This is My Fight Song

On “match day”, 2015.

The first time I heard Rachel Platten’s “Fight Song“, it was actually sung by a different  young woman who had faced a life threatening illness and “won”. You can find Calysta Bevier’s audition for “America’s Got Talent” HERE.

Yesterday, Fidos For Freedom, Inc. held its annual certification day. Service dog and hearing dog teams re-certify their skills and clients take a written exam. Milo and I passed with flying colors. While there, I was able to catch up with other teams. I overheard various teams refer to their service dog as their “partner in crime”, “wing man”, “partner”, “side kick”, “best friend”, and “best buddy”.

I’m a believer in the power of the human spirit. I have also seen many people who are differently-abled, dig deep and find the wherewithal to “just keep swimming” (as our friend Dory from Disney’s “Finding Nemo” taught us). At certification day, there is understandably some waiting in line. In an “all volunteer” organization, it takes a village of caring and committed volunteers to make certification day happen. However, clients do have to spend some time waiting for the next station to open up so that they can be tested on those skills. While waiting, I people watch. I’m easily caught up in emotion and found myself getting choked up looking around at various teams performing like super heroes. Can these individuals FIGHT without a service dog at their sides? Yes. I have no doubt. However, having a service dog makes each and every day a little easier.

It’s more than the skilled tasks they do, y’all! Milo retrieves dozen of items I drop each day. He is my alarm clock. He opens and closes the dishwasher, refrigerator, and gets clothes out of the dryer for me. He braces when I stand from a sitting position. He walks along side me and is only a touch away. Yet, the biggest benefit Milo brings to my life is psychological and emotional strength. Can I fight alone? Yes.

But I don’t have to do so.

Milo is with me 24/7. If I’m having a bad balance day, I go to work anyway knowing he’s got my back. If I’m dreading a large meeting, knowing in advance I will have trouble hearing, he provides the courage I need to do what needs to be done. I consider myself an advocate and “assumption destroyer”. However, Milo makes me a super hero. I think service dog partners forget those “under the radar” strengths our service dogs provide for us. On annual certification days, I am often reminded. Observing these teams and the trainers who coach/love them, brings these hidden benefits into startling clarity for me. We can count on other caring human beings to help and support us as needed. However, it is only a service dog partner that can be there ALWAYS.

I want to leave you with the lyrics and original video of “Fight Song”. I also am not ashamed to acknowledge that I found my own fight song with the support of a service dog. For me… it made the difference.

Like a small boat
On the ocean
Sending big waves
Into motion
Like how a single word
Can make a heart open
I might only have one match
But I can make an explosion
And all those things I didn’t say
Wrecking balls inside my brain
I will scream them loud tonight
Can you hear my voice this time?
This is my fight song
Take back my life song
Prove I’m alright song
My power’s turned on
Starting right now I’ll be strong
I’ll play my fight song
And I don’t really care if nobody else believes
‘Cause I’ve still got a lot of fight left in me
Losing friends and I’m chasing sleep
Everybody’s worried about me
In too deep
Say I’m in too deep (in too deep)
And it’s been two years I miss my home
But there’s a fire burning in my bones
Still believe
Yeah, I still believe
And all those things I didn’t say
Wrecking balls inside my brain
I will scream them loud tonight
Can you hear my voice this time?
This is my fight song
Take back my life song
Prove I’m alright song
My power’s turned on
Starting right now I’ll be strong
I’ll play my fight song
And I don’t really care if nobody else believes
‘Cause I’ve still got a lot of fight left in me
A lot of fight left in me

ORIGINAL VIDEO

L. Denise Portis

© 2017 Personal Hearing Loss Journal

Crappy Life Lessons

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I’ve had to force myself to log onto “Hearing Elmo” and write SOMETHING.

Anything!

I don’t like for too much time to go by and not be writing. Writing, blogging, and “talking to you” is important to me. I learn from you. I hope we learn from each other.

Misinterpreting

Saturday, October 1st, on her twelfth birthday, we said goodbye to Chloe, my first assistance dog. She retired in May of 2015. Chloe was diagnosed with Transitional Cell Carcinoma in August of this year.

I’ve started this post 8 times (and yes, I counted). The first couple of drafts were angry and mean. One draft was scary. Others were tearful and frankly? Were so full of random thoughts and words, the grammar itself forbade me from hitting “publish“.

Shame and Blame

lane-graves

On June 14, 2016, little Lane was killed by an alligator at Walt Disney World resorts. Like many who read his story, my first thought was, “Where the heck were his parents, and how in the world does something like this happen?

Erin S., a friend of mine, fairly quickly put me in my place–and rightly so. Why do we immediately judge what we do not know?

  1. We are shocked by something.
  2. We are heart broken.
  3. We look for someone to blame.
  4. … as if that makes it better.

We cannot ever know the “whole story”. We simply are not privy to that. There is a backstory to every tragedy and every loss. Little Lane was killed as the result of an tragic (freak) accident and he cannot be placed back into the arms of those who loved him. Why do we search for who is to blame? Sometimes, folks?

Sometimes life just sucks.

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Facebook is a wonderful place; especially for the differently-ABLED community. It is a place where technology levels the communication playing field. I have re-connected and strengthened friendships. I have “met” people in this venue I may never meet face-to-face. Last week, however, I “unfriended” and “blocked” 34 people I didn’t really know. Getting one to two messages a week, led me to believe they were simply out to get a “rise”. Many posted publicly and I exercised my right to DELETE. Haters gonna hate.

I created a public page for Chloe’s last chapter to raise awareness about an organization I love, Fidos For Freedom, Inc. I wanted to share what being a puppy raiser, sponsor, and trainer for service dogs was like. I wanted to share information about the valuable resource (even MINISTRY) of therapy dogs. I wanted to share how one dog changed my life and brought me back into the world of the living after a self-imposed isolation.

When bad things happen, we tend to look for answers or worse-someone to blame. After only reading the public “cliff notes” of Chloe’s life, I was lambasted by people for making the wrong decision.

  1. You should get a third opinion. You could treat this and prolong her life an entire year!
  2. How could you let her live the last month of her life this way?
  3. OMG. It’s just a dog. Surely you have something better to do.

Now these are folks I don’t know and you are open to these kinds of messages when you go “public” with anything. I don’t mind blocking folks who just look for ways to get people riled. I fully trust that those who know me and know my husband Terry, trusted US to make the best and most humane decision for a furry family member. (More than that… a retired partner).

politics

Ah. It’s an election year. It’s getting nasty out there in FaceBook land, isn’t it? Yet those I actually do know, I allow to post whatever they want on FaceBook. I may not click “like”. We may agree. We may disagree. More than anything though I hope we are the kind of “real” friends to agree to disagree… and love each other anyway.

I love Culture of Empathy’s website. I don’t agree with everything they post, but their message is powerful. Empathy is defined as, “identification with and understanding of another’s situation, feelings, and motives”. Empathy does not mean you may fully agree with them.

Y’all?

We can love one another and show kindness and compassion without having to acknowledge that an important connection and relationship is the equivalent of being identical twins. I love my husband and best friend, Terry, but the man is an idiot sometimes (albeit a sweet one). I do not agree with everything he says, believes, or “votes”. Yet, I respect everything he says, believes and votes and fully support him because I love him and he is my friend.

The Bible does not actually use the word “empathy” anywhere, yet it is inferred. It does use the word compassion numerous times. Compassion can be defined as “a feeling of deep sympathy or sorrow for another who is stricken with misfortune, accompanied by the strong desire to alleviate the suffering.” Especially when someone is faced with a critical decision or experiencing heart ache, can I not support them with compassion? How does judgement, argumentative jabs, and insistence they agree with ME, help? It doesn’t. It only shows I lack compassion and kindness.

helen-keller

I’m not perfect. But…

I want to be perfectly committed to being kind, being loving, and making a difference. I may not always agree with you, but if we have the kind of relationship that we can talk about disagreements with respect and kindness, and walk away still close friends? I count myself BLESSED.

Crappy Life Lessons

So a crappy life lesson? Sometimes when grieving and in pain, people are gonna kick you when you are down. Sometimes when important decisions need to be made, folks are going to call into question my own character for an informed and personal choice. I’m gonna love you anyway.

For you see? Love isn’t love if it changes on a whim and because someone disagrees with you. I believe the world would be a better place if our first thought when getting up in the morning was,

“How can I make a difference today? How can I show kindness?” 

Hold me accountable.

Denise Portis

© 2016 Personal Hearing Loss Journal

Can You Be Arrested for That?

My favorite cane...
My favorite cane…

I have friends who are police officers. One, Carl, is actually chief of police for a district in our area. I see him most Sundays, and tomorrow I plan to ask him, “Can you be arrested for that?” I love his sense of humor and he and his wife, Pam, are two of my favorite people. Though I know he will be witty, I also know he will be straight with me. Anything that pertains to the law, he’s gonna be frank with me.

Maybe I should back up though, and tell you the story? <grin>

First of all, I’m really tired. I could list you dozens of citations that link differently-abled people with fatigue and insomnia. I’m usually good about listing all those for you, but honestly there are over 26,000 articles since 2012 alone. (Yes… I counted, or rather Google scholar did!). But I digress…

When I’m tired I have a little more trouble filtering what I say. I am much more apt to just say the first thing on my mind. I’m trying to live with the “pause – respond” method (thanks for that Toby Mac post, Helen), and being mindful of not saying the first thing that comes to mind really helps. When I am tired though, I’m less likely to turn that filter on.

I have a dog in hospice care at home (sweet, retired Chloe), and I am very likely involved in way… too… much. Finishing my dissertation, teaching four classes, volunteering at a number of places; the list goes on an on. Just color me tired. This tired woman, with turned-off filter, entered Giant grocery store on Thursday. Milo-bear (my current service dog from Fidos For Freedom, Inc.) was tired as well as we had just completed a long training at the county police academy and he had a fairly long demo (that he NAILED). I only needed to get a few things, and so encouraged Milo for a last push before heading home.

When I’m tired, I wobble. <ahem> Ok. I wobble all the time. However, I wobble MORE when I am tired! I had one of the smaller carts, Milo, cane, and enough time that I did not need to rush. This didn’t seem to matter. I was a mess. I even wobbled when I moved my field of vision from one shelf to another. Being late-deafened, I do not always hear things in a big, cavernous store with lots of tile and hard surfaces. I turned suddenly, and almost plowed into a man standing there shopping with one of those hand baskets. He threw up his hands and watched me wobble, screech (just a little), and grab for everything stationary in my vicinity.

No face plant (this time). I whooshed out a breath of air, and locked eyes with him and was getting ready to say, “Wow. That was close“. He beat me to airtime, however.

“Well you are more than a little pathetic today, aren’t you?” with a grin and twinkle in his eyes.

Now… I’m late-deafened. I often mishear things. My husband could tell you a thousand stories about WHAT I THOUGHT I HEARD. He’s one of the few voices I can hear on a telephone, and has never let me live it down when he called and said, “Dinner at six?” I misheard and thought he said, “Dinner and sex?” Maybe inside I was thinking, “yes, please“, mature adult that I was said, “Excuse me…?” Yeah. That one has been hard to live down.

So this smiling man with a twinkle in his eye standing there waiting for me to respond, may NOT have said, “Well you are more than a little pathetic today, aren’t you?” I had to give him the benefit of the doubt.

Maybe he said “phonetic“. Eh, likely not since I only screeched and had not said anything.

Maybe he said “poetic”. I could dream.

Maybe he said “prophetic“. Perhaps he sensed I was getting ready to assault him.

To clarify, I said, “Ummm, pathetic?”

“Yes”, he replied, “because you….” his voice cut off because at this point? I had my cane raised.

I poked him with it. HARD. I’M pathetic? You’re the pathetic piece of humanity standing there making snide comments about people who are a little different than you!” 

He rubbed his chest where I poked him, mumbled something that I’m not EVEN gonna pretend I heard well or understood, and wandered off. I sat there hyperventilating.

Milo-bear looked up at me like, “Are we done yet?” cool as a cucumber. Me? My cucumber was fried.

As I stood there wobbling and taking deep, calming breaths, I gave myself a pep talk that the guy likely just had a poor choice of words. He seemed friendly, nice even. I’m sure he didn’t mean the way it sounded… the way I took it. I even had the grace to ask God that if He brought me face-to-face with the man later in the store, I would apologize and try to explain how his comment made me feel. Thankfully, I did NOT run into him, because… well I wasn’t really wanting to apologize.

Yes. I should have just moved on, or perhaps even “only” blasted him with my “how pathetic are YOU” rebuttal. I need to keep my cane to myself. (Can you tell I am preaching to myself?) Who knows why he chose the words he did. I make poor choices all the time.

And I do mean ALL the time.

So perhaps I need to practice the “pause method” even more:

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Denise Portis

© 2016 Personal Hearing Loss Journal

 

See — Look — Watch

here's looking at you

Last week I was in a different building with Milo, my new service dog. Early on, he was not a big fan of elevators. When you are a service dog trained to help mitigate mobility and balance issues, this is a serious thing. His trainer worked very hard with him to get him over his fear of “the moving box”. He now enters elevators with a tail wag and is confident and alert. Unless…

… he enters a new elevator. I forget to take things a little slower when we get into a brand new elevator. To Milo, “different” is not good, and should be approached with extreme caution. I suppose that is why when I entered the library elevator on campus, and Milo immediately dropped to the floor trembling, I was taken by surprise. I spoke to him with confidence and calm tones, and he was eventually standing by the time we reached the correct floor. Some students on the elevator with me said, “You are doing such a good job training him! I could never do that though… train a dog only to have to give it up after training”.

The elevator door was opening and everyone was filing out. I didn’t take the time to set the students straight because it wasn’t really important. However, as I walked around trying to find the study room my students were meeting in, I was thinking, “Didn’t they see my cane? Can my bling be any more noticeable? There isn’t any way I can make my invisible conditions any more visible. AAARGH!”

… and yeah. I think in pirate-speak at times.

I have to remind myself that we are all guilty of only SEEING sometimes. We forget to LOOK instead. Worse, we often do not take the time to WATCH.

See — Look — Watch

see-look-watch

So often we go throughout our day only SEEING. I’m guilty of this. I believe SEEING people is the equivalent of saying, “How are you today?” with the expectation of hearing the response, “I’m fine, how are you?” SEEING is going through the motions with our eyes. SEEING is inactive. We SEE, but we are not doing so with deliberation. We are not concentrating. The students in the elevator were seeing me, but they were not looking. Well… that isn’t altogether fair as they were likely LOOKING at Milo, but only seeing me.

LOOKING means you deliberately concentrate… you notice. LOOKING is active. I suppose it is a little bit like being in “search mode”. When we are LOOKING, we ignore distractions, and recognize more than the superficial “window dressing”. My friends Deb and Ruth are photographers. I’m trying to learn to LOOK when taking pictures and not just seeing something pretty.

I love teaching. However, everything I really love about teaching has little to do with the subject I teach. I love teaching because I really feel like I’m making a difference. Somewhere along the line I learned to LOOK at my students instead of SEEING my students. Perhaps I had good role models. Perhaps it is because I have felt invisible myself. Do you know in my head I say, “Here’s LOOKING at you, kid”… with my best Bogart impression? I don’t just SEE you. I’m LOOKING at you.

I remember reading Blume’s book, “Are You There God? It’s Me, Margaret” as a kid. I can’t tell you the number of times I have asked God this same thing… only I insert Denise. There have been times I have been angry and added some things like, “Do You even CARE? Do you really see me?” I don’t always deal with my “new normal” in a positive way. I struggle with depression. I get angry–even at God. I need constant reminders that He looks at me. He is watching me; that He does care.

My husband hasn’t been looking at me lately. I don’t mean this as a slam, and I’m not telling you something that I haven’t shared with him. He signed me up to go to a banquet/game night/workshop for Valentine’s day at our church. Many couples and singles will be there. I don’t go to things like this… at least not with people who do not understand disabilities. Three weeks ago I told him I wasn’t going… that he shouldn’t have signed me up. He asked me (nicely) to go… “I rarely ask you step outside your comfort zone“. We argued. I pleaded. Two weeks ago we repeated the conversation. One week ago we practiced redundancy. Yesterday, I said I would go, but I told him, “You aren’t looking at me. You see me, but you aren’t looking at me. If you were, you’d know that I’m suffering from panic attacks. If you were, you’d recognize the sleep walking I’ve been doing as anxiety“. Sometimes we see right through the people we love the most. We aren’t looking at them. (Because I recognize that being a chicken can isolate me from others, I’m trying to find my courage…)

Please know that I understand we cannot have our LOOKING eyes on all the time. That level of concentration is impossible to do during every waking hour. However, I do believe that we can do more LOOKING than SEEING.

Yes. It takes a little more time and perhaps more effort.

No. We don’t burn calories for our trouble (darn it!)

Do you ever WATCH others? It goes beyond looking and does take the sacrifice of time. In a world of “time is money”, few people perceive that they can afford to take the time to WATCH. I believe we cannot afford not to take the time to do some WATCHING. Our very soul depends on it.

WATCHING changes you. WATCHING often changes the world. It is only that level of concentration and taking precious, valuable moments to study what your eyes see, that any connection is made to your heart–where all change is born.

See — Look — Watch

Be deliberate in how you exercise your eye muscles.

Denise Portis

© 2016 Personal Hearing Loss Journal

Where the People Aren’t

"I Wanna Be Where the People Aren't"
“I Wanna Be Where the People Aren’t”

I recently saw the above picture on FaceBook, and since I love “The Little Mermaid”, (and because I know cats can be SO “offended”), I found this VERY funny.

As an Introvert, I often want to be where the people AREN’T. I, and most Introverts, love people. However, folks misunderstand what an introvert, and extrovert are.

Heck.

There is even a newly labeled “blend” for those who exhibit both introvert and extrovert tendencies (lest others think we have multiple personalities, or Dissociative Disorder). Evidently an Ambivert, is one who has both characteristics, often in dependence on their role in that specific environment.

The difference between an Introvert and Extrovert, however, is simply how a person prefers to RECHARGE. It has nothing to do with whether or not they like people. Extroverts recharge by being around others. Introverts recharge by being alone.

All this thinking about “versions” had me contemplating how each dimension is effected by acquiring a disability. As a person who is differently-abled, my mind just “goes there” automatically when I think about personality characteristics. Who copes “better” with acquired disability? An Introvert or Extrovert (or Ambivert)?

“Version” affect

Interestingly, research shows that people who are extroverted are more likely to acquire a disability that limits mobility or results in chronic pain (Malec, 1985). Evidently extroversion can be equated with higher risk behavior and decisions that may result in injuries associated with motor loss/coordination or chronic pain. Introverts, too, are diagnosed with acquired disability, but often with diagnoses that are “non-traumatic” (Malec, 1985). This doesn’t mean Introverts are not involved in motor-vehicle accidents, or risky behavior that results in injury. The research simply shows that extroverts are more likely to choose activities that could result in these types of disability. Frustrated in my search for information regarding “version” types and acquired disabilities more like my own — those that are the result of genetics and/or “unspecified contributors” for deafness and Meniere’s disease, I continued searching the research databases.

I came across an interesting study by Noonan et al., (2004), called, “A Qualitative Study of the Career Development of Highly Achieving Women with Physical and Sensory Disabilities”.

BINGO.

I figured I hit the jackpot with this search and find! What I discovered, however, has nothing to do with a connection between “version” types and successful coping with acquired disability. According to Noonan et al., (2004), successful coping includes  “developmental opportunities (education, peer influences), family influences (background and current), disability impact (ableism, stress and coping, health issues), social support (disabled and nondisabled communities, role models and mentors), career attitudes and behaviors (work attitudes, success strategies, leadership/pioneering), and sociopolitical context (social movements, advocacy)” (p. 68). The difference between those who successfully cope and are extroverted and those who successfully cope and are introverted, centers around social support. An extrovert is more likely to identify and ask for help from any peers or individuals within their environment and in so doing actively engage in demonstrative advocacy. Introverts are more choosy about who they enlist support from, but are often “background” advocates. This is supported by research from Ellis (2003) in findings that include the difference in how extroverts and introverts enlist support, openly or privately – respectively.

“Version” Types and Assistive Technology

Having lived with special challenges for more than 31 years, I have had the (privileged) opportunity to meet hundreds of individuals who are differently-abled. Networking through organizations such as Fidos For Freedom, Inc., Assistance Dogs International (ADI), the Hearing Loss Association of America (HLAA), the American Association of People with Disabilities (AAPD), and numerous other organizations, I have met both extroverts and introverts who cope well — and some not so well — with acquired disability.

Some discouraging research does suggest that extroverts are more likely to use assistive technology and devices (Johnson, 1999).

This sucks.

I struggled for so many years with invisible disabilities and challenges, that my “epiphany” moment of changing that… making the invisible very visible, still gives me psychological goosebumps. My introverted life changed when I determined that I would embrace technology and assistive devices. I use bright canes, an assistance dog, bling up my cochlear implant and have informative brochures with me wherever I go. You’ll notice I didn’t say my introverted self became extroverted. I’m aware of and fully accept who I am – an introvert. Yet, using assistive technology and devices (and canine) has dramatically improved mitigating my own disabilities. Extroverts are more likely to seek “tools” early on in a diagnosis that incorporates an acquired disability (Wressle, Samuelsson, 2004; Kintsch & DePaula, 2015). Once introverts determine that the benefit of using assistive technology and devices improves quality of life, they, too, are able to embrace tools that improve life with the downside of making them (perhaps) more noticeable.

In closing, can I just say, “I LOVE PEOPLE”? We are different yet, are alike. We react to things differently and yet similarly. We all love dogs. 

Cuz… well, that just makes sense.

Denise Portis

© 2015 Personal Hearing Loss Journal

Ellis, A. E. (2003). Personality Type and Participation in Networked Learning Environments. Educational Media International40(1/2), 101.

Johnson, D. (1999). Why is assistive technology underused? Library Hi Tech News, (163), 15-17. Retrieved from http://search.proquest.com/docview/201534320?accountid=14872

Kintsch, A., & DePaula, R. (2015). A framework for the adoption of assistive technology. Retrieved on November 24, 2015, from http://citeseerx.ist.psu.edu/viewdoc/download?doi=10.1.1.124.3726&rep=rep1&type=pdf

Malec, J. (1985). Personality factors associated with severe traumatic disability. Rehabilitation Psychology30(3), 165-172. doi:10.1037/h0091027

Noonan, B. M., Gallor, S. M., Hensler-McGinnis, N. F., Fassinger, R. E., Wang, S., & Goodman, J. (2004). Challenge and Success: A Qualitative Study of the Career Development of Highly Achieving Women With Physical and Sensory Disabilities. Journal Of Counseling Psychology51(1), 68-80. doi:10.1037/0022-0167.51.1.68

Wressle, E., & Samuelsson, K. (2004). User satisfaction with mobility assistive devices. Scandinavian Journal Of Occupational Therapy11(3), 143-150 8p.

Does Not Play Well With Others

play

I hesitate to even post about this topic because I’m sure to get a little backlash about this viewpoint. Because of that, you will see interspersed throughout this written confession, links of scholarly evidence and citations to peer-reviewed articles that will lend a little more credence to what I’m about to say. I don’t want it to be just an opinionated article, after all!

Confession: I Don’t Play Well With Others

Now if my mother is reading this, she is likely “nodding her head in agreement” but that is because her clearest memory of me is the bossy older sister, not at all afraid to confront people (they call me Vina Jewell Jr. in my family), and stubbornly opinionated. However, when you grow up in a small farming community and go away to college, there isn’t much chance your mother will be able to get to know the adult you’ve become.

Don’t get me wrong. Mom and I talk weekly. But a FaceTime call is a great deal different than seeing someone day in and day out. However, the fact that I don’t play well with others as an adult has nothing to do with the negative characteristics I hope to have left far behind me in my childhood.

As a 49-year-old woman who readily identifies as being differently-abled, “playing” often means quiet, reflective time, or interactions where I’m present but only “just”–in that I do not have to interact with those around me. For example, my husband and I will watch a movie together once in awhile. I’m a reader. I write. I research (by choice and not because I’m a doctoral student). I love sitting on the deck and staring out into the woods. I love to cuddle with my dogs.

Now some who read that last paragraph may think that I don’t like people.

Wrong.

I love people, and enjoy interacting with others. I believe anyone I work with will tell you that I am an eager team player who throws herself into volunteer work with passion and gusto. You see… I WORK well with others. Outside of class, I proudly advise three different student clubs and participate in a number of faculty/staff committees. I love this work. I love the people I work with, too. However, I’m working – not playing. I’m one of the lucky ones in that as a person who is differently-abled, education is a great career. People with skills, training, and education in other types of careers are not as lucky. Many people with disability or chronic illness find that in their chosen career they face both exclusion and discrimination (National Disability Strategy Consultation Report, 2009). I am extremely grateful to be a part of the education community, for I rarely face these issues.

So what’s the deal with my not “playing well with others”? Well you see? The things I mentioned earlier that are ways I unwind, decompress, relax, and “flourish in my happy place”, very few people are willing to do alongside me. (And that’s ok…) I have a few friends that will “hang out with me” and “play” with no expectations. We do not have to do a whole lot of talking. We just “are” – and are comfortable in silences and quiet places. The problem is that none of these friends live near me.

Hearing Loss and Background Noise

It may be different for folks with other types of challenges. As a person with hearing loss, I can tell you that one of the biggest barriers to living a happy and productive life alongside of others, is background noise. Some folks think that background noise is the same thing as white noise.

It’s not.

White noise is a steady (and unremarkable) buzz of sound. If you are as old as I am, it would be like the “snow” sound on a television channel currently off the air. When I was a kid, my older brother and I would sometimes be allowed to stay up watching TV, and we’d eventually fall asleep. When I awoke, the television screen would have “snow” with a buzzy kind of static-like noise. Background noise, on the other hand, is any extraneous sound that is heard while trying to monitor a specific sound. For folks with hearing loss, that specific sound is SPEECH while trying to screen out other sounds (and perhaps voices) from the environment. If I could burn calories for every minute I communicate with others in the normal world, I would not be 25 pounds overweight.

Background noise is the enemy of people with hearing loss. This noise even diminishes our ability to concentrate and form both short-term and long-term memories (Rugg & Andrews, 2009). Kenneth Henry (Neubert, 2012), postdoctoral researcher at Purdue, uses the analogy of numerous televisions. For folks with normal hearing, it would be like turning on a dozen television sets on different channels and asking the individual to concentrate on one show. It’s hard. It’s not at all enjoyable. It’s not something someone would ever do by choice.

Yet people with hearing loss must consciously make the choice to reach out to others, invest their time, energy, and focus just to communicate! It’s hard to communicate in a world full of background noise. It’s worth it. It keeps us from being isolated. It keeps us connected to others. It may keep us productive and working. There is a price to pay, however. The price tag is limited options for “play time”. In order to completely eliminate the WORK in listening, one needs a quiet environment. Friends tend to text one another with suggestions such as:

“Hey! Want to meet at Ruby Tuesdays after church today and eat together?”

“Let’s go shopping!”

“There’s a meet-up at the local Starbucks for mom’s frustrated with their adult children. You should come!”

“A dozen or so of us are going to go walking at the park with our dogs. You should come along!”

“We are all going to go get a pedicure! We are meeting at 2 PM”. 

This is not my kind of “play time”. Now occasionally (OK… I’m exaggerating – RARELY) I will go out and do some of these things. However, there are very few people I can ask to participate in what I really consider “fun”. Even when I go out with friends from Fidos For Freedom with individuals who have various disabilities it is hard. When you do not hear well, you can be isolated even when amongst folks who really understand disability. Folks with hearing loss “play” differently.

“Hey girl! Come over and sit on my deck and watch the squirrels in the trees with me, will ya?”

“I know this great place in the woods near my home where two streams converge. It’s a great place to sit and read a book. I’ll bring the bug spray!”

“Let’s go sit by the Chesapeake and pet our dogs while we watch the ships go by…”

Having a hearing loss as an adult – even when it is “corrected” by hearing aids and/or cochlear implant, the individual is certain to have a co-morbid  auditory processing disorder. This creates all kinds of communication issues that make it extremely difficult to enjoy communicating. According to Whitelaw (2015) “These types of communication issues may include difficulty hearing in less than optimal listening situations, reliance on visual information to augment auditory information, a reduced appreciation of listening to music, and difficulty understanding speech when the speaker is unfamiliar” (para. 1).

I have special programs on my cochlear implant that reduce background noise and allow me to zero in on the person right in front of me. I rely on these programs. (There have actually been times in extremely noisy environments, that I swear I hear better than my normal hearing counterparts). Even with this wonderful technology, I still have to concentrate. It’s not fun. It’s not “play”. It requires recovery time later. Is it worth it? 

Well if it wasn’t, I would never leave home… and I leave home a great deal and for a variety of reasons. Just because I CAN doesn’t mean it is easy. I’ve been alive long enough to know that important things are not always easy.

How to “Play” with Someone with Hearing Loss

If you know someone with hearing loss, please allow me to provide some “playing pointers”. You will note that these activities often revolve around just being in the presence of each other. They are activities that do not require dialogue every second of your chosen “together time”.

  1. Board games: It’s OK, to laugh and “chit chat” over a great board game. But… turn off the TV. Don’t have background music going. If there are more than two people playing the board game, don’t have individual conversations. Every spoken word is meant for everyone present. This keeps the person with hearing loss from having to deliberately ignore the sound of a conversation not meant for them. Please don’t think that people with hearing loss can enjoy “game night” with a big crowd. The folks in my small group at church had a “game night” (with all in the family invited) one night and my first thought was, “just shoot me now“.

2. Books, reading, and discussion: Book clubs are great! That is… if the discussion group is meeting in a quiet setting while discussing the chapters that week. Sitting in the food court of the mall and discussing what you read that week = NOT A GOOD IDEA. If you like to read, ask to spend some reading time with a person with hearing loss. You read; you don’t talk. It is difficult to express how meaningful it is to simply be in the presence of another.

3. Walks, hiking, boating, and other “outdoorsy” stuff: These activities can be great for folks with hearing loss. However, many trails and parks and lakes have become very populated. This means that the person with hearing loss may have trouble hearing you if they cannot see your face. Imagine kayaking with a person with hearing loss. If the kayaks are facing each other they will do great. This also means you won’t get anywhere because two kayaks facing each other cannot move. So enjoy the time together but don’t try to tell them all about the problems you’ve been having at work. Enjoy the hike. Enjoy the quiet of the walk. Enjoy the sound of the paddles hitting the water – and the far distant sounds of other folks out on the water.

4. Movies: I’m a “hearing again” person. This means that I can go to a movie, watch it, understand it, and give it a Siskel and Ebert “thumbs up” or “thumbs down” vote — just like everyone else. This doesn’t mean I can converse about the movie as we exit with the crowd. This doesn’t mean I can walk all the way to the parking deck and discuss everything we loved about the movie. Give me a safe place to stop moving. Allow me to concentrate on the conversation.

5. Gardening, Fishing, or ART: I love gardening, though do precious little of it I’m afraid. I had a great little “deck veggie garden” this year but wondered why I didn’t feel the thrill of it like I experienced it years ago. I concluded it was because I wasn’t pulling weeds alongside my father. I realized I wasn’t thinning plants while with my grandmother just three plants over. Be willing to spend some quality quiet time gardening with a person who doesn’t hear well but enjoys getting down in the dirt.

Fishing can be a great activity.

Art, too, can be a great opportunity to spend some time with an artsy hard-of-hearing person.

Some great resources: LISTENING IS EXHAUSTING.

SOCIALIZING WITH HEARING LOSS.

Not Hearing Loss – but “OTHER”

What if your challenges are not hearing loss. People who live with disability, chronic illness, and visible or invisible health problems may still “play” differently.

As a person with a balance disorder, I cannot go to the fair at the county fairgrounds and “play”.

I cannot walk to the park and “swing” on the swing set while discussing heart-to-heart issues.

If you want to spend time with someone who has specific challenges, ask them what they like to do and meet them where they are – within the parameters of what is “fun” for them. They may have a really hard time meeting you for some “play time” when it will be WORK for them. Ask how to accommodate them. I promise you that they really do enjoy being with you.

L. Denise Portis

© 2015 Personal Hearing Loss Journal

Through the Eyes of a Newbie

Milo Cade - Fidos For Freedom, Inc., Service Dog.
Milo Cade – Fidos For Freedom, Inc., Service Dog.

Many of Hearing Elmo’s readers know that I retired my service dog, Chloe, this year. Since May 1st, she is enjoying retirement and still does some hearing alerts at home. She is happy, spoiled, and we believe well-deserving of all the naps and belly rubs she is currently receiving. I was recently matched with Milo, from Fidos For Freedom, Inc. Milo is a shepherd/lab mix and I am enjoying the process of being partnered with a mobility/balance service dog versus a hearing/balance assistance dog. We determined my primary needs are mitigating issues with Meniere’s disease and not hearing alerts. I love my cochlear implant, and feel like I have adjusted to the world of “hearing again” very well. My balance is, and will continue to be, a major issue. I suppose in a way, this is an introduction of my new partner, Milo.

One thing I have enjoyed is experiencing MY world (work, church, walks, etc.) through the eyes of a newbie. For Milo, everything in MY world is new. He looks at everything in awe. If he isn’t looking in awe, he is sometimes in “investigation mode”.

Is it scary?

Is it freaky?

Is it edible?

Is it alive?

What does Denise think?

At a training session with my trainer a week or so ago, I brought Milo to one of my classes. I had allowed enough time to exit the service dog safely from my car. I had allowed time for a short potty break. (Honestly, Chloe hasn’t been at home long enough for me to get out of the habit of some of these things. I found myself at a potty area recently and realized I didn’t have a dog by my side!). I allowed enough time. Not.

I did not allow time for all the new things my newbie partner was seeing. The grassy area was new. The trees and picnic bench were new. The ramp into the building was new. The automatic door push-button was new. At least… it was new to MILO. For just a brief second, I was mildly annoyed. I had not allowed time for appraising all of these new environments. That was MY bad, not Milo’s. I want my dog to be confident and aware of his surroundings. I was almost late to class, but the time I took “extra” was time worth taking. Newbies need some extra patience from those of us who are veterans to the schedule and environment. We owe it to them. But you know something?

Blowing It BIG!

I really know how to blow it. I mean, I don’t do anything half-way. This isn’t always a good thing. I recently became extremely exasperated with someone relatively new to “hearing again”. I try hard to be a positive advocate for people with disabilities, and chronic and/or invisible illnesses. This blog is, in part, a way that I try to raise awareness and encourage people to talk about tough subjects.

I see this lady about 3 times a month at the grocery store. Over a year ago she saw my CI, asked about it, and eventually had surgery herself. This individual was relatively new to hearing loss. She was still struggling to help the people important to her understand that the CI did not “FIX” her hearing. Instead it was restored to a type of hearing (bionically) and  she would still be in environments occasionally where she would need others to understand that she needed to 1) see their face, 2) slow them down, and 3) find a quieter spot. After listening to her for about ten minutes – really distraught about not feeling accepted –  I felt myself becoming impatient. We had this conversation before and I felt as if we were “beating a dead horse”. Remorse and shame immediately washed over me. I stuck my finger in my own face and preached, “Really, Denise? Really?” (Y’all are trying to figure out how you stick your own finger in your face, aren’t you?)

As I had (thankfully) kept my mouth shut, I continued to listen and realized she was now apologizing… “I’m sorry I keep bringing this up. I just can’t seem to help them understand that the CI was not a CURE. I’m so frustrated!”

I realized then and there that I needed to put myself in newbie shoes more often and remember how difficult those early years were. Advocating and educating take time. Families and friends do not just wake up overnight and suddenly “get it”.

I told her that I often forget how hard those early years were, and that she had to keep at it… eventually some of it would start to sink in for her family members.

As a person of faith, I believe everything happens for a reason. We may not always like the purpose behind God allowing something to happen, but there is always a reason. I’m also (gulp) old enough now to know that we may not EVER completely understand why something happened this side of Heaven. I have ALWAYS felt like that the acquired disabilities I have were allowed so that I could help others… or at least try to do so. I blow it. I blow it BIG. However, I think those of us that have lived the life a few years, owe it to the newbies in our lives, to lovingly coach, encourage, cheerlead, advise, and HUG often.

You are going to have newbies in YOUR life. Unless you are isolating yourself, you will have folks new to whatever “ails ya”. People will look to you for understanding and advice. You will be able to empathize much better than their doctor, their families, and their co-workers. Of all people – YOU get it.

Are you looking for a way to invest your life in someone with similar challenges? There are opportunities everywhere. You simply need to know where to look. Urban areas often have face-to-face support groups for various illnesses and disabilities. There are numerous online support networks, discussion forums, and peer supports. Many doctor’s offices and rehabilitation specialists have contacts to support personnel. Invest yourself in the life of a newbie. Remind yourself while investing how difficult those first years were! It shouldn’t surprise you to discover, sometimes by accident, the student becomes the teacher. Always, always be teachable.

Denise Portis

© 2015 Personal Hearing Loss Journal