balance disorders – Hearing Elmo

I Don’t Like Music

Published on July 10, 2013July 10, 2013 by hearingelmo7 Comments

“Music was my refuge. I could crawl into the space between the notes and curl my back to loneliness.”
― Maya Angelou

If you follow Hearing Elmo you know that I want the emphasis here to be on invisible disabilities or chronic illnesses. Yes, my own challenges include hearing loss and Meniere’s disease but I always try to draw parallels to what unites us as a community of differently abled people!

I normally do not let this much time go between posts. I like to have guest bloggers (interested? email me at denise.portis@gmail.com), and I prefer that new posts are uploaded every Monday. I was dismayed to see that so much time has passed since my last post. It isn’t because I haven’t had the urge or the time. I’ve actually been trying to figure out HOW I wanted to say something without really getting caustic.

Do you have some pet peeves? Come on…’fess up! We all do, don’t we? Because we are individuals, we all have preferences, dislikes, and pet peeves. We have special things that MOVE us. There are things that energize our spirits. Yet, there are things that depress us. And folks? There are things that TICK US OFF. Consider me ticked off.

Not a Great Example?

While prepping for this post, I was relieved when I realized the person I bawled out is not a reader of Hearing Elmo. Small chance they will discover I’m relaying what happened on here – but rest assured they were fully aware of my opinion when the conversation was finished!

“I can’t believe you don’t listen to music. As a cochlear implant advocate, that is not a very good example! ‘It is too much work, is a cop out’ ”

I was stunned.

Cochlear implant companies have been working hard to make sure that those who “hear again” can also enjoy music in addition to hearing voices, being able to use the phone, and most recently to be able to enjoy water sports without having to “remove your ears”.

But I don’t listen to music. I concentrate better in the car when I do not have the radio on to interfere with my attention. On really long commutes, I do listen to talk radio. However, I don’t listen to music. Not even 80’s music which include songs I listened to while in high school! Oh sure, I have all the gadgets, wires, and assistive technology to allow me to listen to music. I just don’t like the way it sounds. Just as I worked hard at hearing voices I couldn’t see (phones), and hearing voices amongst a ton of background noise, I could devote time to listening to music – but I don’t.

Ummm… How is this Relevant?

You are probably wondering where I’m going with this. You’re shaking your head “yes” at your computer screen, aren’t you?

We have to respect the individuality of other people.

I have chosen to make the invisible things about me – visible. It was my choice. I did these things to celebrate who I am and to unashamedly live MY life.

I use a metallic purple cane on my really bad balance days. I chose to mitigate my disabilities with a service dog. I chose a cochlear implant instead of “embracing my deafness”. After a great deal of research, I chose the Nucleus Freedom instead of another brand. I wear bling-bling and would wear blinking lights on my coil if I could figure out how to make a go of that. I am only unilateral and have chosen not to go bilateral. I chose to work hard at communicating effectively. Music was just not important to me.

Is music important to you? As a person with hearing loss did you work hard at being able to once again enjoy music? Are you a musician? Does music fuel your soul? I’m am so happy for you – really I am!

But we are not cookie-cutter versions of each other. What was necessary, important, and “worth it” to you may not be the same things another would choose to work towards.

There ARE a few types of music I listen to one of which is Christmas music during the holidays. However, can I get a shout out for DISNEY TUNES? For some reason, I have really connected to a number of songs from Walt Disney movies. These animated movies were the first I viewed with closed captions as I developed hearing loss when my kids were small. Once I was implanted with a cochlear implant in 2005, one of the first types of music I DID make sure I listened to were some of these Disney songs. One of my favorite was detailed here AND just so happens to go along with this post.

United we Stand, Divided we fall

So as people who have invisible disabilities or chronic illnesses, we should strive to be respectful of individual choices. It is hard enough to work and live among folks who don’t always get it. Surely in our own community of courageous people we can respect individual choice?

Don’t agree with everything someone says or does despite your sharing a diagnosis? Cut ’em some slack.

What are some things that have left you feeling peeved when judged by your peers?

Denise Portis

Rainy Day Frustrations

Published on April 20, 2009April 20, 2009 by hearingelmoLeave a comment

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

Stupid Is as Stupid Does

Published on March 8, 2009March 8, 2009 by hearingelmo8 Comments

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:

LONG-TERM CONSEQUENCES OF 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

Nightmare Trip

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

chloe-home-from-libery

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