May 2011 – Hearing Elmo

When Family Can’t Forget

Published on May 27, 2011May 27, 2011 by hearingelmoLeave a comment

For the sake of this post, I’m brave enough to admit my age. I’m 45-years-old. I remember thinking that 45 seemed really old when I saw my parents celebrate that birthday. Now that I’m 45 myself, it doesn’t seem very old at all. As a matter of fact, I spend a lot of my time wondering when I will grow up.

Are you who you were at 10-years-old? (Can you remember back that far?)

Are you who you were at 16-years-old?

How about 20-years-old? Are you the same person you were then?

I think about who I was at these *mile stone* birthdays and realize how much I’ve changed over the years. Oh sure, our personalities, quirks, and even some habits remained ingrained in our make-up even decades later. But something happens to an individual growing older.

Life.

And you know what? Life can be hard. Oh yes – I know! Life can be very good. However, in my own life the more positive changes in who I am, occurred as the result of crisis and difficulties. One of the more frustrating things about “growing up”, however, is that our families won’t let go of who we were.

Think about it for a second. I left home at the age of 18-years-old. Many of you did the same, or perhaps even younger. Our parents, siblings, and close relatives who sat in the same pew as we did at church and attended the same high school football games, very likely have had very little participation in your growing up since that time. That’s what leaving home is all about. We make our own lives, invest ourselves in our own families, make mistakes, and grow. All this happens with very little influence of the people that were ONCE a major influence!

It’s very frustrating to me, however, to not be seen as who I AM around my family as they think I’m still who I WAS. I wasn’t the best big sister in the world. Having dealt with a number of emotional issues in my late teens, I can admit I wasn’t the best daughter in the world either. Now that I’m 45-years-old I don’t get to see my family nearly as often as I prefer. I have seen my sister 5 times since 1986. I have seen my brothers one time in the last 9 years. We all live in different states – spread out all across the U.S. I am able to see my parents at least once a year. However, I haven’t seen my grandparents since 1999 – which grieves me to no end bein’ they had such a major influence on my life in my developmental years. (Colorado is a long way off from Maryland). I was getting a bit aggravated when family members would make comments about me – even in a teasing fashion -as if I’m still the same person that I was. But then it hit me! How could they know who I AM, since they have not been involved in my life on a daily basis for the last 2 decades? The answer to that is that – they cannot!

As a result of this “middle of the night” epiphany, I began to ease out of feeling frustrated at not being able to leave my past – in the past – around my family. Worse? Try evolving into a person with an acquired disability when your family can only remember you “disability free”. I feel for them! It can be very hard to understand exactly what it may mean for you to live life on a daily basis – different now- solely because of an invisible disability or acquired chronic illness. For my immediate family members the process was gradual and progressive. They would be unable to pinpoint a point in time when I began to be who I AM. But for other friends and family members it can be very difficult to understand who you are now that acquired disability or invisible illness has changed you.

A young woman with fibromyalgia said: “I guess, where i’m very frustrated today, is, i’m having a fibro flareup, no doubt due to stress, i work at a bank, and we’re getting audited tomorrow, so checking, double checking, to make sure everything is just right, and i am so tight, and sore today, and NO ONE gets it, to look at me,i might look tired, but they just assume i’m ok, well, i’m NOT. It’s one of those diseases that no one can see that you have it, they have no idea how much pain we’re in, and they just assume everything is ok, and they don’t understand why I’m being so quiet, and they think i’m mad, and it is not that, i just feel like dirt” (Dannape, 2011).

Invisible illness with invisible symptoms are difficult to explain or even complain about. You LOOK fine.

On a hearing loss forum, 16-year-old Xatego explained: “How do I deal with my family who claim they completely understand my hearing loss? I appreciate the fact that they were supportive and gave some of their time to look after me. But it annoys me when they like to think that they understand my hearing loss and the implications it has on my day to day life. I basically have a 90% loss of hearing. For example, my parents question my need to have subtitles when I’m watching TV. They say if only I watch TV without subtitles, it would reduce my need for it. I explained to them why, they didn’t listen. My cousin and I are basically the odd ones out of our whole family. He has severe autism and behind his back he is labeled by other relatives as the “crazy” one. I wonder what they call me since they treat me like an idiot. One of them even asked me if I was ‘still’ deaf. My sister and my mother gets irritated when I ask them to repeat their words. I get so frustrated; it’s not like I like having to ask them to repeat what they’re saying continually. When they say they understand.. They don’t. If you don’t have a hearing loss you don’t understand the way it cuts you off from people” (Xatego, 2011).

It can be really hard to explain what life is like for you when you are only beginning to understand it yourself.

Trying to Leave your Past – in the Past

Have you ever lived with someone who was losing weight? Someone with a great deal of weight to lose has learned that in order to keep it off, weight loss should be gradual with numerous lifestyle changes. The people who live with you may not SEE a lot of weight dropping off of you. But if a friend or family member came to visit who has not seen you in a long time, they are astonished at how different you look! I think it is the same for family members who spend time with me that have not seen me in a really long time. They are taken aback by the cochlear implant, hearing aid, and assistance dog. They remember who I WAS.

Earlier I asked if you were the same person you were when you were 10, 16, and 20-years-old. As for me? I didn’t really like who I was at any of those ages. Did you make stupid mistakes when you were younger? Did you ever make a decision that left long-term consequences? Ever feel as if you are wearing “scars” as the result of some past experience? I think some of the most crucial, vulnerable moments are in the weeks, months and years immediately following a firm decision to be DIFFERENT. An alcoholic may remember the day and time of their last drink – even if it was decades ago. But they will be the first to tell you that family and friends hurt by their alcoholism had a hard time believing “this time” was for real.

The ex-con will tell you that when they made 180 degree turn and CHANGED, their skeptical family and friends had a hard time believing it was for real!

The drug addict who is now free from the poisons they once put into their body will tell you that family and friends who had “seen it all” – wait around waiting for the other shoe to drop! For a significant amount of time everyone’s expectation is that the person will go back to being who they WERE.

Why do we long for people we love to break bad habits, yet make it hard for them to really do so? Why do we believe they will only fail again? In spite of testimonies of people who have gone on to serve in their communities and churches, raise families of their own, and be contributing, POSITIVE influences in their homes and workplaces, we who knew them “when” expect more of the same. Shame on us! I have seen God use people who were once drug addicts, alcoholics, and criminals in ways He could never use people who look perfect.

At some point in time these changed people made a choice.

and they never turned back.

Victor Frankl said, “When we are no longer able to change a situation, we are challenged to change ourselves”. God uses hardship to change us. But our biggest skeptics may be those who love us best. We may be misunderstood and even spurned. You may feel as if your family cannot let go of who you were. But I’ll never be that needy, selfish, emotional basket-case of young womanhood again. My trials have made me strong. Angela Barron McBride once said, “Full maturity is achieved by realizing that you have choices to make”. I made choices. You’ve made choices. Hopefully we are ALL continuing to reach towards what being mature is all about! For the Christian, it is becoming more like Christ. We’ll never “get there” – but our goal should be to become more like Him day by day.

Because I’m not who I was 2 decades ago, I long to be the kind of person who believes that people who hurt me years ago are not who they were either. That sister-in-law you couldn’t stand? Twenty years may have changed her into someone you can now not only like – but love. That brother who was in and out of rehab and managed to drag the family through the disaster of three failed marriages may not be who he was. At what point do we believe the BEST of people? If God can change ME, He can change anyone. I’m not perfect… and I have not “arrived”. But I do like who I am. I wouldn’t change a thing. The process was (and IS) painful, but worth who I see in the mirror each day.

Try not to be aggravated when family members have trouble letting go of who you were. Time will tell – and if you are lucky? You may live to hear one of them say, “You aren’t who you were… you’ve changed!”

Dannape (2011, April 27). Fibromyalgia General Discussion. Message posted to “The Pain No One Sees”. Retrieved May 25, 2011, from http://www.fibromyalgia-symptoms.org/forums/Fibromyalgia_General_Discussion/The_pain_no_one_sees/

Xatego (2011, April). Yahoo Answers: People with disabilities. Message posted to “How do I deal with my family who claim they completely understand my hearing loss?” Retrieved May 25, 2011, from http://answers.yahoo.com/question/index?qid=20110424135942AA52fMB

Denise Portis

Idiot Lights

Published on May 10, 2011May 10, 2011 by hearingelmo2 Comments

Don’t you love “idiot lights”? And if you know me, you know that I pay attention to them. (Gulp. Does that make me an idiot?)

I’m one of those people who drives 64 MPH in a 65 MPH zone. I always stop on red even if it is 2 A.M. and no one is around.

Needless to say since one of our car’s “idiot lights” has been telling us for 3 months that the oil needed changed, I’ve been bugging my husband to take the car to get the oil changed. The fact that the “Jiffy Lube” sticker on the windshield ALSO said the oil should have been changed at the end of MARCH, only further compelled me to NAG. His insistence that the manufacturer’s guidelines and the lube center’s guidelines differ, does not instill a lot of confidence in me. After all… the car’s “idiot lights” told me the oil needed changed as much as that sticker on the windshield! You see? My husband is PURE GENIUS when it comes to computers. He can do a number of “handy man” things around the house thanks to having worked at Home Depot while in college. But cars? Nope. I’ll just reiterate that his stating “not needed” – failed to inspire confidence in me!

According to him, the sticker always indicated changing the oil much sooner than needed. Instead, follow the manufacturer’s guidelines. How about those “idiot lights” though?

“Everyone knows those things rarely work right. You have to get them reset after getting your oil changed AT the car dealership. I don’t ever go there for oil changes!” he replied.

Evidently (according to hubby) “LOW FUEL” actually means you can drive another 100 miles. “CHECK ENGINE” may very well be an irregularity that has to be re-set occasionally and is often reported as a problem with the model. “LOW TIRE” means you are parked at an incline and the car “thinks” it has a low tire. Sigh.

If People Had Idiot Lights

Wouldn’t it be grand if PEOPLE had idiot lights? You could meet someone for the first time and know some things without any words exchanged. You’d see a flashing:

Needs Work

Snores Loudly

Back Stabber

Yup… it would make life a little easier. We would know what to expect of a person before ever expending any emotional energy to get to know them! EXCEPT… my husband insists those idiot lights aren’t accurate. So that could mean that the little warnings we get about people we meet may be false.

The reality may be:

Works WELL

SINGS loudly

And Back SCRATCHER

If Dogs Had Idiot Lights

How about if working dogs in training had idiot lights? It might help trainers determine who would be best matched with particular dogs. It might help puppy raisers find out about the personality of the puppy they are raising to be a working dog. Perhaps a dog in training would have idiot lights such as:

Stays Calm

Very Instinctive

Easily Potty-trained

And Chloe’s may have been:

Ah… but remember? The idiot lights are not accurate. After all, trainers tell me Chloe was an incorrigible “hard-to-train” pup. But she is a hard-working, completely engaged, working adult dog. Thankfully, I can manage the occasional unfeminine “toots”.

Idiot Lights and First Impressions

Just as idiot lights for vehicles seem to be more bother than help, rarely providing accurate feedback, so too may “first impressions” fail us. People who come across as prideful, pompous, and bossy may actually be insecure. Controlling people may get on your nerves, but they often are the ones who can easily make decisions and get things done. I’m not saying this can’t go wrong. We would not see abusive relationships if it never went wrong.

What I am beginning to realize in this game of “life”, is that first impressions are often wrong. A quiet, reserved individual may actually make a warm, loyal friend if you work a little harder to get to know them. A loud and obnoxious know-it-all may actually have some insecurities and may thrive in a relationship that allows them to not have to work so hard at being perfect.

I’m all for boundaries. One of my favorite books is “Safe People: How to Find Relationships that are Good for You and Avoid Those that Aren’t” by Henry Cloud and John Townsend. However, we cannot allow our first impressions to “warn us off” people permanently. I think boundaries are set up AFTER we really get to know someone and identify they are not a “safe” friend or family member. But first impressions? Leave your brick and mortar at the door when you first begin to get to know someone. Sure, you may get some vibes that have you treading carefully as you work with a person or attend small group with a person. But how many of our relationships would we NOT have if people relied solely on first impressions? I think of the first impression others may see in my own life:

“I thought you were so stuck up when I first met you but eventually learned you could not hear in crowds”.

“Because of your BLING and service dog it was obvious you had some disability of some sort. In getting to know you, I often forget you are deaf. You are as normal as anyone else!”

“When you first asked for the main points of the meeting to be emailed to you I thought that you were basically asking for special privileges. Little did I know after receiving the “recap email” sent to the entire department that I missed a lot of important notes from the meeting too. This step helps ALL of us.”

If first impressions are a type of “idiot light”, we should remember that they are often wrong. Extend the benefit of the doubt to people who rub you the wrong way when you first meet them. In time you will discover if you had good intuition and need to erect some safe boundaries to interact with someone. However, you may learn that it was really a smoke screen that hid a wonderful person who simply had trouble letting the real “soul” show.

—————

I was so thrilled when my husband brought the car back this past week and said all the fluid levels were checked, oil changed, filters changed, and tire pressure checked. However, as I Headed to work on Thursday I happened to look down at the dash and lights. I grimaced as I saw the “CHANGE OIL” scroll across the bottom of the display. I tore my gaze back up to the road and mirrors and began to chant, “Idiot lights are inaccurate. Idiot lights are inaccurate…”

Denise Portis

A Very Windy Birthday

Published on May 1, 2011 by hearingelmo1 Comment

We celebrated my birthday early this year since no one was going to be home EXCEPT me. The timing worked out well because my college-aged daughter was home for the weekend too.

I expected my birthday to come and go without incident. I spent the day at home preparing for classes – alone, save our furry family members. However, the evening ended up being an exciting adventure in spite of the lack of presents, cake and family. April 27, 2011, was a very windy day here in Maryland. As a matter of fact it was windy and stormy across much of the eastern seaboard. In Maryland we had four tornadoes touch down according to local news and radar.

It’s nice to be living in a day of technology. All evening I received tornado warnings via text on my Blackberry, and the television had constant program interruptions with late-breaking news on area damage and warnings. I spent a great deal of time looking out my front glass door. The trees were bending and swaying. The noise was really something! I guess wind by itself doesn’t make a noise. It isn’t until it comes into contact with other things that sound is created.

I stood, at times, open-mouthed at the major wind storm in our area. I was very vigilant about checking the alerts and listening as closely as I could. On a whim, I removed the coil of my cochlear implant to get an impression of the storm WITHOUT SOUND. It is very different to rely on visual stimuli to notice important things like possible tornadoes. As I stood there “deaf” for a moment or two, I noticed something right away. My hound dog was at the BACK door while I stood at the front. Since she is hardly ever more than a room away from me… I walked to the back door where she stood trembling. I was astonished to see a fallen tree behind our home! When did that come down? I stuck my coil back on my head in order to pick up more cues about what was going on. How did I miss the sound of that tree coming down? Thankfully, it missed the townhouse. I enlisted the “muscle” of my 20-year-old son to get the tree down the hill and into the ravine the next day.

I suppose it was because my focus was on what was going on out front that I missed what was going on out BACK. Although I hear very well with my cochlear implant now, I still rely on other cues to get the “whole picture”. Because I was using my eyes and ears together, the sounds I heard were focused on what was happening out front. The sound that accompanied the toppled tree in the back had to be very loud. The trembling hound dog was evidence enough of that! Yet, I didn’t hear it.

Emergencies and Hearing Loss

I believe the key to coping with and surviving any emergency is preparedness. Below is a number of wonderful resources for people with hearing loss in the event of an emergency. These resources are terrific – but having a PLAN is still a necessary component of being prepared when emergencies occur.

1. The Michigan Deaf and Hard of Hearing People have put together a wonderful resource of how to prepare and special links. You can check it out here.

2. Jenilee Perlas put together a terrific PDF file that covers hearing loss in an emergency. Check it out here.

3. One of my favorite online resources for “anything hearing loss” with an excellent series of articles that are updated frequently (the latest being April of 2011), is Hearing Loss Web. You can access it here.

4. A great list of tips from the American Red Cross for people with hearing loss in preparing for emergencies may be accessed here.

5. A great resource from the U.S. Fire Association that provides tips in how people with hearing loss can be safe before, during and after a fire may be downloaded here.

6. A fact sheet in surviving an earthquake from the Independent Resource Center of San Francisco may be viewed here.

7. Finally, NOAA has a wonderful resource in how to access weather-related emergency information through a weather radio. You can access this information here.

Whether you live alone or with others, it is important to be prepared in the event of an emergency. Preparedness should include the chance that you will be alone even if you live with others. I experienced a very windy birthday without the company of the people I normally live with on any other given day! Do you have any other tips or resources you’d like to share? Feel free to leave them in the comment section. Information and shared resources can only help all of us as the likelihood is not IF we experience an emergency – rather WHEN.

Denise Portis