Tag: invisible disability

Who Is That Person?

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The bathroom downstairs is decorated with cats. Lots of them. (Yes I know… decorating a bathroom with “cat stuff” is unusual, but it is what my cat-loving children picked out!). The above picture hangs in the bathroom near the sink. As a result, I’ve given a lot of thought to this painting!

Who IS that?

This morning I was getting ready and caught sight of myself in the mirror. I had already fixed my hair, put on my make-up and “made pretty”. Yet, I was taken by surprise at what I saw in my reflection.

It’s raining today. We really need it too. Yet… I really dread rainy days. I usually know it’s raining even before I roll out of bed in the morning. I get this “sense” that all is not right. Weather systems do a number on my balance and I walk like a drunken sailor if bad weather prevails for more than a day or two. Looking at my reflection I could see IT on my face. Fatigue, dread, worry, and acceptance of the unavoidable. There it was in the reflection in the mirror. You would have to really know me to notice. Something in the eyes… tension in the facial muscles. Since I know myself pretty well (grin)… I could spot it right away.

Am I Defined or REFINED by Acquired Disability

The people I find most difficult to be around are those who “knew me when”. Folks who grew up with me – my parents, siblings, and family members – have a hard time being around me I think. I’m not who I was. My family are spread out all over the United States. We are currently in four different states, and unfortunately this necessitates rather infrequent visits. (Thank goodness for Facebook, email and SKYPE so that we can at least touch base virtually). My immediate family (husband and children) transitioned along with me as my life gradually changed from “what was” to “what is”. It seemed less like CHANGE to them, for life changes gradually grew who they were as well. However, when you haven’t seen someone in a very long time and then have the opportunity to be with them, changes are not only obvious they can be surprising!

I’ll never forget shortly after receiving my bionics and cochlear implant, I was visiting my sister while I was in Texas on business. I reached up to remove my CI to hand it to her so she could look at it because she seemed a trifle intimidated by it. She screeched, and said, “No, NO! Don’t take it off!” I got the impression she thought I was going to remove it from my brain or something! As if removing it meant you could peer down into the cavity of my skull! Her grimace and horror at what I was trying to do really threw me off! At first I was REALLY hurt (I’ll just be honest here). I couldn’t believe that in something so life changing for ME, that someone this close to me had done so little investigation themselves about what my having a cochlear implant would mean. But honestly? Researching and finding out more information about the CI that would change MY life is not HER job. I should continue to be the best DENISE I can be, using whatever means necessary to “do a good job” at that. It isn’t her job to completely understand what that transition will look like nor to completely understand the technologies I use to cope and HOPE.

Adaptation is “A change by which an organism or species becomes better suited to its environment” . My family and I have made adaptations. I don’t believe my disability DEFINES me, but it’s ridiculous to pretend it isn’t part of who I am now. I do believe it REFINES me. This isn’t a NEGATIVE thing. I’m still me… but a BETTER me because of the things I’ve adapted to as the result of having an acquired disability.

But sometimes… like this morning… I do a double-take when I see IT in the reflection of the mirror. I suppose it’s because there are days – thankfully few and far between – where my hearing loss and Meniere’s disease get the best of me. It would be so easy to just turn around and crawl back into bed. Heck! Honestly? There are days that would be the WISEST thing to do! I think of the people I know who are living with Lyme disease, Chronic Fatigue Syndrome, Fibromyalgia, MS, HIV, or cancer. Invisible disabilities and chronic illness that, unless you knew the background and testimony of the person standing in front of you, one would never know the courage it takes to live life each and every day with some semblance of normalcy.

Standing and looking in the mirror – you may notice a little bit of IT peeking out at you from time to time. I walked away from the mirror this morning totally OK with the fact that the stress of my life was showing a bit in my reflection. I don’t have to let how I FEEL influence the way I BEHAVE. Frankly? I think every person has days they have to try a little harder to PUT ON A HAPPY FACE. They don’t have to be people who live with invisible disabilities. It’s normal to have bad days. And normal? Well… that’s just exactly how I want to be.

I’ll leave you with a super song that I discovered long ago when that animated movie “Mulan” first came out in 1998. It wasn’t until I saw the lyrics for the first time that it was really driven home – the truths of reflection for every woman, every person, every individual living with invisible disabilities or chronic disease. When will my reflection show, who I am inside?

Truthfully it shows every single day. You just have to look harder on some days than on others. I don’t ever stop being ME though. I usually walk away from the mirror pretty satisfied with the evidence of things not seen on the surface. May we all be great reflections of who we are INSIDE…

Denise Portis

© 2010 Personal Hearing Loss Journal

“People are like stained-glass windows. They sparkle and shine when the sun is out, but when the darkness sets in, their true beauty is revealed only if there is a light from within.”(Elisabeth Kubler-Ross)

Do Not Put it Off!

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This week marked the end of my son’s life as a high school student. In a couple of weeks, my parents will be here to celebrate at his graduation ceremonies for Chieftain Christian Academy. Although Chris did most of his senior year at a local community college (since he goes free thanks to “Dad” working there), he still did a couple of classes at home. I’ve been more “hands off” in his education this year, but still had the opportunity to make sure he was logging hours for that 1/2 credit of Bible he needed. I was still his “teacher” for Geometry, something we put off far too long! I was still busy grading papers, generating paperwork for our co-op, and preparing lesson plans for the kid.

Now the “kid” is done, and I find myself asking, “What do I… want to be when I grow up?” My life has pretty much been on hold for twenty years, in spite of working part-time as a teacher throughout. Every school year revolved around the kids, as did every activity, field trip, book purchase, and support group meeting. Now we are “done” with this chapter in our lives and I once feared I would be left feeling deflated.

But… I have a plan of action. That is part of the reason I have been going to school part-time. I’ve been taking 6-9 hours a semester of graduate level courses in Psychology. I’m set up to complete a Master’s program at the end of 2010.

Looking Back

In spite of all of these years of concentrating on my family, I really didn’t think there would ever be a day I could look to my own dreams. It’s hard to believe that it has been almost twenty years since I first began to notice a dramatic change in my hearing. In the beginning it was so hard! Even my own parents and siblings had difficulty believing I was really losing my hearing. After all, when I was being raised at home, I only had a mild hearing loss in one ear. It didn’t make sense to them that ten years could make that much difference in my hearing. I remember one of my kids coming home from Colorado after visiting family, visibly upset because someone had told them that my hearing loss must be “put on”… that it wasn’t real. They had no idea how to respond to the lack of belief in acquired disabilities. They knew I couldn’t “hear” in the dark (since I speech read). They knew how frustrated I was when my hearing aid battery would die. They knew how terrified I was of the phone and how I was slowly dropping out of activities at church since I couldn’t hear. I remember talking to my little sister on the telephone prior to my cochlear implant surgery.

She wanted to know why I would consider surgery and take that risk. I remember staring at the phone incredulous at her question. Here I was reading captions from a Cap-tel phone, in order to even know what she said… and THAT wasn’t 100%. I explained how minimal the risks were to cochlear implant surgery and tried to explain how desperately I WANTED MY LIFE BACK.

Looking Ahead

I didn’t let their reservations stand in my way. Thankfully, my immediate family understood the struggles I faced each and every day and were so supportive! Other late-deafened adults were encouraging and enthusiastic about my surgery. Getting a cochlear implant allowed me to dream again. Because I can hear as well as I do, I look forward to giving back in some way… of doing something outside the home. Don’t get me wrong… I have loved being a keeper of the home and the opportunity to spend so much time with my kids. However, I really thought that at the end of this time I’d be facing an empty nest and feeling unnecessary. Once I could “hear again”, everything changed. I’m at the end of this journey and at the beginning of a new one! I’m feeling rather hopeful, excited and NECESSARY.

I suppose if the posting this week had a POINT, it would be this:

Do you have a hearing loss? Do hearing aids and other assistive devices no longer help you very much? Have you been evaluated and been told that you qualify for a cochlear implant?

DO NOT PUT IT OFF.

The risks are minimal, the pay-off is HUGE. It has been five years since I was activated (May 13, 2005). I have no regrets other than I waited as long as I did. I qualified for a cochlear implant three years before I finally went through with the surgery! I’m dreaming again. I’m excited about the future. I have plans, goals, and am slowly but surely “getting there”. I can hear with this bionic ear of mine!

Denise Portis

© 2010 Personal Hearing Loss Journal


Misconceptions

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I’m always so tickled when one of Hearing Elmo’s guest writers offer to post something! This one was really “timely” for me and I needed the reminders about what some common misconceptions are! Thank you to Tywanna, one of Hearing Elmo’s guest writers!

MISCONCEPTIONS

Guest writer: Tywanna

The American Heritage Dictionary defines misconception as “A mistaken thought, idea, or notion; a misunderstanding.”

Prior to the decline of my hearing, I could not explain what it was like to live with a hearing loss. I was incapable of completely explaining something I’ve never experienced. If I had tried to do so, my words would have been awkward, confusing, incorrect, or ignorant.

I’ve cross across some people with “normal” hearing who feel as though they understand but their reality is often a misconception.

Here’s a list of the top misconceptions I’ve heard and experienced throughout my hearing loss journey.

1. All people with hearing loss use American Sign Language

According to Wikipedia, while there has been no reliable survey of the number of people who use ASL as their primary language, estimates range from 500,000 to 2 million in the United States. As of 2009, the United States population was estimated at $307 million people. If these statistics are close to the actual numbers, ASL users are in the minority.

In 2006, Gallaudet University published a study which indicated the estimates need updating.

2. Yelling will make the person with hearing loss hear better

Imagine speaking with someone and hearing but not fully understanding what’s being said. To a person with hearing loss this is a regular encounter. Sometimes we often nod, smile or shake our head out of politeness or because we don’t want to interrupt the speaker with “what” or “can you please repeat that.”

Sometimes when people with a hearing loss find the right moment to intervene with a polite “can you repeat that”, we’re faced with someone yelling so loud that their words become distorted.

I often feel compelled to ask, “will yelling make me hear or understand you?”

3. People with “normal” hearing may not talk with someone who has a hearing loss

A manager at work explained to me that she knows I’m smart but she was afraid people would not talk to me because I could not hear them. Is this the way my co-workers feel or the way she feels? I’m inclined to believe it’s the later due to her ignorance about hearing loss and her lack of being comfortable around someone who is slightly different than herself.

What does being smart have to do with hearing loss? How are the two related?

4. The word “impaired” sounds nicer than hearing loss or deaf

While taking an ASL class for the first time I used the word impaired with our instructor who was born deaf. She politely explained to me impaired means broken. After that experience I looked up the word in the dictionary. Impaired is a synonym for broken, ruined or messed up. Wow, did God make me broken? – of course not. He made me exactly the way he intended. He made me to be unique, different and one of a kind. Since finding out the true definition of the word impaired, I have eliminated the word from my vocabulary when referring to others with hearing loss or myself.

The terms dumb, mute, and handicapped and several others are no longer acceptable. Let’s band together to eliminate the words that may be offensive or degrading to certain members of the population.

Let’s ask people what they would prefer to be called and honor their wishes.

5. All people with hearing loss want to be “fixed”

Have you ever come across people who feel as though they have the answer to everything? Every time a new product or infomercial comes on television, they feel compelled to let you know.  “Oh my, I’ve seen this wonderful new head phone set that will enable you to watch television without using closed captions.” Well, I’m wearing a BTE hearing aid that costs $3000 and you’re telling me a product for $19.99 will enable me to understand the television?

“You’ll never guess what, “I’ve seen a new hearing aid that is suppose to fix all types of hearing loss.” Who told these people there is a cure for deafness?

Who also said deaf people want to be fixed? As a whole, the hearing loss and Deaf community are proud of who they are.

6. Deaf means “No Sound”

Wrong! The term deaf does not mean without sound. According to the Center for Disease Control, deaf is the inability to rely on your hearing to understand and process information without the use of visual cues.

7. Deaf people want sympathy

Recently while interacting with my supervisor at work, I explained to her I would prefer written instructions because I was going deaf. Her reply was “I’m sorry”. I quickly explained there is nothing to be sorry about. People who are Deaf, deaf or hard of hearing want empathy not sympathy. I don’t want people to pity me or feel sorry for me. That’s not the way I see myself. I’m using my hearing loss as a way to help others.

My cousin recently sent me an e-mail with the following quote:

“Nothing in all the world is more dangerous than sincere ignorance and conscientious stupidity.”

–Rev. Dr. Martin Luther King, Jr.

People with “normal” hearing, may never be able to fully understand our journey. Often times true understanding comes from experience. We do not have to live in continued ignorance. There are so many libraries, books, television programs and Internet websites. Let’s educate people one at a time. Let’s band together to wipe out the misconceptions. Let’s continue to share our experiences to help others.

Have a Great Imagination?

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Chloe and Denise at an old Rock Quarry April 2010

So do you have a great imagination? Unfortunately, I did not have my camera when the incident occurred that I’m about to explain. Even had I located a camera at the time, I certainly would not have had time to “snap” pictures! (You’ll understand in a moment).

So allow me to try to explain with words what happened at work yesterday. Perhaps it is just “one of those things” that happens to people with assistance dogs. This had never happened to me, however, and so I was totally taken by surprise!

I tread carefully in the tellin’ for it took place in the bathroom of all places! Ever wonder what a person with an assistance dog does when they have to go to the bathroom? It’s not like you can hitch your dog up at the post while you go in and “do your business”. You do not want your assistance dog sitting or laying on the floor. I mean… we are in the BATHROOM, folks! A “stand” and “stay” is the perfect obedience command for this environment.

If the handicapped stall is free, I always head for that one. The extra space is nice when accompanied by a furry partner. Sometimes the handicapped stall is NOT free, so then we have to make do with the smaller area. Yesterday the handicapped stall was free, however, so Chloe and I went into that space.

I put Chloe in a “stand” and “stay” first. She rarely moves, however she will sometimes duck her head to peek into the next stall. I try to watch for this because honestly? What would you do if a furry, friendly head looked under to say “boo”? (I’ve heard screeches and even SPLASHES before… so yeah. I try to keep her from doing this!)

Now yesterday was a sunny day. For those readers who may not know me very well, for ME this means that my balance was pretty good. My Meniere’s disease is at its worst when it is rainy outside. Mine seems to be triggered by the weather. So on a sunny day, I … like most grown women… have the ability to erm… HOVER. It’s very handy. (Men just have it made in this regard, don’t they?) On rainy days I have to make sure I can locate a seat protector, or take the time to lay toilet paper down to cover the seat. On sunny days, I can get right down to business and out of there fairly quickly.

My restroom “OH MY GOSH I’LL HAVE TO WRITE ABOUT THIS” escapade was one of the last things I accomplished at school yesterday. I already had my car packed up, and only took my keys and Chloe to the restroom. Because it was sunny, I was able to HOVER, but I needed to be able to put my keys somewhere. They have a long purple strap on them so that Chloe can pick them up easier on my “bad days” should I drop them. I put the purple strap in my TEETH, hovered … and took care of business in 10 seconds.

Without going into a lot of detail about what happens immediately following the “hover” (use your imagination), I still had my keys in my teeth. Chloe was still in a dutiful “stand” and “stay”. Remember that this was a “good balance day”? I never flush the toilet with my hands on a day I can stand on one foot and accomplish the task with my other foot. It’s the germs ya know? So I did a “karate kid” immitation, and used my left foot to flush the commode.

Chloe decided to side step out of the way. (She’s seen this WEEBLE wobble and FALL DOWN so many times, she evidently wanted to make sure she had space to move if needed). I saw her out of the corner of my eye getting ready to move, so I said, “Ach… wrong”.

Funny thing about holding something in your teeth and deciding to talk at the same time? Yeah. The natural law of gravity will never let a person down. My keys tumbled and bounced off my extended “flushing” knee and right into the toilet!

I screeched. I’m pretty sure it wasn’t quietly.

Chloe retrieves objects that I drop in what the trainers call an “automatic retrieve” for partners with hearing loss. So she scooted around me and looked down into the disappearing water in the commode at my keys in the bottom of the bowl.

I screeched. I’m pretty sure it wasn’t quietly. (This isn’t a typo… it simply happened twice).

I was scrambling… what to DO? I didn’t TRAIN FOR THIS. Chloe put her paws up on the toilet seat to better lean down into the bowl so I reached for my treat bag, and my hand connected to my clicker. Now… I was running on adrenaline at this point. When my hand came into contact with the training clicker, I did an automatic “click”. (Erin would be so proud…) So now Chloe thinks that what she is doing is what she is SUPPOSE TO BE DOING! I clicked … which indicates to HER… “YUP, you got it right”! She now has her head down in the toilet bowl and is bobbing for apples my keys.

I screeched. I’m pretty sure is wasn’t quietly. (yeah… you get the picture!)

I pushed her wagging body out of the way and quickly reached in to pluck my keys from the toilet bowl. It now had completely filled back up with water. Chloe stood there expectantly … eyes on the keys… waiting for me to drop them again. Cuz, ya know? This was a TERRIFIC GAME!

There I stood in the bathroom of Chieftain Institute on the campus of Gaithersburg Church of the Nazarene with dripping keys in one hand, while looking into the dripping face of my assistance dog. I had two choices. I could laugh – or cry. So I…

screeched… I’m pretty sure is wasn’t quietly. (There was a 3rd choice).

I exited the stall with as much grace as I could muster. I washed my hands well, and my keys. I tried to avoid getting soap and water in the electronic key to my car, but honestly? Did it matter at this point?

I walked forlornly to my car with a very happy assistance dog in heel, my head bowed in defeat. As I neared my car I tried to unlock my car with the very wet key… which of course didn’t work. I went around to the driver’s side of the car and looked for the “unlock” key hole which I had NEVER HAD TO USE BEFORE. After loading Chloe up and getting her settled, I climbed into the car and adjusted my mirrors. I caught sight of Chloe’s wet head and finally saw the funny. (You really DO have to laugh to keep from crying sometimes!)

When I pulled into my driveway about 45 minutes later, the first thing I did was use a hair dryer on my key. (Yes… no worries! Chloe got a bath too!) Would you believe the key is working this morning? It will lock and unlock my car just as if I hadn’t given it a “swirly”! I DID have to give it a new attachment though! I carefully washed my other keys and rings, and used a macrame stitch to create a new “bob” for Chloe to be able to pick up.

On the bright side of things, at least it matches Chloe’s vest now!

Denise Portis

© 2010 Personal Hearing Loss Journal

It’s a Shame You Don’t Burn Calories

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Darn, but his voice is changing YET AGAIN!

Geesh, I’ve had a tough week. I hate to complain because I am aware that my frustrations in no way compare to what some folks are going through right now.

I mean, everyone in my family is relatively healthy; we’re employed; doing well in school; have connections with people we care about… but let’s face it –

We can still have a tough week in spite of how well things may be going generally.

Part of the reason I enjoy connecting with people through their blogs, Facebook, email and SKYPE is because it can serve as a sobering reminder just how well I have it!

Hearing Loss Can “Suck”

I do hate to admit when a “bad week” is because of the fact that I have a hearing loss. After all, I make a great effort each and every day to live my life as a positive role model, proactive advocate, and enthusiastic recipient of a cochlear implant. But ya know? Sometimes I’m going to have a bad week because of problems I encounter as the result of being deaf.

1. My son’s voice is changing – – AGAIN. Like it could get any deeper? I noticed this last week that it has become more difficult for me to understand my son’s voice again simply because it is so much deeper. I have a mapping appointment at Johns Hopkins Listening Center in May. Do I drag the kiddo with me so that my programs can be tweaked to hear him better? Or, because I’m “so darn independent”, simply tell my audiologist that I’m having difficulty with deeper voices and let her “tweak” based on what the computer tells her to do?

Honestly I inwardly “grimace” when I’m trying to have a conversation with him. I have to actually be face-to-face in order to lip read some as that voice of his just DISAPPEARS in some lower octave that I’m unable to hear. You’d think I’d burn calories as I must intently concentrate and fixate on the conversation.

2. My wonderful husband is having allergy problems like many in the mid-Atlantic states are having this year. It seems pollen is at an all-time high, breaking records across the state. (How exactly does one measure pollen I wonder?) I do know that our cars and porch are always covered in a coat of fine particle yellow dust! For some reason, this year it has really “done a number” on my husband’s voice. Some days (especially in the morning) he actually HAS no voice! It can be very frustrating trying to talk to someone whose voice cuts in and out! Normally, I can be in a different room and carry on a conversation with the man! (Thanks to the Nucleus Freedom!) But this week, I can be looking right at him and some of the words just sort of disappear into space. How can something SO HARD – intently concentrating and trying to understand conversation – be so exhausting? Honestly I’ve been going to bed with a mushy brain.

So yeah… most days I embrace the fact that because of invisible disabilities I live life a little differently, but certainly with an attitude of gratitude. This week? Not so much.

That’s OK, too ya know! We are not always going to be accepting or appreciative of having to do things a little differently. A short list of hearing loss belly-aches?

1. Having to PUT your “ears” on each and every day before being able to hear that first sound of the morning.

2. Having to change batteries to “hear again”… and they never die at an opportune moment!

3. Having to fumble and juggle THREE Size 13 batteries to start with!

4. Not being able to hear myself sing in the shower. As memory serves I am pretty darn good at it!

5. Not being able to run out in the rain and splash and play while HEARING.

But ya know? My list of jaw-dropping, heart-warming, deeply perceptive acknowledgments of what I CAN hear is much longer!

Denise Portis

© 2010 Personal Hearing Loss Journal

Acclimation

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I talked to my mother on the phone yesterday and she and Dad had a big project in which to look forward to for today. They have a beautiful lanai in the back which includes a very nice fish pond and miniature waterfall. In spite of a pump and filters, the pond does need cleaned once in awhile. Evidently, the time had arrived. The Koi have to be erm… “fished out” and placed in big 5-gallon buckets. Then the pond is drained. Next, the rocks and pond are scrubbed and washed with a high-pressure hose. It takes time, and I imagine it’s a messy job. I also imagine one gets a little wet – at least I would.

I called Mom again around 3 PM today. She was pretty bummed. It seems that when putting the fish back into the now clean pond, they didn’t provide enough time for them to acclimate to the temperature change. At the time I talked to her only 4 were still alive, and she lost some of her “big ones”.

Use to the Scum

I suppose my parents could have chosen not to clean their pond. But it evidently gets bad enough you can’t see the bottom. They have a proliferation of live plants and lily pads, but all of these natural AND man-made filters can’t undo the fact that the pond does not have a constant source of fresh water being piped in like mother nature provides. The Koi do not seem to care that the water gets to where they cannot even be seen swimming around. They grow accustomed to all the scum.

Aren’t we that way sometimes? I remember when I first got married, my husband and I did not go to a movie if there was harsh language, sex and nudity, or “adult themes”. We now use a service from “Screen It” . Before going to a movie, we literally screen it. Screen It tells you how many cuss words are in a movie and what they are. It tells you if the movie has any nudity in it, or adult themes. As a matter of fact, it will actually give the entire movie away if you read the whole review – grin! But we have used it a great deal because I just have trouble sitting through movies that are one curse word after another. I don’t care who plays in it or how highly acclaimed it is. But you know something? We make a choice that our movies have to have “less than 10 curse words” in them, and certain curse words are “worse than others” in our thinking. But are they? Aren’t curse words, curse words? And who decides how many is too many? It’s a slippery slope, let me tell you! It takes a lot of dedication and determination to stay true to what we’ve determined we’ll pay money to see for entertainment. I can’t help but feel as if we are agreeing that “a little scum” is OK though.

I heard a young lady recently say that someone they work with let them borrow a book to read. The owner of the book said, “There are no curse words, and it’s clean… you’ll like it!” This young lady was astonished at not only the language in the books, but there were sex scenes. She wondered out loud how that could be? I hypothesized that perhaps the other woman had grown accustomed to the language and written scenes where they didn’t have an impact on her anymore. She didn’t recognize the “scum”.

The SHOCK Killed Them

I’m a bit of a homebody. (I cringe knowing how my family would groan about that). OK, OK… I’m a HOMEBODY. However, my personality is pretty outgoing. I do like talking to people and interacting with them. However, after I lost my hearing and developed a balance disorder, I pretty much began staying at home. Even though I hear voices very well now (in most environments), I still haven’t reverted back to my (literal) outgoing self.

I’m going to a lady’s home this Wednesday for lunch. She leads a Bible study for women in my church. I use to lead Bible studies; in fact, I was one of the main leaders and went from one study to another ten years ago. I use to go shopping and hang out with friends quite a bit too. Now… not so much.

Don’t get me wrong… I’m HAPPY. But I didn’t start out this way. The more silent my world became, the more silent I became as well. I quit everything that required I interact with people. I intentionally isolated myself. It took some time. It was a slow process – I didn’t wake up one morning having become a hermit. So now that I am hearing again with my cochlear implant, and have some of my independence back thanks to Chloe, it has taken some time to make a gradual adjustment to “getting out there” again.

My parents should have kept their Koi in a 5-gallon bucket a while longer. They may have still died… Koi can be very sensitive to change. People can be too – especially people with acquired disabilities I think. Making adjustments in our lives can take time. For one thing… learning to trust can be hard. Learning to believe in yourself again can be even harder.

I have a friend with chronic fatigue syndrome and fibromyalgia. She is a self-isolated individual. It happened very slowly over time. It became harder and harder to explain her disease to other people. She had more “bad days” than “good days”. Constantly having to cancel plans eventually led her to not make any plans. When you look at her she LOOKS FINE. Try explaining that you are NOT. I feel for her. I know what it is like to have an invisible disability. (Still another reason I sport CI “bling” and decided to be partnered with a canine. Nothing says, “something is DIFFERENT” than going everywhere with a working dog!) She is now trying to reach out again, but she is taking it very slowly. After all, it can be “two steps forward and three steps back” many times. I think taking it slowly is a good idea. Acclimation TAKES time, after all.

Do you know someone with an invisible disability? Do you know someone who has a disease that exhibits “silent symptoms”? Perhaps they have isolated themselves and are convinced they are a homebody by CHOICE. They may seem happy. I’m not saying go BUG the heck out of someone who has opted to avoid being in public as much as they can. But I think it is also OK to reach out. Maybe bring lunch to THEM. Working in your garden? Pick some tomatoes or flowers and take them to this person. Email them occasionally. Offer to take them shoe shopping. Who says no to that? (GRIN) Just be aware it may take them some time to re-acclimate themselves to being out more, or having a friend over.

One reason I love the Internet and love to blog? I have “met” an awful lot of people just like me. Some I call “friend” too… for we’ve gotten to know one another and have learned to share our life’s story. We’ve connected. Things like Facebook can do that too, or joining online support groups. I’ve heard some people say, “yeah but those aren’t REAL people”. Excuse me? Behind that keyboard is the mom of a child with hearing loss – and she homeschools too just like I did! Behind another keyboard is a lady who lives with invisible disabilities who is training her own service dog in a big lovable Great Dane. The person who clicks that mouse has MS and has a wonderful service dog who gives her some independence. Numerous “point and click” folks out there have cochlear implants and love to talk about them too! These are real people; our connection is real.

If you know of someone who seems isolated (whether self-imposed or not), encourage them to get a good computer with reliable Internet service. You’d be surprised at the amount of support they can find out there… the connections… the friendships!

Denise Portis

© 2010 Personal Hearing Loss Journal

Red Flag

Published on by hearingelmo3 Comments

I have little “red flags” in my life… or warning bells if you like! Really, we all need to have them, for they are excellent opportunities for reflection, brain-storming, and goal-setting.

Well a little “red flag” waved like mad right in my line of vision this week. When I stopped to heed my little “self-warning”, I was even able to trace it back to when it started. You see, I was developing a bad attitude! Not a bad attitude about any one person in particular, but towards a group of people. A bias, really! It all started when I went shopping at Wal-mart last Tuesday.

Oh Bruuuuther!

Chloe has a ball in Wal-mart. This is a good thing, for her enthusiasm is contagious and – frankly? Wal-mart is not one of my favorite places to go, so I can use a little infectious enthusiasm about the money-saving, weekly task! You see? There are a LOT of things to pick up off the floor at Wal-mart.

Chloe does an “automatic retrieve”. Granted, sometimes this is a real pain! For example, when you are in a store that is notorious for having things all over the floor, Chloe is stopping every few feet to hand me something! An automatic retrieve is when Chloe sees something that I’ve dropped, she automatically and immediately fetches it and brings it to me. She also does directed retrieves, which means she will fetch things I point at, or identify with words she recognizes. Having Meniere’s disease insures there are days that having to reach all the way to the floor, means I’ll also be sprawled out IN IT. Chloe keeps that from happening. If items are just laying around, Chloe really shouldn’t go and pick it up as it wasn’t something I dropped (automatic retrieve), nor is it something I’ve asked her to do (directed retrieve). However, coupons and bits of plastic have a tendency to “be stirred up, move, and re-land” as a shopping cart goes by. Since Wal-mart has shopping carts… everywhere… Chloe thinks every new thing that lands in front of her is something I need. For awhile I was telling her “phoeey” or “drop it”. This hurt her feelings. (She’s very sensitive). I didn’t want to break her solid retrieve commands, so I play along as she gets such a kick out of it and as it is such good practice.

Last Tuesday we were in the baking section of Wal-mart and I was looking for pancake mixes. A man and woman walked by me from behind. The man said “Oh bruuuuther!” very loudly as he walked by me. I looked up to see what he was talking about, just in time to see him tap his wife’s arm and point to Chloe and again explain, “Oh bruuuuther! Can you believe it? What will they think of next?” The MEANNESS pouring off of him completely shut my mouth. (Rare thing, THAT, believe me!)

I’m pretty sure my mouth dropped open. The sarcasm and disdain in his voice were very apparent. My mind raced with what I wanted to say, and how I wanted to explain that for ME, Chloe’s partnership was invaluable. I stood there trying to think of what to say, and how to say it… yet I was angry and hurt. He rolled his eyes and again looked at his wife. She said what I WANTED too… “Just shut-up Chuck!”

The entire experience probably took 2-3 minutes of my time. Yet I stood there, rooted to the spot, for at least twice that long.

One Bozo ≠ Everyone Else

I’m not sure why I pondered and perseverated on that as long as I did. Have you ever had something happen before where you spent a great deal of time thinking about what you WISH you would have said or done? Little by little, I could feel my attitude changing.

I have a red flag that I’ve set up in my mind to identify when I get an “us” versus “them” mentality. The “us” is any individual, including myself, who lives with a disability of any kind. The “them” are people who do not have a disability. When I start thinking or saying things like the following… I know I need to stop. That red flag will be

waving

like

crazy:

1. Well, you couldn’t understand because you have normal hearing.

2. You don’t know how I feel… you can’t! You don’t fall all day long and run into things!

3. You are a HEARING person. (Like that is a cut-down of some kind!)

4. If you could live one day in my shoes…

Those kind of thought processes tend to foster one major PITY PARTY. I can feel myself start to feel resentful. It can get ugly pretty quickly left unchecked. In this case… I let one BOZO represent everyone else I know. Truthfully, those with extreme prejudices are the exception, not the rule.

Battling a Negative Pattern of Thinking

So other than seeing that red flag, and recognizing my faulty thinking… what can I do? Very likely every person has a way to battle negative thinking that works for THEM. For me, I may do any of the following:

1. Count my blessings with deliberation and certainty.

2. Remind myself why ALL biases are wrong.

3. Make a list of all the people in my life who “get it” and do not have disabilities.

4. Hug and groom my dog, Chloe.

5. Listen to positive, up-beat music.

6. Do something for someone else for no particular reason.

7. If it would be constructive, confront an offender with grace, respect and firmness.

Red Flags are Good Things!

Do you have red flags in your life? These are necessary self-warnings that all of us should have! What are some red flags that you have and pay attention to in your life? Some of my own:

1. Spiritually: Does my walk TALK, louder than my talk, talks? Am I daily checking in with God through prayer and reading my Bible? Do I seek to be a blessing to others? Does that start at HOME?

2. Physically: Have a walked at least 4 days this week? Am I watching what I eat? Am I taking my blood pressure medication each day?

3. Emotionally: What have I done for ME this week to just relax and unwind? Do I need an attitude adjustment? Am I living in peace or allowing anxiety to wreck havoc?

4. Mentally: Am I growing? What am I learning in school? Am I giving my best to my team and individual assignments? Are these things helping me reach my goals?

Denise Portis

© 2010 Personal Hearing Loss Journal


Point of View

Published on by hearingelmo2 Comments
Black squirrel 2/1/2010

I snapped this picture of one of our black squirrels in between snow storms. Squirrels can be funny sometimes. This pregnant female was eating old bread that I had put out for them, when she paused to look at me as I appeared with the camera. It sometimes makes me wonder who is watching who? For whatever reason, she certainly thought I was interesting!

“Look at that animal on the other side of that glass. They live in such a strange cage! What is that thing in its hand that keeps making flashes of light?” Yeah, the squirrel’s point of view would be interesting to know. Unfortunately, I’ve not successfully interviewed any squirrels lately.

Change in Point of View

I had a dog’s eye view of the world this morning. My Meniere’s kicked in with a vicious reminder that I have a balance disorder. I was extremely wobbly and had a couple of tumbles. I ended up sitting on the floor with the dogs for awhile. (Not as far to fall, ya know?) Seeing things from a “dog’s eye view” was something I do not always experience. I sat on the floor enjoying my green tea with Chloe snuggled close. (For ya know? There is only ONE reason I would be on the floor… and that would be to spend one-on-one time with her!). My goofy Norwegian Elkhound was so excited to have me down on his level. He kept running to the family room to grab a dog toy to bring it back to me. He would detour underneath the heavy dining room table to better navigate the chairs that are rarely pushed in as they should be. Since I was sitting there on the floor, I could see up under the table. One long strand of my daughter’s hair hung from one of the bolts. I could see two large oval places in the carpet where the dogs park themselves under the table during meals. (This lent clear evidence to the fact that when my son vacuums on Wednesdays, he does not do underneath the table! GOTCHA!). Everything looks different from about three feet from the floor. My husband came through the room and I had to look up at him to talk. Dogs always have to look up, don’t they?

Of course “point of view” does not literally mean sharing the same VIEW as another physically. The phrase itself means the mental position of considering something such as an opinion, a story, theory, or suggestion of another.

What Shapes Your Point of View?

Rarely will two people have the same point of view on every topic. Your point of view is often shaped by your life experiences. I’m taking Multicultural Psychology right now, and it took my class nearly a week to agree on a definition for culture. It use to be that a person’s culture had to do with your genetics, race and ethnicity. The field of psychology has been forced to re-define what a culture group is as obviously far more influences the development of an individual than their genes, race and ethnic background. Religiosity, gender, socioeconomic status, disability, sexual orientation, politics, victimization, education, war, natural disaster and much more will affect a person’s development and evolving point of view.

I think it is important to understand what has shaped your own point of view. For one thing, this introspective activity is bound to make you more aware of how the people in your life have a different point of view because of their culture groups. Some psychologists call this broadened definition of culture a new word… sub-cultures. A family can have a number of sub-cultures even within the same house. My husband and I still have both children living at home right now. Believe me… a 19-year-old boy and a 20-year-old girl have different culture groups than my husband and I do. Their very AGE sets them apart from us and provides unique challenges as we navigate living together peacefully in spite of our differences.

At work, I am the only person who has a disability. Thankfully, after working there for seven years now, no one actually treats me like I have a disability. Because I have Chloe now too, they know that she is helping me. As we maneuver up and down the dangerous staircase each school day, they don’t stand and watch with a catch in their breath waiting to jump in and help. They know Chloe can get me up and down the stairs safely. My students no longer crash into each other trying to reach a paper, pen, eraser, or book that I drop in the classroom. Instead they smile and watch Chloe hop up to go retrieve the item for me. (Although many times they are smiling because Chloe has to stretch/yawn first before jogging over to assist).

I absolutely believe that people with disabilities are their own culture group. You may not even have the same disability as another person, but there is something unique about living a life WORTH LIVING in spite of a disability. People with disabilities have unique ABILITIES. It changes your point of view.

What is unique about YOU? What has helped to shape your point of view? Have you ever identified your culture groups? I think that by fully realizing all your OWN puzzle pieces, it makes it much easier to see the completed picture puzzle of others. It helps to keep us from focusing on one confusing, annoying puzzle piece. All the unique puzzle pieces combined make one beautiful person.

Denise Portis

© 2010 Personal Hearing Loss Journal