The Two Sides of Me

Published on May 23, 2015May 23, 2015 by hearingelmo6 Comments

I work as an adjunct professor at a local community college. This year I was thrilled to participate on the “Year of Social Justice” committee and to head up one of the major activities for the year – “disABILITY for a Day”. The students were given 5 disabilities to choose from, and were to experience a day of class rotation with the chosen disability. We limited the options because we did not want students (for example) choosing a mental illness and inadvertently feeding the stigma of various diagnosis. The students were to then answer 10 response questions and write an essay about the experience; or, create a video segment on their experience. If a student had a disability or invisible illness, they could do the activity “as their norm” or choose something different.

I received a number of finished products from some of my own students, some of whom I had no idea had a disability or invisible illness, and a few that I did. With permission, I am sharing part of that response (and leaving out names and identifiable descriptions).

An Invisible Influence

While I consider myself a person with invisible disabilities (profound hearing loss/hearing again bionically, and Meniere’s disease), I have worked very hard to make the invisible – VISIBLE. I learned in my late 20’s, that it served in my favor for people to recognize that I did not hear normally nor move normally. I do this by “BLINGing up” my cochlear implant, using a brightly-colored cane, and going about my daily life with a service dog by my side.

Although I have “been out of the closet” for years, there are more subtle things that I do not even realize are an influence for others who are struggling. I’m open about my challenges and actually have to work hard at not using too many personal illustrations throughout my lectures. (It’s one thing to educate your students about the disability community, and another to overwhelm them with details).

When I stumble, I usually say, “Woah!” and then grin super big and ask “would you like to see the rest of the dance?” I giggle at myself. Genuine, embarrassing/snorting giggles. If I turn too quickly towards the white board and slam into it, cheek first, I would have a spiffy comeback sometimes such as “ouch… up close and personal”. At times I would simply say, “Crap. It’s gonna be one of those days”. My students knew when I was having a particularly bad day because I would sit during most of the class, or simply announce that I was going to limit motion today (so please come to ME-smile).

One day in class, I reached to pick up a paper clip that I did NOT want Chloe to retrieve and fell on my face to the floor. Several students were there in seconds lending me a hand to resume my vertical stance. After hearing a couple of times, “Geez, professor. Ask for help”, I learned that I could ask for assistance when my service dog could not do so safely, and no one minded at all! I work hard at being transparent. I simply didn’t realize how well students with disabilities could see right through some of the “stuff” I used to advocate in a positive way.

I had a student this semester with visible disabilities, hidden and covered up to make them as invisible as possible. The student sat on the front row and wore a hoodie the first couple of weeks of class. It hid her face and her torso. I saw a transformation in this student in only four months. It wasn’t until the “disABILITY for a Day” assignments were turned in that I understood the why behind the change.

By the end of the semester, the hoodie was gone, she sported sparkly jewelry that actually drew attention to some of her challenges. She smiled (and golly did she have the most beautiful smile). She talked to everyone in her vicinity in the classroom. I saw students come up and hug her at the end of the semester and exchange phone numbers. The following is part of what she shared:

The Two Sides of Me

I always tried to hide my disability. In public I would cover up as much of me as possible. My face could be seen and I’d smile when someone looked at me. I would never allow them to look to long. In reality, I was broken, scared and even scarred. I have a professor who embraces all that she is, disabilities and all. I’ve seen her put other people’s unease at rest. She cracks up at herself. When she is having a bad day, she says so but continues to do her thing and teach. She never makes us feel sorry for her on her bad days. I’m not sure how she does it because one thing I hate is pity. Maybe it is because she is real when she is having a good day or bad day. I’ve heard her use the words “differently-abled”. She says she borrows it from a lady she knows with incredible courage and strength who lives with significant challenges. I don’t know why I’m 19 and only now figuring out that I’m differently-abled and not disabled. I have now learned to tell my family or close friends that I’m in pain or having a bad day. I don’t let it drag me down though. I have really good days, too. I’ve even learned how to put on make-up with one hand. Yay, me! There are two sides of me, and I like both sides.

I Get it Wrong – So Will You

I don’t share any of this to “toot my own horn”. As a matter of fact, I’ve made so many mistakes. For example, I had a student ask me this last semester, “Are you OK, today?” “Sure,” I replied with false sincerity. “Bull****”, they replied.

Busted.

I share this post today for one reason only. You often aren’t aware of your own influence.

Do you have a tough life? Be genuine, but live as if you are being watched. Be real, be transparent, but remember that someone somewhere is taking notes.

“Denise, you have no freaking idea what it is like. You have plenty of support. You have a job. You have friends”.

Yes. I hear from disgruntled readers from time to time that I cannot understand what it is like to experience the hardships they face. They are right. Their challenges are not my own. I know that I do NOT always have good support and feel alone. I have a job, but it is really hard to go to work some days. I have friends, but only a few that I could actually say, “please help me”. I don’t want anyone to ever think that I do it right all the time. If I was perfectly at ease with who I am and comfortable in my own skin, I wouldn’t be seeing a counselor twice a month. I have major depressive disorder and it is very closely linked with my disabilities. I do not want anyone to think I do not struggle – for I do. My motto is “I have disabilities; my disabilities do not have me”.

Live your life – that’s right, the one that is often TOUGH – as if someone was watching.

Someone is.

Denise Portis

©2015 Personal Hearing Loss Journal

“Family”

Published on June 28, 2011 by hearingelmo3 Comments

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

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

Hearing Loss Association of America

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

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

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

Fidos For Freedom, Inc.

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

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

Sometimes FAMILY are not “Family”

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

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

Look for – and BE – “Family”

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

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

Denise Portis

Fallow Ground

Published on November 15, 2010November 15, 2010 by hearingelmo3 Comments

I have really enjoyed FaceBook and reconnecting with old friends and family. However, FaceBook gets a lot of “flack”. My husband wrote a terrific, short post on his blog about this very topic and you can view it by clicking here. FaceBook has become much more than a way to “re-connect”. Because it is so simple to use, I use it connect to people I care about every single day. One can quickly see what people in your life are up to and honestly? It makes it easy to write a quick word of encouragement.

It also has some games. I’m not a big game person, but FarmVille is a popular one. I’ve become a little complacent about my own “farm”, but it is still fun to check in each day. I allow much of my farmland to be “fallow”. My busier, more industrious farming neighbors will “drop by” from time to time to take care of my fallow ground and plow it for me. If I’m really lazy and don’t plant anything, they will also fertilize the newly tilled ground.

I get tickled at the fact I don’t have to do a whole lot of work to my farm some weeks. At times, I wish that fallow ground would stay that way because it saves work for me later. (Like I said, I’ve become a lazy farmer). I grew up on the farm. Fallow ground is an important part of farming. Sections of farmland are intentionally left unplowed and unseeded during a regular growing season. Even though it is undeveloped, it is potentially useful to the farmer because it allows the ground to “recover”. The stubble left over from the previous harvest will break down and leave valuable nutrients in the ground. Because of my own sections of fallow ground on FarmVille, I have been thinking quite a bit about the concept of fallow ground.

Fallow Ground Symbolism

The Bible mentions fallow ground in Hosea 10:12 and Jeremiah 4:3. In both places it talks about breaking up the fallow ground as a word picture of cultivating your heart and life so that you can serve and minister to others. It lends the idea that a heart or life can be “hard” and unusable.

For a farmer, however, fallow ground IS useful. I am a big supporter of taking time off and having a designated time of reflection. Perhaps it is because I recognize that we are all way to BUSY. I have been emailing a lady in her 30’s who is a referral from Johns Hopkins Listening Center (their cochlear implant clinic). I’ve agreed to be a mentor and contact for people who are considering cochlear implants. (I’ve asked her permission to share this). It is difficult to be blind-sided by an acquired disability. Sometimes, the change can be sudden, extreme and permanent. Sudden sensorineural hearing loss (SSHL) had robbed this lady of her ability to hear well. She is feeling overwhelmed and at the breaking point. Her life has been in over-drive for some time, and SSHL made her feel like someone had “jerked the carpet out from under her and she lay dazed staring at the ceiling” (her words).

I said, “What you need is to allow some fallow time in your life. You are so busy and yet trying to cope with a major life-altering change. You are giving so much of yourself to so many others, you aren’t even able to weigh the pros and cons and investigate CI’s. I recommend taking time off. Allow your life to go fallow for a designated time. You need this time to re-group, think, and rest”.

She is now doing “just that”. She isn’t WASTING time. She is deliberately taking some time for herself so that she can work through her thoughts, feelings, and investigate cochlear implants.

“Fallow” is not Wasted

I think more people should determine to take time to reflect. I try to meditate and pray at least once a day. There are occasions where I take longer periods of time. But let’s face it… most of us are too busy to really have the time for reflection. What can we do about this?

This is an unpopular idea, but I firmly believe everyone should step back from “all their extra-curricular activities” from time to time. I believe elected (and volunteer) community service, non-profit, and support group positions should have specific limits on terms of service. It forces a change in leadership and allows over-worked, committed volunteers to rest (provided they don’t launch themselves into some new role).

Before insecticides and chemical fertilizers, more farmer’s left ground fallow to aid in replenishing the minerals that occur naturally from “resting the ground”. Today, leaving ground fallow may cut potential yield and profit. I believe that too many of us believe the same in our lives. If we do not keep volunteering for everything, who will do the work?

I had a real test of this in 2010. I have been told by folks I respect that, “If you step down from a leadership role, the vacancy allows God to fill it with someone He has already prepared for that position”. In 2010 I would be beginning the last year of school, and just simply could not lead my local chapter of the Hearing Loss Association of America. Numerous personal reasons and simply feeling BURNED OUT had me dreading yet another year of having to step up in a leadership role. The young mother who had taken the “reins” for 2009 had done an excellent job. I made the mistake of simply “moving” my available volunteer hours to another position of leadership within the chapter. As 2009 came to a close, this busy young mother wisely chose not to run another term. I was getting some pressure to step back up to “the plate”. Because I knew what this last year would entail for me I had to really think about it. Because I was already weary, burned out, and overwhelmed, I decided to put a “year sabbatical” to a vote for the chapter members. Incredulous that I was not going to step up and fill the vacant role, they unanimously but grudgingly agreed to a “year off”. I could tell that many were worried! We have elections in October and November each year. I actually had high hopes that God would press on someone ELSE’S heart the desire to step forward so that our chapter would not really have to close for a whole year.

I waited.

No volunteers stepped forward.

I “stuck to my guns” and we entered 2010 only meeting virtually. You know what? We didn’t “fold”, nor close our doors. As a matter of fact, numerous people once in leadership roles really needed this year off for various reasons. Elections are already underway for 2011, and we have a wonderful lady who is now able to devote her time and resources to leading our chapter in 2011. She wasn’t available last year. She needed this year off too!

I felt a little bit of pressure from well-meaning “others” to step back into the role of newsletter editor for 2011. I chose not to do so, simply because I know what my 2011 is gonna “look like” (to some degree… like many of you it is the part I DON’T know that causes significant stress – grin!). I need a “fallow” year. I’ll be finishing up school soon and will be starting to put an effort into finding that career… that position that helps shape a “better me”. Really this last year my free time was taken up with doing school! Next year? I need my life to become “fallow” in terms of allowing a rest and reprieve from even worthwhile activities and groups of which I am passionate about. I’ll still be an HLAA active member and participant, but my free time I need to be “me time”. I feel undernourished. I refuse to feel guilty.

How about you? Do you feel guilty when you aren’t OVER-involved in important, mission-minded organizations? Do you feel like you have to say “yes” to everything? Do you yearn for a bit of quiet and time to rest your soul, mind, and body?

I came across a poem written by a lady I know from FaceBook. (Like I explained earlier FaceBook is far more than reconnecting with high school classmates). She wrote a beautiful poem that I really felt “fit” the idea of needed and necessary “fallow” time in life. She agreed to let me share it here at Hearing Elmo.

Ocean’s Healing Grace
by Nancy Wilder
a lone figure sits easily on the sand
bare feet playing tag with icy foam;
so small in this vast ocean panorama
she gazes out over the horizon hues.

heart heavy and a mind in turmoil
sand and surf her refuge of choice;
breathing in the strength of nature
an open invitation for healing balm.

dawn has come and turned to morn
gray sky meets water in chilly repose;
pretty escape is not what she requires
peace provides nourishment to heart.

slowly the small figure begins to ease
battered mind gently clears in relief;
absently tiny fingers draw in the sand
as gulls dive for their morning repast.

the ocean’s healing grace envelops
urging an embattled soul to find joy;
life’s small blessings are apt minion
to supply happiness on daily course.

acceptance calls a smile to gentle lips
as she stands, the sun kisses the sky;
twirling gaily she casts away sadness
her heart and mind embrace a new day.

If you are feeling overwhelmed and near burn-out, I challenge you to allow yourself to become “fallow”. Don’t falsely bully yourself into believing this time is wasted. Go find an ocean…

Denise Portis

Community

Published on July 7, 2010September 2, 2010 by hearingelmo4 Comments

acceptance 013 — I don't exactly blend into the background...

Recently Chloe and I were at our neighborhood grocery store. I rounded a corner and came face-to-face with a young boy approximately 6-years-old. His eyes grew wide as saucers and his mouth dropped open. Curious, I looked around quickly to make sure his astonishment was at my own appearance and not on someone in my vicinity. Since it was just Chloe and I… I surmised he was surprised at ME. He looked at Chloe carefully and read her vest. I could see his little mouth sounding out the words on her vest. I could “see the light bulb go on” for him about what Chloe does as her job. He took a step to the side and leaned so as to better see the side of my head. My smile let him know I was OK with that – I even turned my head so he could better see the cochlear implant. His answering smile seemed thrilled to understand as the result of his attentive perusal. I wasn’t prepared for what happened next. So unprepared was I, my own mouth dropped open in surprise!

A lady who looked like she’d lost a 7-year-old boy came around the corner in a near trot. She stopped dead in her tracks and looked with relief on the boy and waved at him to “get over here“. He shook his head “no” and signed, “Look (towards me)! Cochlear Implant receive me, able dog own can/able? yes?” His mother practically interrupted his sign and shook her head NO.

She signed back, “Dog want – cochlear implant want not. Appear normal important!” She took him by the hand and drug him away to the cereal isle. I stood there for a few minutes digesting what I had over – erm – HEARD. Obviously, she didn’t realize I am fluent in ASL. I stood there … in all my NOT NORMAL glory… not fitting in… while Chloe sat and stared at a box of Uncle Ben’s rice that happened to be nose-level.

I was speechless! For those of you who know me – well that is a RARE THING – THAT! I finished my shopping in a near-daze.

Not Normal

I wear “bling” on my cochlear implant and have a bright, red ear mold on the hearing aid in the opposite ear. I have an assistance dog who alerts me to direction, sounds I miss, and helps me with balance related tasks. You can look at me and guess pretty quickly there isn’t a lot NORMAL about me. But that isn’t because I have a hearing loss and balance problems. Plenty of people wear cochlear implants or hearing aids. Plenty of people have balance problems. I believe my not being “normal looking” lies in the fact that I make sure my invisible disabilities – AREN’T. There are numerous reasons for that… likely best left for another post. It is in my best interest to be visible. It keeps me from getting injured – although it doesn’t guarantee that.

Not everyone with hearing loss chooses to be as visible with bionics or assistive listening devices and technology. Not everyone with Meniere’s disease is partnered with an assistance dog. Yet this works FOR ME. I’m happy, confident and independent. Isn’t that what every adult wants, after all? Sure – like everyone I have things I am dependent upon. My faith – the love of my family – connections with others. However, what I choose to use in order to live my life independent of the help of others is my desire. I’ve taken steps that I felt were necessary to ensure that independence.

A “Brag” on the Hearing Loss Crowd

Can I just brag for a minute? Do you know that I believe people with hearing loss tend to be more accepting and understanding about differences than any other group? I am MOST at home in a crowd of people who all have hearing loss yet are extremely different.

Some have assistance dogs

some “sport” various CI’s represented by all three manufacturers of cochlear implants

some have vision loss as well

some have hearing aids

some wear neck loops and are using assistive devices

some use sign language

some carry notebooks and READ and WRITE messages…

Yet I am at home among this group. I was reminded of how at home I feel after enjoying the numerous pictures taken by friends who were able to attend the recent Hearing Loss Association of America convention in Milwaukee. Everyone “fits in” at these conventions. It’s much like a family reunion. I don’t agree with everything HLAA does, nor do I believe they always seek to fulfill their original mission. But one thing HLAA does very well is – COMMUNITY. Through forums, live chats, national conventions, state conferences, local support groups, and the Walk4Hearing, HLAA provides community to an every-growing population of people living with hearing loss. Being a part of this community encourages people to do more than live with hearing loss. This community encourages LIVING WELL with hearing loss. I think we all want an abundant life!

William Mather Lewis: The abundant life does not come to those who have had a lot of obstacles removed from their path by others. It develops from within and is rooted in strong mental and moral fiber.

Socrates: Living well and beautifully and justly are all one thing.

Latin proverb: While life lasts let us enjoy it.

Denise Portis

“Play Your Own Hand”

Published on June 11, 2010September 2, 2010 by hearingelmo4 Comments

Play Own Hand — My Mother at Harper's Ferry, WV, in June of 2010.

My parents came to visit last week as they wanted to attend my son’s graduation. They live in Florida, so it was great they could stay awhile after Chris’s ceremony as we don’t get to see them that often. Mom and Dad live in a gated community in Florida. They play cards there… a LOT of cards. When they come, they often teach us a new game. That may seem pretty “ho-hum” to most of you, but I grew up in a household that played ROOK and Gin-Rummy. That Mom and Dad come and teach us brand new games with elaborate sounding names like Shang-hai Rummy, we are pretty thrilled. It gives us a chance to sit around the table and visit while playing cards each night.

They brought a new game with them this time called “Bohemian Poker”. It was really fun, and the hands are relatively short so that those of us with short-attention spans can concentrate. Without going into the details of how the game is played, mom reminded us all through the game (usually after a mistake was made) to “play your own hand”. Eventually I was able to do just that, but it did take quite a bit of repetitious reminding on her part.

The opposite of “playing your own hand”, would be to look ahead at the person or persons after you and intentionally play in such a way that they do not benefit from your play. Some players go so far as to collect more points in their OWN hand to keep others from benefiting from their play. (The object of Bohemian Poker is to have the FEWEST points). Mom reminded the novice players at the table to concentrate on what would benefit them the most… to not look at other’s hands, and concentrate on your own. I suppose another way of putting it would be to “mind your own business”!

So freshly ingrained is this new phrase, I have been thinking about how that applies to so much in our life. With her permission (and blessing) I decided to blog my thoughts on the idea!

What It Is NOT

“Play Your Own Hand” does not mean that you intentionally live an isolated, segregated life. It does not mean that you ignore the needs and problems of others and concentrate on taking care of your “own” exclusively. It does not mean that when we see an opportunity to serve or minister in our community or circle of friends, that we do not reach out to those we see in need.

“Play Your Own Hand” does not mean that you do not make short-term and long-term goals, for in truth, both are wise practices in the life of any adult. Sometimes those goals include relationships with others, and so we must determine how our goals affect those who are in our circle of influence.

What It DOES Mean

I believe that “Play Your Own Hand” teaches the following lessons:

1. Pay attention to what God has given you to do. Don’t worry about what others are doing as it is not your responsibility. Your choices, decisions, and planning ultimately affect YOUR life.

2. Don’t live defensively, countering wise decision for your life in order to keep someone else from benefiting.

3. There are gambles in life. They can be both exciting and nerve-wracking. May the chances you take only influence you, unless some benefit or blessing is passed on to another.

4. If someone you care about is ruining their life, try to be a good influence… pray for them… encourage them. But don’t allow their problems to become your problems. They may have some hard lessons that need to be learned through reaping the consequences of their own decisions.

Hearing Loss – So Much Variety!

I have met a great number of people with hearing loss through the years. Through speaking engagements, conventions, online support groups, HLAA and other hearing loss venues, I have discovered that hearing loss is not “one size fits all”. I have Meniere’s disease as well, and am amazed at the variety of symptoms and triggers individuals who struggle with this disease exhibit.

I have also seen people with hearing loss criticize decisions others have made to best cope with their hearing loss. Those who are pro-ASL, often butt heads with those who are anti-ASL. In my opinion, it makes both crowds… BUTT HEADS. Some people choose to use technology, or to be surgically implanted with a cochlear implant. There are three cochlear implant manufacturers. I have seen “CI Wars” both in forums on the Internet, and also face-to-face. Cochlear Americas, Advanced Bionics, and Med-El seem to have enthusiastic and loyal recipients. Is it not best to celebrate “hearing again”? Why does it matter what implant an individual chooses in order to best hear again? Sure – some companies have different perks, low “fail” rates, etc., but being negative or belligerent to an individual sporting a different brand is stupid and immature. (Not really pulling any punches am I, grin!)

“Play Your Own Hand” and do whatever it takes for YOU to hear best. To do so, insures you may communicate as best you can and to practice independence towards hearing all you can with the ears you have. Celebrate when others are learning to be proactive about their own hearing loss. Always be willing to try something new… you may learn a thing or two about your hearing loss even decades after you began living with these communication issues.

Denise Portis

Divine Deposits

Published on May 26, 2010September 2, 2010 by hearingelmo2 Comments

~ All the blessings we enjoy are Divine deposits, committed to our trust on this condition, that they should be dispensed for the benefit of our neighbors ~ John Calvin

My young adult children enjoy going to the bank with numerous paychecks and depositing their money into both savings and checking accounts. I envy them sometimes, for my husband and I certainly cannot wait to deposit numerous checks. Instead we worry about looming car repair bills, vet expenses and other various “unexpectedness” that ensures every paycheck is automatically credited to our account.

This week I have been thinking about “divine deposits”, perhaps because I’m feeling DIRT POOR but more likely because I’ve experienced what it means to have someone deposit part of themselves into my life. No matter how hard things are in my life, I can always “count my blessings”. I’ve experienced financial crisis, loneliness, loss, fear, disability, heart break and depression; yet, I’ve never been completely bereft of blessings.

An old hymn once sung with some frequency before churches switched to more contemporary worship music, is entitled “Count Your Blessings” and written by Johnson Oatman, Jr. The first verse:

When upon life’s billows you are tempest-tossed,
When you are discouraged, thinking all is lost,
Count your many blessings, name them one by one,
And it will surprise you what the Lord hath done.

Bing Crosby use to sing a song entitled, “Count Your Blessings Instead of Sheep”. The first verse, crooned by this music legend, is:

When I’m worried and I can’t sleep
I count my blessings instead of sheep
And I fall asleep counting my blessings
When my bankroll is getting small
I think of when I had none at all
And I fall asleep counting my blessings

I’m certainly a believer in considering the “good” and recognizing the power of blessings perceived. However, I believe John Calvin best described the REASON for our blessings. Blessings aren’t actually blessings unless we turn around and do something with them. If we simply receive a blessing and let it “sit in our soul bank”, the value of that deposit plummets.

So HOW Do I Bless Others?

Oh sure! Some people use anonymous gifts of money to be a blessing to someone else. However, I believe that blessings are rarely monetary. The cash value of blessings may be low, but the eternal value is considered priceless!

I recently stood in the hospital room of a dear lady dying of cancer. She could no longer speak because of the difficulty in breathing. Yet even in her pain-wracked body, you could see the yearning in her eyes to “give back” to those visiting her crowded hospital room. Each person who entered was greeted with a small smile, warm pat on the hand and dazzled by the twinkle in the eyes of this “walking blessing”.

I know of people who have adjusted to a life-changing, unexpected hearing loss, who cheerfully participate in the Walk4Hearing so that others can benefit from the local and national support of the Hearing Loss Association. Cochlear implant recipients often become mentors to others who are thinking about being surgically implanted with these bionics, or are new to “hearing again”. An investment is made in the life of someone else… an investment of time, advice, friendship, and understanding.

The trainers at Fidos For Freedom are volunteers. Countless hours of dedicated training and expertise are poured into every match of client and canine. The trainers are not paid for their work… at least not on THIS side of Heaven. I believe these compassionate trainers do what they do because someone else invested in them… they are simply “paying it forward”.

Who Are Your “Neighbors”?

“All the blessings we enjoy are Divine deposits, committed to our trust on this condition, that they should be dispensed for the benefit our our neighbors.”

Sure, the neighbor that benefits from your own “dispensed blessings” may be someone who actually lives nearby. Yet a ‘neighbor’ is often someone you have never met. It is possible to even be a blessing without being consciously AWARE. This is the result of living a life in such a HABIT of kindness, that blessings just ooze from your pores and influence complete strangers!

“Pay it forward”. To whom, you may ask? Anyone you can! I’ll leave you with one of my favorite commercials:

Denise Portis

Collision

Published on November 30, 2009November 30, 2009 by hearingelmo3 Comments

pastor drew3 — Pastor Drew Boswell instructs one of his twins, step-by-step through the process of climbing a mountain.

Our church just finished a series of messages called “Yellow, Red, Orange: Imagine the Impact When Church and Family Collide”. Yellow was a message about the church and its place in our everyday lives. Red was about the home and our priorities within it. Orange was a message about the collision of church and home; the result was a new color… orange. Orange is distinctive and the parts mixed have to be “just right”. Orange people have the right balance. The week we discussed the home, Pastor Drew took one of his twins and instructed him on how to safely climb a mountain. It was a fantastic object lesson for doing more than verbally instructing someone.

pastor drew — Not quite to the top yet, but close!

In order to make the biggest difference, in order to have the most lasting impact on the life of another, one needs to commit to hands-on training.

pastor drew2 — Climbing with someone with more experience makes a difference.

Pastor Drew‘s son made it to the top safely because of the: 1) instruction received by someone more experienced than he was, 2) the strong “spotters” on the floor who were one of the numerous safety precautions, and 3) his dad was stronger than he was and could assist him while also getting himself safely to the top.

Strong Examples

One of the things I like best about attending training sessions at Fidos For Freedom in Laurel, MD, is that teaching takes place between clients as well as client-trainer. There are clients who are culturally Deaf and late-deafened. Some clients use walkers or canes, while others are in wheelchairs or power scooters. New clients tend to gravitate towards other clients who have similar challenges. They are encouraged to ask questions. “Old-timer” clients and newbies both benefit from open communication. Having an assistance dog and a hearing loss is different than having a service dog and mobility challenges.

At the Hearing Loss Association of America – Frederick County chapter, new people attend not really knowing what to expect. An unexpected blessing and support often comes in the form of another person with hearing loss who has more experience. That experience can include things like advocacy, technical advice regarding hearing assistive technology, coping techniques with family and friends, and communication tips. Veteran members are strong examples because they had someone come along side them to assist when hearing loss was new to them.

I love interacting with other people who have Meniere’s disease, have hearing loss, are survivors of brain injury, or have cochlear implants. They are my “peer group”, and we learn from each other and make a difference by sharing our own life experiences as they pertain to these issues. Journeys are much more enjoyable with company.

“Life” Makes Us Good at SOMETHING

We are a sum of our parts; rather, who we are is the result of our life experiences. Not all of those experiences have been positive. In fact, some of those experiences may have been very negative, ushering in a major change in our life’s path. Some of the experiences were very positive. All experiences were used to teach us. I am unique and my life has had plenty of good and bad experiences. My life is only wasted when I choose to selfishly harbor all of those teaching experiences.

Some people think that something must be profound in order for anyone to profit from our sharing. On the contrary – life’s most ordinary lessons can make a difference to someone. This past week someone told me that they “discovered” the culinary pleasure of adding a little Feta cheese to chicken noodle soup. I’ve eaten this new-found delight four times this week! I’ve also had someone tell me that “parenting becomes a spectator sport when your children become adults… they still need you, but not in a participatory fashion”. This shared life experience has helped me as well.

Sometimes people may share something with you that you tuck away as an alternative viewpoint, but it may have only served to strengthen a perviously determined goal or decision. It may have been an opinion contrary to your own chosen morals, standards, beliefs and values. It still served a purpose; if not for any other reason than to strengthen a different decision. Don’t be afraid to share your life, both the mundane and profound experiences.

Imagine the Impact

I have been very up front with others about my faith. I do not believe religion has anything to do with real and lasting faith. At some point in time I determined that I was going to live out my faith. Who I was at church, would be who I was at home. The person my peers see at work, is the same person I am at home. Certainly, I am more “at ease” and comfortable in my pajamas drinking green tea and curled up with Chloe than I am when dressed in a business suit at work. Rather, I am talking about that inner person… the real me. I don’t want to be two-faced in my faith nor in my life.

Imagine how our relationships would change if we allowed God and our priorities that center around our faith, collide with the priorities we have at home and work. We’d all be walking around ORANGE, and more REAL than any past facade we once tried to model for others. If you walk around YELLOW, you have separated yourself from the world to the point you are not interacting or making a difference to those around you. You are very spiritual, but not very faithful. If you walk around RED, you quickly become self-centered and only see your immediate needs and problems. Complete independence isn’t a sign of strength. We were created to be dependent and to need relationships. ORANGE people strike that healthy balance. ORANGE people are influential without even trying.

Denise Portis

Not an Exact Science…

Published on October 12, 2009 by hearingelmo5 Comments

Just because I can zero in and concentrate, doesn't mean I'll always get it right!

Having a hearing assistance dog has its advantages when I do not hear “surround sound”. I have trouble with directionality as I only have one cochlear implant (and due to my balance problems very likely will not ever have a second). I have learned to pay attention to where Chloe is looking in order to figure out from what direction a sound is coming. The only problem is… sometimes I don’t pay attention.

Today our sweet cat, Kiki, found herself stuck due to my inability to hear and failure to take note of WHY Chloe was parked on the stairs instead of next to me. Kiki decided to squeeze between the door and the glass storm door in order to better partake of the sunlight and “view”. I did not know she was there, and closed the door because of the draft as I walked by. Thankfully, my husband came home about 10 minutes later and saw “cat on glass” as Kiki was smushed like a sardine between the storm door and metal door. We retrieved her amongst a chorus of “poor kitty”, and “I can’t believe I did that” while Kiki just purred and basked in all the attention. yellowchairkiki Having a hearing assistance dog is not an exact science when it comes to utilizing her amazing ears if I don’t pay attention to where she is fixated! I really have to pay attention to why she is parked and pointedly looking in one direction!

Reading Lips/Speech Reading

Some people believe that everyone with hearing loss read lips well. Actually, they call it speech reading now, as really you are trying to discern what someone says solely by what you see on their mouth as they speak. Speech reading is not an exact science. As a matter of fact, mistakes are often made by even the best of speech readers. Now that I hear as well as I do with my cochlear implant, I have lost the ability to speech read to some degree as I may once again rely on what I am hearing to understand in many situations. I do still rely on speech reading in noisy environments, and I will always be a big fan of closed captions. Several friends (God bless ’em) have started posting video links in Facebook that have the lyrics attached as well. This only enables me to hear BEST, so I am always thankful for what I see in addition to what I hear.

A couple of nights ago, my daughter was talking to her boyfriend on Skype. They go to separate colleges and during the school year have a “long-distance” relationship. My husband and I graduated from different colleges as well, but our only hope of contact was through a weekly letter (through good ol’ fashioned snail mail) and the occasional phone call. I was still able to use the phone well at the time, and waited by the pay phone at the end of the hall every Friday night. Technology has changed “long distance relationships”. My daughter actually has “candlelight dinner dates” with her boyfriend via Skype. They talk almost daily either “face-to-face” with Skype and webcam, or a minimum of numerous texts sent immediately through the easy access of cell phones. I popped my head in the other night and found them “talking”. My daughter “muted” the long-distance boyfriend so that she could ask me what I wanted. (Another interpretation, “Can’t you see I’m busy? Hurry up!”) Her boyfriend was still talking, so I told her what he was saying. She quickly typed (as you can both speak and type thru Skype) and asked him if what I said he asked was what was actually said. I was right on the button! She unmuted BK (the boyfriend) and both were amazed at my ability. I immediately chalked it up to “luck” and reminded them both that it isn’t a cheap parlor trick! It takes work and concentration to really be good at speech reading. I simply got lucky!

Think About What Looks Alike

I picked up a good HoH (hard of hearing) habit from a friend in California in 2006. She coached me to learn to repeat to people what I thought I heard even if I knew it could not be right. By doing so it did several positive things:

1. It allowed the person with normal hearing to only have to repeat what I got wrong, saving them the time and possible exasperration of repeating everything verbatim.

2. It allows the person with normal hearing to begin to understand what things sound like to ME… a person who hears with a cochlear implant. They learn to be experts at rephrasing things and finding synonyms to explain the same comment.

3. It allows both parties to see the “funny” in trying to make sense of what I hear. I both SEE in speech reading and hear with a cochlear implant.

4. It allows the HoH person to learn to extend grace and to accept that mistakes are made and most people are eager to help clear up the confusion. It creates a positive communication environment.

Stop for a moment and think about what looks the same on the mouth when words are enunciated. Some mistakes I’ve made:

1. I thought someone walked towards me with an admiring glance and said… “Sweeeeet…. heart”!

Really they were looking beyond me and saw a red corvette… they were saying “Sweeeeet Car!“

2. The words six and set look the same as SEX. (yikes!)

3. Mom I’m knitting hard!

Which was really, “Mom, I need the car!”

4. Mrs. Portis, I forgot my paper. Canons get formica? (I was really scratching my head in confusion on this one)

Mrs. Portis I forgot my paper, can I run get it from my car?

Learning to speech read more accurately, can however, help a HoH person communicate better. My local chapter of HLAA has plans to do a 2 hour “speech reading tips” class in the next couple of months. Some great resources that we will be utilizing, come from CHHA (Canadian Hard of Hearing Association), and include:

“Sound Ideas: Managing your Hearing Loss” manual and video

“Lip Reading Naturally” by Frances Mezei and Shirlee Smith

Think It Looks Easy?

I have a challenge for you. Mute your television and see if you can figure out what is being said. You might be surprised at how well… or how poorly you do!

Some additional resources:

1. http://www.agbell.org/docs/speechreading.pdf

2. http://www.lipread.com.au/Products.html

3. http://www.amazon.com/Lessons-Lip-Reading-Self-Instruction-Edward-Nitchie/dp/1428638008

4. http://www.lipreading.com/

Denise Portis

If I’m Part of a Majority, Then What is Our Identity?

Published on June 15, 2009June 15, 2009 by hearingelmo6 Comments

Denise and Chloe sit next to the Potomac at Harper's Ferry, WV

According to data provided by the National Center for Health Statistics (NCHS, 2006)), 37 million adults in the United States have a hearing loss. This is approximately 14.9% (2007) of persons over the age of 18 living in the United States. Gallaudet Research Institute (2007) states that anywhere from 2 to 4 adults out of every 1000, is “functionally deaf”, but of that number more than half became deaf after the age of 18-years-old. (NOTE: this would be after the acquisition of oral language). As many as 22 out of every 1000 adults in the U.S. consider that they have a “severe hearing impairment”. (Their hearing loss affects their lives and impacts the way that they communicate).

Who am I?

I began losing my hearing when I started having children. At the age of 25-years-old when my daughter was born, I have a very vague and fuzzy memory of thinking I may have a cold as speech sounded muffled to me. At the age of 27-years-old, my son had come along as well and at that point my husband and I both knew that something was up with my hearing. I went to an audiologist and was diagnosed with a moderate hearing loss… “did I want to buy a hearing aid for my ‘worse’ ear?”

Although I am deaf (with a small “d” as opposed to the capital “D” for culturally Deaf folks), I don’t consider myself deaf. I don’t think it’s a matter of denial either. I speak with my voice, and use a cochlear implant and hearing aid to maximize what I hear. For me… this is “normal hearing”. My “new normal”. I’m comfortable and happy with what I hear.

I know sign language, but it is highly unusual that I do. I learned ASL in college because I had two friends in my dorm who were culturally Deaf. I’ve been learning sign and taking classes ever since. I don’t use sign language with other hard-of-hearing people because the vast majority of them do not use sign language. Think about it for a moment. If like most people who lose their hearing, you do so after having learned oral language… won’t you try to continue to communicate in a way that more closely resembles the way that you did before your hearing loss? On top of trying to live with a newly acquired disability, would you want to learn a new language including it’s syntax and grammar, only to accomplish being able to sign to other people who happen to know sign? Doesn’t make sense does it? That is why the vast majority of people who lose their hearing turn to technology, surgery and/or reading lips.

Is ASL a bad thing if you are an oral deaf adult?

I’ve been to numerous hearing loss conventions where the attendance was anywhere from 500-800 hard-of-hearing people. These conventions often hire interpreters for the twenty or so people who use ASL as their primary means of communication. CART (Communication Access Real-time Translation using a court reporter) is also usually being paid for and the many workshops and sessions are also looped or have infra-red technology so that people with t-coils on their hearing aids and cochlear implants can hear more clearly. The small nucleus of folks who use primarily ASL tend to “hang out” together at these conventions. I have seen some very strong bonds and friendships develop. However, they are also isolated at times because they cannot speak to the hard-of-hearing majority who do not use sign. Sure! You can write notes, but I’ve rarely seen the effort made.

So should a HoH (hard-of-hearing) person learn ASL? My personal opinion is that learning a little bit of ASL is a good tool to use at home when you happen to have your hearing aids or cochlear implant out… or should your batteries die. Actually, HoH folks tend to learn Pidgin sign language, or exact signed English. They tend to sign exactly as they would speak in English (which isn’t ASL). I’ve been trying to talk my HLAA (Hearing Loss Association of America) chapter into doing one meeting on “often used phrases in ASL”. I believe knowing these phrases at home will facilitate communication in the situations I mentioned above. It can also be fun to learn a “hand full” of sign. However, most HoH people do not try to use sign language outside the home when they are at work, church or in public. They normally read lips, try to set up ideal listening environments, use technologies available, and often have hearing aids and/or cochlear implants.

I get a little aggravated when I make a doctor’s appointment and they offer to set up “Deaf Talk” for me since my chart is flagged with “deaf”. First of all, I’m on the PHONE making an appointment with them! I explain that I use a cochlear implant to communicate and that I speak English and prefer oral language. I suppose my preference is unusual in that I actually teach ASL as an alternative foreign language part-time. However, I do not associate myself with the Deaf (note the capital D) as I use my voice to talk in public. When I had jury duty this last year, the Frederick County court system had a CART reporter for me to use during that time. It was a very positive experience for both Chloe and I, as the courthouse doesn’t get a lot of service dogs either.

Having a CI and meeting a Deaf person

For lack of a better way to explain it, I have been “mistreated” far more often by the culturally Deaf than I ever have been by people with normal hearing. I’m not sure if it is distinctive to our area of the country, or if the attitude is nationwide now. However, it seems the culturally Deaf as a whole tend to feel pretty threatened by cochlear implants. I suppose I make it worse in that I wear “bling” on my CI, and my hearing aid has a bright red ear mold. I wear my hair up in part, because I really am NOT ashamed of my disability, but also because it helps me in the long run should I miss something someone says. They can immediately see that I “hear differently”. Many culturally Deaf are afraid that if those born deaf are implanted between the ages of 10 months and 2 years (indicative of the current trend) that their very culture is being threatened. Nine out of every 10 infants identified with hearing loss are born to hearing parents. These parents are often choosing the safe, non-invasive surgery of a cochlear implant to give their child the best opportunity at oral language. I don’t believe ASL is in any danger of becoming extinct, however, because there will always be Deaf children born to Deaf parents who chose ASL. The Deaf have worked long and hard for equal access and equal rights and have a rich history and long-term success at being identified as a culture.

I have been stopped in stores and handed notes by the Deaf asking why I would choose a cochlear implant. “What is wrong with Deaf?” I put the notes down and sign to them (making their eyes pop open wide), and explain that I was born with normal hearing and that my choice allowed me to continue to participate in the same way that I was born. Some get angry and stomp away, and some try to argue. Only one or two have ever said that I had a right to my choice and that they respect that. The vast majority of encounters were not “pretty”. Most encounters involve the middle finger! (from them… not me!) I’ll never forget waiting for my daughter at Pet Smart, and a Deaf couple stopped and pointed to me and began signing to their son (who was hearing I believe) that “sad, not right. people embrace ‘who they are’, God finish create – appreciate, accept”. I signed to the parents and little boy, that the only “shame” was when people could not make individual choices that they feel is in their own best interests and that choice be respected by others. (At least they had the grace to turn red).

Don’t get me wrong. I love ASL, and use it far more than many HoH people do. However ASL is not my native language. It is not the language of the group of Americans with hearing loss that I have chosen to identify myself with since losing my hearing.

Why are the oral deaf not as visible as the culturally Deaf?

The culturally Deaf have learned to stand up for their rights and have learned to be proud of who they are and accept it without reservation. The HoH crowd, however, tend to buy the hearing aid, and then refuse to even acknowledge they have a hearing loss. They often try to keep it hidden and rarely admit to someone that they may be struggling to hear in a poor listening environment. They may rarely disclose that they have a hearing loss at work, church, etc. They often do not identify with even having a disability. Why is this I wonder? HLAA and AGBell are wonderful organizations for those with hearing loss. Yet, the vast majority of members are those whose hearing loss has become so poor, that it has really begun to affect their lives. In desperation they reach out for the support and information that they need. I often wonder why those who have a mild to moderate loss never seek out organizations like this? I suppose it is because they “get by” just fine. If their hearing loss is not progressive, they choose to live life without the added help and membership of organizations like this. I cannot cast stones, for I did not seek out help until my hearing loss had reached the point that I needed help.

I was pleasantly surprised a couple of weeks ago, to attend an open-captioned Star Trek movie at our local theater. The room was packed, and I only saw a handful of people signing. I saw plenty of hearing aids and cochlear implants. I think it is so important to support showings of feature films with open-captioning. I always thank the theater manager in person or via email. Many in attendance were the hearing spouses, family or friends. My children have grown up with closed captioning, and actually have trouble watching television without it. I never have to twist arms to get my hearing family to attend an open-captioned movie. When you’ve distinct Russian accents and alien tongues in a movie like Star Trek, you can bet that those with normal hearing got more out of the movie thanks to open-captioning!

Many of the organizations who serve those who have a hearing loss and are oral are in financial difficulty. They’ve been that way for over a decade and with the current economy they aren’t due for a major influx of cash or membership. They often have difficulty obtaining grants. My personal opinion is that they should do a major overhaul in the way they reach out to those with hearing loss. They need to change the way they try to raise an interest in order to gain membership. The majority of people with hearing loss do not have a significant loss. These organizations certainly shouldn’t turn their backs on those with significant hearing loss, but new programs and ideas should center around how to raise awareness among those with a mild to moderate loss. Things like the hearing aid tax credit are a step in the right direction as everyone will appreciate some financial help for the expense of hearing aids. The only problem with this tax credit, is that it will be years before it is available to all age groups regardless of their health coverage. I believe more effort should be in providing information to this largely untapped group. What can be done to provide helpful information to this group? What programs can be developed to help them at work, church, and in public? I think if the struggling non-profits who are membership based reach out to this group, it will help to raise awareness. How could it not? The majority of those with hearing loss (those who are oral), will be finally identified as a cohesive group of individuals striving for equal access, and recognition. How do you help a group of people who want to remain invisible, to see the value in becoming a visible and active group? I don’t know the answers to these questions.

I sign when I misunderstand

Although I identify with the oral hearing loss community, I have something rather humorous to share. If I am trying to communicate with someone who has a heavy foreign accent, or with someone in a very poor listening environment (like a mall or restaurant), I tend to sign while I’m talking. It really tickles my kids, for I have tried to communicate with someone who only speaks Spanish and found that I started to sign and voice when I discovered I couldn’t understand them. My daughter has told me that she can tell it is totally unconscious, that she can see me just naturally start to sign when I cannot hear well or understand someone’s speech. My family has actually learned to step up to help when they see me signing as they know that I read their lips and “hear their voices” better. They know if I start signing, that I’m not hearing very well. Sometimes I sign when I’m really tired… fatigue causes me to not hear as well. I asked my husband (who has devoted six years of his life to the hearing loss community in the past) why he thinks it is that I sign when I’m not hearing well. He’s a psychologist and likes to be asked “what do you think?” He believes that it is not that I am switching identities or loyalties by starting to sign in a “pinch”. He thinks it’s a subconsious decision and acknowledgement that I’m not hearing well. He said that other HoH people who don’t hear well stop and say “huh?” or “fake it”. He said that because I know ASL, I start to sign. He’s stepped up to wide-eyed friends with normal hearing and simply said, “perhaps you should find a quieter place to talk… Denise is having trouble. See? She’s signing!”

I do wish the oral hearing loss community could erase the stigma associated with hearing loss. Would it be that we could develop a positive internal locus of control and believe that we are valuable and viable adults in spite of hearing loss. I wish… I wish we could REALLY find our voice.

Denise Portis

Meniere’s Help

Published on April 1, 2009April 1, 2009 by hearingelmo5 Comments

harpers-ferry-may-07-on-stairs2

Today is a rainy, dreary day. I actually love the rain, because it makes everything so green and keeps me from having to water everything! However, when it’s rainy I do take the extra time to “walk safely”. I’m extra careful on stairs, and I stand up slowly. I don’t do anything in a “hurry” that might move my head’s altitude quickly!

Chloe loves to pick things up for me, so I think when she sees me wake up with a little bit of “weave” to my step, she’s actually looking forward to a day of retrieving “every little thing”. Sometimes I don’t need the gum wrapper, or leaf brought in on the bottom of someone’s tennis shoe, but I thank her and praise her just the same. Actually, it’s probably good she brings me everything, for our Elkhound teenager will eat everything!

Meniere’s is not a disease widely known. Even amongst the hearing loss “crowd”, it is just beginning to get a little more “press”. Here are some of my favorite “Meniere’s helps”:

Hearing Loss Web: http://www.hearinglossweb.com/Medical/Meniere/mn.htm

NIDCD: http://www.nidcd.nih.gov/health/balance/meniere.asp

The Meniere’s Page: http://oto2.wustl.edu/men/

Meniere’s Organization: http://www.menieres.org/

Denise Portis