Not-So-Fun Life Lessons on Vacation

A little morphine will put a smile on the face of most anyone!

Kyersten is a frequent guest writer at Hearing Elmo. She is a KODA and has participated in HLAA, Walk4Hearing, and Fidos For Freedom activities most of her life. She is a junior in college and is majoring in Psychology.

Okay, I’m really, really stubborn

Being someone who hates doctors and hospitals, I pretended nothing was wrong for almost a week. After all, if you pretend it isn’t there, it doesn’t exist right? Besides, you’re not supposed to get sick on vacation, that’s no fun.

But pretty soon I knew that I had, I decided, the stomach flu. So I went to the urgent care in my grandparent’s town. Or rather, one of them, because being a city of retired folk, they have about a million urgent cares.

After running a urine test and blood test (blech), the doctor discovered my white blood cell count was dangerously high. SOME stomach flu. They decided to give me an IV. Or, at least they suggested it…at first.

“No thanks, I don’t want an IV,” I smiled.

“Well, we need to give these medications, and it’s best through the IV,” explained a nurse.

“No, I’ll just take a pill,” I replied, smiling but firm.

“No, we’re going to have to put an IV in there,” said the nurse, smiling but firm.

“No I really don’t want it, just give me some pills, I’ll go pick them up at the pharmacy,” I said, slightly more desperate. The nurse pursed his lips. He was cute and a fireman…but married with twins, so a total loss there. He was just the enemy who wanted to stick the needle in me.

“Okay, well, you have to go get my grandma first. NOW.” I said. (All of my 20-year-old independence was out the window when it came to a needle!) I needed grandma, and I needed her NOW.

Thankfully my practical grandma calmed me somewhat and they were able to give me an IV, into which they slid medications and fluids into my body. Ooooo morphine. The world looked more amusing and less painful. But the morphine didn’t keep me from panicking somewhat when they decided to send me for a CT scan at a local imaging place. SOME stomach flu this was!

Deciding that perhaps I was wrong about the whole stomach flu thing…

After drinking 2 large bottles of nasty poisoned Gatorade (they claimed it was because of the dye mixed into the Gatorade), I was led to a back room.

The technician looked about my age. I was slightly suspicious how much experience he had. He led me to a room to change into some unflattering and itchy clothing. After waiting for a bit, I was led to the Machine.

“Now, this machine is going to take pictures of your insides,” he explained. I wondered how old he thought I was….I was getting a lot of “you look 16” comments recently.

“Oooh, can I put them on Facebook?” I asked, trying to lighten the mood.

“I supposed you can request a CD of the electronic versions of the pictures,” he replied seriously. Okay-y-y. (No sense of humor!)

The CT scan was boring and the technician bossy.

“Breathe in…hold your breath. Breathe out. Breathe in. Hold your breath. Breathe out”. Over…and over….and over….and over. I wondered if this really was taking pictures of my insides or was trying to calm me down from the harrowing IV experience (which, if I may say, was still in my arm. I was pretending it wasn’t there though).

I was sent to the waiting room. They called the fireman nurse and doctor. Pretty soon they called me up front. The fireman nurse was on the phone.

“You’re going to have to go to the hospital immediately. I was able to get a bed for you,” he said. He explained the process of getting there.

I nodded obediently as if he could see me, my rebellion rather withered. I assumed at this point it probably wasn’t stomach flu.

“Okay, I’m going to go get some stuff first,” I said politely.

“No…you need to go NOW,” Well okay then.

Well, this is all very…new…and…well, uncomfortable

So I went. I called my parents, who I had been keeping updated. I texted my brother to tell him I loved him. And I mentally prepared myself for surgery.

And then I waited.

And waited.

And waited.

They decided they needed to do more tests.

The first test they decided to do they quickly concluded they could not do because I am a virgin. They were very peeved. I almost apologized even.

“I’m really sorry I’m not like so many other young people nowadays and haven’t lost my virginity several times over by now!” On second thought, no, I was proud of the fact I was a virgin.

So instead they did an ultrasound. Wait just a minute, didn’t they just establish I was a virgin? So why exactly are they doing an ultrasound? But no, there are apparently other reasons to do an ultrasound. Grandma was completely fascinated. I was just uncomfortable.

Late that night Mom and Chloe arrived, both were tired but very happy to see me. My grandparents went home and I was knocked out by some sleep medication while Mom kept watch by my bedside in the hospital.

I was comforted by her presence and she said I kept reaching out towards her in the night, to reassure myself she was there. You’ll always need your mom.

Tests, tests, and more tests…and I never even got a grade

Kyersten needed a "Chloe hug" once the morphine kicked in...

The next day was filled with more tests, including an MRI. The MRI was probably the highlight of my hospital stay… if there could be a highlight. The MRI technician looked like a mad scientist and he was absolutely hilarious. The MRI itself was kind of cozy, and he actually had to wake me up once. I felt rested after the scans.

After all the tests, including so many blood tests that I lost count, it was time for them to consider what to do, because they were really not sure what was wrong with me. They did another blood test to once again confirm that I wasn’t pregnant (as though the two ultrasounds, the urine test, the blood tests, and oh yeah…the fact I am a VIRGIN, wasn’t enough to confirm!)

Wednesday was the day. I wasn’t scared of the surgery, I was in too much agonizing pain to care. I had never before felt such pain and I hope I never do again. A terrible migraine hit me on top of my stomach pains. Then, my IV decided to try to burst my veins; thankfully, the skilled nurses got it out in time. Unfortunately they had trouble finding a new vein and dug around in my left hand for awhile before moving to my right arm.

A story of being in a whole buncha pain…oh and experiencing being “high”

That time was the worst part of the hospital stay, all I could do was lie on the bed and sob, feeling like a complete baby and wanting so so so badly to be home. My amazing Grandma and Mom were there, answering tears in their eyes. At one point Mom left to talk to a nurse and my Grandma prayed for me…which I needed to hear because all I could pray was “please God please please, please God”.

The nurse, in desperation, gave me a new medication which made me very….well….high.

“I think my words are messed up,” I gasped. I stumbled, shaking as if I was having a seizure to the bathroom and back to the bed.

“I can’t talk, my words are gone,” I moaned in confusion. Mom and Grandma were whispering, used to trying to keep quiet because of the migraine.

“Please don’t whisper….your lips smack together more,” I complained. My poor long-suffering family!

They finally wheeled me down to be prepped for surgery and I did feel a bit nervous. The pain, however,  was over-riding everything else again. The weird pain medicine had worn off. A nurse’s humming drove me insane, as did the loud talking of the nurses around. I really wanted to be in a quiet hole somewhere. Mom asked the nurses to quiet down (bless her wonderful, protective heart), and most of them did, except the loud humming one.

She gave me papers to sign. I apologized for my clumsiness, saying I was not left-handed (the IV and various wires were on my right arm). She snapped at me to use the other arm then. I meekly admitted I needed to use the bathroom.

She ripped the different cords off me (I had spent some moments trying to see if I could change my heart rate, before the headache returned…it was fun!) and took me to the bathroom, hooking my IV on the door, and leaving me. I was terrified someone would open the door and pull the IV out, so I hurried. Barely able to even lower myself to toilet by myself, I half-crawled to the door and yelled for help. I was definitely learning humility! Another, kinder, nurse came and helped me.

Going under the knife…and having little cameras looking inside my body….weird

Then it was a blur, I was wheeled to the room, and after prepping me a little more, I waited for the countdown.

And woke up in recovery.

“I have to pee,” I cried. I was assured I didn’t need to. I sat there whimpering for a few minutes about not being able to see (my eyesight was blurry) before I gained control of myself and calmed down. I felt kind of silly when I realized how much I had been crying. Now I was just confused. I squinted around me. I had no idea what happened in the surgery. The hospital doctor came by and seemed truly pleased to see me. He explained that my appendix had ruptured, they removed it, and cleaned up the infection. Ewwww. Eventually I was wheeled up to my room, I was happy to see my nurses and family, in a very drugged-out foggy way.

The time where I felt like Frankenstein

After another couple of days of recovery, which all seemed like a blur, a surgeon came in to look at my wounds. I watched them uncovered the bandages.

“Oh it looks so good!” he said. I almost screamed…or passed out, I was still deciding which to do before he left. Nine terrible looking staples were stuck in my stomach. I decided I was having a nightmare.

“What is that?”, I whimpered. My mom comforted me and explained the fact I had staples, not stitches. I felt absolutely horrified. I decided to pretend they weren’t there. (I was getting good at denial. It can be psychologically healthy sometimes).

The drug-induced blurred ending of the story…they put me on a lot of medications

The next few days consisted of different milestones. Leaving the hospital… sleeping a lot at my grandparent’s home… going to the airport… setting off the metal detector with my staples… flying home… being pushed through the airport by a speed demon wheelchair “pusher”… and finally arriving home alive. (All of course in a drug-induced stupor).

What I Learned…oh the joy of life lessons

Yes, it wasn’t the best vacation but my pain and suffering eventually stopped. There was a fix. It eventually slowed and I became stronger and felt better each day. In spite of the trauma of events, it was just a “blip” in my life.

I was forced to think about my friends and family who do NOT have a “fix” for their physical problems. I thought of how the doctors at first were skeptical that something was terribly wrong. During the exploratory surgery, I finally had proof something was wrong. (Even though my appendix wasn’t where it was suppose to be… I knew I was special).

I have friends with Lyme disease who do not have “proof” of their illness and are treated with skepticism. I can now understand … in a small way… what they go through and not having a doctor listen to you. It made me appreciate those emotional trials they go through in addition to their physical ones.

I thought about my friends and family with disabilities and illnesses that have no cure. At the times I was tempted to feel sorry for myself (and yeah! I may have given in and had a pity party or two), I thought of the fact that there was a light at the end of the tunnel for ME. It made me appreciate the bravery of those who live each day with no “light at the end of the tunnel”. They still live life to the fullest. I know they have times of weakness and maybe a pity party or two. But they live each day with the strength and bravery that I can never imagine having myself. Pain and helplessness (doing simple tasks like using the restroom), makes common life tasks more challenging. I never fully appreciated what those with chronic illness and disabilities go through each and every day. It helped me go through my small trial of physical pain and helplessness…I thought of these people and felt motivated to keep at it, to be strong. I am awed by their strength. From this experience… I now have new heroes. Those who overcome physical challenges every day.

Kyersten Diane Portis

20-year-old Guest Writer to Hearing Elmo

© 2010 Personal Hearing Loss Journal


Do Not Put it Off!

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

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

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

Looking Back

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

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

Looking Ahead

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

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

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

DO NOT PUT IT OFF.

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

Denise Portis

© 2010 Personal Hearing Loss Journal


Misconceptions

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.

It’s a Shame You Don’t Burn Calories

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

Insecure Foundation?

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 ermACT 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

What does a “Drum Brush” Sound Like?

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

Plague of Small Things

sadI’m not sure where I first heard the phrase, “When it rains, it pours…” Perhaps from my mother who seems to be full of sage advice and quick with witty and appropriate tidbits of philosophical opinion.

It does seem that trouble comes in waves, breaking against my legs and threatening to topple me caboose first in the white foam of an incoming tide. I’m currently CHOOSING TO PARTICIPATE in great number of small worries. Why I seem so eager to engage in shouldering every care , I have no idea! I’m prone to do this and have to place some checks and balances in my life so that I don’t become truly handicapped!

Series on Job

My church recently finished a series of studies on the book of Job. How that man endured the loss he experienced in one day is beyond me! The Bible tells us that one messenger of bad news followed on the heel of another. “While he was yet speaking, there came another and said,” repeats four times in chapter one. I picture Job sitting there with a stunned look on his face while one messenger after another came to tell him his oxen and donkeys were stolen and servants killed, fire from heaven destroyed his sheep and servants, his camels were stolen and servants killed, and finally a natural disaster… a great wind… collapsed the house where all of his children and their families were feasting. No one survived! It always makes my own problems seem so minor!

And yet… it does seem that at times our worries, problems, stresses and cares come all at once. It can make us feel overwhelmed. They don’t even have to be BIG things, although at times they are! I think of friends who are facing cancer, advanced Lyme, depression and the loss of a home. Many of us experience a bunch of small problems all at once… a plague of small things. It is surprising how HEAVY these small burdens can be when shouldered all at the same time.

A Strange Song

A very strange, rather corny song has been going through my head this morning. I have so many things I have to accomplish this weekend I’m a wee bit overwhelmed. Chloe is even feeling my stress and does her best to cajole me into at least a snuggle moment or two! After my morning tea I found myself humming a song that I couldn’t place the name too. I even started singing the parts I remembered out loud in an attempt to trigger my memory of where I’ve heard it before! I’m fairly sure I was singing in tune too as I have my CI on! (smile) Chloe cocked her head and looked at me like I had lost it when I started deliberately placing my feet one in front of the other! Then it hit me! “Santa Claus Is Coming to Town”! Now if you were born after 1980, you may have never even seen the cartoon. However it use to be one of my favorite!

Kris Kringle just befriended the Winter Warlock, whose icy heart had never known true friendship or love. Kris gave him a gift and it melted that hard, cold heart! However, Winter Warlock despaired of being able to change! After all, he’d lived his entire existence as a burdened, angry cold-hearted grump! He worried out loud to Kris,

“But will it last?” and “… it is so difficult to REALLY change!”  His concern was that this change of heart would continue. Would he revert to his old ways? Could he truly release his cares?

Kringle replied, “Difficult? Why look here, change from bad to good is as easy as taking your first step!”

He then bursts into song… “Put One Foot in Front of the Other”.They shuffled side-by-side as Kringle taught Winter Warlock how to take ONE step at a time.

I had to look up the lyrics so that I could entertain the dogs with more than just the chorus. Oh that we would all learn to release one care at a time! Change occurs one determined moment at a time. Releasing stress happens one deep breath at a time. Parking your semi loaded with burdens in the driveway of a Heavenly Father who CAN handle it, happens one trip at a time!

I leave you with the lyrics, which explains a wonderful mindset far better than I can!

Song Lyrics

Put one foot in front of the other
And soon you’ll be walking cross the floor
Put one foot in front of the other
And soon you’ll be walking out the door

You never will get where you’re going
If you never get up on your feet
Come on, there’s a good tail wind blowing
A fast walking man is hard to beat

Put one foot in front of the other
And soon you’ll be walking cross the floor
Put one foot in front of the other
And soon you’ll be walking out the door

If you want to change your direction
If your time of life is at hand
Well don’t be the rule be the exception
A good way to start is to stand

Put one foot in front of the other
And soon you’ll be walking cross the floor
Put one foot in front of the other
And soon you’ll be walking out the door

If I want to change the reflection
I see in the mirror each morn
You mean that it’s just my election
To vote for a chance to be reborn

(repeat chorus twice)

Denise Portis

© 2009 Hearing Loss Journal

B.A.R.C.

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Saturday, Chloe and I headed to the training center at Fidos For Freedom in Laurel, MD. Kyersten came with us which was a real treat as she normally has a ton of schoolwork to do, or has to work.

Fidos For Freedom is blessed with a great variety of personalities and people who volunteer in the training department. Kim, an apprentice trainer,  is one of the newer faces in the training department. She co-led the client chat with Tracy on Saturday. Saturday consists of 1 hour of training, and then a 1/2 hour “client chat”. The “chat” is usually a topic discussing problems/issues of an event coming up, or perhaps a client has had access issues, or other problem that week that the group as a whole can discuss. I always get a lot out of the “chats”.

Kim is a trainer, who just so happens to have a disability herself. She shared with us that as people with a disability, it is important to know what your own personal limits are. If you don’t know your limits, you can quickly get to the point where you aren’t able to take care of yourself or your valuable partner. Many disabilities are invisible. Other people often are not able to tell when you’ve reached a limit. She graciously gave me permission to share her list with you:

Basic Awareness Reality Check (B.A.R.C.)

1. Check in with yourself, physically and mentally – What are your early warning signs? Identify early warning signs that signal you are reaching your physical and/or mental limits.

2. Make a list, put it where you can see it, to have available for those times when it’s hard to remember.

3. What might cause you to not listen to your “body”/”mind”?  Ignoring those early warning signs? (i.e., feeling guilty, feeling that you “should” do something, wanting to “not give in to the disability”… etc., worrying about what other people will think?, not wanting to let someone down or disappoint them.)

4. List at least 3 things you do to take care of yourself. (Things that help you mentally or physically.) Make it a point to do at least 1 of the 3 daily.

5. It’s reasonable to remember that the list can change over time… as bodies age, or disabilities wax or wane… during times of illness… remember to check in with yourself, and update/change the list as needed.

6. Ask for feedback, from family members, friends, for things you might not recognize.

7. Practice letting people know, when you are having a harder time, rather than “hiding or covering up” your disability/illness, and how it’s effecting you.

8. Practice what you would need to say, during times when you are feeling better, just to get in some practice, before you actually really NEED to do it.

9. Ask yourself:  Are you taking as good care of yourself as you do of your dog? Clients, trainers, people, deserve the same kind of attention, and recognition of limits, as they give to their dogs. Remember, You cannot take care of your dog, if you do not take care of yourself.

Denise Portis

© 2009 Hearing Loss Journal

Nightmare Trip

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Trip home:  Chloe kept making sure Mom was ok…

Kyersten Portis often writes for Hearing Elmo. She has only known “Mom” (Denise) as a late-deafened adult. Hearing loss affects the entire family unit, and my disability has made it possible that all members of my family are incredibly “ABLE”.

The scene was already something from a horror movie. It was late at night on HWY 501, and we didn’t know where we were going.  The road was out in the middle of nowhere. The mountains loomed around us and the road showed little sign of life apart from a few abandoned looking buildings. Off in the darkness one could see the dark emptiness of a valley. The road was winding, narrow, and the top speed limit was 20 mph in most places.  Your mind could conjure up pictures of Ax Murderers wandering along the road to murder and terrify… and umm – AX people.

We didn’t run into any Ax Murderers. Still, it was quite a scary trip.

We were traveling to visit a college I’m interested in transferring too in Virginia. It was up in the mountains. As the road became increasingly curvy, Mom became increasingly car sick.

“Why are we here? I have a balance disorder! I feel sick! I hate you, Terry,” she moaned from the backseat where she sat with Chloe. Dad at first defended himself, but then meekly apologized as she continued to pipe up at rather random moments that she “hated him”. (He said later she said the same thing when she was giving birth to me, so he figured she was just in pain and didn’t mean it).

Poor Mom. I offered to switch seats with her as I was in the front, but she refused. She finally started crying. After a couple of minutes, her crying stopped. I was relieved and glad she was feeling braver. I glanced into the backseat…

“Oh my gosh! She passed out!” I gasped. Dad flinched but kept driving. What could we do? We couldn’t stop, no civilization was in sight. (Besides, the Ax Murderers are out there!) Mom came back to consciousness finally.

She moaned, and asked if we were there yet (to which we lied and said, “almost”).  She asked Dad to turn out the headlights. When he said he couldn’t, she told him she hated him, and asked for me to help her find her cochlear implant (which was actually attached to her head) and passed out again. This time she hit the window. I yelped for Dad to pull over. I crawled to the back to where she was at poked her gently. Chloe came up to bark at shadows (perhaps Ax Murderers) and it seemed to bring Mom back to consciousness.  She asked why Chloe was barking and then basically repeated what she had said the first time she passed out. So… I sat in the back and held Mom up as she passed out another few times. I tell you what… there is nothing quite as scary as seeing your mom pass in and out of consciousness. I held my hand up to feel her breathing in and out, worried about how still she was.

We finally made it to our hotel. And Mom? Mom didn’t recall any of the events and felt bad about telling her husband she hated him a 100 times.

I was definitely thanking God she was okay and amused more than anything. She felt dizzy the rest of the night. I listened worriedly at the bathroom door when she took a shower, waiting for a “thunk” if she passed out. But she seemed to sleep it off and felt better the next day and was good on the way home.(We took a different route, and it was DAYLIGHT!)

Actually, the whole car trip could be seen as life with someone with a disability. As life became twisted and dark, Mom felt isolated from the world. But even in her isolation, her family was there. She was isolated from civilization, but we were there in the space (aka, car) with her. She may not have wanted to accept our help, but we were there for her. We held her up, encouraged her, and traveled to the end of the road with her. With God’s help, we brought her out of the depression and darkness and into contentment. Dad didn’t let her push him away, even when she said she hated him. He tried to fix it and carry her to safety. Chloe, didn’t know was going on honestly, but barked at the shadows that crept upon Mom. She stood over her in the dark, worried and trying to help. Many times Chloe helps chase away any gloom that Mom feels just because of her unconditional doggie love. I helped support her, and Chris prayed from home after getting a hysterical text from ME. Mom endured. And we arrived at the end of the road, to peace. We knew there would be other trips and roads, but we enjoyed the oasis of peace and look forward with the knowledge we’ll be okay. God is always there with us. And we always have each other =)

Kyersten Portis

(10 days shy of 19-years-old)    kyersten-brown-0021

Denise Portis

©2009 Hearing Loss Journal

Look Out Behind You…

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Look Out Behind You… and Call Your Dog!

We practice many things at the training center at Fidos For Freedom.  At first glance, the exercise may seem time consuming and even confusing. (My kids ask me from time to time exactly HOW are they going to use Geometry in real life?  Why do they have to do the practice exercises if they will never use it?)

I have to admit that occasionally I think to myself, that Chloe and I will never use a certain command in public.  I wonder from time to time, why we seem to practice some of the commands that we do at the center. I always participate, however, as I have learned to trust the trainers and their judgment in such matters.  One exercise we do several times a month is a response to the command, “Look out behind you and call your dog!” Clients are to take a quick look behind them to make sure nothing is in their way. You then take two or three quick steps backwards, and give the formal command “Fido, Come!” to your dog.  The dogs have been trained to quickly position themselves in a “sit” in front of you, with their nose facing your stomach.  I have very poor peripheral, so a “quick look behind me” has never been an easy task! For me to take two or three “quick” steps backwards, can mean a spill on a day my balance is really “off”.

I have to admit that internally I grumbled from time to time when asked to perform this command on the training floor.  Never again…

When Least Expected, It May Come in Handy!

This past Friday, I left the house early to go to Wal-mart.  I have a love/hate relationship with Wal-mart. On the one hand… I save quite a bit of money at this store. They tend to have a big selection, carry name brands, and have great sales. On the other hand… the lines are awful, it’s hard to find a place to park, and the stores I go to are often messy. (Not easy to navigate “messy” when pushing a cart with a working dog alongside!)

I have found, however, that if one goes early in the day on a weekday, it isn’t too much of a trial. So Friday morning – bright and early, Chloe and I plus my son Chris, headed to Wal-mart.

Chris went to look for a game that was suppose to be “out”, so Chloe and I headed into the pharmacy section alone. I noticed almost right away that she’d startle, and then cock her head to listen carefully about every three or four feet. I was busy looking for my shampoo, but automatically watched her a little more carefully for any further clues as to what she was hearing. As we neared the end of the aisle, her ears were perked up and she looked nervous. Every few seconds, I caught the sound of “something”, but honestly could not tell for sure what it might be! As we rounded the corner, a harried-looking mother with a couple of youngsters in tow came around the next aisle. The kids were screaming and crying, and one toddler was in a sprint away from mom. The toddler hit the end of my cart head-on with both hands and SHOVED. Two or three seconds before impact, I shot a quick glance over my shoulder and took three frantic steps backwards, and commanded urgently, “Chloe… COME”! Chloe obeyed immediately, even though her attention was on the family.  The cart ricocheted off an end-cap of baby oil products. I plucked my purse out of the cart, and put Chloe in “heel” beside me… protected from the main aisle. The mother apologized profusely, and corralled her kids to continue shopping. As soon as she was out of sight, I squatted down to face Chloe and exclaimed:

“Chloe! We Looked Out Behind Us!  We did it!”  Chloe cocked her head to the side like she does when she’s trying to figure out what I’m saying.  (Hmm… was there a command in there that I recognize?) I was positively gleeful… and Chloe?  Well she was not exactly sure why I was so VERY excited about a simple “come” command! Her tail gave a half-hearted flop and she wiggled closer… which of course caused me to plop into the floor from my crouched position. I was totally fine with that! I threw my arms around her and explained to her out loud (and likely LOUDLY given the fact that I have a hearing loss…), “Chloe, I never thought we’d use ‘Look Out Behind You‘, and I did it!  We used it perfectly! I wasn’t hurt… you weren’t hurt!  Hey, it worked perfectly!”  In hindsight, I was very likely a little too excited about something rather trivial. Actually by this time I had drawn a small crowd of observers.

A lady reached her hand out and asked, “Can I help you up?”

“Nope”, I responded cheerfully, “that’s what she’s for!”  Chloe helped me up with a modified ‘brace’, and I reached over for my cart.

A grandfatherly-looking man stood there watching, and remarked dryly, “she’s better behaved than most kids in here!”

Still on a euphoric “high”, I gushed, “YES!  And we did ‘look out behind you‘ perfectly!”

His bemused smile turned to concern and he looked behind him with confusion. I plopped my purse back into the cart and wheeled away with my head in the clouds.

Practice, in Order to be Prepared

Later as I put away groceries and toiletries, I still had a smile a mile wide on my face. I used “Look Out Behind You“! I couldn’t help but chuckle about it even hours later!

You know? It pays to practice things! Think of how practicing even responses to uneducated questions can be helpful! As a person with hearing loss, I have heard some fairly ridiculous questions before. I have also been wounded by rude and simple-minded questions. Yet my response has not always been in such a way that I was able to advocate in a positive way. Sometimes my response, further cemented irrational assumptions by people with normal hearing and balance.  Take for example the following:

Why do you talk that way? Do you have a speech impairment?

Wrong answer: “No, stupid!  I don’t have a speech impairment, you have a BRAIN impairment!”

Right answer: “Actually I have a profound hearing loss. I can’t hear myself anymore and I know I pronounce things funny sometimes.” (I’m so thankful for my cochlear implant! My speech has dramatically improved, even when I’m really tired!)

Why do you wear your hair up where everyone can see your cochlear implant and hearing aid?  Why do you want them to see your disability?

Wrong answer: “It’s none of your business stupid!  I can wear my hair the way I want!”

Right answer: Actually I do that so people are aware that I don’t hear well. I don’t want someone to be upset if I don’t answer when called, or answer inappropriately to a question I didn’t hear well.  It clues them in right away that if they take some extra time to communicate well, I will likely do just fine!

Why do you still ask for ‘repeats’ and not hear things? I thought the cochlear implant was going to FIX you!

Wrong answer: “I’m not Jamie Sommers, stupid!” (Do you see a recurring pattern of STUPID in the wrong answers? Grin!)

Right answer: “Actually my bionics allow me to hear things I never thought I’d hear again! But it isn’t perfect hearing, and I will always be a person with hearing loss. Compared to where I was before the implant, I am doing amazingly well!”

If you are deaf, how can you use a telephone?

Wrong answer: Why shouldn’t I be able to use the phone?  I can eat, drink, and go to the bathroom by myself too!”

Right answer: We live in an amazing era of technology.  My cochlear implant can utilize a t-coil switch, which allows me to use the phone with only a little work, thanks to telephones that are t-coil compatible. I can’t use EVERY phone, but I can use MINE.

Why do you have an assistance dog? You aren’t blind, and it draws attention to you!

Wrong answer: Actually she’s an attack dog… Chloe… BITE HIM!

Right answer: Having both Meniere’s disease, and hearing loss, Chloe simply makes my life easier. She takes a lot of stress out of the fact I don’t hear well. I hear voices pretty well with my CI, but Chloe makes sure I hear all those other noises. I am much safer now, and can do things independently. If I drop things, it takes Chloe seconds to retrieve something for me that would have taken me several minutes to get myself because of my balance issues. I don’t have to ask others to help, because SHE is my “helper”.

If you have an acquired disability, I’m sure you too have heard your share of “stupid questions”. Perhaps your disability is not widely understood, or is “invisible”. We can’t walk around with a neon sign that says, “disabled person” over our heads. And who would want to? Frankly, I highlight what I CAN do, not what I cannot.  Perhaps practicing responses to some of the questions you have heard, will insure that when the time comes for you to reply again, it will be in a positive and educational way. After all, a curt and petty response only hurts the next person with a disability. A measured, well-thought and rehearsed answer is much more likely to produce understanding and acceptance in even the most STUPID irrational person!

Denise Portis

© 2009 Hearing Loss Journal