Tag: disabilities

Pressure Cookers and “The BIG REVEAL”

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pressure cooker

I can hear my grandmother’s voice saying, “Turn up the heat and see what boils out!” None of us like pressure.

None of us enjoy being stressed.

None of us “sign up for” difficult times.

Yet life is full of difficult times. It’s just the way it is. I use to get so aggravated at my mother for responding to my self-pitying tears and hiccup-sobbing announcement that “It’s not FAIR” with, “Denise… life is NOT fair“.

Life isn’t. Bad things happen to good people. Wonderful people suffer. Terrific human beings have their hearts broken.

Sucks, don’t it?

How a Pressure Cooker Works

I don’t know of very many people who own a pressure cooker. I don’t use one. I had a grandmother who used one fairly frequently, however. Why use a pressure cooker?

Pressure cookers essentially do two things.

  1. Raises the boiling point from about 212° to 250°.
  2. Raises the pressure inside the pot and forces moisture into the food.

Using the pressure cooker as a great analogy for LIFE, it helps us deal with higher temperatures, and keeps us from DRYING OUT. That’s right. When you are forced to deal with stress and pressures, you actually work out your “dealing with it” muscles and make it easier to handle the next burden. This is especially true if you are dealing with it often enough that you’ve developed good habits. New good habits include:

  1. Taking it to God and recognizing that “He’s got this”.
  2. Learning to ask for help from trusted friends.
  3. Learning to pace yourself; taking the time to rest when needed.
  4. Looking for the GOOD in a very BAD DAY.
  5. Burning your “Blame Game” after recognizing it is no one’s FAULT.

  6. Showing off your “BIG REVEAL”

That’s right. After the burner is turned down and the pressure is OFF, we lift the lid and  take our bows. The big reveal.

My former pastor from North Carolina reminded me however, that the “reveal” is often long before we lift that lid.

“The true test of character is not just seen in your actions but your reactions. We often like to excuse our inappropriate behavior by saying, “I’m sorry I was just under a lot of pressure.” But it’s the pressure that often reveals what’s on the inside and what we’re really like!” (Pastor Jake Thornhill)

While we are blowing off steam, we are also revealing to all who watch, who we really are. I have a dear friend who recently lost her young adult daughter in a car accident. As a person of faith, she knows she will see her daughter again one day. Yet, she has been very “real” in blowing off some steam. She is hurting. She misses her daughter. Her faith is strong. She’s dealing with it. However, I repeat: She is hurting. She misses her daughter. It is a poignant reminder to me that the very best people need our love, support, and prayers. Bad things DO happen to good people.

People who live with chronic illness, invisible conditions, or disabilities have good days and bad days. There will be days that you handle “your normal” in a positive, healthy way. There will also be days that you need to go back to bed and zip your lips because everything spewing out is pretty ugly. Not everyone is going to understand that. (Even some folks close to you won’t understand). Want to know some “ol’ sayings” that get on my very last nerve?

“What doesn’t kill you will make you stronger”

“Shine – don’t whine!”

“Be better, not bitter”

“When life hands you lemons, make lemonade!”

If we take these oft-used encouragements too far in our attitude towards OTHERS who are going through tough times, we miss out on one of life’s biggest blessings. One of the quickest ways to alleviate someone else’s stress and pressures are simply to let them know you are there for them. Pray for them. Hug them. Tell them, “I care about you“. If you deliberately look away when life increases the temperature under someone’s pot and assume “this is good for them”, you miss the opportunity to be used in a special way.  Throwing a chirpy little positivism at them will not help them. BEING there for them is what matters.

Love someone with significant challenges? You will learn what to SAY, and what NOT to say, to support your loved one best. Please allow me to mangle one more colloquial expression?

“A watched pot never boils”. Oh yes it does. You can stand there and watch the pressure gauge go up and Up and UP on a friend or loved one’s pressure cooker, and it’s going to boil. There is no escaping the heat. I don’t know about you, but I want to be the kind of friend who is there through the cooking process and present for the big “reveal”, for when the pressure is gone and the lid is lifted. That’s what friends do. That’s what support is.

Denise Portis

©2015 Personal hearing Loss Journal

 

 

They May Not Get It

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(Hey… I’m not an artist! But have you ever felt this way?)

One of the questions I am asked the most by folks who contact Hearing Elmo, is “Why doesn’t my family accept and understand who I am NOW?”

Before I even begin writing, let me express my hope that many of you will respond and share as I am very aware I do not have all the answers.

Why It Hurts

1. It hurts because the transition from “normal” to where you are was painful.

The school of hard knocks is – well – hard. Acquired disabilities and invisible/chronic illness are not easy to get use to when they first change a person. The journey from diagnosis to acceptance is a hard one. It hopefully has made us “better” and not “bitter”. I can attest to feeling stronger, more confident, and much more in tune with who I really am post-disability. Some of us have progressive symptoms and illnesses. We may adjust, only to have to do so again in a year or so. This too can grow us. But honey? It isn’t easy.

However, BECAUSE it was hard, it is hurtful when folks who knew us WHEN (back before our diagnosis), don’t accept or try to understand who we are NOW. We are still the same people. Our personalities have not changed. Our strengths and weaknesses are all still present – although you may have developed some new strengths because of your life path. So it is difficult when family members may sometimes be the hardest to teach how to talk to us now that we have a hearing loss. Or perhaps you are frustrated because a family reunion at a theme park is not ideal for you because you cannot ride any of the rides. Maybe you are utilizing a wheelchair, walker, or cane. A picnic and hike may not be a good way for you and your siblings to catch up – even if it has been a year since you’ve seen each other.

It’s not like we want recognition for the pain we’ve experienced. We aren’t looking for a medal. However, seeing any eye rolls or hearing frustrated sighs serve only to remind us our family

STILL

DOESN’T

GET

IT.

2. You expect your family members to care enough to accept you.

It’s not wedding vows. “In sickness and in health, for richer or for poorer…” But we have a reasonable expectation that our family members are going to love us and be there for us regardless. It doesn’t matter if we acquire a disability. We are still the same person. If Lymes disease has you aching and feverish a week out of every month, we expect compassion, not disdain. If CFS or MS has you weary, tired, and feeling as energetic as a centenarian, you expect understanding and maybe an offer to run an errand for you. If your eyesight is worsening due to various illness or disorders, you never expect frustrated outbursts when you explain you don’t have a ride to go to your nephew’s graduation.

But friends? Family members can need educating. Advocacy may begin at home. We wish it wasn’t necessary, but it may be very necessary. My kids grew up with me at best, hard-of-hearing. My husband, however, knew me before hearing loss. So I have to be willing to tell (nicely) him what works and what doesn’t. Don’t be surprised if it takes numerous lessons. Some heads are thicker than others.

What to Do

Talk to them. I’d elaborate, but honestly? You need to talk to them. Explain how you feel. Be willing to be vulnerable. Start with phrases that explain specifics and not general accusations. Example:

“When you sigh as I wobble into a shelf at the store it really hurts my feelings. I can’t help it when my world ‘twirls’. It’s hard enough to face the stares and hear the whispered remarks from strangers. I expect better from you. I expect your support.”

They May Never Get it

We can choose our friends, but we don’t choose our family. Blood is blood and it simply cannot be changed. However, you do not have to put up with people who ridicule you or try to injure you with words. You do not have to deliberately spend time with people who only make you feel worse. Sometimes? Sometimes those toxic people are family members. I hate it for you. I hate it for me. But it can be the painful truth.

Sometimes those friends that we choose? They become family. Maybe not by blood. Perhaps not by legal adoption. But folks who encourage us, lift us up, make us better people, understand, lend compassion and energy? They can become like family members. My heart’s desire is that you will find some folks like this if you haven’t already.

I welcome your thoughts on this. Knowing family members may grieve the person they once knew, or have trouble adjusting to the fact you are “differently abled” is important. Be patient. But also put healthy boundaries in place to keep unhealthy people from de-railing your progress with your own adjustments.

Denise Portis

© 2012 Personal Hearing Loss Journal

Imagine!

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Emmanuel Kelly The X Factor 2011 Auditions.

Click on above link for short performance!

I’m not a huge YouTube fan, because captions on music and video are not “perfect”. It’s better than it use to be, but it isn’t good enough that I could say I really enjoy it.

However, this past year I discovered “The X Factor”. It is now in the U.S. and the FOX network is underway on season one. I still like watching the shows in other countries as well. I came across this very special one this past week.

I was so impressed with Emmanuel Kelly’s performance. I think he and his brother’s adoption story and courage can teach so much. Bravery, courage, and “spunk” are not narrowly defined by a body that wields these attributes. Imagine what our world would be like if everyone saw with filtered eyes what Emmanuel’s mother did. Imagine what it would be like if everyone had someone in their corner during developmental years to mold and shape phenomenal human beings. Imagine if every individual with bodies that are broken, damaged, disABLED, or diseased learned to refine and use their gifts.

Learning to live with an acquired disability can be hard. There are always harsh lessons. Yet… acquired disability is not the end of life. We all have talents, skills, and gifts that are not affected by any changes you may find that define “the new me”. Sure… you may lose a few opportunities. I use to sing in choirs. (SMILE). Yet, I still choose to discover, refine, and eventually use the gifts that I DO have. You can do the same. May we all learn to look past first impressions and appearances… learning to IMAGINE.

Imagine there’s no Heaven
It’s easy if you try
No hell below us
Above us only sky
Imagine all the people
Living for today

Imagine there’s no countries
It isn’t hard to do
Nothing to kill or die for
And no religion too
Imagine all the people
Living life in peace

You may say that I’m a dreamer
But I’m not the only one
I hope someday you’ll join us
And the world will be as one

Imagine no possessions
I wonder if you can
No need for greed or hunger
A brotherhood of man
Imagine all the people
Sharing all the world

You may say that I’m a dreamer
But I’m not the only one
I hope someday you’ll join us
And the world will live as one

Denise Portis

© 2011 Personal Hearing Loss Journal

“It’s Just Lack of Sleep…”

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When I was in college I adopted horrendous study habits that included “all nighters” and cramming. I also began to nap. I needed them. Between work study at the campus library and going to school full-time, naps were a coveted, hard-earned prize. I felt better after a nap. I could think better, got along better with my roommates, and could better survive the next long night of studying.

My children are 11 months a part. (No… it was not planned that way!) I did various “odd jobs” throughout their childhood so that I could stay home with them when they were babies, toddlers, and pre-schoolers. Thankfully, this meant I could nap at the same time they did. Let me tell you nap time may have been a thing of dread for a precocious three-year-old, but they were a luxury I enjoyed! I used a baby monitor even after my kids were not babies so that I could sleep with my good ear on it in order to make sure they stayed in their beds for their naps.

Darn it. My kids grew up and my part-time jobs began insuring I would no longer have a nap. I miss them still. I may not get a nap anymore, but I do make it a priority to get a good night’s rest. There is no magic number for hours of sleep necessary for an adult to function optimally. According to the National Sleep Foundation, sleep needs are individual; however, experts agree that healthy adults need 7 to 8 hours every night without risking accumulation of sleep debt (National Sleep Foundation, 2010). You may be slack-jawed having just read that. What adult consistently gets 7-8 hours of sleep every night? Few do.

According to the 2008 Morbidity and Mortality Report, 29% of all American adults report sleeping less than seven hours a night habitually. The report clearly stated that, “The importance of chronic sleep insufficiency is under-recognized as a public health problem, despite being associated with numerous physical and mental health problems, injury, loss of productivity, and mortality” (MMWR, 2008, p. 1175). So if we know we need more sleep, but don’t make it a priority… what is really at risk? Actually… a lot. Depression, heart disease, injury at work or when driving, and risk of DEATH may result from habitually losing sleep.

Factor in Invisible Illness or Disability

Let’s say you have an invisible illness or disability. You may argue (albeit weakly) that you get as much rest as other adults you know. I heard a mother with severe hearing loss complain of rarely getting a good night’s rest, “… in spite of being completely deaf at night without the hearing aids. It’s a matter of getting to bed and going to sleep. So much to do!” You may not realize that if you are operating with an invisible illness or disability you actually need more sleep. Don’t take my word for it. Lack of sleep may seriously impact the quality of life of a person with hearing loss (Preminger & Meeks, 2010). I have met people with Fibromyalgia, Chronic Fatigue Syndrome, MS, brain injury, PTSD, hearing loss, balance disorders, and paralysis who have all shared that they do not get as much sleep as they really need to live their best life.

For some, it may be that they are trying but chronic pain or discomfort may limit how much sleep they are able to get each night. For MANY, however, they simply do not take into account that they need more sleep than the average adult. Why do we make excuses for not making sleep a priority? If a doctor told you that you will feel better and perform better if you could make it a priority to get 2 to 3 more hours of sleep each night, would you do it? “Doctor’s orders”? If research and word-of-mouth testimonies give two thumbs up to getting more sleep, why do we ignore this?

I get 8 hours of sleep every single night – and sometimes I get nine! I’m no saint, but honey? Let me tell you I am ALL DEVIL if I do not get enough rest. It is beyond being grouchy too. I’m more insecure because I don’t hear as well. I fall more and sport pretty, but painful bruises. I don’t make time to exercise if I’m tired. My heart needs to exercise. I have a propensity towards depression when I don’t get regular aerobic exercise. My tinnitus is worse. I say “HUH?” more. (Honestly, I do!) Those who know me well… know how poorly I function when I do not get enough sleep. I lack the finesse of it being a cumulative effect too. Instead it shows up immediately. One of the most unselfish, “good for me” things that I do for myself is make 8 hours of sleep a night a priority. It’s a MUST in my daily schedule.

How about you? Do you get enough sleep? I have never met anyone that couldn’t re-arrange LIFE in order to prioritize sleep if they really chose to do so. It is a little embarassing the things we cut out of our life in order to make a good night’s rest a priority. You may cut out things like less time on FaceBook, or surfing the net, or channel surfing on television. If you live with an invisible illness or disability, how about trying a little test. For one month, really strive to get at least 8 hours of sleep each night. Journal about how you feel and about the steps you took in order to make sleep a priority. Ask others if they notice any changes in behavior, over all mood, and performance. You just may be surprised how important sleep is to even YOU.

Do you know you need more sleep but simply cannot find those hours? Talk to your doctor about whether or not you have a comorbid sleep disorder in conjunction with your illness/disability diagnosis. It is not uncommon to have difficulties going to sleep and STAYING asleep when you struggle with other issues.

I’m interested in your feedback! Have you found getting more (or less) sleep impacts your disability?

Denise Portis

© 2011 Personal Hearing Loss Journal

————–

Are sleepy workers a threat to safety, productivity?. (2009). Occupational Health Management, 19(2), 20-21. Retrieved from EBSCOhost.

National Sleep Foundation (2010). How much sleep do we really need? Retrieved August 22, 2011, from http://www.sleepfoundation.org/article/how-sleep-works/how-much-sleep-do-we-really-need

Perceived insufficient rest or sleep among adults — United States, 2008. (2009). MMWR: Morbidity & Mortality Weekly Report, 58(42), 1175-1179. Retrieved from EBSCOhost.

Preminger, J., & Meeks, S. (2010). The influence of mood on the perception of hearing-loss related quality of life in people with hearing loss and their significant others. International Journal of Audiology, 49(4), 263-271. doi:10.3109/14992020903311396

Insecure Foundation?

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Kyersten and Chloe at the "Candle Barn" in Bird-in-Hand, PA

Spring Break! My entire family was on “Spring Break” last week with the exception of ME. As this was Kyersten’s last Spring at home for awhile she was determined to do something “fun” everyday. Friday, she and her daddy had planned to go to Lancaster County. Since I DID have Friday off, I invited myself along.

Two of our favorite places to go in Lancaster County are Bird-in-Hand, PA and Intercourse, PA. (At the latter, my daughter always tries to talk me into a t-shirt that says, “I love INTERCOURSE!” Let me think for a moment. Umm. NO!!)

We enjoy walking around the shops, and my husband was thrilled because on Fridays the Farmer’s market is open as well! Next to and ABOVE the area where the main Farmer’s market is located, are some neat local shops and antiques. Chloe and I found a rickety, old staircase to the top floor and carefully made our way UP.

When we made it to the top, I noticed that Chloe was lagging (walking behind what is a proper heel) which is something she just NEVER does. Her problem is “forging ahead” on a normal day! So I looked back to remind her to heel and noticed something. Her legs were shaking so badly, I could see the hair on her legs and stomach trembling. (What in the world?) Something had her spooked, but I couldn’t tell what it was. I patted her on the head, and asked her to heel again. As soon as I took a step I knew what had her rattled. (Now that I was paying attention… that helps! GRIN) The old, creaky, wooden floors had a lot of “give” and groaned and moved under our weight. I’m sure she could hear it AND feel it! I thought for a second and then decided to stand next to her and shuffle around, tap dance and “hop” standing next to her. At first she dropped like she’d been shot and lay trembling on the ground. I kept talking to her softly and continued to erm… ACT LIKE AN IDIOT. I’m sure anyone downstairs probably thought the world was coming to an end! Five minutes and 150 calories later, Chloe sat up and watched me with a tentative tail flop. Ten minutes more, with a more normal volume and another 150 calories burned, I found her standing next to me with tail wagging like crazy – simply thrilled that  I was inviting her to dance.

Chloe was afraid. The foundation beneath her had to much “give” and groaned and complained at our movement and weight. She wanted to STAY PUT. It took a more confident friend to convince her that all was OK.

Feeling Insecure?

At some point you are going to be either the trembling pup, hugging the floor with nails dug in and eyes wide as saucers, or you will the confident friend who gently persuades you to “get on livin’ it”.

I can’t think of a time when I felt more unnerved than when I felt as if my very foundation was wobbly. You count on your foundation to “HOLD”. It is from a solid foundation that one can build and grow. What do you do when your very foundation is creaking and groaning? How do you “shore up”?

I’ve not made it a secret that I am a person of faith. I believe that God created everything and remains very “HANDS ON” with His creation. I believe that we BLEW IT. Because we are all sinners and in need of a Savior, God sent His one and only Son. Jesus died for you whether you wanted Him to or not! Salvation only comes through believing and accepting that free gift. Any other foundation is going to fail you.

People screw up. They are going to disappoint you.

Careers are temporary. Someone younger, smarter, better looking, and who will work for LESS is going to come along.

Community service is great! Volunteering and making a difference in the life of someone else proves you are someone who LIVES what they BELIEVE. But you aren’t going to be recognized each and every time. “Man” or “Woman of the Year” is only a plaque that gathers dust.

You may be healthy. Yet that can all change in a day. Disabilities, disease, and suffering are something all of us will experience is one form or another.

Life can be very hard. Life can also be very… VERY good. But what happens to YOU when life is hard? What does your foundation feel like? Will it hold?

When I am FLAT ON THE FLOOR terrified to continue, I often turn to prayer and scripture reading. Sometimes God sends along a friend who will tap dance, hop and gently persuade me that all will be OK. Perhaps they’ve lived the same thing and came out … better.

You know? Chloe left that upstairs shop a different assistance dog. She was confident about that next step we were going to take. (Denise danced and hopped and didn’t fall through the floor!) We made our way back to the Farmer’s market to find something yummy to eat. I’d burned 300 calories ya know…

Scared to go on? Perhaps you need to rest awhile. Rejuvenate. Maybe you need to do some introspective reflection. Does your foundation need some repair?

Found someone hugging the floor? Don’t preach at them. Don’t ignore them either. Pray for them. Let them know you are there. Share your story. Tap dance.

After all, the Amish are outstanding carpenters. That floor is going to hold.

Denise Portis

© 2010 Personal Hearing Loss Journal

Little Bit of Heaven

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Chloe and I were at Wal-mart this morning. Actually we are at Wal-mart every Tuesday morning. We are as predictable as a sunrise. About a year ago someone told me that Tuesday morning was the time to go to Wal-mart because you never had to wait in line. Since I found out that person knew what they were talking about, that is when I go each week. I had stopped going actually, because the lines, crowd and NOISE were just unbearable no matter how much money I saved. As it turns out, Tuesday morning is the time to go to Wally World! Now I save the family money in our grocery/necessities each week by going again.

Chloe does not mind going because there is stuff to pick up all over the place! She loves helping. Her tail wags the entire time we are there. As I parked, I noticed out front one of those small buses that many retirement centers use. I took note of the large crowd of seniors throughout Wal-mart. In the laundry section, I came upon a couple who looked to be about 70 or so. The lady was in a wheelchair. She made “kissy noises” towards Chloe. Well to a dog, that “kissy noise” means come over here… in any language evidently. Chloe couldn’t resist and I didn’t correct her.

I was a little nervous because the lady was very frail, and Chloe moved in closer to rest her front paws on the side of the chair. The lady put her arms around her and talked to her. Her hands were bent with arthritis, yet she stroked Chloe so softly. She started crying, which made Chloe clean her face of course. I apologized and asked her if she wanted me to move Chloe.

She said, “Ah no! This is my little bit of Heaven today!” So Chloe gave her kisses and the lady just cried and talked to her for about 5 minutes. I looked up to see what the reaction of doting hubby was, and he had big tears in his eyes too. He said, “We had an Irish setter for years. Your dog’s color is very similar.” Chloe went over to let him get in on the lovin’, and that is when he noticed what her vest said.

“Oh my! Honey? Look, we aren’t suppose to be petting her!”

I replied, “Hey! You absolutely made her day. I don’t care if you pet her”. How could I deny a little bit of heaven after all?

Little Effort – Big Gain… for Someone

You know something that took maybe ten minutes of my time, really ended up making someone’s day. Sometimes I hear about a need through my church, or the “grapevine” via Facebook, email, or my blog. I may not be able to meet that need specifically, but usually I can always do something!

Yesterday a gal who use to go to my church posted something on her Facebook. She lives in South Carolina now with her husband, but she is pretty active on her Facebook so we can all keep in touch. She was telling us how she and her husband saw a homeless man and were prompted to help him. They went to a Sam’s and bought some food and bottled water and brought it back for him. She said, “I wish we could have done more!”

Yet we have no idea what “little bit” may mean in the life of someone. In that moment in time, that “little bit” may have been “a bit of Heaven”. Who knows what seeds of kindness planted in the life of a homeless man may mean in the days and weeks to come? Some people are pretty cynical about the homeless. I have been myself on occasion. Sometimes you may not be ABLE to help. But isn’t it funny how when we are prompted to “do something”, it is usually when we are able to do something to help?

My daughter was telling me over Google Talk today about a friend she took to Taco Bell. Her friend needed some “Kyersten time” and Taco Bell is cheap so works out well for college students trying to do “a little bit”. It was a small thing… didn’t take long… yet friendships can blossom and grow even from the dubious amount of nutrition in a bean burrito with extra sauce.

Even YOU can…

Sometimes people with disabilities get it into their heads that they aren’t “able” at all. That’s a load of hogwash actually. I’ve never seen a load of hogwash, but I’m reasonably certain it looks just like that excuse that people with disabilities aren’t “able”! I know so many people with disabilities who happen to be VERY able. They volunteer in their communities, they reach out to others, they make a difference!

Sometimes people use the excuse that they are financially strapped so can’t “make that difference”. You do not have to have a lot of money to be that “little bit” for someone else. It could be an email, card, letter or phone call to just let someone know you care! During our big snow storms these past two weeks, it has been very heart warming to see neighbors who rarely talk out helping each other clear driveways and sidewalks. I like to think it had very little to do with a huge underground effort to get the kids back in school. People were TALKING. Smiling! BONDING… over huge piles of snow!

Wouldn’t the world be a nicer place if all of us tried to be that “little bit” to someone at least once a day? Don’t neglect being that “little bit” for those closest to you as well! Why leave them out? I’d rather be used as a “little bit of heaven” in someone’s life than to be the alternative. Wouldn’t you?

Matthew 25: 35-40

For I was hungry and you gave me food, I was thirsty and you gave me drink, I was a stranger and you welcomed me, 36 I was naked and you clothed me, I was sick and you visited me,I was in prison and you came to me.’ 37 Then the righteous will answer him, saying, ‘Lord, when did we see you hungry and feed you, or thirsty and give you drink? 38 And when did we see you a stranger and welcome you, or naked and clothe you? 39 And when did we see you sick or in prison and visit you?’ 40 And the King will answer them, ‘Truly, I say to you, as you did it to one of the least of these my brothers, you did it to me.’

Denise Portis

©2010 Personal Hearing Loss Journal

Found a picture of hogwash! So now…

Now we ALL know!

Red Flag

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I have little “red flags” in my life… or warning bells if you like! Really, we all need to have them, for they are excellent opportunities for reflection, brain-storming, and goal-setting.

Well a little “red flag” waved like mad right in my line of vision this week. When I stopped to heed my little “self-warning”, I was even able to trace it back to when it started. You see, I was developing a bad attitude! Not a bad attitude about any one person in particular, but towards a group of people. A bias, really! It all started when I went shopping at Wal-mart last Tuesday.

Oh Bruuuuther!

Chloe has a ball in Wal-mart. This is a good thing, for her enthusiasm is contagious and – frankly? Wal-mart is not one of my favorite places to go, so I can use a little infectious enthusiasm about the money-saving, weekly task! You see? There are a LOT of things to pick up off the floor at Wal-mart.

Chloe does an “automatic retrieve”. Granted, sometimes this is a real pain! For example, when you are in a store that is notorious for having things all over the floor, Chloe is stopping every few feet to hand me something! An automatic retrieve is when Chloe sees something that I’ve dropped, she automatically and immediately fetches it and brings it to me. She also does directed retrieves, which means she will fetch things I point at, or identify with words she recognizes. Having Meniere’s disease insures there are days that having to reach all the way to the floor, means I’ll also be sprawled out IN IT. Chloe keeps that from happening. If items are just laying around, Chloe really shouldn’t go and pick it up as it wasn’t something I dropped (automatic retrieve), nor is it something I’ve asked her to do (directed retrieve). However, coupons and bits of plastic have a tendency to “be stirred up, move, and re-land” as a shopping cart goes by. Since Wal-mart has shopping carts… everywhere… Chloe thinks every new thing that lands in front of her is something I need. For awhile I was telling her “phoeey” or “drop it”. This hurt her feelings. (She’s very sensitive). I didn’t want to break her solid retrieve commands, so I play along as she gets such a kick out of it and as it is such good practice.

Last Tuesday we were in the baking section of Wal-mart and I was looking for pancake mixes. A man and woman walked by me from behind. The man said “Oh bruuuuther!” very loudly as he walked by me. I looked up to see what he was talking about, just in time to see him tap his wife’s arm and point to Chloe and again explain, “Oh bruuuuther! Can you believe it? What will they think of next?” The MEANNESS pouring off of him completely shut my mouth. (Rare thing, THAT, believe me!)

I’m pretty sure my mouth dropped open. The sarcasm and disdain in his voice were very apparent. My mind raced with what I wanted to say, and how I wanted to explain that for ME, Chloe’s partnership was invaluable. I stood there trying to think of what to say, and how to say it… yet I was angry and hurt. He rolled his eyes and again looked at his wife. She said what I WANTED too… “Just shut-up Chuck!”

The entire experience probably took 2-3 minutes of my time. Yet I stood there, rooted to the spot, for at least twice that long.

One Bozo ≠ Everyone Else

I’m not sure why I pondered and perseverated on that as long as I did. Have you ever had something happen before where you spent a great deal of time thinking about what you WISH you would have said or done? Little by little, I could feel my attitude changing.

I have a red flag that I’ve set up in my mind to identify when I get an “us” versus “them” mentality. The “us” is any individual, including myself, who lives with a disability of any kind. The “them” are people who do not have a disability. When I start thinking or saying things like the following… I know I need to stop. That red flag will be

waving

like

crazy:

1. Well, you couldn’t understand because you have normal hearing.

2. You don’t know how I feel… you can’t! You don’t fall all day long and run into things!

3. You are a HEARING person. (Like that is a cut-down of some kind!)

4. If you could live one day in my shoes…

Those kind of thought processes tend to foster one major PITY PARTY. I can feel myself start to feel resentful. It can get ugly pretty quickly left unchecked. In this case… I let one BOZO represent everyone else I know. Truthfully, those with extreme prejudices are the exception, not the rule.

Battling a Negative Pattern of Thinking

So other than seeing that red flag, and recognizing my faulty thinking… what can I do? Very likely every person has a way to battle negative thinking that works for THEM. For me, I may do any of the following:

1. Count my blessings with deliberation and certainty.

2. Remind myself why ALL biases are wrong.

3. Make a list of all the people in my life who “get it” and do not have disabilities.

4. Hug and groom my dog, Chloe.

5. Listen to positive, up-beat music.

6. Do something for someone else for no particular reason.

7. If it would be constructive, confront an offender with grace, respect and firmness.

Red Flags are Good Things!

Do you have red flags in your life? These are necessary self-warnings that all of us should have! What are some red flags that you have and pay attention to in your life? Some of my own:

1. Spiritually: Does my walk TALK, louder than my talk, talks? Am I daily checking in with God through prayer and reading my Bible? Do I seek to be a blessing to others? Does that start at HOME?

2. Physically: Have a walked at least 4 days this week? Am I watching what I eat? Am I taking my blood pressure medication each day?

3. Emotionally: What have I done for ME this week to just relax and unwind? Do I need an attitude adjustment? Am I living in peace or allowing anxiety to wreck havoc?

4. Mentally: Am I growing? What am I learning in school? Am I giving my best to my team and individual assignments? Are these things helping me reach my goals?

Denise Portis

© 2010 Personal Hearing Loss Journal


Disappointed and it’s ALL MY FAULT

Published on by hearingelmo2 Comments
This is one of my all time favorite paintings by Ron DiCianni
This is one of my all time favorite paintings by Ron DiCianni

Last night our church had a special prayer meeting. I’m always “in” for prayer meetings! I wish we could have them more often than we do. I’ve been a big fan of prayer since about 1993. That was the year I began losing my hearing. Nothing like slowly losing the ability to communicate well with other people, to drive you to your knees to learn to communicate with God. I suppose in many ways, prayer is one of the reasons I do not regret being late-deafened. I’d never want to go back and undo all that I’ve learned about prayer.

My Own Fault

I’ve learned plenty about prayer, but I must not have learned much about asking for assistance in advance! You would think I would learn to ask for help in the right way, and in time to allow folks in charge to be able to assist me! I mean? How hard is it to shoot an email to the pastor to remind him that I’ll need everyone to use the microphone if they speak from the floor?

There were around 20 people there last night. Small groups are something I look forward too. As soon as the pastor saw me he made eye contact and let me know he was going to use the microphone. Whenever possible, he asked folks to come up to the microphone. When he asked questions that required “popcorn answers”, he repeated what they said into the microphone as it would not reach to the back of the group. Sometimes, however, a person answered much longer than what may have been anticipated. The pastor was forced to “interpret” and condense what they said. At certain points, he could tell someone was going to speak longer, or perhaps someone volunteered to pray for a specific need. He asked them to come up to the microphone. (whew). Had I let him know in advance I was going to be there, I’m sure they would have had a cordless microphone ready!

As a person with hearing loss, it is YOUR responsibility to make sure that the people at a meeting you are going to attend know in advance that you will need some assistance in order to hear well. People with normal hearing in a group of twenty very likely do not need a microphone at all. As a matter of fact, I don’t think our pastor had planned in advance to use one because he had to “borrow” one off the musician at the keyboard!

I love my cochlear implant! LOVE IT! It doesn’t make me a person with normal hearing, however! So when I know I’m going to attend something in which I may have trouble hearing, it is my responsibility to give someone in charge a “heads up” that I’ll be there.

Sometimes you may need to attend something in which there is no easy way to offer assistance so that you hear better. (Birthday parties, baby showers, picnics, etc.) We as late-deafened people still have a responsibility to have the right attitude about the activity. Let’s face it! There will be times you simply will not hear well. It’s not anyone’s FAULT… it’s just a fact of life for a late-deafened person. Your responding in a gracious way is the right way to go. Learn to ask people to repeat things the right way. Perhaps that means repeating for them what you DID hear, so that they only have to repeat what you did NOT. It may mean asking to step over to the side so that you are not quite so much in the middle of a lot of noise. It may mean that you are willing to bring a neck loop and/or assistive listening device. Relax, and learn to have fun even if you are not able to hear everything. Chances are the people you are with really care about you. They cannot ever fully understand what you live. Don’t punish them for that!

After prayer meeting last night, I was crying before I could even get out the door. And let me tell you Chloe was having to jog to keep up! I was just so ticked off at myself for having poorly planned, and so disappointed about not hearing very well… I hate crying in public, but gee was I mad at myself! I know better! I’ll do better! GRIN

How to Handle It?

So? What does a late-deafened person do when you’ve alerted a group that can assist in ways such as a cordless microphone being ready, and the group “forgets” or overlooks your need?

A. Continue to remind them, but don’t mention how you weren’t able to participate this time.

B. Express sincere regret at not being able to fully participate and ask if there is anything you can do to make sure assistance is available next time.

C. Knock some heads together.

D. Whine and complain and never return.

E. Pout and embarass anyone in charge with a loud verbal rebuke after the meeting.

Hmm. You know? There may be more than one right answer here and it may depend on your own personality. (Answers C, D, and E are really not great choices folks!) The key is to remember that what you say and how you react may affect how another person with hearing loss is assisted by this group in the future! Lay the groundwork for good relations! Another person with hearing loss may reap the benefits of you having handled things the right way!

Denise Portis

© 2009 Hearing Loss Journal

Camera Shy

Published on by hearingelmo2 Comments


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

In Heaven’s Eyes

Published on by hearingelmo3 Comments

deafness-profile-004

What do we look like in Heaven’s eyes?

Many years ago, back in the days I could “hear” and before Sandi Patti’s “fall from grace”, I use to listen to her sing, “In Heaven’s Eyes”.

———————-

SIDE NOTE:  Exactly what IS a “fall from grace”?  One can’t FALL FROM GRACE! (said… with a bit of a screech in my voice).  She only “fell” from a legalistic pedestal erected by bozos who think THEY have never done anything in need of “grace”.  She is as human as the rest of us… living life, making mistakes, saved by GRACE!

———————-

I have “lively” conversations with a culturally Deaf lady from time to time.  “Lively”, because we really do burn calories in signing our own point of view about a topic.  We have “good arguments”.  The kind of arguments that I hope she thinks about (and blogs about?) as much as I do when we go our separate ways.

We ended up talking about deafness as we often do.  She tries very hard not to hold it against me that I chose to get a cochlear implant.  She succeeds in her attempts… MOST of the time.  However, at times it just gets the best of her and we “argue in a good-natured” way.  She is a very self-assured woman who was born Deaf and has lived her entire life deeply involved in the Deaf culture here in our country.  She worries that so many children born Deaf as she was, are being implanted with cochlear implants.  I think she worries about the future of the Deaf.  Her biggest pet peeve is for someone to behave as if she can’t THINK as a result of her not being able to hear.  She doesn’t feel broken.  She doesn’t feel disabled.  She feels very normal.

I know she is a believer and so teased, “Well what are you going to do when you get to Heaven?”

“Not Deaf in Heaven’s eyes,” she replied in sign.  “Not hearing (pointing to me) in Heaven’s eyes.  Same (as she indicated both of us).

I instantly remembered the title of the song by this title, written by Phill McHugh, and sung by Sandi Patti.  I asked her if she’d ever seen the words to the song before.  (You don’t ask a Deaf person if they’ve HEARD a song before – smile).  She had not.

I got us “back on track” in our conversation, and explained that she misunderstood what I meant.  I explained how there will be no deafness, blindness or other disabilities in Heaven.  I perhaps got a little carried away as I often do, in talking about Heaven… it took me a full minute to realize her face was unhappy.

She explained that she knows and has read that there is no sickness in Heaven.  She has heard pastors teach that “the deaf will hear, the blind will see, the lame will walk”. Everyone will have a perfect body in Heaven.

No pain.

No tears, nor sorrow.

No sickness.

No calories.

GLORY! (smile)

I realized that, as she has no problem being Deaf and does not consider her deafness a disability, “whats to fix” when she gets to Heaven?  She even tearfully told me that if she has to “hear in Heaven”, she’s not sure she wants to go.

Woah.

Perhaps that is why when someone develops a disability later in life, their perspective is different.  I’ll probably get some “mail” for saying this, but…

If you’ve never heard before, how can you say you don’t miss sound?

My own study of history and the Bible, convinces me to stand firm in my thinking that in the garden of Eden, Adam and Eve could hear perfectly.  I think every part of their bodies worked perfectly.  We were created with ears, the inner parts of which all work together in a wonderful way, allowing us to hear.  It wasn’t until that bite of fruit and disobedience that deafness worked it’s way into our genes. Along with other disabilities, cholesterol, diabetes, birth defects, and

Weight Watchers.

You know you have a real friend, when you can “agree to disagree” and go on from there. It brings me great joy to hear my own young adult children talk about friends they have that don’t believe EXACTLY the way they do. Even better? Rest in the friendship of one who challenges you to discover what you really believe. Hmm.  I’ll save this for another post!

I could tell with startling clarity, my friend and I were at an impasse. Sometimes it’s better to “zip your lips” if you know nothing more can be said in a constructive way.  I guess in this case, I “sat on my hands” versus “zipping”.

Treasuring our friendship, I decided to back up and share the words of that song with her.  She loved the message as well.  This past month, I found out that my Deaf friend is gone.  I only saw her at her place of work, and she lost her job. I need to put on my detective hat and find out where she is now, and see about meeting her for coffee.

I’ll leave “you” with the words to this song as well.  I love it, for it reminds me that Heaven really does view us all the same.  How we look, what we do, where we were born, nor how well our bodies “work”, matters in Heaven’s thinking.  We all need a Savior.

A fervent prayer rose up to heaven,
A fragile soul was losing ground
Sorting through the earthly babble,
Heaven heard the sound.

It was a life of no distinction,
No successes, only tries.
Yet gazing down on this unlovely one,
There was love in Heaven’s Eyes.

The orphaned child, the wayward father,
The homeless traveler in the rain
When life goes by and no one bothers,
Heaven feels the pain.

Looking down, God sees each heartache,
Knows each sorrow, hears each cry,
And looking up, we’ll see compassion’s fire
Ablaze in Heaven’s Eyes.

Refrain:

In Heaven’s Eyes, there are no losers,
In Heaven’s Eyes, no hopeless cause.
Only people like you, with feelings like me
And we’re amazed by the grace we can find
In Heaven’s Eyes.

Denise Portis

© 2008 Hearing Loss Journal