Category: vertigo

Once Upon a Time…

Published on by hearingelmo4 Comments

Once upon a time, there was a young woman from a small farming community in the mid-West. She was healthy and strong. She loved music, “listening” (but mostly TALKING), and books. She went away to college and met a Southern boy. She had so many dreams! She met a “circle of 8” culturally Deaf friends in college and was welcomed into their small sub-culture on this tiny college campus. She learned sign language.

To her sorrow, she couldn’t have children, so she made big plans to go right into graduate school and eventually be in a place where she could help people. She told her husband, “Someday? I want to adopt some Deaf children”. He knew she had a heart for this culture with hearing loss and also knew she longed to be a mother. He supported her dreams.

Don’t you love “Once Upon a Time…” beginnings? My favorite books begin by transporting the reader back in time. “Time” may be a real time period, oozing with history and descriptions of bygone days. The setting may be in a make-believe time and place. Somehow, it still manages to wrap my mind and heart around the characters and story, despite the make-believe.

When I think of my own “once upon a time…”, I have to smile at my naivety and immaturity. NOT that I continue to be gullible and naive at times – even immature!  However, I find that I am forced to hide my “knowing smile” when I hear my 21-year-old daughter “dream aloud”, or my 20-year-old son outline his “life’s blueprint” for me. Life has a way of taking a person down paths that are only visible through the benefit of hindsight. Our story unfolds one day at a time. Decisions are made – some irreversible. We learn to live with consequences – both good and bad ones. We may “roll with the punches” and work hard to be refined like gold. Unplanned detours have a way of changing our direction in life. Our goals may change in order to accommodate our changed lives.

 

At the current age of 45, I look back upon my own “once upon a time…” story. I am late-deafened and have a balance disorder. I “hear again” with bionics and navigate life with a service dog. I have two children. I’m a teacher. I am still married to my college sweetheart. It has been over ten years since I have been able to visit my hometown in that small farming community. I am “mostly” shunned by the Deaf community as I chose a different life path. I am integrated and immersed in a new community of people with hearing loss and other disabilities that I did not know even existed. I actually love technology and even my books are now in an electronic library. I don’t listen to music – but I do listen. Better than most, in fact…

Chances are I have many chapters left in my story. Regardless of the number of pages, my heart’s desire is that I may make a difference – in even just one life. Occasionally, I hear from disgruntled readers who are exasperated at my viewpoint. “You don’t know what I live. You can’t understand how few opportunities I have now”. I gently remind them that whether they are using JAWS or Dragon software or are dictating to another, they have reached across miles to touch base with me. They have shared their ideas, frustrations, and heartaches. Others respond at times in frustration that they lack the support I have around me and cannot build a foundation for happiness in their own lives. I share with them some things I am unable to share in this venue – the people who have abandoned me and have turned their backs on my family and I. I remind them that every obstacle helps me to peel back layers of who I really am to reveal strengths that are hidden when “everything is perfect”.

No. Our lives are not the same. Where is the fun in that?

Hearing Elmo is actively soliciting other writers to contribute their own stories. In other words… I’m begging. GRIN! I prefer that 50% of the posts sheltered here be from people other than Linda Denise Portis. You can have a different viewpoint! Won’t you consider sharing your own “Once Upon A Time…”? You may not consider yourself a “good writer”. I’m not… and that hasn’t stopped me sharing my own thoughts and stories. I ask because I’m astonished at what kinds of things make a difference to another. We cannot know what others are going through and whether or not their own invisible disability or chronic illness forces them to reach out for help. Some are “pointed” to Hearing Elmo by others. However, most chance upon this “once upon a time…” venue. Won’t you consider sharing your story? It can be serious or fun. You can relay facts or express dreams. If you or someone you love lives with disability, chronic illness, or mitigates personal obstacles/disabilities with a service dog… Hearing Elmo would love to be your sounding board. Are you a trainer or health professional? I hope you will consider writing!

Denise Portis

© 2011 Personal Hearing Loss Journal

 

Courage!

Published on by hearingelmo3 Comments

 

The Cowardly Lion from "The Wizard of Oz"

Cowardly Lion: Courage! What makes a king out of a slave? Courage! What makes the flag on the mast to wave? Courage! What makes the elephant charge his tusk in the misty mist, or the dusky dusk? What makes the muskrat guard his musk? Courage! What makes the sphinx the seventh wonder? Courage! What makes the dawn come up like thunder? Courage! What makes the Hottentot so hot? What puts the “ape” in apricot? What have they got that I ain’t got?
Dorothy, Scarecrow, Tin Woodsman: Courage!
Cowardly Lion: You can say that again!

cour·age

[kur-ij, kuhr-]

noun

the quality of mind or spirit that enables a person to face difficulty, danger, pain, etc., without fear; bravery.

What Kind of People Have Courage?

Exactly what kind of people have courage? In my opinion, courage is not found in a specific “kind” of person, personality, gender, or culture. Courage can be found in the heart of any individual. Facing life develops courage in our hearts. I began thinking about courage this past week. I was waiting outside a classroom as I had arrived a bit early. I have no idea what kind of class was being held in room 406, but I heard the professor say, “When you think of someone who is courageous, who comes to mind?”

I couldn’t hear all the responses, but some that I did hear included:

men and women in the armed forces

parents

law enforcement officers

and firefighters.

As I sat leaning against the wall eavesdropping on the class discussion, I thought about how I would answer that question should anyone ever ask me.

“People with disABILITIES have courage”

Part of the reason I love Fidos For Freedom so much is that the clients, trainers, and volunteers have become like family to me. There are a number of disABILITIES present in people who are “family” at this organization. People who are “differently-abled”. Some of the clients are deaf (or Deaf), some have balance problems, chronic fatigue syndrome, fibromyalgia, chronic pain (from accidents or illness), CRPS, MS, and the list goes on. No matter the background or current health status of any one individual, one thing I see in the face of ALL is – COURAGE.

How can we be SO different and struggle with such a wide variety of challenges, and yet all have courage? Bill Tipton said, “Increasing your courage to take calculated risks can improve your general well-being and attitude in life. Learning to transform the negative reaction of fear of failure to a positive sensation of opportunity can enhance your chances for success. I believe people with disabilities, or perceived differences, get more opportunities to demonstrate and practice courageousness” (Global Dialogue Center, 2011)

I believe when a person takes a “calculated” risk and strives to improve their life, courage results. I have seen people work very hard to train assistance dogs. I have seen people work very hard to train to be matched with an assistance dog. Different people have different obstacles, but all push on… reaching for that goal of more independence. I’ve seen clients training who are in obvious pain. I have seen people work hard at taking risks and learning new ways of doing things so that they may safely and confidently handle a dog partner. This is courage.

How Does One Find Courage?

Jayne Leone said, “Related to the word courage are the words encourage and discourage. (In fact within the word courage is the word rage.) Think of the times we have encouraged ourselves or encouraged others. Now think of the times we have discouraged ourselves and discouraged others. There are many buzz words being used today — such as empowerment, challenged, support — used by many professionals, when in reality the operative word is courage, encourage or discourage. As we well know, many social institutions can encourage us or discourage us as disabled persons. They can help us be empowered, help us to maintain self-control, help us be self confident, help us gain courage. By discouraging us they can do the opposite” (Independent Living Institute, 1997).

I believe that courage isn’t an attribute one learns and then “ya got it“. I do believe that courage, though hard-earned and a difficult teacher, is practiced by choice on a daily basis. This is why we have “good days” and “bad days”. I think the key to having an abundant life is to have more “good days” than “bad days”, but allow “bad days” to act as a learning experience as well. Let’s face it. We are going to have bad days. Don’t you think the key is in how one RESPONDS to a bad day? Courage doesn’t disappear on bad days. Courage doesn’t guarantee success.

Sometimes? Courage is going to bed after a “bad day”, with resolve to try again tomorrow. Courage means you simply refuse to accept defeat.

The Lion now walked to the Throne Room and knocked at the door.

“Come in,” said Oz.

“I have come for my courage,” announced the Lion, entering the room.

“Very well,” answered the little man; “I will get it for you.”

He went to a cupboard and reaching up to a high shelf took down a square green bottle, the contents of which he poured into a green-gold dish, beautifully carved. Placing this before the Cowardly Lion, who sniffed at it as if he did not like it, the Wizard said:

“Drink.”

“What is it?” asked the Lion.

“Well,” answered Oz, “if it were inside of you, it would be courage. You know, of course, that courage is always inside one; so that this really cannot be called courage until you have swallowed it. Therefore I advise you to drink it as soon as possible.”

The Lion hesitated no longer, but drank till the dish was empty.

“How do you feel now?” asked Oz.

“Full of courage,” replied the Lion, who went joyfully back to his friends to tell them of his good fortune.

Swallow Courage

Ever get caught up in wishing things were different? Do you ever wish you were simply “normal”? (Who defines what is NORMAL, anyway?) I’m at various stages of accepting who I am today. Sometimes I have a clear vision of my “new normal” and seem to understand the “new me”. At other times though? I’ll be honest – I flounder. There is a part of me that wants to “fit in” and do things like “normal” people do.

Why do I have to find batteries so that I can continue hearing when my CI “dies”?

Why do I have to stand and sit slowly?

Why do I have to remove my hearing aid at times when the ear mold leaves a sore in my ear?

Why do I have to use my hands (or Chloe) on the stairs to safely navigate “UP”?

One must “swallow” courage – to believe!

My husband reminded me the other day that even people without disABILITIES struggle with acceptance. As a psychologist, he has seen folks from all walks of life struggle with accepting the way things are TODAY. Age may have made a change in your “normal”. An accident, illness or disABILITY may have changed your “normal”. He said, ““You have differences that make you uniquely you, but that also require some assistance. Without Chloe you’d fall more and miss more. Without your implant you are deaf. You need to accept who you are without apology and stop looking to be treated normally”.

Courage ≠ Never Being Afraid

“But how about my courage?” asked the Lion anxiously.

“You have plenty of courage, I am sure,” answered Oz. “All you need is confidence in yourself. There is no living thing that is not afraid when it faces danger. True courage is in facing danger when you are afraid, and that kind of courage you have in plenty.”

“Perhaps I have, but I’m scared just the same,” said the Lion. “I shall really be very unhappy unless you give me the sort of courage that makes one forget he is afraid.”

You can have courage and still feel fear. The unknown can be a scary thing. When an acquired disABILITY occurs in the life of a person, there are no guarantees things will not get worse. Many have progressive symptoms. Courage does give us the ability to deal with change, however. Few are born with courage. It is a learned skill, an acquired characteristic.

The Cowardly Lion has always been a favorite of mine in “The Wizard of Oz”. I loved both the movie and the books. I smile when he uses his tail to wipe his self-pitying tears away. I grin when he “shakes” in fear of the Wicked Witch and trembles at the sight of the flying monkeys. I know the end of the story. The Cowardly Lion shows courage time and again throughout the movie, putting himself at risk for others and to achieve his own ultimate goal… a gift bestowed from the Wizard – that of courage. Unbeknownst to the Cowardly Lion, courage lay dormant in his fearful heart. He only had to exercise what was already there.

I hope that YOU believe that courage is in your heart. You may not even recognize it. If you take risks and live life “in spite of”? You have courage!

Denise Portis

© Personal Hearing Loss Journal

http://globaldialoguecenter.blogs.com/disabilities/2011/05/courage-enabler-for-people-with-disabilities-or-perceived-differences.html

http://www.independentliving.org/docs5/Leone97.html


 

I Have Meniere’s Disease – Harsh Reminder

Published on by hearingelmo3 Comments

I have Meniere’s Disease. It is easy for folks to forget that as the disease is “invisible”. Amazingly, I sometimes forget I have it myself. So that is just embarrassing! GRIN. Meniere’s disease manifests itself in individuals in a variety of ways. The disease lacks specific symptoms and triggers that are true of everyone. The disease varies person to person. For myself, the weather tends to be a very specific trigger for me. If pressure systems come into the area that include heavy rains or even high humidity, I know that I will have a “bad balance day”. If that day is simply the beginning of a string of similar weather days, I can be so off-balance by day 3 or 4, that I practically have to CRAWL up and down steps. It’s rather embarrassing to crawl when you are 45 – believe me!

Here in Maryland, we have had a significant amount of sunny, low-humidity days. As a result, my balance has been pretty good. Yesterday, I did laundry and actually jogged up and down the steps WITH a laundry basket. Yet I forget sometimes that in spite of my having few visible symptoms, I still HAVE Meniere’s disease even on bright sunny days.

Chloe does a number of things for me, only some of which are hearing alerts (what she was originally trained for at Fidos For Freedom). Chloe has also been trained to help me with a number of “balance assist” tasks which are very helpful on days I am experiencing Meniere’s disease symptoms. As a matter of fact, there are weeks that Chloe actually does more balance work for me than she does hearing alerts. One thing we have taught her to do is to “roll” her own blanket. I carry a blanket that is HERS. The blanket goes to every place I teach. It smells like her and she knows it is her “safe place” to be unless I ask her to do something for me. I usually put it out of the way in the classroom, but where she can easily see me. The blanket and Chloe are usually within 4-5 feet of me at all times. Below is a video of Chloe “rolling” her blanket — she adjusts the carpet square to be high enough that I can easily reach it without having to bend past my limitations.

Harsh Reminders

I get aggravated at family and close friends sometimes when they make suggestions for me to do something or try something that they KNOW I cannot do. It’s easy to forget certain things I cannot do because I don’t walk around with a sign on my shirt that says, “Beware of fall when bending!” You know what? Sometimes the person who forgets what I can and cannot do is – ME. You’d think I’d always be aware of the fact that I cannot bend to get something off the floor without paying the price. For me… bending far enough to retrieve something off the floor means that I lose consciousness for just a few seconds. Everything goes “black” in my vision, and my “hearing” (even with a cochlear implant) turns off. As soon as I stand back up, everything snaps back into focus. If I bend quickly, (for example to try and catch something as it is falling), I usually “join” the item on the floor… only I am sprawled out looking ungainly and mystified as to how I got there.

We’ve had beautiful weather here in Maryland lately. I need to remind myself on days like these that I still HAVE Meniere’s disease. In class this morning, I began gathering my things up to pack into my bag and exit the room. I dropped my roll sheet, so Chloe went over to pick it up and bring it to me (an automatic retrieve). As I was standing next to her pink blanket, I decided to save myself time and reached down to pick up her blanket. I lost my balance and my forehead crashed into the podium. After connecting with a wicked CRACK, the impact popped me back on my caboose. Thankfully, I didn’t lose consciousness. Chloe trotted over to me with the roll sheet and dropped it into my lap. She wagged her tail at me, nose 3 inches from my face.

“Hey Denise! Umm… why are you on the floor?” (Yup. I can read my assistance dog’s mind. Scary, huh?)

“Guess I should have had you roll your blanket, huh Chloe?”

Upon hearing “roll blanket”, she calmly rolled the end of the blanket and then tugged it over closer to where I sat.

I heard a student over my shoulder ask, “Ummm. Mrs. Portis? Are you OK? Was that your HEAD?”

I tried to chirp out in a manner that was convincing, “Oh sure! I’m fine, no problem!”

As I used Chloe in a stand/stay to get off the floor… I thought to myself one word – over and over again.

stupid

Stupid

STUPID!

Harsh reminders are needed from time to time, if not for any other reason than to remind us of the consequences of forgetting our own limitations.

We need to remember our own limitations. As a person with hearing loss, it helps me to remember that I cannot hear well in really noisy, crowded areas. If I need to have a conversation with someone, it is better to ask them to step over to the side out of the “hub-bub” of noise if I need to talk to them. Failure to acknowledge what I cannot do well (hearing in noise) only results in that I will be frustrated and angry at my inability to understand the conversation. If I want to play with my dogs, I need to remember to sit on the floor in order to tug on toys, throw balls, and squeak stuffed animals at them. If I try to “play” standing, I am sure to take an unplanned nosedive.

Have you had some harsh reminders about your own invisible illness or disability? Some lessons are hard to learn!

Denise Portis

© 2011 Personal Hearing Loss Journal

Reflections on National Invisible Illness Awareness Week

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According to the Invisible Illness Awareness website, the following statistics are true:

  • Over 100 million people in the U.S. have a chronic illness;
  • 20.6 percent of the population, about 54 million people, have some level of disability;
  • 9.9 percent or 26 million people had a severe disability
  • 1.8 million used a wheelchair
  • 5.2 million used a cane, crutches, or a walker
  • So that is less than 6% who have a visible illness.
  • There are many illnesses that start out being invisible and as the disease progresses it becomes more visible.

Also note that:

  • 26 million persons were considered to have a severe disability;
  • yet, only 7 million persons used a visible device for mobility.
  • Thus, 19 million of the people who were defined as severely disabled, did not use a wheelchair, cane, crutches or walkers.
  • In other words, 73% of Americans with severe disabilities do not use such devices.
  • Therefore, a disability cannot be determined solely on whether or not a person uses visible assistive equipment.

U.S. Department of Commerce (1994). Bureau of the Census, Statistical Brief: Americans With Disabilities. (Publication SB/94-1).U.S. Department of Commerce (1997). Bureau of the Census, Census Brief: Disabilities Affect One-Fifth of All Americans. (Publication CENBR/97-5).

Why Do I “Plug” Invisible Illness Awareness Week?

I have been trying to raise awareness about this week for three years now. This year, a friend noticed my “don’t miss” posting on Facebook and couldn’t resist teasing me about it. After all, I don’t exactly allow my challenges to be INVISIBLE. I wear a bright red ear mold on the hearing aid in my “deaf” ear. I wear sparkly “bling” on the cochlear implant on my “hearing again” ear. I go about my life accompanied by a hearing assistance/balance assist dog 24/7. I learned long ago that it was in my best interests to make an invisible disability – VISIBLE. It kept me from being knocked out of the way, and helped people realize that something about me is different. I can still work, shop, go to movies, hike, and dance… yeah. OK, maybe not that last part…

I just don’t hear well… especially in big, cavernous places, or busy, buzzing atmospheres. Once you get my attention and I know you are talking to me, I can actually hear you great! I may have to ask for a very occasional repeat, but for the most part I do really well. I’m proud of how far I’ve come in my hearing. Despite all my visible reminders and “kissing sidekick”, Chloe, people who know me well (friends, co-workers, and family members) will forget that I may have trouble if you don’t get my attention first and that I can’t move FAST – ever. Heck… sometimes even *I* forget that I cannot move fast. Nothing reminds me quicker than when I

fall

down

and

go

BOOM!

Through the years I’ve been able to meet some wonderful people. Some examples include:

1) Folks through the training center at Fidos For Freedom.

2) People at Hearing Loss Association of America conventions or conferences

3) “Hearing Again” recipients at Cochlear America conferences

4) Individuals in support groups for tinnitus, Meniere’s disease, hearing loss, and assistance dogs users (both face-to-face and in virtual environments online).

Not every disability can be made visible. Not every person chooses to even try and make something invisible – visible. They have their reasons and it is an individual’s choice how they want to disclose or keep hidden any disabilities they may have. It could influence their work environment, relationships, and even self-esteem. I choose to support ALL individuals who live with chronic illness, invisible illness, or disability. Recognizing these illnesses once a year in a push for national awareness, I hope will eventually dispel erroneous ideas and information about these very populations. This is one of the reasons I “blog”, and invite guest authors to write for “Hearing Elmo” as well. Raising awareness makes a difference… one person at a time.

I read some incredible stories of courage, faith, and perseverance this week at the national website for invisible illnesses. You can check out some of them here. I’m proud to be a part of a community of people who choose to live a victorious life  – “in spite of”.

Take some time this week if you can to recognize the courageous people that you know who live with invisible illness and the choices they have made in order to live life to its fullest!

Denise Portis

© Personal Hearing Loss Journal

“It’s Just Lack of Sleep…”

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

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

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

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

Factor in Invisible Illness or Disability

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

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

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

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

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

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

Denise Portis

© 2011 Personal Hearing Loss Journal

————–

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

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

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

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

Sometimes? There’s Not a Great Solution…

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Chloe doesn't know Spanish...

Sometimes? There is not a great solution available for positive advocacy.

This past Friday, my 21-year-old daughter asked me to go shopping with her. I’m always thrilled when she CHOOSES to spend time with me, so I agreed so long as it was the morning so that we could “beat the heat”. She agreed. She wanted to shop for new “under things” and I knew JCPenny was having a sale on these items. Kyersten, Chloe and I headed for Annapolis Mall to shop.

The bad thing about shopping in the “intimates” department is that there is not much room to maneuver. I was having some difficulty with my balance as well so I was just being extra careful about how much moving I had to do. Chloe does great even in confined spaces with the exception of that tail. I talk to her a great deal while we are out because it helps to keep her attention on me. Kyersten was busy looking at different styles available.  My main job was to offer the occasional opinion and situate Chloe so that her tail didn’t knock things off with her loving “wag”. Chloe may not understand all that I say to her, but she does know her name and will wag as if she is paying attention to everything else I’m saying. Because my attention was on HER, and as we were in “tight quarters”, I was taken by surprise by two little girls who ran up and threw their arms around Chloe’s neck.

One little girl was about 4-years-old, and the other (obviously big sister) was probably 9 or 10-years-old. I stuttered out, “Oh! I’m sorry. She’s a working dog and cannot be petted right now”. The girls continued to squeeze and talk excitedly.

I tried to tune in a bit better and realized they were talking in Spanish. With my heart plummeting to my stomach, I held up my hand and shook my head NO saying, “Please don’t pet her. She is a working dog”.

The older girl stopped and tried to talk to me in English, and I understood “She’s a pretty dog”. At this point Chloe broke her sit/stay in order to break the choke hold. I was unprepared and went to my knees and caught myself on a rack.

With bras, panties, and tiny hangers attached to various body parts, I again held up my hand, shook my head no and said, “No please!” in a very firm voice. As I was still wobbling, I sat on my caboose to get my bearings.

The older girl said, “Oh … sorry” with some other words that I could not make out because of the accent. I did understand that she understood that Chloe was NOT to be petted. In Spanish she (I think) explained to her younger sister about Chloe. I think she realized something was amiss because I was now sitting on the floor with lingerie scattered around me. She left quickly with her little sister in tow.

I had Chloe brace so that I could get up, and asked my daughter to pick up some scattered articles. (Chloe could have, but I didn’t figure anyone else would want dog saliva on merchandise). Right as I was on one knee about to stand, the youngest came zooming around the corner with a squeal to squeeze Chloe again (who was now in a stand/stay and “brace”). I held up my hand and intercepted the young lady and my hand blocked her at the chest. Although I did not PUSH, it did stop her in her tracks. I said firmly with a head shake, “NO!” She turned and ran away.

I did NOT want to place my hands on someone else – let alone a child. I didn’t injure her, but I really felt out of options. I was “rattled” the remainder of the day. I was very upset with MYSELF that the resolution to this problem ended up playing out like it did.

When All Else Fails… Be Firm

I did look around for the youngster and never did see her or her older sister during the remainder of our shopping trip. When something doesn’t go according to plan I tend to beat myself up about it I’m afraid! I kept thinking about other options I may have had, and tried to think of what I might do should this happen again. (I’m open to suggestions – grin).

Sometimes we can try to advocate in a positive way – and the situation may just fall apart. Sometimes? You just have to be firm and resolute. We should always try to be positive and upbeat at the beginning…

“It would assist me in staff meetings if everyone would just pop a hand up before speaking so I can locate who is talking”.

“I can easily do my share of answering the phone if I had access to a captioned telephone that would provide understanding for when I don’t hear everything”.

“She’s not a pet. She’s a service dog and she can come into the store with me”.

Yet there are times we may have exhausted other options and have to stand firm.

“I need everyone to simply pop your hand up with a small wave before you speak. Thanks in advance”.

“I will require a captioned telephone so that I can do my job and share the task of answering the phone”.

“Here is a flier about what the ADA says about my rights. I’ll be over there shopping should you have any additional questions”.

I don’t think ANY of us welcome having to be firm and insistent, but there is a time and place for being firm. I try to always remember that there will be others who come after me that may also have accessibility issues. How I handle a situation may condition someone with normal hearing to respond to the next person they interact with who has a disability. There are times, however, when all pleasant and positive avenues have been closed to you. Even in your firmness… keep your cool. Keep it short and stick to the facts. My husband grins and tells me, “Denise! TMI. Keep it short! They don’t care about your background or care to hear your story”!

Accents, Foreign Languages, and Hearing Loss

The great thing about our country is the diversity. Because of where I live there are a large number of minority populations who speak English as their SECOND language. I do not speak an oral foreign language so I’m a little jealous of those who can! My mother taught high school Spanish for over twenty years, but her children never learned (much to her dismay). I have a lot of respect for people who speak English as their 2nd language. It is difficult, however, to understand language when an accent distorts the way a cochlear implant and/or hearing aid pick up the words. I have trouble understanding people with thick accents that may speak PERFECT English. I even have problems with American accents such as folks from Boston, Texas, etc. (I understand “Southern” as I lived there for so long!)

However, the fact that I have difficulty with accents, is MY problem. People with hearing loss should have patience with those who speak other languages as their primary language. I have heard late-deafened folks demean and criticize those who speak other languages. I always think to myself, “Really?” It is far more productive to explain that you have a hearing loss and have trouble understanding when an accent is present. Let them know that you are aware it is your problem, and pleasantly ask if they can perhaps speak slower and face you when they speak. I’ve overheard HoHearies blast people with heavy accents – as if it is THEIR fault! Always – ALWAYS – remember you are an advocate for others with hearing loss whether you signed up for it or not! If you are negative, critical and defensive, you are having a negative influence on how the rest of us are treated in the future. Yes, it can be frustrating and even embarrassing to have to ask someone with a heavy accent to repeat themselves again and again. But “own” the problem as yours – it isn’t their problem. It’s a big thing to be fluent in more than one language, so treat them with the respect they deserve.

Denise Portis

© 2011 Personal Hearing Loss Journal

“Tag” You’re IT

Published on by hearingelmo1 Comment

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

Disabled (Grimace)

Published on by hearingelmo7 Comments
Denise and Chloe at a dAP for HLAA-Frederick County in 2009

Disability (grimace). There is a small part of me that cringes when I hear that word, for often it is heard with real (or imagined) inflection that denotes a negative meaning. Occasionally, I get some “flack” from some of my readers about using the term “disability” so freely. Some folks hate the word and avoid it all costs. Others embrace it freely, caring not what the “label” may be since they are struggling to simply cope with WHAT IS. Recently, a fellow client at Fidos For Freedom used the term “differently abled”. I like that! That is the first time I’ve heard that particular variation. At Fidos For Freedom (where my hearing assistance/balance assist partner comes from), numerous programs are designed to carry the maximum “punch” in creating awareness in our community. One program is the dAP (disABILITY Awareness Program). Demonstrations are given at schools, churches, community groups, fairs, and much more to inform and teach the public about the different types of assistance dogs available, partnered with people with various disabilities. The program focuses on the abilities of all people and how an assistance dog can provide independence to people who do things “differently” as a result of chronic disease, invisible disabilities, hearing loss, mobility challenges, and much more.

Personally, I use the word ‘disabled’ freely for it is the wording in the Federal law that protects my rights as an individual who happens to have disabilities. As long as the law uses the term, I will continue to use it in order to identify with my freedoms – not my actual disability. I’m all for changing the term “disability” to something less negative, but until that happens on the federal level – I’m sticking with the term that protects my rights. Labels are awful aren’t they? I actually prefer “person with disabilities” for it identifies me as a person FIRST, and the disability second – as a descriptor, not a noun. I’ve been a member of the American Association for People with Disabilities for a number of years. They have done a lot of terrific work in laying the foundation for future laws that protect Americans who happen to be “differently abled”. Do I hope the word is eventually abolished and changed to something more politically correct? Well sure I do… but in the meantime I will continue to use a word that represents my freedom as an individual with disabilities.

Why is the Word So Negative?

Many people who hate the word “disabled” explain that it reminds them they are different. Yet we are. Acceptance of that is key IMHO to truly becoming independent in spite of a “disability”. One reader explained, “the word makes it sound as if I’m broken, or flawed”. It’s a shame society (and sometimes our peer groups) create this false picture of what a disability is. Often these negative connotations are the result of interactions with people who do not live with physical, mental, or emotional limitations that require a “new way”. People can be uncaring and mean (and you don’t have to be in junior high to experience this!). Sometimes the most hurtful things are said by people who actually care about us and are struggling to understand. Ignorance (not stupidity) is often to blame. It’s very difficult – but when you have the opportunity to correct and inform someone who doesn’t get it, do so in a proactive (not reactive) way. I try to remember that what I say may influence how this person interacts with someone else who has a disability in the future.

I believe that those who are born with a disability have the hardest time accepting the term. For example, I have met culturally Deaf people who really despise the word. (The culturally Deaf are identified with a capital “D” to identify a group of individuals who use ASL as their primary means of communication). I’ve often wondered if deaf people (lowercase “d” to identify adventitious deafness) are more accepting of the word because they experienced “normal hearing” for a time and now understand the difference because they are living WITHOUT a sense they once had? I had a Deaf friend at CSD complain that the word “slapped them with a label that meant they couldn’t do something”. I have struggled to understand that. Deaf (and many deaf) people cannot hear. What is wrong with that? Perhaps their thinking is that by accepting that label it requires the adoption of a number of other labels such as “slow”, “dumb”, “broken”, “reject”, “mistake”, and “different”. People who cannot see well without corrective lenses don’t fear being labeled with other words! Why do people with hearing loss fear that? I don’t hear in a normal way. So what?

I’ve heard others mention that the word makes them remember there are things they cannot do. I recently watched a YouTube video of a young Deaf lady who was “going off” on the fact that the only thing she cannot do is HEAR. Anything else she wanted to do she could, and she was not “disabled”. Yet the ADA protects her rights as a Deaf person to insure she has equal access to public events, education, doctor visits, and much more by requiring ASL interpretation so that she may interact on equal footing with those who use their voices to communicate. I suppose I’m a realist. I don’t understand the problem with being aware of what I cannot do. I understand that as a result of Meniere’s disease and hearing with a cochlear implant I will never:

  1. Be a rollercoaster tester.
  2. Wash windows on skyscrapers.
  3. Be a DJ
  4. Be a judge on American Idol
  5. Swing on a swing set (until they come up with an adult size seat similar to the protective seats for toddlers!)
  6. Tune pianos
  7. HEAR without the assistance of my CI

So what? I don’t center my life around this knowledge, nor do I attach any value to “being able to” as opposed to “not being able to”. I chose to enjoy OTHER things. 1) When I go to amusement parks I’m the official photographer. I ride a great number of rides that do not go “around and around”. I can throw a dart that insures I come home with large, ridiculous stuffed gorillas. 2) I can wash windows on lower levels. 3) I can listen to music and “ad lib” as best I can, but if it is a new song I’m lost. 4) I can be a judge on other types of panels. 5) I can climb on jungle gyms. 6) I can PLAY the piano (took 8 years of lessons!). 7) I can hear SO MUCH now as a result of my wonderful CI!

I believe that problem is that OTHERS often attach other meanings to the word “disability”. When they choose to do that, it fosters an attitude of treating a person with disability differently, or of having different expectations of them. Is this where the word “goes wrong”? I welcome your feedback and comments. As long as you don’t swear at me – I’ll post anything even if it disagrees with my own personal opinion. After all, if my desire is that you respect my opinion I can only promise to do the same. So many of you write me to give me “thumbs up”, or “thumbs down” in response to a post. I still welcome feedback privately as well! However, this is a topic I really welcome your feedback for I really am trying to understand everyone’s opinion about this word. I believe voicing opinions about this may help others! So “voice yourself”!

Denise Portis

© 2011 Personal Hearing Loss Journal

We Are All Ambassadors

Published on by hearingelmo3 Comments

We are all ambassadors… of SOMETHING.

We are a living, breathing, advertisement of “something”. How you choose to live your life, and how that choice is reflected in your daily interactions with others is so important. We don’t realize when someone is watching, listening, or studying how we live. I think it is so important that people with invisible and visible disabilities live their lives in a way that reflects how their disability doesn’t overshadow their abilities. I suppose being a mother I have always been cognizant of “who is watching”. But now that my kids are grown and in college, they rarely study mom and her life anymore. Others are watching, however.

I shouldn’t be surprised when people stop me to ask questions or make an observation. In spite of having invisible disabilities (“hearing again” with a cochlear implant, and Meniere’s disease), I try to make them visible so that I’m not taken by surprise by not hearing something or getting bumped by “I’m in a hurry” people. I wear “bling” on my cochlear implant to draw attention to the fact that I hear differently than folks with normal hearing. I am with the constant companion of my hearing assistance dog, Chloe. Let’s face it. Nothing draws attention to “something is different about me” more quickly than entering places of business with a service dog. But in spite of my own mom’s occasional teasing of “you’re such a drama queen”, the biggest reason I am visible about who I am is because I’m not ashamed of it. I welcome questions and curious people. Hearing loss is so misunderstood. People seem to understand the culturally Deaf. People born deaf and then choose to embrace American Sign Language as their primary means of communication seem to be understood better than those who are adventitiously deaf and choose technology, surgery, speech reading, and spoken language.

Baby boomers were recently cited as a fast growing “hearing loss” crowd. (Story can be accessed here). Yet young people are part of a new (and alarming) growing crowd of individuals with hearing loss as the result of iPods, concerts, and environmental noises. (Story can be accessed here). I am proud of my cochlear implant and proud that I am now independent thanks to the assistance of my service dog. I don’t have to worry about what I am not hearing thanks to her alerts, and I know if I drop something she will be right there to pick it up for me. I like being an ambassador.

It’s not always easy. Sometimes I’m in a hurry and do not really want to stop to answer questions. That’s why I try to carry my card with me so that people can contact me through email. I also carry information about my cochlear implant and information about Fidos For Freedom. (We discussed how to handle questions when in a hurry at a recent client chat at Fidos For Freedom!) In this way, even when I am in a hurry I can still be a good ambassador for people with hearing loss and people with service dogs. Am I always a good ambassador?

No. No one is perfect. You are going to have “bad days”.

In spite of those bad days, however, I encourage you to remember that people watch you. Some are people who know about your invisible or visible disabilities. Others may be folks who know nothing about you. I love meeting other “great ambassadors”. If we ever “meet up” in public, don’t be surprised by a HIGH 5 from me!

Denise Portis

© 2011 Personal Hearing Loss Journal

On the Level

Published on by hearingelmo2 Comments

The “cheap” level I purchased this weekend.

We recently moved to reduce my husband’s daily commute from 3 hours to 10 minutes. In moving, things are often “lost”. A phrase often heard in our house lately has been “It’ll turn up!” Although cheerfully voiced and repeated with conviction, over the last 6 weeks there have been some items that have not turned up. One such item was the “level”. It was a really nice level too – approximately 18 inches long and very well made. I know that Home Depot advertises these digital gadgets that use an infra-red beam to determine – “level” – but I want something I can wrap my arms around and move around as if I need a hard hat and knowledge of construction! I have neither… but I like the illusion!

Anyway – I digress…

In the move, my husband and 20-year-old son put together a new T.V. stand for our 42-inch flat screen. The first time I sat down to watch a taped “favorite” I knew something was wrong.

“Umm… honey? The screen is crooked” I announced with confidence.

Terry did get up to stand in front of the T.V. with a critical eye, but explained with some assurance in tone and stance that, “It isn’t crooked. It’s fine!”

I gave him one of THOSE looks. You know the kind where you don’t actually SAY anything, but yet SAID a lot?

“Besides”, he teased, “how can YOU say whether or not anything is crooked or straight?”

“My world may revolve, but it isn’t skewed,” I retorted.

Over the next 3 weeks I continued to insist the screen was crooked. I watch very little television and what I watch is usually a taped show. When I sat to watch a taped cooking show or “Bones”, I didn’t want to have to turn my head to watch it “straight”. I was starting to let my frustration show that I seemed to be the only one who noticed the screen was crooked. Determined to prove my own “sense of level”, I went in search of our – erm – level.

It’s very frustrating to go through every nook and cranny of a new home looking for something you clearly remember packing and not finding the item! While picking up a few things at Wal-mart this weekend I got my husband’s attention as I headed for the hardware section. “I’m getting a cheap level,” I announced with NO ROOM for argument. He rolled his eyes but followed Chloe and I to the hardware department.

Ignorance is Bliss

When we got home, Terry and I unpacked the Wal-mart bags. I was busy in the kitchen when I caught sight of him in the family room standing in front of the T.V. He was putting the level on the television stand and then the T.V., all the while looking very thoughtful. I walked over to see if my sense of “level” could be trusted.

“It’s crooked,” he admitted with some surprise.

I tried very hard not to crow, for I’ve never done “chicken” very well. “Yes, honey. Do you think you can fix it? It is driving me bananas!”

“Oh sure I can fix it, but I’ll need Chris’s help. I’ll get it done this week,” he promised.

Do you know that over the last 2 days I have caught Terry standing in front of the T.V. numerous times with his head tilted? Ignorance is bliss. Now that he KNEW it was crooked, it seemed to exasperate him as well. The T.V. hasn’t MOVED or been ADJUSTED, yet now it seemed to really distract Terry too.

What “Bugs” Me, May Not “Bug” You

If you follow this blog because you have an invisible disability or service dog you will recognize a theme that often shows up here. No two disabilities are the same. Even folks with hearing loss have differences that make their hearing loss – or “hearing again” unique. I have become “pen pals” of a sort with numerous people who have Meniere’s disease. Yet I have never discovered any one individual who has exactly the same triggers as I. Through Fidos For Freedom, I have met a number of individuals with Multiple Sclerosis, mobility issues, deaf or hard-of-hearing, suffer from fibromyalgia, or other invisible “enemies”. I have learned that what may “bug” me may have no influence on someone else who may have a similar disability.We are as unique as our disability and abilities. I for one, like it that way. Something may look “crooked” to me and in need of straightening, but it may actually be fine to someone else.

I think we have to be very careful about assuming that every individual with a similar disability lives life the same way – experiencing the same frustrations and triumphs. The late-deafened crowd can be very bad about this as hearing loss is not “one size fits all”. Frequency, pitch, and decibel levels are all experienced differently by folks with hearing loss. Those of us who use cochlear implants and/or hearing aids may not experience the same benefit as another whose audiogram may look very similar. A listening environment may be very difficult for me because of the level of background noise, but you may be able to tune out things very easily with a specific “map” of your own CI.

Yesterday in church I experienced a painful reminder that what is “level” for one person may not be “level” at all for me. After church, the organist plays a piece of music as everyone leaves. People do a quick “catch up” with those around them or greet newcomers. Can I be honest a moment and say that it is all I can do not to wince when the organist begins to play? I try hard to control my expression, but I found myself gripping my hands together as I tried to make out the voices around me while my CI picked up the organ music loud and clear and deciphered the sound as best it could. I felt the hair on my neck stand up and …

I didn’t even know I had hair on my neck!

A plan of action is needed… I’m going to turn my CI off immediately after the service and just read lips.

If I tried to explain to someone else with hearing loss, they may not understand what the problem is and do just fine in that listening environment. As a matter of fact, I have noted a number of hearing aids in ears around me in the auditorium. They aren’t snatching the technology off from behind their ears and running from the auditorium screaming like a maniac. As I inwardly “shackled” my own maniac I couldn’t help but wonder how they did it. How can this surround-sound, swelling noise be ignored while they focused on actual voices around them?

Easy.

What was “crooked” to me was “on the level” for them. No adjustment necessary! We really have to remember that. I think it all boils down to:

1. Learn to communicate your needs clearly so others may adjust to best help.

2. Respect another individual’s choices and decisions made to find true accessibility.

Sometimes not much can be done to “straighten” what is crooked. Then our responsibility changes. I hope I can be gracious and accepting about things that cannot be “fixed” or “changed” to best meet my hearing and balance needs.

Denise Portis

© 2011 Personal Hearing Loss Journal