Tag: disability

A Little TOO Helpful!

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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

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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

But it’s Sunny TODAY!

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Have you ever found yourself slightly anxious and a bit unsettled, simply because you were not able to focus on today? Lately, I have experienced insomnia in part, because I have been focusing on two things while trying to go to sleep:

1. The PAST. I keep trying to think of a way to get even with someone who hurt a person I really care about, only murder requires prison time and doing so would only re-open old wounds. Why is it so hard for me to leave this with God? He can take care of it better than I can, yet I continue to brain storm about ways I might be able to “help”. (rolls eyes at own stupidity).

2. The FUTURE. I will be very close to being finished with my MS at the end of this year. Then what? What do I want to do with the rest of my life? Because… I mean – that HAS TO BE DECIDED TONIGHT! (rolls eyes at my own stupidity).

I’ve been trying to learn to re-focus on TODAY. So much can be missed in today, can’t it? Sure… it is important to learn from your past and to make plans for the future. Yet, I seem to really get bogged down in this mental exercise instead of actually accomplishing something good. In the process I lose… TODAY.

Last night, after kicking the 427,698 th sheep to the curb…

(Hey! I started out counting and patting the head of each that went by… but after an hour, I GET CRANKY!)

…I was reminded of a conversation I had with Sean at a TBI summer camp in 1999.

Today

I was an active member of the Brain Injury Association of North Carolina for a number of years, and my family and I enjoyed helping out at the TBI camp outside of Mayodan each summer. I had my first hearing aid and was already experiencing fairly severe vertigo with balance problems. I had not yet been diagnosed with Meniere’s disease, and I had not yet put together that for ME… rain made my symptoms worse. All I really understood was that when it was rainy, the “ringing in my head” (tinnitus) would get worse and I seemed to fall a great deal. I hated the rain. I was sitting in one of the shelters near the craft hut talking to Sean. Sean was in his early 20’s and had suffered a TBI in a pedestrian vs. car accident. Perhaps I felt some camaraderie with this young man as I had experienced the same kind of accident as a child. However, while I had almost fully recovered from my own accident, Sean was in a wheelchair and had only limited use of his arms and hands. Sean lacked the fine motor skills to participate in some of activities at camp, and because he hated those feelings of frustration and helplessness, chose instead to “talk the ears off anyone who would listen”. I was often that set of ears, (which if you think about my worsening hearing – this was a bit of a hoot!). However, I had learned already to pay attention and carefully ask questions if I did miss something.

Sean reached out and playfully punched my arm to get my attention. (Waving in my line of sight would topple him from his wheelchair, so we had agreed this worked better!) “It is a beautiful, sunny day today!”

I looked up at the cloudless sky and countered, “Yeah, but it is suppose to rain tomorrow. I think it is suppose to rain the next day too! I hate rain!”

Sean looked puzzled and repeated, “It’s suppose to rain tomorrow?”

I’m sure I looked particularly glum as I replied, “Yup! I’ll be falling all over the place! I don’t understand what it is about the rain… I hate it!”

We sat there a few minutes and I could tell that Sean was distracted by my response. I waited for him to gather his thoughts in order to reply.

Finally he said, “But… it is a beautiful, sunny day TODAY!”

I realized with sudden clarity what he was trying to explain. So what if it is suppose to rain TOMORROW! It is a beautiful, sunny day, TODAY.

Don’t Lose… TODAY

I really believe we can get so caught up in things that have already happened, that we fail to move on in our lives. I also think we can become so worried and anxious about tomorrow that we fail to live… today.

I am trying to remember that I only have today one time. My children are 19 and 20 years old, and my oldest is transferring to a four-year college this Fall. What opportunities am I missing each day to interact with them because I’m not focused on today?

How often do I pass a co-worker who looks like they could use a hug? How easy is it to ignore an opportunity to respond to a classmate’s venting about their problems and “get down to business” instead? A funny thing can happen when you become “TODAY focused”. You notice the cashier who needs a smile and small talk at the super Wal-mart. You stop to chat for a moment with the “old timer” that you always meet on your evening walk. You email the person you promised to pray for to see how things are going. You take the 15 seconds required to comment on a FaceBook friend’s wall. You call your significant other during the day, “just because”. You jot a friendly note to your landlord when you pay your rent… on time.

Today is gone so soon. Yet it is 24 hours of opportunities afforded to you alone. Those moments in time and opportunities to make a difference are yours. Yeah… the forecast may be pretty dismal. But it’s sunny TODAY.

Matthew 6:25-32

“Therefore I tell you, do not be anxious about your life, what you will eat or what you will drink, nor about your body, what you will put on. Is not life more than food, and the body more than clothing? Look at the birds of the air: they neither sow nor reap nor gather into barns, and yet your heavenly Father feeds them. Are you not of more value than they? And which of you by being anxious can add a single hour to his span of life? And why are you anxious about clothing? Consider the lilies of the field, how they grow: they neither toil nor spin, yet I tell you, even Solomon in all his glory was not arrayed like one of these. But if God so clothes the grass of the field, which today is alive and tomorrow is thrown into the oven, will he not much more clothe you, O, you of little faith? Therefore do not be anxious, saying, ‘What shall we eat?’ or ‘What shall we drink?’ or ‘What shall we wear?’ For the Gentiles seek after all these things, and your heavenly Father knows that you need them all.

Denise Portis

© 2010 Personal Hearing Loss Journal

“Hearing Again” Woman #7

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FOR TODAY… February 26, 2010

Outside my window…

Oh my! The wind is really strong today! The trees and bushes are whipping about as if in a dance competition. Right now, the bushes are winning hands down.

About 70% of the snow has melted off. Our once spectacular drifts are now mere 2-3 foot pitiful, sloshy, masses of dirty snow. I hate it when all the beautiful “white stuff” no longer IS.

Lots of traffic in the cul-de-sac this morning. Why? It’s a cul-de-sac, not a through street!

I am thinking…

About my little sister and her family. It’s so tough being unemployed. We were there only two short years ago. Other than a health crisis, I’m not sure anything is more stressful on what is normally a solid family unit.

I am hearing…

… the result of all that wind. The trees may be dancing a merry jig in an attempt at “one-upping” the bushes, but the noise they are making sound like bees. Yeah, I know strange. But in trying to discover a way to describe the sound I’m hearing, I can only come up with the very angry noise of bees.

I am thankful for…

… the fact we don’t have a lot of bees around here. I’m allergic. Those epi-pen shots and subsequent ER visit are never very much fun. I think it’s a RIOT how these prompting questions sometimes get me off on a tangent!

Seriously, today I am extra thankful for steady employment for hubby. He pays our bills (barely), and it is steady enjoyable work for him.

I am wearing…

A tan sweatsuit, tennis shoes and a cream-colored turtleneck underneath. It’s cold! I’m also wearing glasses, which for me is WEIRD. I have very itchy eyes, and opted to do without the contacts today. I think the itchy eyes are from the increased usage of our furnace making the air extremely dry. My skin is dry as well… where did I put that Neutrogena Skin care cream?

A Cochlear Implant…

… is wonderful when you want to hear the evidence of what your eyes see in that WIND.

I am remembering…

… the fact that 4 years and 9 months ago, I couldn’t hear the sounds coming from things my eyes could see. Not blowing, dancing trees and bushes, nor people’s words coming from their mouths, the clickity-click of my keyboard, the whir of the ceiling fan overhead… and so much more!

I am going…

… to Fidos For Freedom tomorrow and bonus – – Kyersten is off so she can come with me! I really enjoy these trips to and from the training center. She loves helping out there and working “spare dogs”, and it is something I am glad to share with her. She’ll be gone this fall, and I’ll certainly miss this one-on-one time with her. Sniff.

I need to…

Fold a load of towels, remind my son to vacuum, and finish a research paper for my class.

A disability is NOT…

… always easy. Case in point, my Meniere’s disease/rainy weather caught me by surprise this week. After a couple of unexpected falls and resulting bruises, I allowed myself to feel sorry for myself for 5 minutes. I set the timer, wailed, Chloe let me know when the timer went off, wiped my tears and blew my nose… and GOT ON WITH LIFE. Poor Chloe isn’t sure what to do when an alert is suppose to happen but I’m wailing into my pillow. Her normal, eager bump/kisses are a tentative tap with a paw. I look up and she wags her tail cautiously. Poor thing isn’t use to my pity parties even after being with me as long as she has. Maybe that means I don’t have them very often?

I am currently reading…

Still finishing up “The Reason for God: Belief in an Age of Skepticism”. It’s a tough read I think. His logic and my logic don’t follow the same course. It’s more than the fact that he’s a man and I’m… not. It’s a good book… just tough to plow through. Terry bought me a surprise book though! That alone is impetus for me to finish up the other book. (For… ya know I cannot read two books at once – just not possible!). He purchased John Ortberg’s “The ME I want to be: Becoming God’s best version of you”. He is my favorite author and I have all of his books. I can’t wait to get started. When I read something he wrote… I change. Morphing into something a little better, finer, and more pleasing to God. I just love his writing style. (FUNNY!)

I am hoping…

… for so many things I can’t list them here. Many are constant prayer requests, some are simple quick wishes like a cup of hot cocoa!

From the kitchen…

Tonight we are having steak, biscuits and asparagus. Kyersten works tonight and is not crazy about red meat. I take advantage of Friday nights to have our red meat each week. The guys feel like they’ll perish without it. (rolls eyes)

Around the house…

… it will look pretty good around here once my son vacuums!

One of my favorite things…

… is Earl Grey tea. I have a pot brewing in the kitchen right now. I can’t wait to get to it!

My husband…

… is not resting well at night. He resembles Darth Vader as it is with his sleep apnea gear on his face at night, but he’s been twitching and scrambling about the bed covers. I’m deaf (without my cochlear implant), but I’m not dead. He practically tossed me out of the bed last night at one point. I smacked his arm and told him to cut it out. I think he is having nightmares. I need to talk to him… BEFORE we turn the lights out tonight.

My daughter…

… doesn’t eat enough to keep a mouse alive. Ok, alright! Perhaps she eats plenty to keep a mouse alive… sigh. Yeah, she eats enough to keep a whole FAMILY of mice alive, but she doesn’t eat enough to satisfy MOM. She’s such a tiny little thing, and doesn’t eat the most healthy choices when she does choose to eat. I may have to start fussing at her again. Her clothes are loose and I’m going bananas sitting across from her at family meals seeing her 1/2 empty plate.

My son…

… is not gonna be happy when MOM comes stomping downstairs with an ultimatum about the vacuuming.

My assistance dog…

… is asleep in a sun patch. She and Tyco (our Norwegian Elkhound family dog) have been growling at the howling wind.

A picture to share from this week…

My new book!

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

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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

On the Road Again…

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Denise and Chloe at Covenant College
Chloe enjoyed visiting these colleges, and "tolerated" the long drive.

This past Thursday, my daughter and I headed out on a road trip to visit two colleges on her “short” list. Bryan College is in Dayton, TN, and Covenant College is on Lookout Mtn, just over the TN border in Georgia.

Traveling with a hearing loss can be intimidating, but honestly I’m not new to this! Not to hearing loss, and not to traveling with one. In the past, knowing I had to travel would keep me up nights and worrying about the details weeks in advance. Hearing loss is such a part of my life, I do not really remember life with normal hearing.

Things that Help

I think one of the more obvious things that help me when traveling with a hearing loss is that I make my invisible disability – visible. From wearing bright “bling” on my cochlear implant (currently sporting Christmas “bling”), to wearing a bright red ear mold on the hearing aid in my other ear, I really try to make my hearing loss noticeable. I wear my hair up, and I pay attention. I hear really well with my CI, but I’m also wise enough to understand that late at night after I’ve become fatigued and am standing in a large cavernous, echo-producing foyer of a motel, I may have difficulty hearing! So the reliable, noticeable reminder of my disability only comes to my aid when checking in and reserving a room. Almost instantly, front desk employees “change tactics” and are careful to point out where to sign, wait for me to look up to continue speaking (although I actually hear well when not looking now), and are careful to point for directions instead of simply telling me where to go next.

People must travel with assistance dogs regularly enough now that I never am asked what Chloe does or why she is with me. She is less trouble than “some people’s” kids, so she is only help to me when traveling! Thankfully, at Fidos For Freedom, puppies travel with their trainers quite a bit to expose the dogs to motels, airplanes, etc.

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Kyersten and Chloe at Rock City for a short "break" to visit a tourist attraction

When stopping for gas, thankfully one can easily pay at the pump. The few times I had to go inside to grab a bottle of water for Kyersten or Chloe, the “visible reminders” served the same purpose at these places as well.

Why do I Believe Visible is Better?

I know plenty of people who choose to keep their invisible disability hidden. That is certainly their choice, and I am very supportive of “whatever works” for each individual. It is my personal opinion, however, that being up front about your hearing loss is only in your best interests. I have heard some folks say that they keep their cochlear implant or hearing aid hidden because they do not want to be treated differently. However, it seems these same individuals are very vocal in their criticism of people who continue to forget to get their attention before speaking, failures to set up assistive listening devices in conferences or meetings, or in disdain rebuke those who have accents, are gum chewers, mumble, or are soft spoken. I believe that in keeping a visible reminder that you do not hear the same way others do (with amplification, speech reading, or cochlear implant technology), others are reminded to communicate more clearly and with better speaking skills than they might otherwise employ.

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Chloe at Covenant College waiting for the Admissions Office to open.

I believe that by being visible, I have in many ways become more approachable to others and are more accepting of who I now personally. The moment I decided to become transparent about my hearing loss, my blood pressure numbers began to come down and I became more relaxed and at peace with who I am. Think about it this way… what is your demeanor, attitude, and feelings when in the process of trying to hide something?

loved the wildlife
Lots of critters in the mountains of Tennessee! I had to keep Chloe "tight leashed" to keep her from forgetting her job when on a trail!

Hoping mom doesn’t notice a missing cookie from the cookie sheet that just came out of the oven and are desperately trying to lick the last bit of chocolate chip from your fingers?

Have you ever lied and hoped no one would ever discover the truth? One often has to cover one lie with another… and then another.

Have you ever played hide-and-seek? Your heart accelerates as the person who is “it” draws closer to your place of hiding. You may even hold your breath in an attempt at keeping your hiding place from being discovered!

I believe that deliberately trying to hide something like an invisible disability eventually produces anxiety, unease, and produces a fear of discovery. These are all negative feelings! They do not provoke positive change and influence.

In spite of my bling and wearing my hair up, I still take some folks by surprise. Let’s face it… not everyone pays attention to detail. My husband is one of those people who I can greet at the door when he gets home from work and he will never notice I cut my hair 5 inches or am wearing a new outfit. (I don’t buy new clothes very often either!). Terry just doesn’t pay attention to visual detail. It always gives me a bit of a thrill to see the look on someone’s face who did NOT notice my visible reminders, when I’ve finally had to point to my mouth and say,

“I’m sorry. I missed the last part of what you said because of all the noise in here. I’m deaf and hear with a cochlear implant and just could not make out what you said. Could you repeat that please?”

The person’s mouth drops open and they totally FORGET what they said. Instead they exclaim, “Wow! I would have never known you were death! (Intentional mis-spell here in loving attention of all the times I’ve heard this instead of the correct identification). You are so… So… NORMAL!”

Another reason why I do not want to try to hide my invisible disability, is because I tried “the other way”. Do you know what I felt when something I tried to keep hidden became known to someone? Shame. That shame and embarrassment led to poor self-esteem and anger.

Again, I’m not “preaching” at others to adopt what I have done in order to bring awareness to their hearing loss. I really do believe that each individual must do what work best for them.

This is Who I Am

I am comfortable in my own skin. I don’t believe God reached down and caused me to become deaf. I also don’t believe God is “hands off” and set the world in motion just to sit back and watch everything happen. My life is not God’s Youtube. I believe everything has a purpose. Every good thing, and every bad thing happens in order to grow me. I really believe that! I make choices every single day. Sometimes the choices are small and may only involve what kind of tea bag to grab in the morning. However, many choices involve shaping and molding our character to produce a unique individual equipped to make a difference where I happen to be planted. My choices affect my attitudes and future decisions.

Sometimes our decisions are processes. For example, I did not “wake up” a secure and confident late-deafened adult. I “messed up”, acted out, hid, grieved, griped and smacked people. This was a process God allowed me to experience. The process grew me. I don’t regret the process even though I shed a lot of tears.

I’m still a work in progress! Just because I’m 43 and have been an “adult” more years than I was not, I continue to grow, mature and evolve. I don’t care how old you are, you still have a great deal to learn! We are ALL works in progress. Heck. If I was a “finished product”, God would just take me home!

Denise Portis

© 2009 Hearing Loss Journal

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P.S. If you do NOT like attention being drawn to your disability, I do not recommend being matched with a hearing assistance dog! People notice the dog as if it were a flashing neon sign!

Mandy Harvey – Jazz Vocalist with Hearing Loss

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Check out this talented singer! You can preview selections from her CD at her site below.

From: http://www.mandyharveymusic.com/about

Sometimes you know…you just know! The instrumentation is tight and crisp. The songs are classic and timeless. The vocals are rich and captivating. And you know why a simple CD can comfort, entertain and inspire. It just makes you smile.

“Smile” is a collection of Jazz standards featuring vocalist Mandy Harvey. Give a listen and you’ll find yourself settling into an experience resembling a conversation for a close friend: familiar, yet enriching.

This CD is also an expression of hope. Nearly three years ago, Mandy experienced an unexpected and profound hearing loss. Though legally deaf, she continues to sing. You will hear the music of her heart…and it will make you smile.

Mandy lives in Northern Colorado and is a regular performer at Jay’s Bistro in Fort Collins. Her love for music and singing has been years in the making. She was selected as the top female vocalist of her high school and entered the Music Education program at Colorado State University. During her freshman year she lost her hearing and left the university.

While her dream of becoming a music teacher has died, the music is still alive and well within her. Though her hearing loss is profound (110 decibels in each ear) her timing, pitch and passion are perfect. With support from friends, family and her faith, Mandy continues to find joy in the music. Smile!

It Takes Just One Voice

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My “morning chore” this morning included cleaning up the porch and putting patio furniture up for the season. Each Autumn I accomplish this task, I’m reminded how desperately our deck needs replaced. I haven’t been out on the deck in about a week and was startled to find more Zinnias in full bloom. Don’t they know it’s late October? Most had died and I thought part of my morning chore for this designated “deck clean-up” morning was going to be to shut the flower pots down for the year. I just couldn’t do it… not with brand new Zinnias raising their beautiful colorful heads to celebrate this Fall Fashion Show going on in mid-Maryland right now!

I explained to Chloe how surprised I was to see brand new blooms on the Zinnias. Patient dog that she is she listened attentively, but I could tell she didn’t really understand what all the excitement was about! But you see? The Zinnias were not finished…

Disabled and finished?

This week I received a tearful email from a fellow HLAA (Hearing Loss Association of America) member. She was upset about the state of her local chapter. It seems they are having trouble attracting new members and the old members are rarely participating. They are SPECTATORS, but not PARTICIPATORS. A peer mentor at one of the local hospitals that performs cochlear implants for people in our area, she explained to me that she cannot even generate any interest in those relatively new to hearing loss.

“You can see that the word ‘disability’ has sunk into their very soul, impacting the way they choose to live their lives,” she explained. “I try to explain to them that hearing again through a cochlear implant is something to be celebrated! It is not normal, perfect hearing, but it is hearing and choosing to stay involved in the hearing world in which they were a part! If you talk to them you can tell they are depressed, defeated, and ACTING disabled. It’s as if all the color has gone out of their lives.”

I thought about my own support group and local chapter of HLAA. There are a handful of people who volunteer for everything, work hard at making sure the chapter is well run, make it a priority to attend each month, and reach out to other members who are on the ‘roll’.

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These folks stand out. They smile, are involved in numerous OTHER community endeavors, love people, make a difference… they are colorful. In spite of their hearing loss, deafness, communication needs and problems, they are noticeable because of their focus on ABILITY instead of DISABILITY.

dAp

Fidos For Freedom participates in dAp programs throughout Maryland. Chloe and I have been to two of these early on in our training together. The disABILITY Awareness Program was started in the late 1970’s. The intent of dAp is to educate children and their teachers about disabilities, what it’s like to be a person with a disability, and to increase acceptance of people who may be ‘different’. I’m given the opportunity to talk about what I CAN do. Fidos For Freedom has been instrumental in helping me to be independent again. I have learned so much about what it means to live “in spite of” a disability. There are so many different disabilities represented in our client family. For many, being partnered with a canine partner helps them focus on the “can do” instead of what they cannot. Many enter the training program at Fidos pretty much beaten down by the fact that their life is now completely different because of a disability. They finish their training in full bloom. They stand out and make a difference. Their independence grants them the courage to re-take their life.

One Voice

I love people with disabilities. Near and dear to my heart are populations with hearing loss, deafness, Meniere’s disease and brain injury. I belong to these populations. I wrote back to my friend this week and tried to encourage her. Many small chapters of organizations like HLAA have to make the decision to perhaps only meet quarterly instead of monthly. What you can’t do is “close shop”. If you make a difference in ONE person each year, is that not important?

Do you feel alone? Ever feel as if you are carrying the load alone and GEE HAS IT BECOME HEAVY? You may be one voice. Are you caring for an elderly parent who has Alzheimer’s? Are you a stay-at-home mom with three little ones under 5-years-old and no one at home SPEAKS ADULT? Do you work with people with addictions, and feel your heart breaking every time someone returns to their drugs or alcohol? Do you love someone with TBI who will never be the same person they were prior to their accident? Do you or a loved one live with a terminal illness?

You can remain in FULL BLOOM … in spite of it being late October. You can be ONE VOICE that makes a difference. An amazing thing can happen to ONE VOICE that remains in full bloom in spite of the season. It may take time and a lot of effort. It may not even happen in your lifetime. But one voice is usually joined by another… and then Another… and ANOTHER. You may never discover your own influence this side of Heaven. Be influential anyway. Stay in full bloom. Be one voice… one that makes a difference. If your life is all that is changed, is that a bad thing?

Some of you may cringe. I love Barry Manilow. (Sue me!) My older brother got me hooked on him in the late 70’s. This is a short song, but I ask you to listen to it and think about it from the point of view of making a difference.

Denise Portis

© 2009 Hearing Loss Journal

What does a “Drum Brush” Sound Like?

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drum brush At church on Sunday I watched as the final seconds counted down to designate the start of our services. A timer displayed on the wall allowed everyone to see when the services were expected to begin at Daybreak Community Church. The band members rushed to thier spots and as the last second disappeared, the music director said “Good morning” to everyone present.

The drummer sat down at a single drum and microphone with a tool resembling the one you see pictured here. I had never seen this before as the “norm” for our drummer includes the entire drum set, cymbals, etc. I craned my neck to watch as he used what looked like a “whisk”, on a rectangular drum placed between his knees. I did my best to see if I could hear what sound he was making over there! Unfortunately, I could only hear the keyboard, base guitar and voices around me lifted in praise. It’s NOT that this is usually an unfortunate thing – smile! On the contrary, I am usually extremely pleased to be able to tell where we are as I look at the lyrics displayed on the wall behind the band! But today… I wanted to hear what this “whisk” sounded like!

Drum Brush

Immediately following the final “Amen” and parting song, I rushed up to the drummer with Chloe in “heel”. Because I didn’t even know what it was called, I reached over to his music stand and touched the “whisk”,

“Bobby… what IS that?”

“I call it a drum brush,” he explained while picking it up so that I could see it closer.

“A drum brush? What does it sound like?”

Bobby bent to his drum and “played it” again. I got down on one knee and moved my CI closer to the drum. I strained to listen… and could just barely make out a sound. It was a tiny, fluttery, BRUSH of sound. I smiled and looked up…

“Cool!”

Bobby asked, “What does it sound like to YOU?”

Hmmm… I had to ponder that for a brief yet “ponderous” second or two.

“I think it sounds like rustling leaves,” I replied.

“Hmm. I have always thought it sounds much like Jiffy-Pop popcorn,” Bobby grinned in response.

“Yeah! Yes, it does!”

I knew that agreeing also meant that I had instantly aged myself. For “Jiffy Pop” was something that was long before microwave popcorn. (Since Bobby and I are close to the same age, I knew he dared not make a crack about my age… besides you can STILL buy Jiffy Pop!)

Crackling Leaves and Jiffy Pop

If you click on the videos below, those of you with normal hearing or those who “hear again” with the miracle of a cochlear implant, you should be able to hear the sounds.

    

Memory Makers

Since I have been hearing again for four years now, many times when I re-discover a new sound I equate it to a sound that I still have “stored in my memory banks“. The brain is unique that way. If I am hearing a cat purr, I have a memory of cats purring prior to my becoming deaf. I grew up on a farm in southeastern Colorado. We had many cats and I had stored away what a cat’s purr sounds like. However, if what I am hearing is new to me, I am unable to compare it to the same sound that I was able to hear in my past. The best I can do is compare it to another sound in hopes of being able to describe it and make sense of it as I listen with my cochlear implant.

To me… a drum brush sounds much like the combination of crackling leaves and “Jiffy Pop” popcorn! It is the best comparison that I can think of in my attempts to place a new sound from a new “noise maker”.

Adaptation

Having an acquired disability can “make” or “break” you. I remember when my husband and I first realized that my hearing loss was progressive. I was going to the audiologist about every six months as my hearing was noticeably worse. Holding an audiogram with visible, charted proof that you are losing your hearing is very sobering. It seemed as soon as I adapted to communicating at the current level of loss, I would again lose some more of my hearing. Eventually, I could hear very little in spite of two new BTE hearing aids.

Each time I learned to re-adjust I would try to remember what had worked well for me in the past. Having never been deaf before, I had no comparison. I could only remind myself that I needed to continue to be active and proactive in communication. It worked in my best interest to make my invisible disability – visible. I wore my hair up so that my colorful ear molds could be easily seen. I pointed to my mouth and asked for a repeat if I was having trouble hearing. If I could only make sense of PART of what was said, I would repeat that PART and ask for clarification of what I did not get. If the background noise was extreme, I would ask if we could move to a quieter location to finish the conversation. I tried desperately to remain upbeat and positive. The alternative was scary.

Desperation and Despair

At one point in the process of my becoming a deaf person, I had really lost all hope. I had just moved from North Carolina and was trying hard to not only adjust to a new job, a new level of hearing loss, and a new community, but I had lost every friend that had meant so much to me! My North Carolina friends found excuses not to visit and emails were many times lost in cyber space. I had a great deal of difficulty connecting with people at work and church in my new home. I felt alienated and alone. Couple this with a progressive hearing loss that eventually began to even effect how well I could communicate with my family, and you were looking at one WHIPPED puppy!

Instead of adapting and reaching out for help, I isolated myself and became very depressed. Early in 2003, I found that I was actually contemplating how to end my life. How did I get to this point? At what point had I “given up”? When had I decided to no longer attempt living in spite of a disability? I’m not 100% sure of when it all went wrong, but I suspect I knowingly or unintentionally stopped remembering how wonderful life is! My brain had so many wonderful memories of living a successful and abundant life, and yet I seemed incapable of accessing those memories! I’m very glad that God intervened through people in my life who recognized I had given up.

No Alternatives

There are not any alternatives to adaptation. Life can be… and many times IS hard. We must continue to adapt and “roll with the punches”. There are plenty of blessings and wonderful memories as well. Adapting means we deliberately adjust to change. It is a mindset and a choice.

Lose your job?

Work hard at enlisting the help of friends and acquaintances to help you network to find a new position. You will find your friendships strengthened and you may make a friend or two you didn’t know before. Often times God moves us to a new place to live and serve which ends up providing a great deal more happiness than what we enjoyed before. Most people find that they grow and mature as they re-work that old resume, touch base with contacts and put themselves out there to obtain interviews in their seeking employment.My husband recently went through this and even I noticed the growth in his life at the end of the journey. He is now much happier than he was prior to losing his job.

Lose a loved one?

It can be so hard to say goodbye to someone we care about. I cannot write much about this topic, for truthfully I have yet to experience the loss of someone very close to me. I have seen plenty of people in my life go through this even recently, however. Their lives are a testimony to ME whether they realize it or not. It isn’t a matter of “if” I will experience the loss of someone I love. It WILL happen. I am learning how it can affect a person, and observing God’s grace poured out on the lives of those who desperately need it!

I could go on and on about different things that can happen to a person that requires we adapt. However, I would be writing all day if I did that for in truth, life insists we all learn to adapt. There is no healthy alternative!

Denise Portis

© 2009 Hearing Loss Journal