Category: hearing assistance dogs

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

Random Definitions – Consider the Source

Published on by hearingelmo2 Comments

Aren’t definitions funny critters? Oh sure… you can use “Dictionary.com” or Merriam-Websters Collegiate “big enough to cause a hernia” dictionary to look up words. But the funny thing about the English dictionary? Words can mean different things. The words can EVEN mean different things – to different people. Some random definitions I have encountered in the last week include:

Now: To the mother who demanded the trash be emptied, it means immediately. To the 20-year-old son who will get to it eventually, it means sometime today.

D-cup: “What does ‘D-cup’ mean to you?” Response: “Male or female?” Speechless thought: “Wha’…   ?”

McDonalds: To the over-extended, ‘I forgot to thaw out the chicken’ parent, it means SUPPER. To the health-conscious, it means ‘heart attack in a bag’.

Snap: Daughter: “Oh snap, I forgot my key!” Mother: snaps fingers and looks quizzically at daughter. Daughter: (raises eyebrows and shoots an exasperated DUH look at mother…)

Normal: To a teenager, it means someone who “fits in”. To a dog, it means it can be eaten. To a person who happens to have a disability, it means “treated like everyone else”.

Yup! You often have to consider the source to understand how people choose to define common words. The word “normal” has cropped up a couple of times in the past several weeks for me.

First occurrence:

Kyersten and I were at Costco looking around and purchasing some bulk items to take back to Virginia for college. A lady did a double-take, looked at Chloe (my assistance dog), looked at my head and kept walking a few steps. However, she immediately stopped and left her cart, pocketbook and items and trotted over to where Kyersten and I stood to say, “Excuse me! Is that a cochlear implant?”

“Yes,” I replied.

“Oh my husband has one of those. How long have you had yours?” she asked with curiosity.

I preceded to tell her a little bit about my own activation 5 years ago and hearing health history. I was trying to keep an eye on her cart (with pocketbook that screamed, “Steal me. Someone steal me” in it), so was a little startled when she interrupted my nervous glances toward her cart to say, “But your speech! It’s so normal!”

In talking with her, it seems her husband was deafened at a young age and was essentially without sound for 27 years before he received his own bilateral implants. He evidently has a noticeable speech impediment. But what is “normal”? I have met late-deafened and congenitally deaf people from all over the United States. “Normal speech”? Some would argue my southern accent is not “normal” for the DC-Metro area. How one person with hearing difficulties speaks, is much like an individual accent. There isn’t anything “abnormal” about it. My son has perfect (selective) hearing, and he has a speech impediment. It is “normal” for him though. How pronounced his own speech difficulties sound, depends on how hard he chooses to enunciate words and regulate his speed. Who determined what “normal speech” was and determined the “yard stick” by which to measure all speech?

At Pearle Vision Center:

A lady and her daughter stopped to admire Chloe who was in a down/stay. “Oh what a beautiful working dog! Are you training her?”

“Oh! No… Chloe graduated 3 years ago. She’s always training, but I’m not her original trainer” I replied.

“Oh! You mean she is YOUR partner?” the surprised woman asked.

“Yes. She’s a hearing/assist and balance assistance dog. I am late-deafened and have Meniere’s disease”, I cheerfully replied.

“Oh wow… you look so n-norm- normal” she stuttered out (since she realized how inappropriate that was as soon as she started saying it!)

I just smiled and she walked away embarrassed.

Normal?

Very likely, this world would be a better place if people didn’t go around labeling others as NORMAL or NOT.

To someone, somewhere… you aren’t “normal” if you choose to define the word as “not like you”!

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

Yup, I talk to My Dog. Don’t You?

Published on by hearingelmo6 Comments

I’ve embarrassed myself a couple of times in Wal-mart recently. I’ve caught the HUGE smiles of people passing by or catch the gleam in their eye as I look up and around. You see? I talk to my dog. It’s not just because she’s an assistance dog either. I talk to all of our dogs. But Chloe is the only one I talk to in the middle of Wal-mart, for obvious reasons.

People have heard me ask, “Chloe do you think the guys will want french-style green beans this week or do you think I can sneak some fresh green beans into the menu?” Chloe cocks her head and wags her tail. For some reason I’m able to make a decision. It’s not that I interpreted her body language to mean, “I’d go with the French-style, Denise”, but it helps to talk to her.

I caught an actual chuckle when I exclaimed to Chloe, “Chloe! Look! Can you believe it? It’s an Elmo Christmas SNOW GLOBE! Hope Santa knows I’ve been very good!” Chloe bumps my hand and wags her tail again. She thinks I’ve been very good.

Paying Attention

You might think I’m crazy. But actually… I’m helping Chloe keep her attention on me. If you look at a dog’s eye-level at Wal-mart, you will see things that aren’t as readily apparent to those who are taller than 3 feet. Stuffed animals, “Roll Back the Prices” price tags that Chloe thinks she really should swipe off the shelf and hand to me… all kinds of tempting things. By talking to Chloe, she pays attention to me. When I have a dizzy moment, I say, “Whoa….” and Chloe knows to take a step out of heel to make sure she can move if I actually fall. It’s important for Chloe to pay attention to me.

That’s why it is really not a great idea for people to “ooo and ahhh” over an assistance dog/service dog in public. You are getting the dog’s attention. They can’t help it. They KNOW they are beautiful/handsome and wonderful. Chloe’s vest actually has a tag on it that says, “Do not distract”. I realize people mean well, but if I’m having a bad balance day AND I don’t hear your “oh what a pretty dog” remark, I could fall just because Chloe wants to go and greet you.

What Distractions Can Do

I had this happen in Best Buy once. I was on my knee, balancing to see something lower, and someone got Chloe’s attention. She broke her heel to stand and WAG at them, and I fell right over. I laid there blinking up at the man whose eyes had widened in horror. “Gee, I’m sorry Miss. I can’t read, obviously”.

“Oh, that’s OK. I just wasn’t prepared”, I replied cheerfully from the FLOOR. I waved his hand away and said, “Actually she needs the brace practice, so no problem”. I had Chloe help me up, and the man again apologized. He even had tears in his eyes. I laid my hand on his arm and said, “Honestly, it’s no big deal. I sprawl at least once a day!” He wandered away unconvinced.

I do understand that seeing a well-behaved, dog identified as a “helper dog” can be really hard to just walk by for those of you who love dogs. I actually do not mind being stopped and asked about Chloe. However, it is really helpful if you talk to ME and not Chloe. Feel free to ask people with assistance dogs if you can pet their dog – because some people do not mind at all. I’m not those “some people” (grin). I will always (pleasantly) say, “I’m sorry she’s working and I’m trying to keep her from being distracted”. Be prepared for some people to say “no, I’m sorry”. They appreciate that you think their dog is “swell”, but it really doesn’t do the dog or the owner any good to constantly allow people to pet them in public. Many people use service dogs for disabilities that are invisible. It may not be easy to pick that up and asking to pet the dog might put the owner at risk.

If we meet someone we know real well, I actually do allow Chloe to say a quick “hello”. She is very good about giving quick kisses and then stepping back into heel. To do so is my choice though. Those who know me well, actually know not to ask on rainy days when they know my balance is going to be really bad. When Chloe sees someone she knows in public (usually folks from our small church, or close friends), she will do better to say a quick “hello”, so that she can get back to work. It is like identifying someone she knows from her “pack”.

Chloe’s Safety

By talking to Chloe in public, I let other people know she is there. Now that I’m completely independent and don’t have to worry about what I’m not hearing or dropping things I can’t pick up, I even head out on really busy shopping days. Not on purpose mind you! I’m not completely nuts! (grin) But I’ve been in a “crush” of people and talked to Chloe non-stop so that people would know she was there.

We made the mistake of going to Hershey’s Chocolate World the weekend after Thanksgiving this year. We go there a lot, but this was the first time it was literally wall-to-wall people. I couldn’t have fallen down if I had wanted too! I was completely surrounded by people! I talked to Chloe non-stop so that people would know she was down there. It’s hard to see someone 3 feet tall! I would even stick out my hand in a real “crush” and say rather loudly, “Excuse me… service dog coming through!” I was so intent on keeping Chloe safe by talking to her and watching where we were going that I mis-placed my daughter. I looked up and could see my husband in the distance, and my 6’3″ son was easy to spot… but where was Kyersten?

My heart was pounding and I held my arm out and just kind of plowed through to the nearest wall. I frantically searched for her little 5’3″ self and could not see her anywhere. I was scared spitless! I reached for my phone to see if I could send an S.O.S. text to her. Just then I felt a hand on my elbow. I whipped my head up and stared right into the smiling eyes of my daughter.

“Kyersten! I lost you!” I managed to sputter out. (It was hard, because I was spitless, remember?)

She rolled her eyes, and gave my shoulder a squeeze. “Mom. I’m 20-years-old. It’s not like I’m lost. If I lose track of you guys I’ll call. You are kind of hard to lose track of” and she gestured down to the red assistance dog complete with holiday jingle bell.

Freedom

You may run into me in a store, restaurant, movie theater, post office, pharmacy or doctor’s office with Chloe. You may HEAR me before you see me. I talk to my dog. But you know something? It’s not ONLY because it helps her pay attention. For you see… Chloe is the reason I’m alone in a store, restaurant, movie theater, post office, pharmacy, or doctor’s office. Before being matched with Chloe, I rarely went out alone. Talking to Chloe is a reminder to me… I’m in public, enjoying life, and yup! I’m talking to my dog. Don’t you?

Denise Portis

© 2010 Personal Hearing Loss Journal

Meniere’s Rant

Published on by hearingelmo3 Comments

I don’t usually go on and on about Meniere’s disease, but I’ve had a pretty bad week with the “little Rascal”. For one thing, I count myself extremely BLESSED as I seem to have only one major trigger. Rain. I know plenty of other folks who have other types of triggers that include flying, change in altitudes (vacations in the mountains!), alcohol, head cold or allergies, chocolate (oh my!), smoking, and even certain foods! So since I only have “rain” as a Meniere’s trigger, I really try not to complain very much.

A fellow Meniere’s patient pointed me to a terrific support group through Facebook today. I have already found a lot of great information. If you belong to Facebook… check it out here. There is a simple but helpful Meniere’s organization on the Internet which can be accessed here. A website providing basic information and clinical trials can be accessed here. My favorite website is the National Institute on Deafness and other Communication Disorders (NIDCD). They have a terrific Meniere’s Disease section that can be located here.  Thanks to the Meniere’s disease Facebook page, I was even directed to our very own Super Villain – Count Vertigo. Who knew?

Being a former farmer’s kid and because I still have numerous relatives that I love in a farming community in SE Colorado, I try to never belly-ache about the rain. Rain is necessary and in most cases a “shower of blessing” to farmers, ranchers, and those who get tired of moving their sprinklers around.

But this week? SIGH. I’ve had some bad experiences. On a rainy day, I fell in the laundry room this past week and happened to find the only exposed nail in the “unfinished room”. Thankfully, I hit it square and impaled myself through the fleshy part of my arm. I was able to pull it clean away and stop the bleeding very quickly. A quick verification that I had a tetanus shot recently, a severe pounding with the hammer on that (stupid) nail, and I escaped “nearly” unscathed.

This morning my alarm clock went off and my well-trained assistance dog was in my face immediately to “kiss me awake”. As soon as I sat up I knew it was raining outside. When the room spins the moment I become vertical, I rarely need to look outside to verify that it is raining. I didn’t fall until about 10 AM. Unfortunately, when I lost my balance I was on the stairs with my arms around a large load of laundry. Missing three steps means I have a pretty good chance of landing “gracefully” and still on my feet. Missing four however? Not a chance. I lay sprawled on the floor staring at the ceiling and a concerned hound dog with dirty laundry scattered all around me. I have a standard set of “OK, I’ve fallen – now what?” questions I ask myself.

1) Am I conscious? (duh)

2) Is anything broken?

3) Am I laying on anything important (like a dog or a cat)

4) Can I close my eyes and open them again and stay conscious?

5) Do I need to call a family member?

If I can answer No, No, No, YES, and NO… then I simply sit up and take my time to re-group. This time I didn’t hit anything other than my elbow on the way down. I may or may not be sporting a pretty blue spot tonight.

There is no cure for Meniere’s Disease. (Hope you aren’t new to the disease and I just depressed you for the remainder of the year!) There are some treatment options, but they only work for “some”, and all the options only serve to reduce the severity of symptoms or number of attacks. NIDCD lists several treatment options that include:

1. Medications – Prescriptions such as meclizine, diazepam, glycopyrrolate, and lorazepam can help relieve dizziness and shorten the attack.

2. Salt restriction and diuretics – I take a prescription diuretic and do restrict my salt. I’ve not seen any real difference, but continue to do these in case it has a cumulative effect.

3. Cognitive therapy – Doesn’t treat the Meniere’s but does help the patient deal with anxiety and coping with “future attacks”.

4. Injections

5. Pressure pulse treatment

6. Surgery

7. Alternative medicine. I take Manganese (5 mg) and a B complex vitamin. Researchers have found that Meniere’s disease patients have a Manganese deficiency. Manganese can be hard to find. (Magnesium is plentiful, but you’ll have to go to a specialty store or order online to find Manganese). Other treatments include acupuncture, acupressure, tai chi, and other supplements. Always tell your doctor if you are taking other supplements as many may interfere with prescription drugs.

This past year, Gene Pugnetti was surgically implanted with a special cochlear implant to treat his severe Meniere’s disease. You can read about the latest update here. The original story can be read here. I will be looking for updates about Gene and wish him the best!

Some things I have learned that help me with Meniere’s disease:

1. I take 5 mg of Manganese and a B-complex vitamin.

2. I limit my salt and take a prescription diuretic.

3. I take 50 mg. of Benedryl before bed.

4. I have inexpensive molding about 4 feet high along the hallway, kitchen, and bedroom. At night, if I have to get up in the dark, I only need to feel my way around the room to discourage getting disoriented. Without it, my eyes “play tricks on my brain” about how close the floor, walls, and doors are as I am struggling to see in the dark. The molding has allowed me to move about the house as needed in the dark without injury.

5. I never EVER go down the stairs without holding on to something. If I have something in my arms, I balance the “something” on one hip. On bad days, if it takes me 3 or 4 minutes to get down the stairs instead of 30 seconds, that’s OK. Patience is a virtue… and may prevent broken bones!

6. I avoid looking directly at ceiling fans or other contraptions that “spin”.

7. I do not ever ride roller coasters, or rides that spin in any way. If I am “spun” into an unconscious state, it is rather difficult to hold on! I made a promise to my family after “Space Mountain” in 2002 to avoid these rides for the remainder of my life. I’m finding it isn’t a difficult promise to keep.

8. I stand and sit with pre-meditation. To simply “pop up” or sit down quickly only means I will experience dizziness. Why bother when moving with a little more care will help to avoid it?

Hopefully this information may be of use to someone! I’m very thankful Meniere’s disease rarely necessitates I write about it!

Denise Portis

© 2010 Personal Hearing Loss Journal

Is INVISIBLE good?

Published on by hearingelmo5 Comments
Chloe and Denise at 2010 Fall Family Weekend

A person that I know with invisible challenges (Fibromyalgia, IBS, and Chronic Fatigue) said to me recently, “Denise… you have mostly positive advocacy experiences because you make your invisible disability – visible. That isn’t always possible for other people with invisible problems!”

I thought about that statement for a week. Then I thought about it for another week. I actually thought about it for a third week, which for me? It’s nearly impossible for me to “simply think” on an issue without going ahead and blogging about it! I decided to do a “test”. I would dampen the visibility of my disability and see if I had any problems as a result. If you don’t want an invisible disability to ever become apparent – don’t get an assistance dog. Nothing shouts, “THERE’S SOMETHING DIFFERENT ABOUT YOU” more than having an assistance dog with you. Let’s face it… it’s not the norm to see a dog in a public place. Having a canine partner is not for the faint of heart, for you will have questions, be stopped constantly by admirers, skeptics and the occasional unattended child. Because of my balance problems, having an assistance dog has yielded far more benefits than any negatives. I wasn’t about to leave my assistance dog at home for the sake of a “test” so I had to think of other ways. Thankfully, those who know me well are so accustomed to seeing Chloe with me, she is almost invisible as well.

I have always worn my hair up since acquiring hearing loss. I made the decision early on to make sure my hearing aids could be seen. The decision came as the result of being knocked out of the way in a Sam’s warehouse in 2000. Someone had been trying to get by and I continued to look at the shelves since I couldn’t hear the “excuse me” in such a cavernous place. I think the woman who knocked me down was equally as startled as I, for she certainly had no intent of sending me to the floor. She said, “Why didn’t you move?”

I replied, “I’m deaf”, and watched the color drain out of her face. She helped me up and hurried away. That week I began to wear my hair up AND I opted to purchase brightly colored earmolds for my hearing aids. In 2005, I was implanted with the cochlear implant. It was very natural for me to continue to wear my hair up and to add the CI “bling”. Making an invisible disability – not – has helped me. The only time I’ve had a problem with my CI being so visible is when I would on very rare occasions run into a defensive, belligerent, culturally Deaf person who was vehemently against the technology.

So for my “test” I thought I’d wear my hair down and not have any visible assistive listening devices. I chose to do it on a “long” work day. Shortly after arriving at school I ran into one of my student’s parents. I couldn’t discern any difference in the way we interacted and communicated. I went to the office and made copies for my classes, and checked my folder for any notes from the administrator. My first class seemed to go OK. During discussion time, it can get pretty noisy. It seemed to me students addressed their desk instead of looking up when speaking, but I was very aware I could just be guessing at that. Another student helped me pull the overhead projector screen down and I could tell he was responding to a question with his back to me as he reached to pull it down. Again, I was very aware this was probably just my imagination and… after all what proof did I have that this doesn’t happen on a normal school day?

I was well into the afternoon classes and began to think that this was a poor test since all of my students know I have a hearing loss. I was already “plotting” to venture into a store or restaurant with my hair down for a more accurate test. That may actually BE a better way to test my theory, however I was surprised by a late afternoon comment.

After a requested “repeat”, a student said, “Oh sorry! I forget you have a hearing loss when your hair is down!”

Yes. I realize that my students interact with me quite a bit and are more likely to notice a change in my hair. This meant I needed a new test.

I went to Costco this weekend with my son. He’s 6’3″ and strong enough to assist with all those items we buy in BULK to save money. I deliberately wore my hair down. I hate going to Costco on a Saturday because it is always so much busier. However, I figured for this test… that would be a good thing. I pointed out items and my easy-going, “glad to be of help” son would load them up on the big cart. I had several people stop to admire Chloe and ask questions about her. It seemed pretty standard until my son pointed out…

“You know they only ask how long you’ve been training her because they can’t tell you have a hearing loss, right?”

Ta da! This was the proof I needed, right? Who knows. I did know that my friend with invisible challenges was right about one thing. I do try to make my disability visible and usually it is to my benefit.

I enjoy answering questions about my CI and my assistance dog. People ask great questions for the most part, and most are curious because they know someone who has hearing loss or someone that could use the assistance of a canine partner.

Should everyone with an invisible disability make it visible?

No.

Cochlear implant manufacturers produce the CI’s in a variety of colors… usually HAIR colors. Individuals choose a processor and magnetic coil based on their hair color in order to eliminate the visibility. The idea is to help you keep it “your business” if that is what you desire.

I’ve heard from others with invisible challenges or disabilities who have said:

1. I don’t want anyone feeling sorry for me. If I want someone to know about it, I’ll tell them at an opportune moment.

2. I don’t want my co-workers treating me any differently. It would be terrible if they thought any advancements or promotions I got were the result of special privileges.

3. I don’t want to appear weak. I have bad days but do my best to camouflage them.

4. I don’t want to draw a bull’s eye on my disability, putting me at risk for crime or making me a target.

5. I want people to know who I AM, and not judge me or define me by my disability.

These are legitimate and persuasive arguments. If you have an invisible disability or challenge, it is YOUR CHOICE how open you want to be about it. My heart goes out to those struggling with depression or mental illness. These challenges can be very difficult to disclose. Sometimes invisible challenges carry with them a stigma that can wound and demoralize an individual. Never forget that we are people first. We are NOT our disability or challenge. I chose to look at it as my disability is simply a part of who I am now… a new me. As we mature and/or age (as the two do not always coexist), all of us change. We may choose to color our hair, or take care of wrinkles through the help of a trusted plastic surgeon. Maybe we wear glasses or contact lenses now. Many choose to do what they must to avoid the stigma of an invisible challenge. Those who choose to keep their challenges hidden have the right to do so. I do not judge them and trust my personal choice is treated with the same respect.

Care to comment on why you do or do NOT make your own invisible challenges or disability more visible?

Denise Portis

© 2010 Personal Hearing Loss Journal

Exercising My Right to VOTE

Published on by hearingelmoLeave a comment

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

We’ll Never Be the Same

Published on by hearingelmo2 Comments

“observe a leaf falling from on high…listen to the sounds it makes as it touches branches on the the way down…then the sound of landing. I didn’t realize until today that I can do that. I cried. Good thing no one was there. 🙂“

A friend of mine penned the above words in her “status message” on Facebook, yesterday. Honestly? When I read the words, goosebumps erupted on my arms and neck and I felt an overwhelming emotion well up in my chest. I sat at my desk and “cried like a baby” if you must know. Deep, wrenching sobs that shook my entire body and caused my assistance dog to lay her head on my knee and look imploring up at me … asking to “help” as best she could.

Why?

Unless you’ve lost something and regained it through surgery, rehab, hard work, and perseverance you could never understand completely. When an individual chooses to be surgically implanted with cochlear bionics, they can only do so after their “natural hearing” has reached a point that other assistive devices provide little help. Many resign themselves to not ever hearing again “this side of Heaven”. To regain that and as an added benefit, the ability to interact and communicate with others, strengthening old relationships or forging new ones, repairing self-confidence and esteem, all “sweeten the deal” and make the decision even more life–changing. For some, aural rehab goes very quickly, while for others that first year can be frustrating and challenging. In the end, we’ll never be the same. We will never take for granted our hearing and the ability to listen to the sounds around us. One becomes a part of a “family” of other folks who are “hearing again” as well. We get it. We understand. We’ll never be the same.

The Internet has changed our world, but there are some unheralded benefits of having the Internet. It has provided a connection for people with disabilities, health concerns, or chronic illness. Support groups and message boards exist for every type of health issue.

Those with the invisible illness/disability of fibromyalgia or chronic fatigue syndrome are connected to others who live with the knowledge that today things might be pretty good – but tomorrow you may be bedridden. Those with chronic, hard-to-explain pain disorders can communicate with others who live the same life and share the burdens and triumphs of living with a disease that WILL NOT squelch their inner spirit.

Those who have a loved one that has survived a traumatic brain injury can find others who “miss the person they once loved” and are “learning to love the person left behind”. They can share successes and set-backs, fashioning relationships with other parents, spouses and loved ones who understand because they LIVE IT.

Individuals who live with mental illness can connect with others who understand the stigma and prejudices. They can connect with others who are SURVIVORS.

People (finally) diagnosed with the new epidemic of Lyme disease can find a community of people who have learned how to talk to their doctors, discuss holistic practices that provide relief, discover medications and lifestyle changes that can make a difference in the number of recurring flares, and how to remain positive and proactive in living with the illness.

I have a cousin in the latter stages of treatment for breast cancer. Her “voice” has changed throughout this process and I can tell by reading her penned words that she has a new fascination, anticipation and appreciation for life. She will never be the same.

I think we are slow to recognize how hardship, tragedy, trials, and adversity can provide the surprising and unexpected benefit of a permanent change in hearts, minds, and bodies. For many of us our very foundation has been rocked and rebuilt. Life is different. Sweeter.

We’ll never be the same.

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


A Common Dust Speck

Published on by hearingelmo2 Comments

To others it was just a common dust speck. To Horton, it housed an entire world in need of assistance, with hundreds of lives at stake on the brink of being (gulp) boiled. “Common” is subjective, for what is commonplace and boring to one individual may be exactly opposite to another.

Losing to Learn to Appreciate

Having an acquired disability like hearing loss and a balance disorder often teaches me to be appreciative of things I once took for granted. Activated merely eight days before, what blended into the background as a normal, ordinary, and mediocre sound to my husband, was the astonishing, spine-tingling gurgle of sound to me! It took me 15 minutes to finally pinpoint the sound of the electric coffee-maker in his office.

“How could you not hear THAT! What a wonderful sound! It is so distracting! It fills the entire room!” I exclaimed.

“Honey, it is such a commonplace sound it doesn’t even register for me!” he replied.

I was stumped! This gurgle-burp, sigh of steam… commonplace? Doesn’t register? No way!

Subtle cues

If you’ve never had any experience with a hearing assistance/balance assist dog, there are cues that are subtle… even invisible to someone other than their partner. My husband is constantly amazed that I am able to scoot the cart out of the way of a “mother of two in a hurry” at a store when I only have one cochlear implant. Finding the direction of sound is quite a challenge. However, Terry isn’t watching what I’m paying attention to while we shop. If Chloe turns her head and pricks her ears up, I automatically look in the direction her nose is pointing. To me this subtle cue shouts, “Well! Would you look at THAT, Denise!”

When air pressure and bad weather create a vestibular nightmare for me, it is the subtle cues that Chloe and I communicate most effectively. On a “normal day”, I’ll drop something and can slowly bend to retrieve the object. However, on a “bad day”, I only need to look at the object I dropped and intercept Chloe’s gaze… for she has most certainly already noticed the dropped item too. Sometimes I only smile and she cheerfully retrieves the object! Other times I may point and ask her to specifically fetch something. (You don’t ALWAYS want your dog to retrieve dropped items. For example, my husband Terry dropped a large candle from the top of the closet this weekend. I did not want Chloe to retrieve any of the glass scattered over the carpet and had to “shoo” her away!)

Chloe may go through a day and only alert me to the kitchen timer a couple of times, my cell phone, and retrieve my garden gloves from the yard. Those tasks may seem very ordinary and commonplace. Yet without those alerts, my tea kettle would have boiled empty and the chicken defrosting in the microwave may have sat in there all day! I would have missed the call from my husband reminding me that he was working late. I would have had to retrieve those garden gloves myself in the middle of a yard with nothing nearby with which to pull myself back up! So common and subtle cues are subjective. They may be very important alerts that enable me to live more independently.

Just Help

I know people who do things to help others who are never noticed. They don’t want the attention. It can be something as simple as paying a military person’s meal for them when you see them in a restaurant.

Perhaps you help a mother get her stroller up on the curb, or take a shopping cart to the “cart corral” for a customer in a hurry.

Don’t ever underestimate any help you are prompted to give. We are called to serve… to make a difference. Even people with disabilities can help others. I know someone who is blind and deaf who emails “10 Blessings” a day to various people. As I’m the occasional recipient, I can tell you those blessings come on days I need them most.

You don’t have to have money to help. Most acts of service are free.

You don’t have to have a lot of time to help. Most opportunities take seconds.

Don’t ever look at a day as a “common” one. If you really set out to do so, you can make a difference in someone’s life.

If you listen really carefully, you may even hear…

“We are here, we are Here, we are HERE”

Denise Portis

© 2010 Personal Hearing Loss Journal