Tag: service dogs

Get Their Attention

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I recently attended the annual national convention of the Hearing Loss Association of America because it was actually held in my area this year. At one point, I was in the crowded convention hall perusing the numerous hearing loss vendors and booths. At a distance, I saw an old acquaintance scoot by in their scooter. I tried to wave them down but I was not in their peripheral so they did not see me. After they quickly rolled out of my sight, it hit me! I could have raised my voice and said, “Hey Bob!” This friend did not have a hearing loss, but attended these conventions alongside of his wife who WAS deaf and hearing again with two cochlear implants. I had to smile at my mistake, because I forget that people with normal hearing do not have to have a visual cue in order to get their attention. (Thankfully we ran into each other later…)

I see this all the time in my kids. Kyersten and Chris (now 21 and 20-years-old) attend college but live at home. They really have no memories of my not having a hearing loss. Even though I had a progressive loss, it took twelve years before my hearing was completely gone. They have both told me that they don’t remember my ever hearing well. They are so accustomed to speaking with someone who has a hearing loss, they automatically do things that are more difficult for someone who isn’t in constant contact with someone who is deaf. They always come into the same room that I am in, and rarely try to have a conversation from another room with ANY family member… even those with normal hearing. Recently my son came all the way into the family room to ask my husband a question. It was a simple question that could have easily been asked from the kitchen. The television wasn’t on, and the area was fairly quiet. However, he is so accustomed to facing the person he is talking to, it is difficult to remember that he can do some communicating from another room when it comes to his dad. My daughter is often told that even as shy as she is, she has “uncanny eye contact” when communicating with someone.

Teaching Them Early

When my kids were about 2-3 years old, they were already “old hats” at communicating with a person who had hearing loss. They cannot remember watching television without captions. Even “Barney, the Dinosaur” had captions, as did “Sesame Street” and “Thomas the Tank Engine”. I believe it helped them learn to read as early as they did!

If I needed to tell my kids something, I would walk over to them and get down on their level. I would put my hands on each side of their face and say, “I’ve got my GUESS WHAT FACE ON!” I’d then (almost nose to nose) tell them what I wanted to tell them, or simply say “I love you”.

If they came to talk to me, I could hear that they were talking, but not understand what they were saying. So I’d lean down and put my palms on each side of their face and ask, “Wow! Do you have your GUESS WHAT FACE ON?” It didn’t take long for them to begin putting their own palms on the sides of my face when talking to me.  As they grew older, we dropped putting our hands on the face of the other, but they would come and tell me with direct eye contact…  “Mom, I’ve got my GUESS WHAT FACE ON…” and then tell me what they were going to say.

By the time my kids were 5 and 6-years-old, it had become habit. I was eventually able to afford a refurbished hearing aid that gave me some help in hearing for several years. I recall my daughter (from the next room) telling my son, “Wait a minute. Let me put my GUESS WHAT FACE ON and ask Mom!” As they continued to age and mature, what “stuck” was direct eye contact and face-to-face conversations. It was actually a wonderful gift to help nurture in them, for all of us do very well to give the other person the attention they need and deserve when communicating. No competing with electronic games, closed captioning on television, or computers when we talk. We put everything down and LOOK at the other person.

How to Get a Deaf Person’s Attention

Here are some great tips in how to get the attention of a person with hearing loss.

1. Wave your hand in their line of sight.

2. Touch their shoulder or hand before speaking.

3. Move into their line of sight with your body to gain their attention.

4. Turn the lights off and on (this is especially helpful in a room that may have more than one person with hearing loss and you need EVERY person’s attention).

5. If sitting at a table with the person, gently knock on the top to get their attention through vibrations.

Can you think of any others? I welcome your input!

How Service Dogs Get Attention

Hearing assistance dogs are taught to get their partner’s attention by gently bumping them with their nose or touching them with a paw. As I have a balance disorder, Chloe tries to garner my attention by standing and staring and WAGGING LIKE MAD. She only places a paw on me or bumps me with her nose if her 1st efforts have failed. Smaller assistance dogs, may get their partner’s attention by actually jumping up on them.

Even though hearing assistance dogs are trained how to get the attention of their partner to alert them to sounds, the human partner has to be responsible as well. Shortly after being matched with Chloe my trainer, Pat, took me to many different types of public places to train ME. Chloe was already trained. She drilled into me, two important things:

1. WATCH YOUR DOG

2. TRUST YOUR DOG

I quickly learned to pay attention to what has Chloe’s attention. Her hearing is not only much keener than my own, it is more sensitive than people with normal hearing. I can now even recognize when she hears something if she is standing in front of me (with my only seeing the back of her head). Chloe has a modified “heel”. “Heel” position is when the dog’s shoulders are parallel to their partner’s left leg. However, I do not have peripheral vision on my lower left. So we taught Chloe a modified “heel” that is slightly forward of a true “heel”. I had to learn how to observe the BACK of her head. Thankfully she has these wonderful hound ears that perk up and she “points with her nose” in the direction from which a sound is coming. She will even cock her head to the side to really tune in.

Look the neighbor came out...
Look at that family over there...
something is in the bushes...

If the sound is something she thinks I should hear, she’ll come and get me – phone ringing, door bell, someone calling my name, kitchen timer, etc. These are all trained alerts. However, I have been in situations where I could tell a sound had completely distracted her yet I could not hear or place what it was. When this happens, I ask “Chloe… what is it? Show me!”

Chloe will start to wag and TAKE me to what is making the sound. I have to be careful about this. I don’t want her to take me to every single sound she hears. She may hear the kid’s arguing and cock her head as she listens. I do NOT want her to take me to where they are arguing because they are old enough to work out their own problems! She seems to understand when it is a sound that I need to pay attention to – such as a cat locked in the laundry room, the low-battery sound on the phone in the bottom of my purse, or “Daddy” hollering from the bathroom because there isn’t any toilet paper!

A Word of Caution

I believe that individual’s with hearing loss should get the attention of every person they wish to speak to – even if that person has normal hearing. Do you know how many conversations I have interrupted because I walked up to someone and started talking without hearing that they were talking to someone else? I try to make it a habit (and still sometimes fail) to make sure I have the attention of someone before I begin speaking. This eliminates the likelihood of my talking over someone already talking.

I suspect all of us can improve our communication skills. If you have someone in your life who has a hearing loss, I encourage you to sit them down and ask them in what ways you may better communicate with them. If you have a hearing loss (whether a veteran of deafness or a “rookie” – new to coping with hearing loss), try to sit folks down and have a “heart to heart” about ways they might better communicate with you. This may include family members, co-workers, or even supervisors. Don’t think, however, that once you share with them how to better communicate with you that they will always do “right” from that point forward. I have learned that the people in my life need occasional (positive) reminders.

“Could you put your hand down please? You are covering your mouth”.

“Do you mind looking my direction when you speak?”

“Could you get my attention before you begin speaking? I’m afraid I missed all that you said prior to my looking up and seeing you standing there!”

Stay positive. Few people will put any genuine effort into communicating with you if you belly-ache and whine about it. If you get angry, it may cause resentment and defensiveness. Keep your cool! Smile… be positive! In the end, you are actually helping them better communicate with ALL!

Denise Portis

© 2011 Personal Hearing Loss Journal

“Family”

Published on by hearingelmo3 Comments

Approximately 1 in every 8 Americans experience some degree of hearing loss (Binder, 2011). This is approximately 36 million people – just in the United States. While to some, this number may seem overwhelming or unfortunate. For me? I have to admit to a small “thrill” – for you see… I’m a part of this “family”. I am one of those “1 in 8”.

What is “family”? The obvious definition includes those to whom you are related. I’m very grateful for my immediate family, for in many ways they fall into the “family” of which I am writing today as well. For the purpose of this post, “family” consists of individuals who understand by direct or indirect experience, a life that may be different as the result of disability – whether it be congenital or adventitious.

Hearing Loss Association of America

I recently had a couple of wonderful weekends that helped solidify this feeling of “family” for me. The first was when I went to one day of the 4 day national convention for the Hearing Loss Association of America. This year it was in my area, so I could not pass up trying to go at least one day. I was able to attend a number of workshops, all of which had CART. The rooms had terrific amplification, so I was able to hear the speakers of each workshop very well thanks to my cochlear implant. However, there were a number of people in each workshop who used the CART. On a large screen next to the speaker, every word spoken was also typed by a trained captionist. Those who had never experienced CART before, and therefore had never experienced workshops such as these that were truly accessible, hung on every typed word! As I looked around, nearly every ear had a hearing aid or cochlear implant – sometimes BOTH. I counted six hearing assistance dogs in attendance at the convention on Saturday. I was surrounded by “family”. Even those without hearing loss knew someone who did, were family members, or professionals that worked with our population. Between workshops old friends and new friends often crowded around talking. I couldn’t get over feeling like I knew these people. There were no snide comments or competition over who had the better cochlear implant or hearing aid. We were all “family” – with an intimate knowledge of what it means to live with hearing loss.

I attend a local chapter of HLAA, but being at a national event has no equal. The Internet has allowed people with similar disabilities to contact, share information, and get to know each other in a supportive environment. Some of the people I met I had only known online. However, these national conventions allow us to meet face-to-face! What a treat to literally hug the neck of some of my “family”!

This past weekend, I was able to hang out with a wonderful friend who has bilateral Nucleus Freedoms. She lives in North Carolina and since my husband and I were going down to visit his mom and dad, I took the opportunity to spend the morning with her. She took me to one of her favorite places – the North Carolina Zoo. I hadn’t seen the zoo in at least nine years – not since I had moved away from the area in 2002. We have so much in common in addition to hearing loss. No – we do not have similar backgrounds or childhood experiences. But we both are advocates and do all we can in our own small realm of influence to make a DIFFERENCE. She is a sensitive soul who sees much more than a normal set of eyes can see. It shows up in her photography and in the simple things she points out. A whispered, “L o o k“, usually yields a treat of catching LIFE in an unexpected way. I consider her “family” although we are not related.

Fidos For Freedom, Inc.

At Fidos For Freedom, clients include those with mobility issues caused by numerous types of disability or illness, and people with hearing loss. I cannot count the number of different types of disease, invisible illness, and disabilities present in our “family” at Fidos. The fact we are there for the same reason makes us “family”. Whether client, trainer, puppy raiser, volunteer, or DOG… we find a bond and sense of “family” that cannot be found in other groups in our lives.

I am thrilled to share information and get to know people all across the U.S. who are partnered with assistance dogs. Our disability or invisible illness may be different… but we are the same. Some have partners from organizations like Fidos and some are owner-trained teams. Regardless, we are “family” and I feel a loyalty towards these teams that defines the kind of “family” we are.

Sometimes FAMILY are not “Family”

My readers share with me sometimes that trying to get family to understand what it is like to live life in “their shoes” is quite difficult. For those who acquired disability or invisible illness later in life it may make more sense that family members such as parents and siblings seem incapable of grasping who you are now. However, there are others who have shared that even though their own challenges began at birth, family members are unable to fully understand (or perhaps cope?) what it is like to experience life with additional challenges. I truly believe that people with disability and invisible illness are more capable than those who are “normal”. Learning to adapt, and seeking support, information, and techniques create a malleable, strong individual. Oh sure! There are times we flounder. Change is never easy. But the end result yields a person who is extremely ABLE – not disabled. It is unfortunate that many people to whom we are related are unable to really connect with us once change takes place. Perhaps our peers often become “family” to us because they help us stay connected to life in a more positive way. They understand. Relatives often lose contact with us or only see us once in a great while. These individuals who offer daily support, information, and “family” literally evolve into a close knit community and family. I have had some readers share that they are closer to those in their peer group (disability group) than they are to siblings, parents, and other relatives. They have shared that not only do these “real” family members not understand – they don’t want to understand. I was recently reminded that my own siblings do not really know who I am anymore. After something rather tragic occurred in a relationship I find now broken, I wailed to my mother on the phone how terrible it all was. I shared some things with her that I had never shared before… and she responded, “You never shared these things with me when you were going through this”. So I am (painfully) aware that sometimes our family members are unaware and out of touch because we withdraw.

I am blessed to have family who are also “family”. My immediate family have been a safe haven of support throughout all of my adult life. My children have never known me without hearing loss. Mom’s favorite word growing up has always been “huh?” My husband held my hand both literally and figuratively throughout the process of losing my hearing over 12 years. When I became profoundly deaf, he was my biggest cheerleader in seeking other technology that would help me hear again. My family willingly sacrificed so that I could attend trainings and eventually receive an assistance dog so that I could be more independent. My immediate family members advocate for those who have any type of special challenge. They have participated in TBI (traumatic brain injury) camps, hearing loss conventions, local HLAA chapters, Walks for Hearing, cancer awareness walks, and much more. They know and realize that  disability or invisible illness does not define the person. They have always seen the PERSON first. Because they understand what it means to live with disability or invisible illness simply because they LOVE someone who does have challenges, they are “family” as well as family. I hope that many of you have family members that are also “family”. People who support you without hindering you. People who cheer you on and look forward to your eventual success.

Look for – and BE – “Family”

If you are currently adjusting to acquired disability or invisible illness – please know you are not alone. Find a computer and Internet access. It won’t take you long to discover you are not walking this road alone. As you reach out, look for ways to connect and be “family”. I promise you that there is no other feeling like finally… belonging.

Binder, M. (2011). Hearing. The Ear Man: Hearing Aid Service. Retrieved June 28, 2011, from http://www.theearman.com/hearing.html

Denise Portis

© 2011 Personal Hearing Loss Journal

 

“Tag” You’re IT

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Chloe and I were recently in a Wal-mart shopping. In the household cleaning section, one doesn’t expect to run into a child. Among the 4 or 5 other shoppers and carts stood a 5 or 6-year-old little girl. I don’t know how she ditched mom, but she was obviously unsupervised. She was about 20 feet away when she first caught sight of us and slowly made her way down the isle towards us. Inwardly I cringed… for I didn’t really feel like asking her not to pet Chloe. Instead she got close enough and looked at Chloe’s vest (although I’m not sure she could even read), and then at the side of my head where my cochlear implant and BLING sparkle for all the world to see!

She smiled at me and said, “This is a WORKING DOG”.

I replied (with some surprise), “You are EXACTLY right! Chloe is a working dog”.

Unsure of what communication might follow that exchange, she smiled impishly up at me… reached over with her index finger an POKED me while exclaiming, “TAG! You’re IT”. With a squeal she was gone and around the corner with pony-tails flying behind her.

Service Dogs and Play

Chloe’s tail started wagging and she looked up at me with an expectant, “Yeah! Let’s go!”

I just grinned at her and caught sight of a lady about 3 yards from us just grinning from ear-to-ear, having seen the whole thing. I smiled back, calmly walked by her and just as I was passing her – reached out and poked her while saying, “Now YOU’RE it…”  She burst out laughing and we went on our way.

I am asked occasionally if Chloe is ever allowed to play. Most recently this came up at a DEMO we did for the Department of Disabilities for the state of Maryland. I think people love the idea of working dogs, but often wonder if the dog is ever allowed to be “just a dog”. We always assure people that our dogs have plenty of opportunities to rest, play, and just be a dog. They are frequently rewarded throughout the day with treats, praise, and physical touch. Walmart is not the BEST place to induce Chloe to play, so I opted out of the game of “tag”… but I can assure you that Chloe is allowed to play with our family dog, and with family members very often.

All Work and No Play

Just like people, dogs need down time. Especially working dogs IMHO. But we could learn a few things from our furry partners. Chloe often naps when waiting in line at a busy cash register, or if we are traveling by Metro, airplane, or even the family car. She knows when to rest and get some shut eye. She also knows when to play and enjoy a major tail-wagging romp! I try to remember to take “5” and rest when I can. I try to get 8 solid hours of sleep each night because I actually hear better, and walk more steady if I make sure a good night’s rest is priority.

Perhaps we should all play tag from time to time. Hey! It is good exercise, and I’ve not met anyone yet who didn’t smile after being tagged!

Denise Portis

© 2011 Personal Hearing Loss Journal

Idiot Lights

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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

© 2011 Personal Hearing Loss Journal

Hypervigilance vs. Awareness

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Where is she looking? What does she see?

Being “aware” is a natural state for me. I think anytime an individual loses one of their five senses, they learn to compensate by being more aware of things around them. When all five senses are working, input is sent to an individual’s brain about their environment, people around them, etc., to help them determine if any action should be taken. However, when a sense goes “missing” as the result of acquired disability, accident, or illness, individuals have to learn to compensate.

Now that I have Chloe (my hearing assistance/balance assist dog partner from Fidos For Freedom), I have changed from a hyper-vigilant state to simply being more aware of my surroundings. You see, now I depend on HER. If I’m watching my partner as I should, she hears and then sees things I often miss. I’ve learned to pay attention to her body language and cues, as well as visual focus and reactions to stimulus around us (such as a sudden, loud noise). Do you know my blood pressure has gone down since I’ve been matched with Chloe? Hypervigilance is a negative state of being.

Psychologists define hypervigilance as an enhanced state of sensory sensitivity coupled with an exaggerated intensity of behaviors in response to possible threats. Hypervigilance is often accompanied by a state of increased anxiety which can cause exhaustion. People who are hyper-vigilant often stay in an abnormal high state of arousal and respond to stimuli by constantly scanning and detecting possible threats. Individuals with PTSD (post-traumatic stress disorder) often exhibit hypervigilance. Why then would a person who loses a sense,  struggle with hypervigilance? I do not believe that people with acquired disabilities start out being hyper-vigilant. I think it evolves after an individual experiences something very negative as a result of having lost a sense. For example, I do not remember the exact day and time – but I do know that in June of 2003, I was shopping in a retail store and was stunned by the reality of how dangerous being deaf can be. I was scanning the shelves for items and a person evidently needed by. I didn’t hear the “excuse me” or whatever was offered to let me know I was in the way. The woman pushed passed me fast and I ended up flat on my face on the floor. I rolled over and looked around to see her standing there indignant (and not at all apologetic) demanding, “Why didn’t you move?”

“I’m sorry – I’m deaf”, I replied. She had the good grace to at least blush, pushed her cart and hurried away. I was so shook up that I left my cart where it stood, gathered my things, and left. I vowed from that day forward that I would do everything in my power to make my invisible disability more visible. I went through a fairly stressful number of months after the incident and became hyper-vigilant whenever I left the house. I stayed in a state of exhaustion because of it. Enough time went by that I eventually learned to relax a little and just work at picking up good awareness habits. I wear my hair up so that the technology I use is visible. In 2005, I was implanted with a cochlear implant that served to reduce my tension even more since I re-gained the ability to hear. After I was matched with Chloe, “being aware” became even easier. In training, an oft repeated phrase we hear is, “Trust your dog”. In the beginning it is very difficult to do because we are not accustomed to doing so. It takes practice to eventually instill the HABIT of trusting our dogs.

I got a lot of flack this last fall from extended family members for taking my dog to the hospital with me when my daughter had emergency surgery. My family members who do not live with me do not understand that Chloe isn’t a “crutch” – she’s a tool. I use Chloe to be more safe and more aware of my surroundings. My husband and I very rarely go someplace without Chloe. However, occasionally we do go to places where we leave Chloe at home for her safety. These places may include: ICU areas of a hospital, zoos (where animals may become agitated since they want to eat Chloe), or to places that may have guard dogs (such as jails, etc.). When we occasionally go to amusement parks, I do not ride fast rides because of my balance issues. However, someone with an assistance dog may determine that these places are not good for the dog to be either. You can’t exactly put a dog on a roller coaster! So when I happen to be without Chloe, my husband has noticed that I am startled more easily because I don’t have anything alerting me to things I miss on my own.

I do not take Chloe with me to stores, church, and restaurants when I’m visiting my parents. They do not welcome the attention she draws. It is their home and I respect their wishes. I’ve had folks tell me, “WE will be your ears and watch out for you. You don’t need Chloe”. However, when I’m counting on people to cue me it never actually happens. People ignore many sounds that are just background noise to them. I’ve noticed that my parents can be having a conversation and stop on the curb while I just step right out into the road, unaware that a car was coming because they blocked my view of that direction. I have to be much more careful. I’ve also noticed that as a result of having a balance disorder, I stumble more when Chloe is not with me. In throngs of people, individuals “bump”, “crowd”, and invade the space of people around them because they are in a hurry. When I have Chloe with me, people notice and take care to stay outside my immediate perimeter. I’m rarely jostled or bumped when Chloe is with me. As a result, I fall and stumble less.

So Chloe does reduce my anxiety and create a different kind of awareness. I’m aware of HER. I depend on her. Having said all of that, having an assistance dog is not for everyone. In some ways it is like having a really smart toddler around. She investigates things with her nose, and yet I don’t want her to put her nose on every thing we come across. So I have to remind her “head up, Chloe” and be aware of things at her eye level. For example, because it is Easter season, going to Wal-mart means I need to be aware of all of the stuffed bunnies and ducks often at her eye level. Stores put them there so a child will say, “Mommy? Can I have this?” Well Chloe would like them too! So I have to be aware of her at all times.

At Fidos For Freedom, teams do a “meet and greet” activity. I HATE THEM. This activity is very hard on the people there who have a hearing loss. The idea is that you put your dog in a safe place and then communicate with another person or a couple of different people in a group. When you have a hearing loss though, you have to see the person’s face if you are in a large, noisy room filled with other groups of people talking. So it is difficult to make sure Chloe stays “safe” and STAYS PUT while actually carrying on a conversation. The activity is one of those “necessary evils” we endure so that we know what to expect in public – in REAL life.

I have heard people with hearing loss bemoan how difficult it is to carry on conversations when there is a “hub bub” of chatter around them. Sure, I may have a special program on my cochlear implant to help eliminate background noise, but it is not perfect! It is hard to concentrate on the speaker! Add to that trying to make sure your partner is in a safe place, only adds to the stress level a bit. So although Chloe eliminates much of the stress in my life, it can add to it as well. I don’t know that there is a good solution for “group meet and greet” for a person with hearing loss also partnered with a dog. (I’m open to any ideas though – grin).

Ok? SO?

Today’s post comes as the result of an email I received last week. With the person’s permission, I asked to blog about her question. “How do I know if an assistance dog would help me? Is it more trouble than it is help?” These questions are important ones if the person is thinking about training for an assistance dog. Some others you may need to ponder:

1. Am I OK with the attention having an assistance dog draws to me in public?

2. Am I OK with people stopping me and asking what the dog does for me?

3. Am I OK with having to pack a “bag” to go anywhere in order to make sure I have the things needed to travel with a dog?

4. Am I OK with occasionally being confronted and denied access?

5. Am I OK with having to care for and groom a dog daily?

6. (Because of #5), am I OK with having to invest in stock in LINT ROLLERS?

These questions and more are important things to consider if you are thinking about getting an assistance dog.

For me, the #1 benefit is that I am more relaxed and at ease in my awareness. I no longer feel the need to be hyper-vigilant and I’ve learned to trust my dog.

Where Can I Get One?

Self-training or Hiring a Trainer:

Countless owners have “self-trained” their dogs to perform specific tasks. There are pro’s and con’s to doing so. Private trainers can be expensive, but they can custom tailor a program for the specific needs of a person with hearing loss. Unfortunately, many dogs wash out before they can become service dog material, and a person might go through several dogs before finding one that is right for the work. Self-training is difficult, and also runs the same risk of washing out several dogs before finding the right one. But many who have self-trained their dogs have a strong bond and partnership as a result of this work. Usually, people who self-train have very good mobility or caregivers to help out, have had one or more service dogs in the past and have had some training experience, even if only with their own dogs. Individuals can hire a trainer as well and some of these trainers assist in “puppy selection”.

Some links to get started:

http://www.dogpawsability.com/

http://sdog.danawheels.net/ot-adog.shtml

http://www.amazon.com/Teamwork-II-Training-Manual-Disabilities/dp/0965621618

Training Organizations:

There are numerous organizations from which a person can get a “program” trained dog. A list compiled by Assistance Dogs International, can be found at:

http://www.assistancedogsinternational.org/membersstatecountry.php

Another list can be found at: http://wolfpacks.com/products/servicedog/trainers.html

Many programs offer training and a dog at little to no cost, as they depend on the generosity of donors, sponsors, and volunteers. Others have ways in which you can help to raise money for the dog being trained for you.

Every state has similar requirements for a hearing assistance dog, but I always carry my ADI guide to Assistance Dog Laws. A copy can be obtained at: http://www.assistancedogsinternational.org/guidetodoglaws.php

Feel free to email me if you have additional questions!

Sincerely,

Denise Portis

© 2011 Personal Hearing Loss Journal

Frost Heave

Published on by hearingelmo1 Comment

picture from blog post at: Herding Grasshoppers

I recently read a post from one of my favorite bloggers. I love Herding Grasshoppers and NOT just because her son is hard-of-hearing. She is witty, adventurous and “real”. I rarely walk away form reading one of her posts without a smile on my face.

She recently posted about “Needle Ice” and frost heave. I was very intrigued. I’ve seen frost heave when walking trails before, but wasn’t really aware of what it was I was looking at. After reading her post I immediately went to look for more information about this phenomena. Frost heave occurs when moisture-retaining soils freeze in cold temperatures. As moisture sinks into the ground the freezing temperatures cause the water to freeze into ice. When water freezes… it expands and creates pressure. The soil presses up and may expose the roots of plants and has been also known to bring rocks and pebbles to the surface. Take a close look at the picture. The ice crystals have actually brought small rocks and pebbles to the surface. Once this thaws, the rocks and pebbles are left on top of the ground. One would almost think someone had “planted rocks” in an area that may have once been clear of them!

What “Heaves” out of you?

I have given a lot of thought recently about what kind of thoughts and actions are seen in my own life when the going gets “rough“? When my life becomes saturated with a seemingly endless bombardment of trials, problems, set-backs, health problems, and struggles, I am often left pleading with God “PLEASE! Not ONE more thing!” But ya know something? God must know my limits better than I do. Because there have been some difficult times that I have prayed and pleaded “not one more thing – thanks so much“, only to have a blast of cold air on top of my already “saturated life”. Exhaustion, pain, fear, depression and plain ol’ “bad attitudes” may have HEAVED to the surface of my life. These things are usually hidden. Some of the heaving exposes some thoughts and actions that just aren’t pretty. Some of it is just “junk” and “rocks”. The “heave” may expose “roots” as well and leave areas of my life vulnerable.

This past summer, I was having a pretty difficult time. I was doing my best to stave off depression as it is an unwelcome visitor that worms its way into my life at inopportune times. I was to the point of pleading, “Not ONE more thing God – please! Hello? Are you listening?” The next day Chloe was hurt in the park. For whatever reason (as we often will not understand this side of  Heaven), God allowed ONE MORE THING. Chloe’s foot took a really long time to heal and I even had fears she would ever be able to work again. Yes, she is special to me because she is my hound dog and  “doggie friend”, but she really enables me to be more independent too! What would I do if her foot would not heal? During the months (yes you read that right) that followed a lot of “stuff” heaved out of that pressure and into full view – especially to my family. It wasn’t all pretty. I was cantankerous (a nice way of saying PAIN IN THE BUTT) and aloof. I knuckled down and did the things I HAD to, but did not exert myself to do anything else. I had a major pity party several months long.

But not everything that HEAVES out of our saturation point is bad. Sometimes we discover that in spite of disability – we are very ABLE. You learn pretty early on what you CAN do, and end up doing it really, REALLY well. My saturation points have received an extra dose of FREEZE and heaved up compassion for others, patience, encouragement, and determination. I may stand and look around at the defrosted ground and spy a rock here and there. But sometimes? Sometimes I see beautiful geodes or prisms. I’ve not discovered a diamond yet – but heck. I’m only 44. I’m certain I’ve a great number of frost heaves in my future. Diamonds come with maturity. (If you ask my family – I’m not exactly THERE yet).

Have you experienced difficult times? Things that have happened in a life that already seemed completely saturated with problems and struggles? Don’t fear the weather forecast of overnight “freezing temperatures”. Meteorologists are RARELY accurate! If they happen to actually nail it one time? Welcome the heaving frost crystals to the surface and determine to unearth GOOD THINGS. Prepare your heart in advance to showcase determination, patience, long-suffering, gentleness, kindness, and love.

Experience enough frost heave and you’ll find that the soil of your heart and life is well aerated and primed for Spring.

Denise Portis

© 2011 Personal Hearing Loss Journal

I’d Never Shave My Legs

Published on by hearingelmo5 Comments

You know? If I didn’t think what others thought of me was important… I’d never shave my legs.

I would throw my toothpaste away.

I would toss all of my bras.

After all, I do not do these things because smooth legs, peppermint breath and supported body parts do anything for ME.

I’ve heard folks say, “I don’t care what others think of me”. Oh really? If that were true, you wouldn’t have showered this morning and you’d be standing there in purple sweats;

and a red-checkered flannel shirt;

with one green flip-flop;

and one hiking boot!

Instead, your “outfit” (such as it may be) is color-coordinated to a degree. Your body odor reflects you care about hygiene.

OK. Maybe you are sitting there mentally clarifying that you may care what people SEE when they look at you, but – “I don’t care what people think of me personally”. Oh really? If that were true then when your spouse, teenager, co-worker, roommate, or walking buddy asked you this morning, “How are you?”, you would have responded with something much different than “I’m just great! How are you?”

Instead you would have thrown your hands up and said, “Well this is a POOPY day. My dog got in the trash this morning, my daughter forgot to run the dishwasher, I was running behind because I got up 20 minutes late, we were out of eggs so I had to eat CEREAL (face blanches), and I’m standing here with a wedgie if you MUST KNOW!”

But we don’t respond that way, do we? There are societal “niceties” that we adhere too. We know that, “Hi! How are you?” doesn’t mean that the other person really wants a play-by-play of how your day REALLY was. I don’t think that makes us liars. We are simply individuals that are part of a society that interacts somewhat superficially in our everyday greetings.

Yes – I know! There are some people we are just “straight” with and tell it like it is. But most of the time our interactions with others are not with those specific individuals. These special, specific individuals don’t care if we shave our legs.

Stay Positive, PEOPLE!

Take for example something that happened to me this past week.

I was out shopping and maneuvering cart, assistance dog, and SELF up and down the aisles. A woman noticed Chloe, my assistance dog. She came closer with real intent in her body posture and facial expression. I wasn’t getting really “friendly vibes” from her so instead of pretending to continue to shop so that I could keep an eye on her, I boldly faced her approach and waited to see what would happen. She made her way to my side with determination and pointedly read Chloe’s vest:

She then looked at the side of my head and noted my cochlear implant. She actually took two steps to the side to check out my OTHER ear. By this point… I’ll admit that I was a little intimidated!

She looked me in the eye and said, “So you need this dog yourself?”

Now you have to understand my IRE was already “tickled” and there was a part of me that wanted to respond:

“No, stupid. I bring this well-trained dog into public places because I like the attention. This cochlear implant and hearing aid? All for show, lady. As a matter of fact… (and I’d lean close to offer a conspiratorial whisper)… I. Don’t. Shave. My. Legs.”

But you know what? I care what people think of me. I care… because I care about others who have hearing loss. I care about others who live their lives with assistance dogs and service dogs. I want this ill-informed lady to walk away with a better appreciation for what I can do “in spite of“. So I plaster a semi-genuine smile on my face and gesture towards Chloe…

“Yes, I have a hearing loss and Meniere’s disease. Chloe alerts me to sounds I cannot hear, and picks up things I drop. Because of her, I can be out shopping without anyone with me and I never have to ask for help”.

Her face gets a lightbulb moment kind of look. “Oh I see”. She looks at me. She looks at Chloe. She walks away. I could still sense the disdain coming off of her. But at that point? It simply didn’t matter. I had taken a deep breath and responded in such a way that I remained a POSITIVE advocate for both people with hearing loss and people with working dogs. As she walked away I pinched myself to keep from stopping her to ask if she shaved her legs. I do admit that I leaned down to Chloe and scratched her head to whisper:

“Imagine that Chloe. It’s not even Halloween!” The witch with hairy legs walked away with some positive information about working dog partnerships.

We Need Each Other

I’m reminded time and again how much we need each other. I know a kindred spirit and dog-trainer who drove all the way to Frederick with her roommate who has a service dog to walk around the mall after my “incident” to show solidarity. These same people were all set to travel to Virginia to attend a vigil to protest that Andrew was not going to be allowed to have his service dog in school. Thankfully, the school board reversed their decision.

I know numerous trainers at Fidos For Freedom that spend countless hours training assistance/service dogs, training and instructing people… all without pay. They take dogs into their homes to spend countless hours OF THEIR FREE TIME, honing skills and modifying behavior so that a dog eventually makes an excellent match with a person that needs them. These are NOT people who “don’t have a life” either. They have families, jobs, pets of their own, ministries, hobbies, and goals. These trainers not only do not get paid, they rarely receive any recognition. They don’t do what they do for the recognition though. They do it because they love people, love dogs, and love to be a part of the connection that takes place between these matches.

I have another friend who constantly challenges herself by going back to school in spite of working full-time. She already has multiple degrees but she is constantly looking for ways to better herself so that she can better help others. She is heavily involved in hearing loss support, traumatic brain injury, enjoys wildlife and supporting her local zoo, and is an avid photographer. She has bi-lateral cochlear implants, but you’d never know she had a disability. She doesn’t live like she has one. She, like many others I know, live life in all the ways they are ABLE and don’t focus on the disability. (I love her… can you tell?)

I know people who volunteer and give of their time, resources, and talents to numerous non-profit agencies. Their goal is to serve their fellow man. They want to make a difference. They DO make a difference.

It takes just one BAD example of a person with a disability or special needs to sort of “spoil it” for the rest of us. As for me? I don’t ever want to be that person. I certainly take the opportunity to “belly-ache” to select individuals who know I just need to “vent”. I know – that THEY know – I may belly-ache about an encounter in private, but in public I will put on a brave face. They let me vent… and then hand me a razor.

Yes… we need each other. Don’t ever think that what you do – does not in SOME way reflect on others. As a person of faith I try to be extra careful. After all, I cannot go around “claiming faith” if I live as if I don’t have any at all. If I express that faith is important to me, I need to remember that my words, actions and life reflect how others see Christ.

Denise Portis

© 2011 Personal Hearing Loss Journal

Exercising My Right to VOTE

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Since my husband wasn’t going to get home until around 7:15 and the polls are crowded right before they close, I chose to walk to our polling place today. It was a beautiful, crisp, cold morning and required very little encouragement to get Chloe to make the long walk to go vote.

About a block from the school where we vote I stopped to get Chloe’s vest out of my bag and “got her dressed”. She looked at me sort of quizzically for I don’t usually “dress her for work” on a walk. She was immediately “all business” though and stayed in a proper “heel” instead of her “I’m on a walk meandering trot”. I entered the school cafeteria and stopped to remove gloves, scarf and unzip my coat. (Hey! I said it was CRISP!) While waiting in line a nice lady asked if she could pet Chloe. Chloe’s body always wags, “yes, please”, but I have to ask people not to pet her in vest in public places. Days my balance is “off” only requires her reaching for a friendly hand that I’m FLAT ON MY FACE. So I pleasantly explained why I couldn’t allow her to say hello, and continued waiting in line.

I didn’t have to wait long. Mr. “I really need a smoke” was sitting waiting for me and motioned me to come over. In this big cavernous, noisy room with hard floors, walls and high ceilings, I had to struggle to hear. Ever try to speech read someone who was chewing gum like a cow? This poor guy really needed his nicotine fix. I asked for a repeat on the birthday question 3 times. I finally pointed to my mouth and said, “I can’t understand you I’m afraid. Would you repeat that once again?”

I guess it was the hound dog head resting on the table top, bright bling on my CI and the fact that I asked for a repeat 3 times that he finally got that “light bulb” look on his face. He looked up, stared me square in the eye, moved his gum to his cheek, and clearly enunciated, “Birthday month and day?” Well WHEW.

Now I headed to a shorter line waiting for a poll volunteer to show me to a booth. The lady standing there waiting with me seemed friendly. She looked at Chloe, looked at me and said, “Oh wow! I saw you speaking to Earl! I can’t believe you are deaf because you speak so well!”

“Yes, most Americans with hearing loss actually speak very well and do not use sign” I explained.

We stood there waiting silently but I could see a funny look on her face like she was about to bust. The polling folks aren’t really suppose to have a conversation with you. Since I was ‘ready for it’ though I heard her whisper, “My husband can’t hear a thing even with hearing aids. It’s driving me bananas“.

Since she was trying to be unobtrusive I lowered my voice and said towards the floor, “Well I hear voices very well now that I have a cochlear implant. They require a very simple surgery and most folks I know do really well. You should have your husband look into it”.

She looked thoughtful and motioned to another worker to show someone BEHIND me to the next open booth. Again talking to the FLOOR she whispered, “Well I don’t know if he’d go for that”. (pause) “Does the dog come with the implant?”

I looked up to catch the wink so I just grinned and shook my head. “Sadly, but no!” I whispered back. I told the floor, “Well you should check into the Hearing Loss Association of America. They have a terrific website. You both could find out much more”.

Finally she could not delay any longer and showed me to an empty booth. “Push the card all the way in until you hear it click”, she said in a normal tone of voice. She turned to leave me to my voting and whispered, “Thank you!”

I took 15 minutes to vote and Chloe and I both got a sticker. (BIG GRIN)

On the walk home I couldn’t help but send up a quick prayer for this lady and her husband. Remembering how hearing loss once drove my own loved ones “bananas“, I really felt empathy for them. Hopefully she will follow through and find out more information about HLAA. I had to grin to myself as we headed up the last big hill towards my neighborhood. I went out to vote and ended up being pro-active about my hearing loss once again.

Funny how our own circumstances allow us to do that, isn’t it? I felt overwhelmed with gratitude to be able to have a whispered conversation to someone random that obviously had a “need”. It reminded me of one of my favorite “lists” that I periodically put around the house when needed.

Alice Gray‘s “Treasures of the Heart” seminar:

How to Put a Wow in Every Tomorrow:

1) Develop an attitude of gratitude: When you are experiencing tough times, remember the blessings in your life. It’s like sprinkling sunshine on a cloudy day.

2) Encourage others: When someone has a goal, most people point out the obstacles. You be the one to point out the possibilities.

3) Give sincere compliments: We all like to be remembered for our best moments.

4) Keep growing: Walk a different path. Take a class. Read something inspiring.

5) Give the gift of forgiveness: Forgiveness is a blessing for the one who forgives as well as for the one who is forgiven.

6) Take care of yourself: Exercise, eat a healthy diet, sing, and dance a little bit every day.

7) Do random acts of kindness: The most fun is when the other person doesn’t know who did it.

8.) Treasure relationships: Eat meals together, take walks, listen. Share laughter and tears. Make memories.

9) Share your faith: You can wish someone joy and peace and happy things, but when you share your faith–you’ve wished them everything.

Hope you went out to vote today!

Denise Portis

© 2010 Personal Hearing Loss Journal

Prepared For It?

Published on by hearingelmo5 Comments
We simply do not take ANY chances

“The dog days of summer”… whew! Has it ever been hot here in my home state! I could take a repeat of last winter’s snows, believe me! I’ve always preferred 3 feet of snow to 3 weeks of 95 + temperatures! Because of the heat, Chloe and I have been forced to walk pretty late at night. At “twilight” it is dark enough that it isn’t safe to be walking. At least not in my neighborhood where people go 40 mph in a 15 mph zone.

To placate my husband, I make sure Chloe and I are decked out in a number of things that are reflective. I wear a reflective vest, and Chloe a reflective collar. The leash I carry actually lights up near the handle end, and it also sports “lighted bling” of various kinds. I’m sure from a distance we must look like Santa and his team of reindeer! Small price to pay … this GLOW IN THE DARK preparation — for a safe walk! I didn’t anticipate having to walk so late at night, yet preparation has made all the difference.

I’m safe.

It is cooler.

We walk faster.

No… really! Not sure why that is, but the big “loop” we walk is usually 7-8 minutes faster than if we walk when there is more light. Perhaps because we aren’t having to stop to get Chloe re-collected after startling a bunny? Either the bunnies have an early bedtime, or they simply are not seen as easily.

Just Because it Wasn’t Planned, Doesn’t Mean You Don’t PREPARE

I know of very few people who planned to acquire a disability or to be diagnosed with chronic illness. I have become acquainted with people who have progressive hearing loss or are deaf, people who have lost their eyesight due to Usher’s Syndrome, people with MS, Parkinson’s, Meniere’s disease, and Chronic Fatigue Syndrome, people with fibromyalgia and many others who find that they are living a life they didn’t exactly “sign up for”.

So what do you do?

Give up? Try to get a refund? Sue?

Well… most of the people I know “deal with it”. They do so in their own way, and for some it may mean working through it. Working through it for some people may mean that they have a pretty long period of time either denying the problem or grieving the problem. Each of us do this, but some spend more time on these steps than others. That’s OK. I get really aggravated when I hear someone tell a person learning to live with changes that affect their life that they need to “get over it” and “get on with life”. I guess I’m aggravated because the person saying that usually does not have the same diagnosis as the person they are preaching at! However, I do sometimes see someone who DOES share the diagnosis “preach” the same. Just because YOU did not grieve your hearing loss — or whatever it may be that you are dealing with — doesn’t mean that other people deal with the loss the same way.

Once you do work through that process, however, you can start to prepare. Preparation is key. For me preparation looks like this:

1. I always have #13 hearing aid/cochlear implant batteries. I carry some in Chloe’s vest, the car, my pocket book, and Chloe’s treat bag. I have them in my bedroom and my office.

2. My cane is right by the front door. If it is rainy or if there has been a pressure system come into the area, having my cane “handy” insures I actually take it with me out the door. No one “messes” with where I put my cane. If you move it, you risk life and limb (grin).

3. I leave early to arrive early. Let’s face it. It takes me longer to get to where I’m going. For one thing I travel with an assistance dog, and I have to spend a couple of minutes allowing her to “do her thing” before going into a public place. I have to load her up safely in the car. I have poor peripheral vision on one side so I drive the speed limit in a world where no one else does. I allow extra time to get to places ON TIME. Sure! I’m early sometimes, but I am rarely late.

4. I never walk out the door without my cell phone… and I am ZEALOUS about making sure my phone has a full charge. As a matter of fact… I have my cell phone on my person almost every waking moment. (Perhaps something to do with having a kid in college in another state now?)

5. I make it a PRIORITY to get eight hours of sleep. This is so important, I schedule myself to get at least eight hours. Heck! I’ll be honest… I actually do better with nine, so if I can schedule that I do! Having a cochlear implant is terrific! I love being able to communicate without having to actually be in the same room with someone. I’m fairly certain it’s not AGE… it simply takes a LOT of brain power to communicate now! Who’d have “thunk” that communicating with a hearing loss could be so exhausting. It doesn’t seem fair that no calories are burned! It is mentally (and sometimes emotionally) exhausting to communicate with hearing loss. If I get less than eight hours of sleep, it is very noticeable that I do not communicate as well. Fatigue will do that.

6. I make sure I travel with information about service/assistance dogs. You never know when you may have access issues. As a matter of act this has been a pretty prevalent part of our lives lately. (See the links here (with a video too!), here and here).

7. I avoid sodium, limit caffeine (something I find nearly impossible), and take Manganese! These three things I have found to be very helpful in limiting the effect Meniere’s disease has on my own life. Manganese is hard to find too! (Magnesium is plentiful… Manganese not so much). Remembering to make these “BIG 3” a priority, really makes a big difference in how severe my symptoms may be when an episode hits.

8. I memorize and use lines that best describe my communication issues and how I can solicit positive responses. These include:

A. You speak wonderful English! However, I have a hearing loss so I have trouble with accents. Could you repeat that a little slower please?

B. I have trouble understanding in background noise. If you would face me when you talk, I should be able to speech read and hear with my CI (point to it) and hear you much better!

C. I missed what you said. What I heard was (and I repeat the parts I heard). Could you repeat what I missed? (This way folks aren’t having to repeat EVERYTHING).

D. It’s so noisy in here that I am having trouble pulling your voice from “all this chaos”. Can we step over there (points) to a quieter spot? I really want to hear what you are saying.

E. Do you mind if we sit down? My balance is “off” today and if we sit it will give me one less thing I have to deal with!

F. Let’s step over here to talk so that I can put Chloe in a “safe place” so she won’t get stepped on.

There are many more… but it pays to rehearse and have specific examples to communicate to others your attempt at being proactive to help yourself. I have never… not even one time… had someone respond to these types of explanations in a negative way. Preparing explanations like this keep me from slipping and offending someone by spouting off:

A. Geesh, your accent is killing me! I can’t hardly understand what you are saying!

B. Would you quit mumbling and speak slower please? Gee whilackers!

C. HUH?

D. WHAT DID YOU SAY? (In a super loud voice trying to drown out all the noise. Now ever eye is on you and the person who was trying to talk to you).

E. (Denise is bumped and falls to the floor in a tangle of arms and legs… including doggie legs).

F. STOP STEPPING ON MY DOG!

Preparation = Ownership

In preparing and planning, a person with an acquired disability or chronic illness in essence choose to take ownership of their own life. It isn’t another person’s responsibility. It is ours. What ways do you prepare and “own” your life to better live with a disability or chronic illness?

Denise Portis

© 2010 Personal Hearing Loss Journal


Acclimation

Published on by hearingelmo4 Comments

I talked to my mother on the phone yesterday and she and Dad had a big project in which to look forward to for today. They have a beautiful lanai in the back which includes a very nice fish pond and miniature waterfall. In spite of a pump and filters, the pond does need cleaned once in awhile. Evidently, the time had arrived. The Koi have to be erm… “fished out” and placed in big 5-gallon buckets. Then the pond is drained. Next, the rocks and pond are scrubbed and washed with a high-pressure hose. It takes time, and I imagine it’s a messy job. I also imagine one gets a little wet – at least I would.

I called Mom again around 3 PM today. She was pretty bummed. It seems that when putting the fish back into the now clean pond, they didn’t provide enough time for them to acclimate to the temperature change. At the time I talked to her only 4 were still alive, and she lost some of her “big ones”.

Use to the Scum

I suppose my parents could have chosen not to clean their pond. But it evidently gets bad enough you can’t see the bottom. They have a proliferation of live plants and lily pads, but all of these natural AND man-made filters can’t undo the fact that the pond does not have a constant source of fresh water being piped in like mother nature provides. The Koi do not seem to care that the water gets to where they cannot even be seen swimming around. They grow accustomed to all the scum.

Aren’t we that way sometimes? I remember when I first got married, my husband and I did not go to a movie if there was harsh language, sex and nudity, or “adult themes”. We now use a service from “Screen It” . Before going to a movie, we literally screen it. Screen It tells you how many cuss words are in a movie and what they are. It tells you if the movie has any nudity in it, or adult themes. As a matter of fact, it will actually give the entire movie away if you read the whole review – grin! But we have used it a great deal because I just have trouble sitting through movies that are one curse word after another. I don’t care who plays in it or how highly acclaimed it is. But you know something? We make a choice that our movies have to have “less than 10 curse words” in them, and certain curse words are “worse than others” in our thinking. But are they? Aren’t curse words, curse words? And who decides how many is too many? It’s a slippery slope, let me tell you! It takes a lot of dedication and determination to stay true to what we’ve determined we’ll pay money to see for entertainment. I can’t help but feel as if we are agreeing that “a little scum” is OK though.

I heard a young lady recently say that someone they work with let them borrow a book to read. The owner of the book said, “There are no curse words, and it’s clean… you’ll like it!” This young lady was astonished at not only the language in the books, but there were sex scenes. She wondered out loud how that could be? I hypothesized that perhaps the other woman had grown accustomed to the language and written scenes where they didn’t have an impact on her anymore. She didn’t recognize the “scum”.

The SHOCK Killed Them

I’m a bit of a homebody. (I cringe knowing how my family would groan about that). OK, OK… I’m a HOMEBODY. However, my personality is pretty outgoing. I do like talking to people and interacting with them. However, after I lost my hearing and developed a balance disorder, I pretty much began staying at home. Even though I hear voices very well now (in most environments), I still haven’t reverted back to my (literal) outgoing self.

I’m going to a lady’s home this Wednesday for lunch. She leads a Bible study for women in my church. I use to lead Bible studies; in fact, I was one of the main leaders and went from one study to another ten years ago. I use to go shopping and hang out with friends quite a bit too. Now… not so much.

Don’t get me wrong… I’m HAPPY. But I didn’t start out this way. The more silent my world became, the more silent I became as well. I quit everything that required I interact with people. I intentionally isolated myself. It took some time. It was a slow process – I didn’t wake up one morning having become a hermit. So now that I am hearing again with my cochlear implant, and have some of my independence back thanks to Chloe, it has taken some time to make a gradual adjustment to “getting out there” again.

My parents should have kept their Koi in a 5-gallon bucket a while longer. They may have still died… Koi can be very sensitive to change. People can be too – especially people with acquired disabilities I think. Making adjustments in our lives can take time. For one thing… learning to trust can be hard. Learning to believe in yourself again can be even harder.

I have a friend with chronic fatigue syndrome and fibromyalgia. She is a self-isolated individual. It happened very slowly over time. It became harder and harder to explain her disease to other people. She had more “bad days” than “good days”. Constantly having to cancel plans eventually led her to not make any plans. When you look at her she LOOKS FINE. Try explaining that you are NOT. I feel for her. I know what it is like to have an invisible disability. (Still another reason I sport CI “bling” and decided to be partnered with a canine. Nothing says, “something is DIFFERENT” than going everywhere with a working dog!) She is now trying to reach out again, but she is taking it very slowly. After all, it can be “two steps forward and three steps back” many times. I think taking it slowly is a good idea. Acclimation TAKES time, after all.

Do you know someone with an invisible disability? Do you know someone who has a disease that exhibits “silent symptoms”? Perhaps they have isolated themselves and are convinced they are a homebody by CHOICE. They may seem happy. I’m not saying go BUG the heck out of someone who has opted to avoid being in public as much as they can. But I think it is also OK to reach out. Maybe bring lunch to THEM. Working in your garden? Pick some tomatoes or flowers and take them to this person. Email them occasionally. Offer to take them shoe shopping. Who says no to that? (GRIN) Just be aware it may take them some time to re-acclimate themselves to being out more, or having a friend over.

One reason I love the Internet and love to blog? I have “met” an awful lot of people just like me. Some I call “friend” too… for we’ve gotten to know one another and have learned to share our life’s story. We’ve connected. Things like Facebook can do that too, or joining online support groups. I’ve heard some people say, “yeah but those aren’t REAL people”. Excuse me? Behind that keyboard is the mom of a child with hearing loss – and she homeschools too just like I did! Behind another keyboard is a lady who lives with invisible disabilities who is training her own service dog in a big lovable Great Dane. The person who clicks that mouse has MS and has a wonderful service dog who gives her some independence. Numerous “point and click” folks out there have cochlear implants and love to talk about them too! These are real people; our connection is real.

If you know of someone who seems isolated (whether self-imposed or not), encourage them to get a good computer with reliable Internet service. You’d be surprised at the amount of support they can find out there… the connections… the friendships!

Denise Portis

© 2010 Personal Hearing Loss Journal