Category: deafness

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


5 Year Mapping at Johns Hopkins Hospital

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Today I went to Johns Hopkins for my 5 year mapping. It always feels surreal when I go, for five years is simply not enough time to pass that I have already forgotten what it felt like not to hear. As I go in the parking garage, I can clearly hear the ticket machine ask me to take my ticket with me so that I can pay before exiting. When I approach the hospital, I can hear the revolving door “clicking” as it slowly rotates inward. I clearly hear the “ding” of the elevator as I wait for one to come to the first floor. None of these things were discernible to me 5 years ago. I guess you could say my ears became “reborn” on May 13, 2005.

Below is my audiogram 5 months before my surgery. It shows I had a 90 dB loss in my right ear and a 98 dB loss in my left. My left ear is the one I decided to implant.

Audiogram 11-4-2004

Below is the audiogram from today. My audiologist is one of my favorite people. She’s very easy to talk too, and VERY good at what she does. She created a new program in my “P3” slot that I’m going to work with to see if I can hear my son’s voice any better with in comparison to my normal program. In the sound booth… I actually tested “best” with the lower tones, so it could be that I’m going to have to start fussing at my son to project a little better with that deep voice of his! (Look up when you talk… don’t have your face buried in your laptop).

She doesn’t test my right ear anymore, but you’ll note that my left ear (once a 98 dB loss) is now testing at 15dB loss. Better yet, check out the bottom where it has my words/Phonemes and HINT sentences testing in quiet/noise!

Audiogram 5-7-2010

My audi is never “pushy” but she reminded me that should I ever wish to consult with Dr. Niparko about getting a 2nd CI, that I can just call and make an appointment. Right now with my balance issues, I just do not feel the need to pursue that as I’m “hearing” so well. Maybe… SOME DAY.

Check out my May “bling”. Remind you of anyone?

May "Chloe" bling

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

Insecure Foundation?

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Kyersten and Chloe at the "Candle Barn" in Bird-in-Hand, PA

Spring Break! My entire family was on “Spring Break” last week with the exception of ME. As this was Kyersten’s last Spring at home for awhile she was determined to do something “fun” everyday. Friday, she and her daddy had planned to go to Lancaster County. Since I DID have Friday off, I invited myself along.

Two of our favorite places to go in Lancaster County are Bird-in-Hand, PA and Intercourse, PA. (At the latter, my daughter always tries to talk me into a t-shirt that says, “I love INTERCOURSE!” Let me think for a moment. Umm. NO!!)

We enjoy walking around the shops, and my husband was thrilled because on Fridays the Farmer’s market is open as well! Next to and ABOVE the area where the main Farmer’s market is located, are some neat local shops and antiques. Chloe and I found a rickety, old staircase to the top floor and carefully made our way UP.

When we made it to the top, I noticed that Chloe was lagging (walking behind what is a proper heel) which is something she just NEVER does. Her problem is “forging ahead” on a normal day! So I looked back to remind her to heel and noticed something. Her legs were shaking so badly, I could see the hair on her legs and stomach trembling. (What in the world?) Something had her spooked, but I couldn’t tell what it was. I patted her on the head, and asked her to heel again. As soon as I took a step I knew what had her rattled. (Now that I was paying attention… that helps! GRIN) The old, creaky, wooden floors had a lot of “give” and groaned and moved under our weight. I’m sure she could hear it AND feel it! I thought for a second and then decided to stand next to her and shuffle around, tap dance and “hop” standing next to her. At first she dropped like she’d been shot and lay trembling on the ground. I kept talking to her softly and continued to erm… ACT LIKE AN IDIOT. I’m sure anyone downstairs probably thought the world was coming to an end! Five minutes and 150 calories later, Chloe sat up and watched me with a tentative tail flop. Ten minutes more, with a more normal volume and another 150 calories burned, I found her standing next to me with tail wagging like crazy – simply thrilled that  I was inviting her to dance.

Chloe was afraid. The foundation beneath her had to much “give” and groaned and complained at our movement and weight. She wanted to STAY PUT. It took a more confident friend to convince her that all was OK.

Feeling Insecure?

At some point you are going to be either the trembling pup, hugging the floor with nails dug in and eyes wide as saucers, or you will the confident friend who gently persuades you to “get on livin’ it”.

I can’t think of a time when I felt more unnerved than when I felt as if my very foundation was wobbly. You count on your foundation to “HOLD”. It is from a solid foundation that one can build and grow. What do you do when your very foundation is creaking and groaning? How do you “shore up”?

I’ve not made it a secret that I am a person of faith. I believe that God created everything and remains very “HANDS ON” with His creation. I believe that we BLEW IT. Because we are all sinners and in need of a Savior, God sent His one and only Son. Jesus died for you whether you wanted Him to or not! Salvation only comes through believing and accepting that free gift. Any other foundation is going to fail you.

People screw up. They are going to disappoint you.

Careers are temporary. Someone younger, smarter, better looking, and who will work for LESS is going to come along.

Community service is great! Volunteering and making a difference in the life of someone else proves you are someone who LIVES what they BELIEVE. But you aren’t going to be recognized each and every time. “Man” or “Woman of the Year” is only a plaque that gathers dust.

You may be healthy. Yet that can all change in a day. Disabilities, disease, and suffering are something all of us will experience is one form or another.

Life can be very hard. Life can also be very… VERY good. But what happens to YOU when life is hard? What does your foundation feel like? Will it hold?

When I am FLAT ON THE FLOOR terrified to continue, I often turn to prayer and scripture reading. Sometimes God sends along a friend who will tap dance, hop and gently persuade me that all will be OK. Perhaps they’ve lived the same thing and came out … better.

You know? Chloe left that upstairs shop a different assistance dog. She was confident about that next step we were going to take. (Denise danced and hopped and didn’t fall through the floor!) We made our way back to the Farmer’s market to find something yummy to eat. I’d burned 300 calories ya know…

Scared to go on? Perhaps you need to rest awhile. Rejuvenate. Maybe you need to do some introspective reflection. Does your foundation need some repair?

Found someone hugging the floor? Don’t preach at them. Don’t ignore them either. Pray for them. Let them know you are there. Share your story. Tap dance.

After all, the Amish are outstanding carpenters. That floor is going to hold.

Denise Portis

© 2010 Personal Hearing Loss Journal

The Me I Want to Be

Published on by hearingelmo5 Comments

Here lately I’ve been living my life like… well? Like I’m waiting for the other shoe to drop. I’ve had insomnia, which is something I have very little experience with actually. Having a hearing loss and Meniere’s disease usually means that when I go to bed at night I have reached my “EXHAUSTED” mode. I take my cochlear implant off, brush my teeth, climb into bed and am normally asleep within ten minutes!

For the past month, however, I have not only had difficulty going to sleep, but I’ve had trouble STAYING asleep. There is far too much going through my mind, and I’ll just be honest with you… I’m worrying.

Now I hear others say from time to time that worrying is sin. I actually don’t hold to that. I don’t think it is a sin to worry, because we are all prone to do so. What is wrong is when we let that worry wreck our lives, or sidetrack us from why we are here. I don’t believe worry is sin unless we allow it to produce something negative in us. Worrying has to change to BELIEVING.

I’m in this period of life I like to think of as “pre-EMPTY NEST“. My daughter heads to Liberty University this fall as a transfer student. My son is graduating from high school this coming June. For the first time… I HAVE time. My kids are young adults and I certainly realize that there will be times when they still need MOM. Heck! I’m 43-years-old and there are times I still need MY mom! But for the first time, my short term goals don’t include doing anything on behalf of one of my kids. What were once my long-term goals, are now my short-term goals and I’m having to re-focus and make decisions about what I want to do … when I grow up. Cuz it’s here now…

I think part of the reason I have allowed “worry” to produce such a negative effect, is because I never thought I’d be who I am. Two decades ago I first began to think about    “someday”. I never thought I’d hear and communicate only because of the miracle of a cochlear implant. Being a “bionic woman” was not part of the plan, you see… and yet

here I am.

I never envisioned that when weather systems moved into the area I would have trouble walking. I never thought I’d have an assistance dog to help me find the direction of sounds and alert me to sounds I still don’t hear well. It wasn’t in “the plan” to have to ask my dog to pick up things that I drop.

Don’t get me wrong! I have a very positive self-image and like who I am

who I have become.

But I’d be lying if I said that this was what I imagined. I’m a 43-year-old woman with a couple of disabilities. I didn’t plan for it to be this way. There was a “me I want to be“. So I’ve been laying in bed at night worrying…

Should I go on to get my doctorate?

Will I be able to do what I want to do even though I have a hearing loss?

Will others believe in me and see my abilities, or be sidetracked by the disabilities?

Am I even capable of doing what I dream of doing, or should I change my dreams?

When Worry Becomes SIN

So it doesn’t take a “rocket scientist” to figure out that this period of worrying for ME… has turned into sin. I’m not sleeping. I’m tossing and turning and fretting. So yeah! The worrying hasn’t produced anything positive nor been the impetus for a purposeful change. Instead I’ve been miserable

and tired.

Have you ever been afraid to dream for fear that God would say “no”? Maybe you don’t even want to voice what your goals and dreams are to Him because you are pretty sure He’ll say, “Nope! That isn’t My plan for you!”

I believe that God gifts us and equips us to reach our goals. I think our dreams are simply little seeds that we are born with that grow as the result of our utilizing our God-given skills, talents, and strengths. In each of us there is the potential to realize our dreams. Excessive worrying can side-track us from taking those steps towards our dreams.

I’ve also decided to quit silently worrying and just go public with what I hope for! How else are others able to pray for me, and encourage me? For quite awhile I’ve been afraid to voice what my dreams are for fear of people rolling their eyes. I know it isn’t going to be easy. I also know that it will take time to get there. The “me I want to be” is the me God has equipped me to be after all! Sure… sometimes we make poor choices and the “getting there” may end up being a more indirect route. Or perhaps “life happens” and you end up with a life-changing, daily challenge in your life. It doesn’t make your dreams unattainable.

So… pray for me if God brings me to mind, won’t you? This working towards “the me I want to be” is scary sometimes. I’ll promise to pray for you too… just shoot me an email and let me know how I may do that on your behalf!  denise.portis@gmail.com

My dreams (now public knowledge)…

I want to teach MORE than I am now, and would like to teach in a community college.

I want to write a book.

Denise Portis

© 2010 Personal Hearing Loss Journal

P.S. An incredible book I am enjoying… “The Me I Want to Be” by John Ortberg. Click the book to find out more!


A Little TOO Helpful!

Published on by hearingelmo2 Comments

Chloe and I can be found in Wal-mart on most Tuesday mornings. A friend from my home church in North Carolina (thanks Kim!) told me that the best time to go to Wal-mart was on Tuesday mornings. As I rarely stand in line to wait AT ALL, and as the aisles are usually clear of shoppers, she was exactly right. I save a lot of money at Wal-mart, so it is worth my while to even get my groceries there as one of the two Wal-marts in Frederick is a “super” Wal-mart.

This morning the weather was gorgeous! Not a cloud in sight, so I didn’t even bother bringing my cane. Not only was I not wobbly today, but I had a spring in my step! (Well… a spring for ME!) We hadn’t been shopping very long when we approached an elderly lady pushing her cart and shopping. She asked me if she could help me find something.

I took a good look at her and noted that she wasn’t a Wal-mart employee.

“Erm… No thank you!” I replied. “I’m finding everything I need”.

“What do you need dear, let me help you!” she insisted.

She even turned her cart around so that she was now headed in the SAME direction as I was. I stammered, “Well … umm… I’m looking for golden raisens. They come in a big yellow box”. She spotted them for me and placed them in my cart.

“What else do you need, dear?” she asked nicely but firmly.

“Really, I’m fine. I appreciate your help,” I said a little nervous now. I moved on down the aisle and the little lady stayed right beside me with her own cart.

I’m really not a DUMB person, but it took me until the third aisle of us shopping side-by-side that I finally realized something. She had just handed my list back to me after noting something I needed and bringing it to where I was. She thought I had vision difficulties! I quickly put together that having Chloe by my side meant she thought that Chloe was my seeing eye dog!

Now hiding a big smile, I finally tapped her and said, “Ma’am? I’m not blind. I have a hearing loss! I’m a late-deafened adult and this is my hearing assistance/balance assist dog”, I said as I pointed to Chloe’s vest.

She paused a moment, read the vest more carefully, and then looked at me with a big beaming smile and said, “Oh! I can’t hear either!”

Too helpful?

This little lady certainly didn’t mean to be a “pain”, but I had tried to explain that I didn’t need her help a couple of times. Without being almost rude… I didn’t know how to get rid of her!

She really DID mean well. She was trying to help. She thought I was a young woman (compared to HER) who couldn’t see well and was trying to shop on my own. She was being helpful. It wasn’t until I realized what she thought my limitations were, that I was able to explain exactly what I could and could NOT do.

Many times a person with a disability may feel frustration building up inside because of how HELPFUL everyone is! It is important to find out exactly what it is that a person with a disability may need from you – if anything. I attend Fidos For Freedom a couple of times a month with Chloe for training. I work side-by-side with people who have many different kinds of disabilities. Everyone is different. Even those of us with hearing loss vary in how our disability impacts our lives. I am more likely to need you to offer me a steady hand when getting up off the floor, than I am for you to repeat something that I missed. Our training floor is looped, and I hear really well in spite of the huge training floor. Other hard-of-hearing people or late-deafened people may not hear as well as I do, but are more steady on their feet. Chloe actually helps me with balance-related tasks almost as much as she helps me with sounds I cannot hear or “place directionally”.

Some of the clients use walkers, wheelchairs, or power scooters. Some have canes that they use all the time – not part-time like I do! Yet, each of them have varying degrees of ability. After being matched at Fidos For Freedom, the trainers work hard to have YOUR dog learn specific tasks that will help YOU. So I have learned to not “help” unless I have already established a relationship with someone and I know exactly how I might best help them.

One thing I have learned about people with disabilities… they don’t want to be treated like they are disabled. They usually try to maximize their ABILITIES so that they can live a good life in spite of a disability.

How Can I Help?

Having two young adult kids is another good reason to learn to ASK how one might help. Try not to assume what someone else needs. Simply ask. If they want or need your help, they are given the chance to take control of their own needs by requesting specific help for specific tasks. My son? Yeah, he’ll let me do his laundry until he leaves home. Because I LOVE doing laundry (I realize I’m strange), I don’t mind doing this. However, I have learned to ASK if one of my kids needs my assistance. Because I respect them and have shown them that I trust them to let me know if they need something, they have learned to ask for help when they need it.

We should take care about not being to prideful to ask for assistance when needed too. That can be harder for some than others!

What type of things do people try to help you with even though you may not need it?

What types of things do you have trouble ASKING for help with doing?

Denise Portis

© 2010 Personal Hearing Loss Journal

Try Something New

Published on by hearingelmo2 Comments
An Elmo Application for the iPod

My husband called me into his office last night and checked out the “side of my head” to see if I still had my cochlear implant and hearing aid on to hear. I kind of grin to myself when he does this, for after all… I’d not hear him call me into his office if I didn’t have my cochlear implant on my head!

He said, “Can you put headphones on over your implant and hear?”

I looked to see what headphones he was talking about and noted that it was his nice “noise canceling” headphones and not the ear buds. “I’m sure I can,” I responded, “but I’ve not tried!”

Now I’m likely one of the few Americans that does not own an iPod. I also do not have an MP3 player (although I think those aren’t as popular now!). It may have something to do with the fact that I have a hearing loss. Prior to the cochlear implant, I had become accustomed to living without music. (Kinda of sad if you think about it…) My CI has some fancy attachments that I can use so that I can actually use an iPod if I want. However, usually I sit at my computer and listen to iTunes. I make a special time to do that, and enjoy the music better if I’m not busy doing something else that requires my concentration.

My husband has an iPod touch. He is a very techie/gadget kind of guy. I’ve heard him dreaming out loud in his sleep about the new iPad. (I’m fibbing of course… I’m deaf at night!). He held out the headphones to me and motioned for me to put them on my head.

I adjusted them to where I could comfortably place them over the processor (the headphones were HUGE and covered my entire ear!). He handed me his iPod touch. I stared at him blankly. “Ummm. I haven’t a clue as to what to do you know!” I grimaced. (Hubby and I are blissfully married because ‘opposites attract’ as I do not have any techie/gadget cells in my body).

He motioned with his finger, and showed me how to “touch” the screen. My breath caught in my throat as Elmo trotted onto the screen. As only Elmo can, he described how I could make my own monster friend. I listened to the instructions, and made my very own monster with Elmo’s help (see above). Elmo showed me how to make my monster friend dance, exercise, and more. My eyes were wide and my grin infectious… I thought.

One look at hubby and I could tell he was afraid he’d never see his iPod touch again. “No worries, honey!” I explained. “I don’t want your iPod!”

Trying not to look obviously relieved, he motioned for me to remove the headphones. “I can buy you one, you know!”

“Naw! This is a cute application, but I’ll stick to what I know best. Thanks for sharing that!” I replied.

At Least Try

Now I might fall in love with the iPod, if I sat and used it for a longer period of time. I tried it and it worked well for me. However, I really like my iTunes! In spite of how cute that Elmo application was, I wasn’t ready to invest my money on something I may not use much. I am happy with what I have. What if I told my family members (desperately looking for birthday gift ideas) that I did not want an iPod even though I had never tried one? My tone and words might convince them I was serious, but how believable am I if I’ve never tried it?

I remember when my kids were little how difficult it was to get them to try new foods. They weren’t allowed to wrinkle their noses and say “no thank you” to something they’d never tried before! I encouraged them to always “at least try” new foods.

Sometimes we don’t try new things because we are afraid we’ll fail. I could have taken one look at the iPod laying in one of my husband’s hands, and the headphones in the other and said, “Ermm… no thank you dear!” How would I have ever known if I could use the headphones that way? I would have missed seeing Elmo dance across a screen. I would have missed the opportunity to prove to myself that the tiny, slim, techno-intimidating iPod wouldn’t blow up if I touched the screen wrong. I had to at least try!

Trying Something New

Why don’t people like trying new things? Hopefully, I have modeled good behavior for my kids that they should be willing to try new things before deciding on a different route. Obviously I’m not talking about drugs, alcohol, sex or other self-destructive behaviors! I sat down and tried to come up with a list of why people do not like trying something new:

1. Fear of failure. What if I blow it? What if I am not able to complete an 8 km race? What if I don’t reach my weight goal?

2. Old habits. I’ve always done it this way. Why should I try something new? The way I do things now work well for me. There is no reason to start something new.

3. It might cost me. I don’t have the time or money to start something new. What if I have to give up something else in order to do this “new thing”. I enjoy reading books, and that 1/2 hour walk will eat into my “me time”!

What are other reasons we may not try something new? I’ll never forget the first time my assistance dog was asked to do something new that she did not want to do AT ALL. You can read about it here. It took a lot of encouragement from people she trusted for Chloe to descend that staircase at Harper’s Ferry. The staircase seemed to lead “no where”. Does having a group of cheerleaders help you when you are trying to muster the courage to do something new? Maybe you don’t do well with a whole PEP SQUAD behind you, cheering you on! But the quiet encouragement from a trusted friend or two has shown to help you step out in faith – to try something new?

Trying new things is good for us. It gave my assistance dog new-found confidence and strengthened our bond. When I try new things I feel as if I’m exercising my mind and body. I’m growing.

Why should we be willing to try new things?

1. We may find a better way to do something! The “new way” may save time and money!

2. We may discover a new skill or exercise a talent in a new way.

3. We may meet some really incredible people!

4. We may find ways to minister/serve others in our “new hobby”.

5. You may come to the conclusion that the “old way” works just fine! (I really am perfectly happy with iTunes on my computer!)

Being willing to try new things also helps us to learn to put a little faith in others, which for some can be a difficult thing to do! Trying new things may also force us to have faith in what God has for us too! Some folks have an easier time trusting others than they do God. This should not ever be the case. (But I’ll leave that topic for another post!)

What have you tried “new” lately?

Denise Portis

© 2010 Personal Hearing Loss Journal