Tag: cochlear implant

Learning NOT to be Afraid

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React with Calm

Last night Frederick, Maryland, experienced a violent thunderstorm. As I remove my cochlear implant at night to sleep, you might wonder how I came to this knowledge? Well… I’m deaf, but I’m not blind. Our bedroom was lit up with light again and again with what seemed like only seconds between strikes. I reached over and tapped my husband and mumbled out, “Lightning”. I think he said something in response, but in the dark I could only guess that it was something along the lines of “no kidding?”

Chloe, my assistance dog, sleeps in her bed right next to me. She acts as my alarm clock in the morning (although there are days I wish she had a snooze button), so her proximity is key. During the storm, I could see from the light bursting into the room that she was asleep on her bed. Not only was she ASLEEP, but she was laying on her back belly up. This is her “I’m very, very relaxed” position. The storm was so violent, the hair on my arm was standing straight up, and eventually our power was knocked out. Chloe slept through it all.

Many dogs are afraid of thunderstorms. I did not know Chloe when she was a puppy but from what I know of Fidos For Freedom, they make certain their puppy raisers know how to use calming signals to help dogs feel more relaxed in stressful situations. Dogs are many times conditioned to be afraid of thunderstorms. Sure, they have terrific hearing and startle at the sound of thunder. However saying, “poor dear” and babying them when they appear afraid will only condition them to continue to feel fear.

Arachnophobia

I have been afraid of spiders as long as I can remember. I have some “stories” to tell, but it would take several boring posts to relay them all. I can’t leave out the one when I almost jumped out of a moving vehicle 7 months pregnant because a spider was crawling up the windshield! Or the time I walked through a spider web and went screaming into the woods only to careen into a tall oak? Yup… I have plenty of spider stories. A post where I discuss it further can be found here.

I have learned in my 43-years of “living”, that if I try to react in a calm way towards things that frighten me, I will be much better off. About a year ago, I caught sight of a spider flying through the air from the top of our old refrigerator to land in the laundry room sink. I screamed one short squeal, and then stood and pointed. My two teens and husband came running to see what had caused me to scream. All I could do was point to the sink. My husband peered into the sink while I attempted to keep my bladder from emptying. As I still was unable to do anything more than point, he turned on the faucet. A silver-dollar-sized, black hairy spider came crawling up out of the drain.

“Holy, 8-legged FREAK, Batman!” yelled my husband who watched a lot of old superhero t.v. shows.

Over time, I have learned to react with CALM so that I will not be so afraid (and eliminate the possibility of injury). I can’t go to Catoctin Wildlife Preserve and enter their “creepy crawlies” building to oooh and ahhh over spiders big enough to suck the brains out of your head. However, I can now look at a spider and scoop him up and toss him outside, or find an old shoe if the pathway to the door seems like a “galaxy far, far away”. I’m proud of the progress I’ve made, and I am far less arachnophobic now compared to where I was.

Why Learn?

Life is short. There are a number of very scary things in life. Where I have the will and the power to do so, I have chosen to be more calm and face my fears.

I don’t fear death. I am secure in where I’ll be one second after my last breath.

I don’t fear deafness and disability. I have found support, help and satisfaction in my life.

I don’t fear growing older. The longer I live, the better I like myself.

I don’t fear financial security. God has seen my family and I through tough times already.

I don’t fear spiders. Unless they are on my person.

I don’t fear thunderstorms. I’m “belly up” in blissful ignorance of a storm overhead.

Don’t let fear shorten your life. It will if you let it.

Denise Portis

© 2009 Hearing Loss Journal

“Take a Deep Breath… and Trust Your Dog”

Published on by hearingelmo4 Comments

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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.

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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

© 2008 Hearing Loss Journal

When One Makes a Plan to Quit Church…

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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

© 2008 Hearing Loss Journal

Harpers Ferry Sees a lot of US

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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

© 2008 Hearing Loss Journal

Made a Spectacle of Herself

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This morning I went to the grocery store.  I hate to go on Fridays, but we were out of a few things that I couldn’t wait for at a later date.  I went first thing in the morning, anxious to avoid the crowds that hit the grocery store on Friday afternoon.

Chloe was in rare form and a bit too playful.  The autumn weather was gorgeous, so I chalked her good mood up to that, and decided this trip would be productive as she was also anxious to work.

Once we entered the store, Chloe decided I needed everything she came across on the floor.  As this is a new skill for her (point and say “fetch object” to different items), I gave her some leeway.  I hope to eventually have her cued to specifics like “fetch water bottle”.  She already recognizes the specifics “fetch keys” and “fetch phone”.  A recent skill she learned was picking up a piece of paper.  This can be tricky, as paper tears easily.  She needs to make sure she doesn’t put a foot on it during the process of lifting it off the floor with her teeth.

The picture above is her fetching my shopping list.  To Chloe, this is a very grand game; she doesn’t realize that on days my balance is bad that the last thing I want to do is to reach clear to the floor for something flat.  So if it is a game to her and HELP to me, we are both happy.

At the check out, I walked into one of the “self-check” out lines.  These things use to scare me to death, and I actually blogged about a particularly funny “first encounter” here.  Now that I have a cochlear implant, I actually like these lines as I can hear the computer very well, and it also chirps and dings.  The conveyor belt even “whirs”!  All of these “noises” are wonderful little reminders of the blessing of “hearing again”, so I probably take more time than I should.

After completing the scan of all of my items, I pressed “finish and pay” just like the “self check-out” veteran I am.  Unfortunately, my Amex card wouldn’t scan.  I caught the eye of a nearby front-line manager, and she came over to see what the problem was.  Evidently it wouldn’t take credit cards “today”, so she printed out a receipt and asked me to follow her to HER cash register where I could scan my card.

I quickly zipped my Amex card through, and promptly dropped it on the floor.  Chloe, still in a great “I’m fetching everything today” mood, did exactly what a hearing assistance dog is suppose to do.  They are trained to do automatic retrieves, as HoH and deaf people often do not HEAR what they’ve dropped.  So before I could interfere, she was in a “bow” trying to pick up my credit card.

Dropped credit cards are “ornery little pieces of plastic” when laying on a hard surface.  She tried for about 20 seconds and then kind of smacked at it and “woofed” softly.  I heard laughter from several different locations, and so lifted my head to see who was watching.  I became aware of 4 or 5 employees standing there watching.  Chloe, a trifle exasperated, started lifting my shoe by the shoe strings in order to retrieve SOMETHING.  I whispered WRONG, as this can set me on my behind fairly quickly! She spied a dropped receipt and quickly retrieved THAT and laid it in my hand.  I pointed once more to the card, and she finally was able to flip it enough with a toenail that she could pick it up.

Applause and cheers erupted around us, and I bemusedly grinned at my working dog. She sat there sweetly with tail flopping 90 mph, very VERY proud of herself.  Several standing around asked her name, and I told them.  In hindsight, that actually wasn’t very smart.  When they see her now and call her name, she’ll want to see who knows her.  Sigh.  I guess I’ll cross that bridge when I come to it.  It’s there on my horizon most certainly, as I never go to any grocery store but this one!

Denise Portis

© 2008 Hearing Loss Journal

A Night in the Life of Our Family

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Kyersten is a guest writer on Hearing Elmo and does a fantastic job (in THIS mom’s opinion) of relating what it is like being a CODA (child of deaf adult) or as she prefers it: KODA (Kid of deaf adult).  I think it’s important that readers “hear” the OTHER opinions and thoughts about how deafness affects a family.  Sometimes those thoughts are sad.  Sometimes those thoughts are angry.  And sometimes?  Sometimes it’s just really funny…

It was very impressive.

We watched as mom sailed over the gate. She flew gracefully in the air and landed rather ungracefully on the ground.

It’s not the fall that hurts, it’s the landing.

There was silence.

This is what she looked like:

Chloe, half asleep, sat up on the couch and peered down at Mom. This is what Chloe looked like:

(… well what she’d look like if she were a cat)

Mom said “ow”.

Chris stifled a laugh, quickly changing his face to the look of a concerned son.

I expressed casual worry, “You okay, Mom?”

Dad asked what happened, unfortunately having missed the dramatic gliding over the gate.

While worried about her, we were starting to get used to her lying on the floor, embarrassed and dazed.

Dad went to help her up. They looked for serious injuries. He helped her back to the couch.

And so we resumed our evening.

Kyersten is eighteen years old and lives with her dad, late-deafened mom, and 6’3″ “baby” brother in Maryland.  To leave out mention of the menagerie of animals living there as well would be… wise – as she wanted this short.

Denise Portis

© 2008 Hearing Loss Journal

“Cane” Shopping

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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

© 2008 Hearing Loss Journal

Who is Responsible?

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I was reminded this week about responsibility regarding my hearing loss.  A friend of mine was caught in an emotional moment, and got… well EMOTIONAL and couldn’t hear.  Instead of letting the other person know that she needed a moment to “get a grip”, she gave up.  I’ve done that so much myself, however, I wasn’t about to “cast stones”!  Even with my cochlear implant, if I get really emotional about something, I find it very difficult to understand what I’m hearing.

If I’m not hearing well, it is my responsibility to stop the conversation and “come clean” about not hearing well.  Sometimes I do that well… and umm… well, sometimes I pretty much make a mess of things.  If I act frustrated and angry because I’m not hearing well, the other person is bound to feel defensive.  I’m trying to learn that if I feel frustrated and angry, I should even say,

“You know?  I’m really frustrated right now.  I can’t hear you hardly at all and frankly it makes my head hurt to try and make sense of what you are saying.  It’s not you, it’s me.  Could you say that again and maybe speak just a little slower and lean closer?”

Sometimes people with disabilities tend to make their problem… everyone’s problem.  It can get so bad, in fact, that they end up thinking the whole world owes them the favor of setting up perfect communication settings. (for those with hearing loss).

At times, I have tried to be creative about making the best of a listening situation.  This past Sunday, my Redskins played.  After church, I generally remove my cochlear implant for a couple of hours as I have a bit of a tinnitus buzz and headache from concentrating on the sermon.  I’m many times exhausted from communicating in a restaurant , which is where my family always heads after church on Sunday morning.

My husband turns the closed captioning off for ballgames.  Those words scrolling at the bottom of the screen, tend to make it a HABIT to get in the way of that perfect interception, fumble or sack!  Normally I’m wearing my cochlear implant, so it isn’t to much of a problem.  I decided to “give in” about the CC as it was only during ballgames.

But this time… I had removed my cochlear implant.  So “free thinker” that I am, I didn’t think twice about sitting close to the television with the ear that has a tiny bit of residual hearing left in it, pressed close to the speaker.  I made sure I wasn’t in the way of anyone watching.

Now that I think about it, I have to laugh.  Hindsight is a wonderful thing!  The fact that I was sitting so close that my hair began to sizzle and spark with static electricity, means that I had to sit close enough I was practically cross-eyed.  I had the remote.  Hard to believe with hubby six feet away, yes?

Slowly but surely I began tapping the volume up.  I like to think it was unconscious, but I was pretty frustrated that I couldn’t hear the game.  So I’m reasonably certain some of that “tapping of the volume button” was conscious.

Something I’ve come to realize in the last year is that the residual hearing I have left in my right ear is practically non-existent.  It doesn’t take a genius to realize that if your cochlear implant batteries die, you scramble for fresh ones and discover the hearing aid in your “regular ear” picks up nothing… NADA… zilch… then you probably don’t have a lot of hearing left in that ear!  (And YES.  Don’t email me cuz I have had my hearing aid checked recently to make sure it works!)  Still, I was caught off guard when my daughter threw a pillow at me to get my attention.

She and my husband both had their hands over their ears, and I noticed the dogs were missing from the room.  It seems I had the volume a little high… and was still having trouble hearing.

I quickly turned it back down and was immediately bombarded with questions which included, “Why don’t I just ask for the captioning to be on?  Is that so difficult?”

The reality of it is, I simply wasn’t thinking at all.  After all, I have a cochlear implant.  It was sitting in my Dry ‘n Store upstairs just waiting for me to put it back on so that I could enjoy the ballgame like a “real” Skins fan.

But… it isn’t my family’s responsibility to remind me of that.  It is mine.  If I’m not hearing well, then I need to be pro-active in finding a way that I can.

It didn’t take me long to run retrieve my cochlear implant.  The dogs were glad to come back and enjoy the game.

Denise Portis

© 2008 Hearing Loss Journal