Rainy Day Frustrations

Chloe doesn't like it when it rains either, for it means "no walk"!
Chloe doesn't like it when it rains either, for it means "no walk"!

Today it is pouring rain. The “farmer’s daughter” in me would never complain about the fact we are receiving rain, but I do have to admit to not being to excited to see it first thing in the morning. A quick look at the forecast reminds me to get my cane. It’s going to be this way for a few days!

Having Meniere’s is challenging at times. I was “vertical” for all of 27 minutes this morning before I fell the first time. Now, honestly you’d think by now I’d see rain… grab the cane… and “play safe” all day. But I can be stubborn when I’ve a lot to do, and tend to leave my cane “somewhere”. Chloe will retrieve it for me without any qualms, unless she has to go through a doorway. It can be hard for a medium-size assistance dog at 62 pounds, to drag a cane that is several feet long!

I think that the Meniere’s disease “gets on my last nerve” more than the hearing loss even. I’ve had a hearing loss for almost 18 years now. The Meniere’s is a “new” diagnosis of less than five years. I suppose one day, I will be as ease with it as I am with being deaf.

Wednesday DEMO at AACC

Wednesday, Chloe and I will be with Fidos For Freedom to give a DEMO at my daughter’s community college. Chloe loves doing DEMOS. I’m hoping we will have some “sun peeking through” by Wednesday. AACC is a beautiful campus and is very accessible for those with disabilities. I’m looking forward to it!

Denise Portis

© 2009 Hearing Loss Journal

Meniere’s Help

A "modified brace"
A "modified brace"

harpers-ferry-may-07-on-stairs2

Today is a rainy, dreary day. I actually love the rain, because it makes everything so green and keeps me from having to water everything! However, when it’s rainy I do take the extra time to “walk safely”. I’m extra careful on stairs, and I stand up slowly. I don’t do anything in a “hurry” that might move my head’s altitude quickly!

Chloe loves to pick things up for me, so I think when she sees me wake up with a little bit of “weave” to my step, she’s actually looking forward to a day of retrieving “every little thing”. Sometimes I don’t need the gum wrapper, or leaf brought in on the bottom of someone’s tennis shoe, but I thank her and praise her just the same. Actually, it’s probably good she brings me everything, for our Elkhound teenager will eat everything!

Meniere’s is not a disease widely known. Even amongst the hearing loss “crowd”, it is just beginning to get a little more “press”. Here are some of my favorite “Meniere’s helps”:

Hearing Loss Web:  http://www.hearinglossweb.com/Medical/Meniere/mn.htm

NIDCD: http://www.nidcd.nih.gov/health/balance/meniere.asp

The Meniere’s Page:  http://oto2.wustl.edu/men/

Meniere’s Organization:  http://www.menieres.org/

Denise Portis

© 2009 Hearing Loss Journal

Stupid Is as Stupid Does

Major tail wag... guess who isn't normally allowed up here?
Major tail wag... guess who isn't normally allowed up here?
face-to-face-0021
What's a dog to do when YOU are down THERE?

Limited by YOUR Barriers

I’ve gone “round and round” about even sharing this with you, as I’ve already caught a lot of GRIEF from my beloved family. I decided to go ahead and post about it, however, because I did learn some things about myself and limitations.

About a week and a half ago, I got what SEEMED like a wonderful idea. I was sitting on my deck drinking my morning tea in the brisk air. Not a cloud in the sky, which meant I was going to have a “good balance day“. Chloe was dozing at my feet. The kids were still in bed. I had a great night’s sleep.

For the past several weeks I had noticed a dead vine hanging on the corner of my house. I also noticed that it was level with the deck in my backyard. Being the intelligent woman that I am (clears throat) I ALSO noticed that it was within arm’s reach of my deck if one was but to “lean a little”. When I first noticed it, my thought was that “I need to get Terry to remove that vine. It bugs me”.

Well sitting there on my deck and feeling particularly FINE, I decided that I would reach around the corner of the deck and grab the vine and jerk it off. Eyesore gone… and I didn’t even have to bother Terry!

Now our deck has a barricade at the staircase, because the stairs are dangerously steep. We plan to replace our deck in the next year, and my biggest “plan of action” is to make a more gradual staircase to the yard below. For now it is barricaded so dogs do not injure themselves going 100 mph down the stairs. (It also keeps ME from thinking I can descend it safely!)

I told Chloe, “Chloe STAY. I’m going to just step over here and grab this vine.

As soon as I put my leg over the rail of the deck she SHOT out of her sit/stay and looked at me with “fear and trembling“. If she could have said, “What the HECK are ya doin’?” she would have!

I perched on the rail and pointed my finger at her and said, “Chloe! Sit! Down! STAY!” She lay there with her forehead all wrinkled up and eyes wide as I slipped my other leg over the rail. I remember thinking, “She is really a piece of WORK! I mean this is easy, it’ll take me 10 seconds!”

That’s the last thought I had.

Stupid Is as Stupid Does

If a person with hearing loss has a balance disorder as well, it just isn’t smart to do things… UP. High. On. Purpose.

Sigh.

I’m not sure how long I was out. When I came too, I could see Chloe barking from the deck above me. She was no longer in a down/stay. (Obviously, I didn’t fuss at her).

I lay there a minute to evaluate “where it hurt“. It only took a second to realize that it was my leg. A stick was poking out of my calf near my ankle and it certainly hurt!

Here’s a picture of:

STUPID:

STUPID
STUPID

LONG-TERM CONSEQUENCES OF STUPID:

My ankle 10 days following STUPID
My ankle 10 days following STUPID

Chloe couldn’t get to me, and was barking like crazy. I couldn’t have been out very long, because I’m sure her barking would have eventually woke up one of my kids. She has a really loud hound bark, (not at ALL feminine!).

Barriers Put Up by ME

As I sat there pulling the stick out of my leg I began to talk to Chloe. As I talked, she stopped barking and just sat there looking down at me with a look of panic on her face.

The real dilemma? All the doors were locked! I was going to have to get to the staircase across the yard, get up the steps and over the semi-permanent barrier we had erected “for safety’s sake”. The door from the deck to the house was the only one unlocked. I could have knocked, but the metal security door under the deck to our laundry room is solid and doesn’t produce a very loud knock.

To make a very long … somewhat boring story – SHORTER (grin), I made it inside. It took me awhile, and I had to find my cochlear implant before even starting on the “trip”! Chloe whined her encouragement the entire way.

My kids were pretty surprised to come upstairs for breakfast to find me with my foot in the air with ice on it. Ok… actually I’m stretching the truth here. My kids know me. They weren’t at ALL surprised to come upstairs to find me with my foot in the air and ice on it.

They DID call dibs on who got to call “Dad” and tell him what happened.

Barriers Can be Good

I put up that barrier for a reason. It should have been a reminder to me just how high off the ground I was. The barrier was to serve as a preventative for descending to the yard below from the deck. By-passing the stairs all together was just a little bit STUPID. That barrier should have served as a reminder AND a preventative.

Sometimes we put up barriers in our lives to protect ourselves. Maybe you’ve learned the hard way to avoid critical people. You put up a block… a barrier to not allow people like that close to you. The barrier can keep people who aren’t “safe” for you emotionally, at a distance that is healthier for YOU.

But why do we sometimes slip a leg over the railing to by-pass the barrier? Why do we seem to embrace people who have a history of causing us emotional duress? Perhaps someone with an expression like Chloe’s, looks on in concern and asks carefully, “do you know what it is you are doing?” Ignoring the possibility that they may be right, you slip your leg over the rail anyway and think, “Gee! They are a piece of WORK!”

Friends? The only work is that long walk “home” after falling on your butt. It may take years even to get back to a healthy place. Almost “home“, and you step over a familiar looking barrier that you had up as a warning and preventative prior to being duped again.

Safe People

Surround yourself with “safe people“. These folks are individuals who bring out the best in you. They love you warts and all. They are an encouragement to you, and cheer lead you to reach for your dreams.

What’s tough is when some of those people who aren’t safe are related to you. There are times you have to interact, but you can learn to do so in a way that they don’t breach even the barriers you put up for them.

I am not encouraging an unforgiving heart either. If someone is truly repentant (meaning they have made a CHANGE) and want to be a friend to you again, you should be willing to trust they mean it. If their efforts fail, however, and they still are a “toxic person”, at least you have the experience and “supplies handy” to put that barrier right back up.

Sigh.

You know the BOOGER of it?

That. Vine. Is. Still. There.

Denise Portis

© 2009 Hearing Loss Journal

Passing with FLYING Colors

aquarium-007

Dolphin Show? Nooooo Problem!

We’ve been to the National Aquarium in Baltimore since my “match” with Chloe, but I choose to sit out during the Dolphin Show. We were “new enough” that I did not know what to expect. This past Saturday we met some new friends at the Aquarium. After soliciting the advice and opinions of fellow Fidos For Freedom folks (geesh… say that 5 times really fast!), I decided to take Chloe to the Dolphin Show. I went a little early so I could pick my own seat. I knew I didn’t want in the “Splash Zone”, but I also did not want to sit as close as where the hearing assistive section was situated. I hear “voices” well enough with my CI, so I decided we’d sit where it was best for CHLOE.

This decision meant in the back and up HIGH – grin! With my poor balance, it took some quickly whispered prayers, Chloe’s steady counter-balance, and a husband walking immediately behind my weaving, dizzy, umm…. BEHIND, for me to get where I felt “safe” for Chloe’s sake.

aquarium-005 Most of the time she stayed down on her blanket, and I was not even forced to reinforce the behavior with her treats. She was OK until she heard the dolphins making sounds. I couldn’t hear it, of course, but my husband said they chattered, chirped and made other interesting noises. Chloe would “pop up” to take a look, but would immediately go back down when I reminded her to do so.

At one point, the crowd burst into applause and exclaimed, “OH!” very loudly. Chloe popped up to take a look, and I found her staring in astonishment! A dolphin was doing the “high jump”, where it burst from the water to touch a ball extended high above the water. If Chloe’s jaw could have dropped open, I’m sure it would have. (I did have to ask her twice after that to go back to a “down”!)

Chloe did great at the Aquarium. aquarium-001 I suppose the biggest “chore” was just keeping her from being stepped on by the crowds, and insuring she was in a “safe place”. I had to put her in “place” a couple of times (opposite of “heel”, to the right). I can’t leave her there very long due to…

… As the World Turns

Meniere’s disease is different in every individual. Although symptoms may be similar, they are never identical. Some people develop Meniere’s along WITH unexplained hearing loss, some people have it without any evidence of hearing loss at all! Some people experience tinnitus (ringing, buzzing, whistling), nausea, dizziness, vertigo, blackouts, blurred vision, and much more.

In a simple, layman’s description:  my world spins counter-clockwise. With Chloe in “heel” (although a modified one as she is slightly forward of a formal “heel” due to my inability to see lower, left peripherally), she actually provides a “check” to my slowly, moving world. As my visual field and brain cause me to feel as if I’m spinning left, her “brace” in “heel” sort of SNAPS my visual field back to where it belongs. She is standing, or sitting STILL, which allows my focus to re-establish center as I am NOT “sitting still”. When she is in “place” however, her body isn’t in a position where it enters my counter-clockwise “spin”. Confusing? (grin) Try explaining the individuality of Meniere’s someday!

Let’s just say I’m glad she is in “heel” MOST of the time. I practice “place” and “circle right” as they are occasionally needed.

All So “Normal” for Us

We also went to the shops near the Aquarium, and then waited for about 45 minutes to eat at The Cheesecake Factory. I can hear voices in quiet environments at normal speaking levels. I cannot hear voices in places with a great deal of background noise, nor can I hear whispered things. I tend to miss all of the exclamations from the general public when they see Chloe do something for me.

When she rolls her own blanket up for me so that it is high enough to reach, or picks up her own leash to hand it to me, I do not give it a 2nd thought anymore. She picks up the end of my cane until it’s high enough for me to grab, picks up dropped items like menus or pamphlets, and just has a GRAND time doing it! Although my family are also accustomed to Chloe being by my side and “helping”, they hear those comments that I do not when we are in a new place.

What can be really fun is to see the look on everyone’s face when I remove Chloe’s vest outside for a short break. My dog morphs into “Miss Congeniality”.

Something is ALWAYS Learned

Even when everything does NOT go as smoothly as Saturday did, I still learn important lessons. The least significant lesson may be a reminder of what should be worked on with more diligence. “Reality checks” are great teachers.

Having a working dog does not mean that I do not have to WORK at adapting. My cochlear implant allows me to hear, and yet I am still deaf. I use a bright purple cane, but I still fall sometimes. Chloe acts as my ears, but I will still misunderstand even a noise I am alerted to at times! How we react when everything does NOT go “great” is a good measure of how we are “really” coping with an acquired disability.

Tomorrow I may have a different opinion, but right now I think I’m “passing with FLYING colors!

Denise Portis

© 2009 Hearing Loss Journal

Camera Shy


The dogs were having such a great time in the snow this morning, I decided to “dash” inside to get the camera. (At least I did a “dash” for one such as I!) By the time I returned, they were still “throwing snow” at each other so I quickly turned the camera on and began taping.

Yeah. You guessed it, I’m sure. My kids tell me the camera makes a beep when it starts taping. Perhaps that was their “cue” to stop acting so darn cute! Regardless of the “how”, they did put an immediate stop to their antics.

Documented Proof

The dogs were having a great time skidding around in the snow – true. But I’ve also been trying to surreptitiously document how incredibly nutty our puppy is in the snow! He’s an “arctic dog”, and honestly I have to force the little booger inside when the temperature drops below freezing. As it is, when he is tired, he tries to find the biggest patch of snow on which to nap!

I thought I had a perfect “Kodak moment” (or maybe candid camera?) when I sneaked the camera outside. Turn the silly thing “on”, and the dogs slid to a halt. Sigh. We adopted Tyco from my trainer who also does Norwegian Elkhound rescue. I’ve also wanted to tape and document how happy Tyco is with our family, and how perfect a “match” he is for our family. Now Pat will have to take my word for it! Grin.

Invisible Disabilities

This need for “proof”… finding a viable way to show something was true above and beyond the value of my “word”, reminded me of my deafness is some ways.

I get some “flack” for wearing my hair up which allows both my hearing aid and cochlear implant to be visible. I’ve had some culturally Deaf folks give me “heck” for not only choosing a CI, but for wearing “bling” on the device as if I were proud of it – as I am! I’ve had late-deafened people question my sanity for choosing to make something visible that doesn’t need to be. Some try to “blend in” and “look like everyone else”, desperately hoping their hearing loss does not interfere with relationships, a job promotion, or other’s perceptions of their abilities.

I suppose in the beginning I was the same way. I didn’t deliberately TRY to hide my hearing aid, but my hair is long and it did the trick without my trying! However, there came a day when my hearing loss changed from “moderate” to “severe” to “profound”. Speech reading is not an exact science, and my hearing aids were no longer giving me any benefit. I was “missing things”. If people were not aware that I had a hearing loss, they did not know to get my attention prior to communicating with me. I said things at inappropriate times (and still do), or missed what the topic was that was being discussed. I decided to try to make my hearing loss more visible. I did this to help both OTHERS, and myself! I wore my hair up, and wore a magnetic badge that said, “Please Face Me. I read lips!”

After I received my cochlear implant, I decided then and there that I was going to continue to make my invisible disability – visible. I wanted “proof” that I had a hearing loss. I was tired of being misunderstood, or labeled as slow, stuck-up, or mean. My CI allows me to hear voices really well (although I still benefit from a person getting my attention first), but I still miss a lot of things to in crowds and big cavernous locations like malls, restaurants, arenas, gyms, etc. I wanted to SHOW my ears and technology, as a reminder that in many circumstances I am still deaf!

For those who don’t know me, my visible technology lets them know I hear differently. A little patience and good communication skills will insure we communicate just fine. Chloe actually “shouts” the fact that there is something different about me anyway! Everyone notices her FIRST. They “mosey over” to read her vest and THEN look up and check out my ears!

For those who DO know me well, I’ve found my “visibility” reminds them I am still deaf “in spite of” my cochlear implant. We had a fire inspector come and test the alarms at our school a couple of weeks ago. My director planted herself right next to me, as I think she was afraid of what Chloe may do. She didn’t want me “falling down” on her “watch” – smile. When the alarm went off Chloe cocked her head and listened. My director explained that there was a voice as well as the alarm. (Evidently, it explains the emergency and instructs people where to go?) I was talking to Chloe to keep her calm (as she was visibly shaking), and I kept an eye on the blinking lights of the strobe section of the alarms set in the hallway.

Later at lunch, my son found me and asked out of concern, “Gee mom! How did Chloe do during the fire alarm?”

I proudly explained how she remained calm and sat in heel during the entire thing. I told him how the director of our school came to stand next to me to “help if needed”.

Chris contemplated that a moment and then said, “It’s a good thing you wear your hair up so those of us who know you remember you still are deaf! You act so normal now!”

(So pre-implant how does that mean I behaved? Gulp!)

Denise Portis

© 2009 Hearing Loss Journal

College for a Day!

chloe-liberty

Chloe had a great time visiting a college last week.  She doesn’t mind car trips, and was pretty good in the motel as well!  (She loves elevators!)

Once on campus, I fought to keep her calm. Chloe’s weaknesses are MEN and “Teens”.  What is a college campus full of?  College guys, who all thought she was rather lovely too.  Oh my!  After a few corrections, she finally realized “Gee.  Denise means business!”  She loved the arena area (above),

because she was able to watch all the action from up high.  She had the best

seat in the house.  She totally ignores all the double-takes.

I’m so glad our church has a live band every Sunday.  The band, lights,

NOISE in the arena were not worth getting excited about, and she is

totally accustomed to my signing the songs.  Later during a meeting a

“boy group” of 3 young men came in to sing to the parents/visitors.

They came and crooned literally within a yard of her.  She slept

right through it.  I’m so glad this type of atmosphere is normal

for her!

Chloe was mildly amused when an admissions counselor asked

me if I was planning on transferring to the university.

I was not so amused.  (My husband and daughter were snickering,

however!)

Ah college… being there almost made me “miss it”!

Denise Portis

© 2009 Hearing Loss Journal

… So Basically I’m GONNA LIVE FOREVER!

green-tea

Green Tea from Costco … my favorite brand

Compelled to Change by Negative Triggers

About four months ago I caught a nasty 24 hour virus.  The only thing unique about this virus was the timing of when the symptoms appeared.  I had my morning coffee and THEN became sick.

Now you have to understand that I’ve been drinking coffee for twenty-four years.  After years of going to school and working I found that I was a 4-cup a day, coffee drinking addict.  I add that last part because frankly, my son reminds me that caffeine is a drug every chance he gets.  (Darn, those assigned research papers on drugs in 9th grade! Could I have known he’d take this information to his grave?)  I always get out of bed before my kids.  In part, the result that MY alarm clock (Chloe, hearing assistance dog) does not have a “snooze button”.  When it’s time to get up she… well, makes sure I’m UP! I normally hit the “on” button as I walk past the coffee maker.  Alternating between French Vanilla, and Hazelnut sugar-free creamers, meant my coffee was my favorite part of the day. I will admit that the fact I had some quiet time to myself during this morning period, also contributed to it being the favorite part of my day.

Nothing spoils “a favorite” like a virus.  When a stomach virus’s symptoms hit after having only consumed your morning coffee, little else “reappears” other than that coffee! I won’t go into all the gory details, but suffice it to say that I can no longer even SMELL coffee. Being married to a psychologist, I’m assuming I’m experiencing psychosomatic symptoms.  The reality is I may simply have a very good memory. All I know is that I can no longer drink coffee.

But when one is addicted to caffeine, (repeated for the benefit of my 18-year-old son who continues to remind me about common, over-the-counter and legal stimulants), one can’t just ditch the coffee and survive. Yes, I realize I might should have taken this opportunity to “kick the habit” once and for all.  Frankly, I love curling up with a hot cup of “something” first thing in the morning!  Desperate to find a quick and painless alternative “source”, I turned to green tea.

Change Can Lead to Discovery

I love the fact that someone MY age can discover something new.  Discovery?  I love green tea.  In fact, I drink green tea most of the day.  After consuming approximately 4 cups of regular green tea, I drink decaf green tea the remainder of the day.  In the four months I’ve been a tea drinker, I tried numerous brands and actually love them all.  I do have a favorite, however, thanks to the Christmas gift of one of my students who happened to stick a few tea bags of Kirkland signature ITO EN into her “goodie basket”.  (Thanks Sarahann!)

I received February 2009 Ladies Home Journal in the mail over the weekend. Saturday evening while trying to find something new to read before going to bed, I decided to curl up with the magazine (and a cup of decaf green tea of course!).  The article, “The Healing Power of Tea” caught my eye.  I learned that ANY kind of tea has health benefits, but green tea seems especially potent in protecting against some of even the deadliest diseases.

According to the article written by Paula Dranov, “… scientists are finding that drinking tea may keep your heart healthy, protect you from cancer, boost your body’s ability to fight off germs, strengthen your bones, prevent cavities and sharpen your concentration”.  Evidently it lowers your LDL (“bad”) cholesterol as well as lowers the risk of plaque build-up in the arteries.  It may lower the risk of a variety of deadly cancers, and boosts immunity to ward of bacteria and viruses… you know, the kind that make you throw-up your morning coffee!  L-theanine  seems to heighten concentration, and another antioxidant found in tea may stave off Alzheimer’s and Parkinson’s! Tea even strengthens bones, and prevents cavities as it contains fluoride.

Now that I’m a tea drinker?  Well, basically I’m GONNA LIVE FOREVER!

Good can come from even nasty viruses.

Compelled to Change by Negative Triggers – Part 2

Change can occur by design, but for me it is often because I’m forced to do so. Does that make me stubborn? (Hmm, scratching head and pondering that). I think I’m just a creature of habit.  When change occurs in my life, it is usually because circumstances forced me to adapt.

No one ever asks for a disability.  Whether congenital or adventitious, disabilities simply aren’t something one HOPES to learn to deal with in their life.  I mean… life is hard enough!  Yet, those I know with disabilities seem to be masters at learning to adapt and to change.  That doesn’t mean it’s always done right – yet, change will happen. One must learn to do things a “new way”.  Many times a person has to learn to ASK for help. Sometimes it means giving up some things you really loved, and learning to enjoy “replacement” activities instead.  There are times you have to “take 5” and just feel sorry for yourself – as long as you get back out there and embrace life when your “5” are up!

I consider deafness and Meniere’s disease negative triggers. Yet the change wrought in my own life, has made me who I am.  I am comfortable in my own skin, with all my gadgets and technology. I’m totally OK with being accompanied by an assistance dog, and I wear my hair up so that my cochlear implant and hearing aid are visible. However, I didn’t start out this way. At first, those triggers only caused me to isolate myself. I lived in a 24/7 pity party. I’m thankful for all I learned through HLAA and from a well-read Bible.  Both were necessary and influential in my life.

Change Can Lead to Discovery – Part 2

Some people look at me like I’ve lost my mind when I explain I’d never want to hear normally (or walk a straight line). I like who I am. As I have not always “liked me”, I’m glad I can say that I do now.  Change ultimately can bring a self-discovery of talents, skills, interests and passions that one never dreamed of before. With a little direction and “cheerleading” from those who have “been there”, change can be an easier transition for those learning to “ask those tough questions”.  Why me? How can I cope? How can I work? How can I communicate? How can I ever be happy again?

The biggest plus to having a disability, is that one usually discovers what is really important. The things that use to “stress” me no longer do. (Likely, I have new stresses!). Life’s big picture sort of SNAPS into place when you have a disability. Family, friends, community, communication become really important. (Don’t believe for a second that someone who is deaf with a communication disorder cannot communicate.  You simply aren’t listening!).

At times “getting there” is not an easy road. But the discovery of who I “am”, allows me to help others and make a difference in my own small corner of the world. Do you feel “change” coming? Don’t run from it. Stand still and let it happen. With the right attitude, support system, and even childlike faith, change can create very real and positive discoveries for YOU.

Denise Portis

© 2009 Hearing Loss Journal

What Came First?

new-cane-008

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

© 2009 Hearing Loss Journal

Whew! Glad That is Over!

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Chloe sleeps, and Sleeps, and SLEEPS!

My vet agreed to do Chloe’s surgery first yesterday as it was considered “minor”, and so that I could get her home earlier than the official 7 PM “release time”.

At 5 PM we arrived at the vet, only to have to sit through post-surgical instructions, paying for the procedure, etc.  I was about to yell, “BRING ME MY DOG NOW!”  Grin!  Good thing my daughter was along to “pinch me if needed” to make sure I stayed calm.

Finally they brought Chloe out to me and she practically drug the vet tech all the way over to Kyersten and I.  I asked another question about the sutures, and so had to wait around for the answer.  Chloe was “all a-tremble”, and Kyersten told me she was whining the entire time.  Normally, I would “shush” Chloe for making noise in public, but under the circumstances?  I let her whine.

She woke me up around 2 AM, and I took her outside for about 10 minutes.  We walked around a little and she did a “hurry up”, but then just stood outside in the cold with her head and down and eyes closed.  (She sleeps standing up a lot, actually!)  I finally coaxed her back inside, and put her back to bed.  I turned the flashlight on every few minutes, and could see that she was laying down in her bed next to me on the floor, but she wouldn’t put her head down.  Likely that ear is sore, and they do sort of HANG.  At about 3 AM, I noticed she finally put her head down again.

It was strange waking up before Chloe (and a full 83 minutes after my alarm usually goes off each morning!)  I was determined to not make her work today so deliberately did not set my alarm.  She was surprised to find me gently nudging her awake.

The hot water for my tea kettle had to be watched extra carefully with my eye on my watch.  I didn’t set the kitchen timer for her to let me know when it was “near whistling”.  I’m staying home today for Chloe’s sake.  She’s on antibiotics, but no pain killers.  Actually, the toughest job I’ve had so far this morning was keeping our Elkhound puppy from playing with her.  Her ears are a favorite target!

Thanks for all the prayers and good wishes for Chloe.  My “inbox” has simply stayed “full” with inquiries and best wishes. We will get the biopsy results by Monday, but the vet told me to “absolutely not worry about it, as she certainly wasn’t”.

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Chloe has a little “notch” in her ear now, but you can’t hardly see it unless you are looking for it.  She’s still a beautiful red-head! Grin!

Denise Portis

© 2008 Hearing Loss Journal

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

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(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.

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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

© 2008 Hearing Loss Journal