Nucleus Freedom – Page 6

Nightmare Trip

Published on January 25, 2009January 30, 2009 by hearingelmo3 Comments

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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)

Denise Portis

Look Out Behind You…

Published on January 18, 2009February 3, 2009 by hearingelmo4 Comments

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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

What Came First?

Published on January 1, 2009January 1, 2009 by hearingelmo2 Comments

The Chicken or the Egg?

What came first, the chicken or the egg? That phrase brings a smile to my face every time I come across it. It has been the cause of many a debate from both my childhood and my present. I suppose I’ve always been surrounded by people who love to argue a point. Everyone knows the chicken came first. If you disagree with that… well, you’ll need to write your own post!

In life there are many cause and effect changes. These are either passionately discussed because of more serious consequences that can occur, or worse – not discussed at all due to what many may view as a “taboo” subject.

I’ve always been a “worrier”. I can remember hearing from my mother at a very young age, “Denise… don’t make mountains out of mole hills”. I was also told that if I didn’t have something to worry about, I’d work hard until I had found something to worry over. As an adult, I prefer to look at my “worryin’ over things” as my way of preparing, planning, and anticipating outcomes. Believe it or not, “worrying” calms me down.

But I am not misguided in believing that worry is the same thing as anxiety. I don’t remember being an anxious kid. “Worrier” – yes, anxious – no. I do know that I have had anxious periods in my life. I have a new “friend” who is a phenomenal writer. I’ve been pushing Lisa to investigate writing a book and hope I have finally twisted her arm in doing so. Having benefited from her wisdom and straight-forward speculations, I’ll be one of the first in line to buy several copies. She has been blogging about “anxiety” quite a bit lately. (If you have had problems with anxiety, I encourage you to begin reading her posts beginning here).

I have met many people with different types of disabilities. I have also met many “anxious” people. Often, those people are “one and the same”. What came first? The disability or the anxiety?

We Can Make Ourselves Sick

One doesn’t have to “google” stress and anxiety very long before they begin to find out these feelings can affect our physical health. Our body’s immune systems can even be weakened when exposed to stress for prolonged periods of time. Although “thinking happy thoughts” does not necessarily cure every ailment, being stressed, worried, anxious and pessimistic can certainly hinder our getting well.

Many physicians who specialize in critical care fields have long been taught how important it is to treat the patient’s mental and emotional state as well as their bodies. Even a patient’s spiritual beliefs can aid in recovery. Discovering (or re-discovering) hope and belief in God, can greatly benefit a patient who has experienced an injury or life-changing illness. My husband wrote his dissertation along these lines. His book is NOT easy reading – smile. Effects of Religiosity on Life Satisfaction Among Survivors of Brain Injury, was written after having seen the direct results of faith on patients with a TBI over a number of years. Terry researched whether or not people with brain injury have higher life satisfaction if they are involved in religious practices. People with brain injury traditionally have one of the lowest life satisfaction scores of any population. They have similar scores to people in prison! In contrast, if someone with a TBI has no faith – no belief system, they tend to have very low expectations and life satisfaction.

Disability or Anxiety?

So… which came first? Anxiety can certainly be triggered by “life events”, but it can also be a chemical imbalance in an individual. Anxiety disorders are serious. Feeling anxiety – an “anxiousness” – from time to time is not uncommon and even expected in this thing we live called LIFE. Can a disability, especially an acquired disability, cause us to feel anxious? Can that anxiety, ignored and untreated, lead to a disorder? Yes… and yes. However, one can have a disability and learn to “cope”. Learning to cope, and developing new interests, skills and networks, makes a disability more of a discovery! One learns how to acquire new ABILITIES.

Being disabled does not mean one is not “able”. Certainly being deaf and having Meniere’s disease, places me in a disability group, or category. I don’t consider myself disabled as long as I work hard at being “able”. A cochlear implant, support group, a service dog and advocating in a positive way, have allowed me to create a way to cope… to live in a normal way. I’m living a “new normal”. These activities keep me from feeling anxious.

Does that mean I never worry? Heck no! But worrying is not anxiety. If I begin to see a set pattern of anxiousness, I treat that very seriously. Why am I anxious? Has something triggered it? Am I eating right, sleeping well, and taking care of myself? However, WORRY is different than anxiety. I have plenty of daily worries that actually allow me to process things and plan my day.

Am I worried when I stand at the top of a stairwell with Chloe in heel, people milling all around me, and the room spinning counter-clockwise as I desperately try to adjust my eyes to the depth of the stairs below? Well YES! But that worry has allowed me to take steps (pardon the pun) in making it possible for me to traverse stairs safely. Chloe acts as a counter-balance, I instruct students around me that I’m not listening or talking until I get to the bottom… so don’t bother me, I breathe evenly and fix my eyes on no more than two steps at a time, and before I know it… I’m kissing the floor in relief at the bottom! (OK, that’s an exaggeration, but I certainly do feel euphoric!)

Do I feel anxious when my cochlear implant batteries go dead? (DUH) Of course I do! But my worrying about it happening at an inopportune moment, has led to a very real plan of action. I have batteries EVERYWHERE. They are in Chloe’s working vest, my pocketbook, the van, at home, and in my office. My CI is set up to give me a 20 minute warning beep. When I hear it, I continue with what I’m doing but I include a few moments to secure new batteries. I’m an expert at slipping out the battery compartment, punching out the three #675 batteries, and replacing them with finesse and speed. I’m never “deaf” for very long.

I plan in advance to get 8 to 10 hours of sleep each night. (Yes, you read that right). My sleeping a great deal is not a warning sign that I am depressed. I plan to sleep 8 to 10 hours a night! I make it a priority, and I’m often the first Portis in bed each night. I get a great deal of sleep because I’ve discovered that I “hear better” when I do. It takes a lot out of a person to hear through a cochlear implant. Lip reading is not easy. Making sense of the noise in my world takes concentration. I need sleep to function well.

Because of my Meniere’s disease, I consume less salt and caffeine. I take Manganese and working hard at trying to exercise regularly. (My sister and I have a New Year’s challenge to each other to do better at this!)

At the beginning of this school year, I worried like crazy about some of the things I’m required to go to as a teacher that are at night. Meniere’s has made driving at night difficult, as headlights from oncoming traffic trigger vertigo and make it difficult to see. The light acts as a “beacon” if you will, and my eyes are drawn to the counter-clockwise beams around me instead of the road ahead. I worried about how to tell my director that I couldn’t do things at night. But that “worrying” allowed me to plan how I would present my reasons and requests. She listened, and approved my request to not attend meetings after dark.

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To some people, all the things I do each day to be safe, hear well, and live a full and productive life may seem tedious and strange. But these things are “my normal”. These plans and daily preparations are not tedious and strange for ME. Santa Kyersten (my daughter) gave me a cane for Christmas. It was something on my wish list and for me, a necessary tool to live “my normal” on rainy days when my Meniere’s disease makes my balance much worse.

Disability, not Inability

Being disabled means one must find a way to do the things you want to do in a new way. My deaf/blind friends enjoy communicating with friends and relatives by utilizing both cochlear implants and JAWS (a screen reader program for those with visual challenges and impairments). My friends who have mobility challenges, use service dogs, walkers, canes or power scooters. Late-deafened people learn to speech read, use hearing aids, cochlear implants and assistive listening devices. I have chosen to have a partner to help of the canine variety! Chloe gives me independence and confidence.

I’m not trying to suggest that there are not things that every disability group are simply not able to do. I’m deaf. I’m not able to have a job that relies heavily on communication by phone. There are jobs I could never do that require being able to hear well. I’m afraid I’ll never be an Air Traffic Controller! However, the most empowering thing an individual with a disability can do is learn what they CAN do. We live in a wonderful day of technology and gadgets. I can do many things that I would not have been able to do had I become deaf even 20 years ago. When new people come to our local hearing loss support group, we work hard at helping them find ways to continue doing what they want to do at both work and home. There are times an impasse is reached, and we encourage finding NEW things that bring just as much joy and satisfaction as a past job or hobby.

One is only truly no longer “able”, when they give up and resign themselves to isolation and feelings of worthlessness. Yes… there are things I can no longer do that I once enjoyed. But people who cared “booted me in the backside” and encouraged me to find new things I could do! I have a disability, but I live a rich and full life. I feel productive and satisfied with my life.

I’m sure that being a person of faith, has made this transition to a “new normal” easier for me. My life can change, and my abilities may “morph”. God never changes, nor deviates from being my Anchor that HOLDS. The reality is… HE came “first“, and I work hard at keeping Him there in my life.

Denise Portis

“I’ll take ‘Dead Dogs Can’t’ for $600, Alec”

Published on November 17, 2008November 17, 2008 by hearingelmo2 Comments

(Alec) “For $600, the answer is… a video clip”:

(Denise) bites nails… “Umm, ‘What is ROLL MY OWN BLANKET’?”

(APPLAUSE)

Kyersten and I attended a play at her college yesterday afternoon. She attends AACC and had one requirement for ‘Fine Arts Survey’, that she hasn’t been particularly excited about completing. She had to attend one of the performing art productions and then write about it in a two-page paper. Somehow, I managed to allow myself to be talked into going with her. ‘Chalk it up’ to wanting to expose Chloe to new things, while attending something I use to enjoy tremendously – a musical. “Guys and Dolls” was actually very good and I’m glad I attended.

We arrived early in order to find a good place to sit. I was thankful I chose to do so, as our tickets had me sitting in an aisle where the floor sloped dramatically towards the stage. Since I didn’t want Chloe to slide down through the audience during the show, I quickly found a manager and asked permission to change our seats to a section where the floor was level.

We settled into our seats and waited as the opening act was still about 10 minutes away. A couple scooted around behind us and passed Chloe and I on the left. The woman jumped a little bit, and slapped a hand to her chest as she looked down at Chloe. Chloe looked up from a perfect down/stay (perfect because she had already drifted off – smile)

The woman exclaimed, “Oh my… I thought she was DEAD!”

I looked at her with rather bewildered astonishment, and said, “I’m sorry? What?” (I said this while signing “sorry”. It’s hysterical to me that even when I hear, I start signing if I don’t understand. Like that clears it up for me?)

She repeated, “Oh, I thought SHE WAS DEAD!”

Her husband took her elbow and they moved on down the aisle. Perhaps he wanted to take her to a more private location to HAVE HER HEAD EXAMINED! I looked over at Kyersten with my eyebrows raised, while Chloe laid her head back down and continued her imitation of a dead dog. Kyersten has a flair for the understated “duh“.

“Yes,” she snorted rather unladylike, “we carried a dead dog in here and laid it down on a blanket!” She said it under her breath, but loud enough for me to hear. (What this lady said must have bothered Kyersten too, as she later whispered, “I think she was just so startled to see a dog, that she said the first thing that POPPED into her head!” She rationalizes well, don’t you think?)

We giggled about it for a few minutes.

———————

SIDE NOTE: I have a very weird sense of humor and my thought process is rather… erm… unique. I just talked to a trainer at the “Ask the Trainer” booth for the 10th annual Stroll ‘n Roll, “how do you get your dog to fetch something new?”

Tracy B., talked to me about how to teach Chloe to fetch my cane. (Santa is bringing me one for Christmas because I’ve been a ‘good little girl’) You start with simply clicking and treating when she TOUCHES what you want her to notice.

So I pictured:

“Chloe… touch the silly lady…” (Chloe gets up and pushes her nose on the hand of the lady who thought she was dead) Good touch Chloe! (Click… treat…)

Yeah. Like I said… I have a strange sense of humor…

——————-

The performance was nicely done, and I was rather proud of how much I heard AND understood with the help of my cochlear implant. As musicals have much of the story line put to “song”, it’s rather important to be able to not only hear the spoken lines, but the ones that are belted out to music as well.

Chloe did great too. She slept through the whole thing with the exception of one scene where a police officer blew a whistle while chasing after the gangsters involved in “Crap games”. She sat straight up and peered over the heads of those in front of us and watched the chase. I threw my arms around her neck to talk to her quietly and to insure I could feel any bark getting ready to erupt from her chest. Fidos For Freedom Inc., does such a great job preparing these dogs for new experiences even from the puppy stage! Chloe simply settled back down immediately after being given the assurance that “all is well”. (Plus the acknowledgment that she wasn’t invited to participate in the chase!)

Sometimes people with disabilities give up on even trying to participate in things they once enjoyed. They don’t believe that they can make a difference. They can easily get caught in a vicious cycle of thinking they ‘can’t do anything’ and therefore think ‘everyone should do things for them’. Don’t get me wrong – there are things people cannot do if they have a hearing loss and have a cochlear implant. I can’t deep-sea dive, nor hear really well in places with a tremendous amount of background noise. I can’t fit in a size 4 dress either… although that may be a bit off-topic.

People who hear VERY well, have things they cannot do. No one in my family has a hearing loss but me, yet they can’t deep-sea dive either! (OK, I might should clarify that the fact of the matter is, no one in my family can swim!)

But every individual is capable of “something”. Every person can make a difference. You know that scary stairwell I talked about here? In the very corner of the picture, you can see the edge of a wheelchair. This wheelchair belongs to one of my students. She was born with a disability that makes things like walking – – difficult. Yet, she

comes to classes,

leaves her chair at the top of the stairwell,

with assistance goes down the steps,

and then cheerfully grabs her walker and heads to her classes in the basement area.

She doesn’t walk well… but to know her is to love her. She always smiles, and is graceful and beautiful in her performance of music in sign.

I’ve met a number of bloggers through the internet who also have disabilities. Each and every one of them make a difference,

somewhere,

to someone.

… and you can too!

Denise Portis

“Take a Deep Breath… and Trust Your Dog”

Published on November 15, 2008November 15, 2008 by hearingelmo4 Comments

Thursday was a particularly nasty, rainy day, and I dreaded “the walk down the stairs” more than usual. Funny thing about Meniere’s disease – rain and other types of weather systems can really make a difference in how steady I walk. I finally remembered my camera too, and I can’t tell you how many tries it took me to STAND AT THE TOP OF THESE STAIRS, on a RAINY DAY and TAKE A PICTURE! Grin!

The school I teach at is on the campus of a beautiful Nazarene church. It’s a “new campus” for us this year. I remember at the first teacher’s meeting hearing everyone laugh and remark on “Moses and the Red Sea” on the stairs. Me? I’m thinkin’, “You can look at a MURAL while going down the STAIRS?”

When I arrived at school on Thursday, I stuck my head in the door of the director’s office to grab some paper for the copier. She grimaced slightly and said, “Oh boy, is this rain affecting you today?” Actually, I made light of it and explained to her that really… this is just sort of a new kind of “normal” for me. I don’t really get up in the morning and think, “wow I’m really wobbly today”. This is my “normal”!

Meniere’s disease symptoms that fluctuate with weather systems, also usually produce worsened tinnitus. Meniere’s disease folks always have a hearing loss, but when tinnitus really kicks into “high gear”, those who are simply “hard of hearing” often hear very little when the tinnitus is in a full-out ROAR. I’m actually very blessed, because I hear through the miracle of a cochlear implant. My cochlear implant masks tinnitus, and so even on days my vertigo is worse, I hear just fine!

I showed my husband this picture of “the dreaded staircase”, and we laughed about how some of my “fears” have certainly morphed through the years. When we first got married 22 years ago, I had a very irrational fear of spiders (even little ones). Now I fear staircases, but I argue it’s completely rational! Smile!

I have to tell you though, it’s a very powerful emotion that burns through me when I take that first step down this flight of stairs. On “good days” it takes me about 2 minutes. On “bad days” it takes me about 5 minutes. Chloe is very intuitive. I don’t think she walks outside and sees the rain and puts that together with … “oh my we are going to be taking the stairs slowly today”. However, on “bad days” she patiently takes me all the way to the bottom, even if I have to stop and wait for the stairwell to stop spinning. (I even had to sit rather suddenly once, and she just sat there next to me looking around as if this was perfectly acceptable to her!)

I’ll never forget when we were first matched, I spent a great deal of one-on-one time with my trainer. Admitting to her that I was scared of stairs, insured that we spent some time at a local mall at the foot of a very tall flight of stairs! I remember turning to her with Chloe in “heel”, admitting with a quivering smile, “I’m going to have to do this slow!”

My trainer is a runner. She shrugged her shoulders and said, “Denise, this isn’t a sprint. If you need to take it slow, then take it slow.” So I did… and on that staircase came the realization that I really could trust my dog. If I were going slow, she would too. My trainer had me take the stairs at the mall, in the closed stairwell at the training center, and in her home. She never helped me look for a way around those stairs. Because of her, I go down stairs. I take a deep breath… and I go… down… the stairs. Why?

Because I can.

Chloe? Well she’s not real happy when the rain interferes with her “W – A – L – K ” at lunch hour. The van is boring.

Denise Portis

When One Makes a Plan to Quit Church…

Published on November 4, 2008 by hearingelmo6 Comments

God has a wonderful sense of humor I believe. I’m quite certain that I make Him laugh out loud on occasion, as I can be funny even without trying. (I’m NEVER funny when I DO try!) I also imagine that He has rolled His eyes, chuckled with minor annoyance, and wished He could THUMP me on the head at times as well.

This past week I had a couple of serious discussions with my husband about church. I had a “plan” about when I would no longer be attending church.

I’m getting ahead of myself, however, so let me explain how all this began. I had begun consciously thinking about what I would no longer do once my kids were gone from home. What started all this (dangerous) thinking was my epiphany of how different fixing supper each night would be after it became “just Terry and I”. I have a “soon to be 18-year-old” son, who eats like most 18-year-old boys. He actually eats very healthy… but he eats a LOT. So while fixing supper one evening, I realized that I would go from baking six chicken breasts to baking just two chicken breasts in only a couple of years!

Well we all know how one “thing”, or one “thought”, can lead to another. Before I knew it, I realized that I was thinking about how I was going to have to explain to Terry why I wouldn’t go to church with him anymore. I hated to have that conversation, for I didn’t have a plan to stop going as a result of my losing my faith, anger at God, or a back-slidden spiritual condition. I felt badly for Terry, because he would have to go alone. And yet, it never entered my thinking that he shouldn’t be going alone. It’s as if the decision had already been made.

I really love our church, and our pastor is a phenomenal pastor/teacher. The couple of things I’ve discussed with him about people with hearing loss were always met with approval and a very genuine desire to help. Churches are exempt from the Federal law (ADA) mandating that assistance dogs be allowed to accompany their partner with a disability. Chloe has always been welcome at my church. But…

I am invisible at our church. I come in and a couple of people say “hello”. I then go to sit down, make Chloe comfortable, sing/sign with the congregation, listen attentively, pray, sit around and wait for my family to finish their “clean-up”tasks, and then we go home. I’ve actually written and then deleted a couple of paragraphs here explaining the different ministries in our church and why I can’t participate (or how I “tried” and it failed… believe me there were numerous attempts!) I’ve chosen to not add that in this post because, 1) I don’t want anyone to think I’m being critical. I feel harbor no ill feelings towards any ministry or individual, and 2) the purpose of this post is to explain God’s intervention and how He’s made it clear I cannot deliberate whether or not I should attend church.

So in order to keep this from being “novel length”, let me cut to the chase. I walked into church Sunday and went to my “spot” in order to sit invisible. God sent three different people over to me that did more than say “hello”. They asked how I was doing, what was going on in my life… He even allowed me to offer prayer and encouragement to someone needing to know that someone would honestly “pray without ceasing” for her.

I went from sitting “invisible“, to sitting “surprised”. Chloe kept looking at me funny, so for all I know my mouth was even hung ajar in shock. Yes. At times God chooses to reach down and “thump” His younguns on the head.

In preparing to write this post, I was reminded that one thing many late-deafened people have in common is the trap of a self-imposed isolation. I’ve been to conventions, conferences, and support group meetings. I’ve even spoken in workshops, research symposiums, and on Capital Hill. I should know better. Yet… I am just as much in danger of allowing myself to simply “drop out”, as someone new to hearing loss. Why?

Perhaps it’s because “all of this gets really old”. Or maybe we wonder if we are making a difference to anyone? My messed up thinking had me convinced that I go to church now because my kids care if I do. I didn’t have to twist my own arm or anything to convince myself that after THEY are gone… no one will notice ME gone.

I say all of this in order to remind all of us, that God can use anyone. He can use the deaf, the blind, and those with mobility challenges. He can use the hyperactive, the extremely shy introvert, and those who do not have “traditional” spiritual gifts or talents. In the meantime, my involvement remains at simply being able to faithfully pray. It’s very likely something I do better than most. I disconnect my cochlear implant, and instantly eliminate all background noise and distractions.

I think the late-deafened get bogged down in what they “use to be able to do”. When I could hear I was in the choir, taught 2nd grade boys Sunday School, led two women’s Bible studies, worked in the Deaf Ministry (how ironic!) and acted as a secretary for the Children’s church. I can’t let what I use to be able to do, keep me from finding joy in what I can do now. If the bulk of what I do happens to be ministries outside the church, it doesn’t mean that I should no longer go.

Don’t allow yourself to believe “church” won’t miss you. In the end, that’s not the point of “church” is it?

Denise Portis

Harpers Ferry Sees a lot of US

Published on November 4, 2008November 4, 2008 by hearingelmoLeave a comment

Denise and Chloe at Jefferson Rock in Harpers Ferry State Park, October 2008

We go to Harpers Ferry a great deal. For one thing it is within “spittin’ distance” of our home. Secondly, the view and park is simply breath-taking. No matter what time of year we go, it’s beautiful. I keep telling Terry that when we retire one day, I want to live in the historic section of Harpers Ferry. (I think he thinks I’m teasing!)

Going to Harpers Ferry is much more fun than it use to be. For one thing, I love hearing the trains thanks to the miracle of “hearing again“. For another, I don’t have near the number of falling or stumbling accidents that I use too “pre – Chloe”. Having a hearing assistance dog who also helps with a great number of balance related tasks makes me much more independent. There is one flight of stone steps that I literally CRAWLED up prior to having her counter-balance on the left! I “see more” of Harpers Ferry than I use too! Grin!

Denise Portis

“Cane” Shopping

Published on October 24, 2008 by hearingelmo3 Comments

I’ve been a little depressed the past week or so. I took a pretty bad fall a “rainy weekend” ago, and had to follow-up with my doctor to make sure I hadn’t broken a leg, arm or rib. I was covered in bruises for a couple of weeks. I mentioned to my husband, that I noticed that if I use my umbrella on the right side (with Chloe in heel on the left), then I do much better on rainy days.

Falling doesn’t make me depressed. Bruises don’t make me depressed. Mentioning “it may be time for me to get a cane for rainy days”, and darling hubby jumping all over it? That made me depressed. I said it half in jest, but he was completely serious.

I’ve been falling all my life. I was one of those “accident prone” kids. I even remember one time in college, my RA told me, “Denise, you fall and run into stuff more than anyone I know!” What is interesting to note, is that I didn’t have a significant hearing loss in college. I only had a moderate unilateral loss due to a pedestrian vs. vehicle accident at the age of six. (The car won)

I didn’t begin losing my hearing (sensorineural hearing loss) until I had a couple of babies at the age of twenty-five. The hearing loss continued in both my ears for over a decade before I did anything about it. All the while, I continued to “fall and run into stuff” a great deal. It’s never been strange for me to be sporting bruises. (The “ATTIC STORY” has become rather infamous!)

Somewhere along the way I developed a mild form of Meniere’s disease. Without my cochlear implant and/or hearing aid, I have constant tinnitus. But it is “manageable”, and I’m quite accustomed to the constant ringing when I’m not utilizing technology and bionics to hear. I sleep very soundly “in spite of”. Along with the tinnitus, however, I began to have vertigo and other balance problems. It is worse when it’s a rainy day, so I know the weather affects it. There is very little one can do for Meniere’s. I cut down on salt, take Manganese tablets, and try to get a lot of rest.

Regardless, on rainy days I have to move carefully and methodically. Chloe acts as a great counter-balance on stairs, ramps, inclines, slopes, etc. However ceiling fans, fast moving bodies (like students running), or loud noises make the dizziness worse. I face a flight of stairs “round trip, each school day. I would think the stairwell is about 8 feet wide, but it is DEEP and STEEP. Just standing at the top of the stairs and preparing to descend, the whole stairwell starts to spin, and I lose a great deal of my peripheral vision due to the vertigo. It can be terrifying, but I’m confident for the most part and Chloe certainly adds stability. On rainy days, however, you can multiply that terror times TEN.

If I happened to fall down THOSE stairs, there is no doubt I would break something. It’s not that I’ve never broken a bone before! My word, I’ve broken a femur, toes, fingers, my sternum, and cracked multiple bones as well. But I’m rather terrified of that stairwell. Perhaps it’s because I’m afraid I’ll hurt Chloe. Perhaps it’s because I know how it would completely freak out the director of my school! (grin)

To humor hubby, I’ve done a little “cane shopping” online. At least some of them are pretty.

But darn… I’m depressed! I find myself asking, “Has it come to this?”

But you know what? I can’t sit around feeling sorry for myself very long. I was taught to “belly-ache if you must”, but then recall how blessed you are! And truly… I am very blessed. With my cochlear implant I hear better than I had ever hoped to “this side of Heaven”. I have a wonderful and supportive family, and a super assistance dog who loves to work. The blessings FAR outweigh my little problems with balance.

I have learned to poke fun at myself when needed, and it has certainly made others more comfortable around my implant, assistance dog, and even dizziness. But I really hate falling…

For now I’m “in shopping mode”. At least they aren’t very expensive! At least I’d only need one when the weather is bad. At least some are pretty! I could add a whole list of “at leasts”! I suppose that’s a form of counting your blessings.

For now, I’ll just “window/monitor” shop. At least… until hubby brings it up again.

Denise Portis