooked” to me was “on the level” for them. No adjustment necessary! We really have to remember that. I think it all boils down to:

1. Learn to communicate your needs clearly so others may adjust to best help.

2. Respect another individual’s choices and decisions made to find true accessibility.

Sometimes not much can be done to “straighten” what is crooked. Then our responsibility changes. I hope I can be gracious and accepting about things that cannot be “fixed” or “changed” to best meet my hearing and balance needs.

Denise Portis

© 2011 Personal Hearing Loss Journal

Random Definitions – Consider the Source

Aren’t definitions funny critters? Oh sure… you can use “Dictionary.com” or Merriam-Websters Collegiate “big enough to cause a hernia” dictionary to look up words. But the funny thing about the English dictionary? Words can mean different things. The words can EVEN mean different things – to different people. Some random definitions I have encountered in the last week include:

Now: To the mother who demanded the trash be emptied, it means immediately. To the 20-year-old son who will get to it eventually, it means sometime today.

D-cup: “What does ‘D-cup’ mean to you?” Response: “Male or female?” Speechless thought: “Wha’…   ?”

McDonalds: To the over-extended, ‘I forgot to thaw out the chicken’ parent, it means SUPPER. To the health-conscious, it means ‘heart attack in a bag’.

Snap: Daughter: “Oh snap, I forgot my key!” Mother: snaps fingers and looks quizzically at daughter. Daughter: (raises eyebrows and shoots an exasperated DUH look at mother…)

Normal: To a teenager, it means someone who “fits in”. To a dog, it means it can be eaten. To a person who happens to have a disability, it means “treated like everyone else”.

Yup! You often have to consider the source to understand how people choose to define common words. The word “normal” has cropped up a couple of times in the past several weeks for me.

First occurrence:

Kyersten and I were at Costco looking around and purchasing some bulk items to take back to Virginia for college. A lady did a double-take, looked at Chloe (my assistance dog), looked at my head and kept walking a few steps. However, she immediately stopped and left her cart, pocketbook and items and trotted over to where Kyersten and I stood to say, “Excuse me! Is that a cochlear implant?”

“Yes,” I replied.

“Oh my husband has one of those. How long have you had yours?” she asked with curiosity.

I preceded to tell her a little bit about my own activation 5 years ago and hearing health history. I was trying to keep an eye on her cart (with pocketbook that screamed, “Steal me. Someone steal me” in it), so was a little startled when she interrupted my nervous glances toward her cart to say, “But your speech! It’s so normal!”

In talking with her, it seems her husband was deafened at a young age and was essentially without sound for 27 years before he received his own bilateral implants. He evidently has a noticeable speech impediment. But what is “normal”? I have met late-deafened and congenitally deaf people from all over the United States. “Normal speech”? Some would argue my southern accent is not “normal” for the DC-Metro area. How one person with hearing difficulties speaks, is much like an individual accent. There isn’t anything “abnormal” about it. My son has perfect (selective) hearing, and he has a speech impediment. It is “normal” for him though. How pronounced his own speech difficulties sound, depends on how hard he chooses to enunciate words and regulate his speed. Who determined what “normal speech” was and determined the “yard stick” by which to measure all speech?

At Pearle Vision Center:

A lady and her daughter stopped to admire Chloe who was in a down/stay. “Oh what a beautiful working dog! Are you training her?”

“Oh! No… Chloe graduated 3 years ago. She’s always training, but I’m not her original trainer” I replied.

“Oh! You mean she is YOUR partner?” the surprised woman asked.

“Yes. She’s a hearing/assist and balance assistance dog. I am late-deafened and have Meniere’s disease”, I cheerfully replied.

“Oh wow… you look so n-norm- normal” she stuttered out (since she realized how inappropriate that was as soon as she started saying it!)

I just smiled and she walked away embarrassed.

Normal?

Very likely, this world would be a better place if people didn’t go around labeling others as NORMAL or NOT.

To someone, somewhere… you aren’t “normal” if you choose to define the word as “not like you”!

Denise Portis

© 2011 Personal Hearing Loss Journal