This is My Fight Song

Published on May 7, 2017 by hearingelmo3 Comments

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?

A lot of fight left in me

ORIGINAL VIDEO

L. Denise Portis

Crappy Life Lessons

Published on October 11, 2016October 11, 2016 by hearingelmo6 Comments

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.

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

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?

We are shocked by something.
We are heart broken.
We look for someone to blame.
… 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.

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.

You should get a third opinion. You could treat this and prolong her life an entire year!
How could you let her live the last month of her life this way?
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).

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.

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

Accepting Help ≠ Dependence

Published on January 1, 2015 by hearingelmo3 Comments

This service dog took full advantage of a holiday vacation in Florida.

My Christmas holiday was a blur. They can be that way sometimes. I flew to Florida with my husband to be with my parents for Christmas, but I had a TON of homework. Chloe, faithful service dog, at least got the opportunity to really chill out. When I got home, I headed to an academic residency for 4 days.

Even being super busy, I still learned a few things. I learned some things about myself, about other people, and about acceptance. I began to lose my hearing and balance at the age of 25. Now that I am 48-years-old, you would think I have learned all that one can learn after living with hearing loss and a vestibular disorder for 2+ decades!

Ungracious Acceptance

Acceptance of my life as it is, seems to be an ever-evolving concept. Sometimes I take things in stride. Progression of the toll my diagnoses have, a new “timber – down goes Denise – fall”, having to switch out cochlear implant batteries mid-conversation, taking the elevator instead of escalator or stairs, and having to wait for an empty handicap stall in public bathrooms so that my dog and I BOTH fit, is really second nature for me now.

But sometimes? Sometimes I am WITCHY about it. (Feel free to put another first letter there as it probably fits from time to time). Maybe it’s hormones? Perhaps it is a lack of sleep? It may be I just had an unpleasant encounter with someone who was condescending towards me when my being differently-abled became apparent. For whatever reason, at times when someone asks if they can assist I must look…

S c A r Y

I assume this because their eyes get big, they throw up their hands in an “I surrender!” pose, and they take two full steps back. I don’t MEAN to put off that vibe, but I know there are times I must do so. I work SO hard at being independent. I love the color purple, but that isn’t why I carry a bright purple cane. I love dogs, but that isn’t why my 24/7 partner is a service dog from Fidos For Freedom, Inc. I love dangly earrings, but I don’t wear “bling-bling” on my cochlear implant because I’m a drama queen.

(OK, OKAY! I’m a drama queen, but in THIS instance it is not why I have bling-bling on my cochlear implant! Yeesh!)

I do all of these things to be independent. I yearn for independence and inner strength. I forget sometimes that the latter is the result of a “thinker” and “feeler” in sync in the body of a person who is differently-abled. Part of it, I actually HAVE caught the exasperated looks on faces when I do ask for help with something. It can be fleeting, but it’s there. I’m deaf, not blind. (We can debate if differently-abled people are far too sensitive about this and see things that are not there later).

Yeah, so? Let’s Go!

While in Florida, amidst homework and research, I did insist on going out to eat every day. I did a little bit of shopping at a place we don’t have in Maryland. Bealls was a very cool place! We also do not have a Belk. So yup. I did a little shopping.

When we went out on the town to do these things, we had to borrow my parent’s car. It is a big ol’ SUV and Chloe had to sit in the back compartment. It gave her plenty of room to stretch out and seemed like a great option for four people plus one service dog. The problem was that my parent’s SUV sits very high. Chloe is 10+ years old. She is retiring in May of 2015 (unless she lets me know it needs to be before then). The first couple of times I gave the “Chloe… OUT” command, she jumped from the back, only to have her front legs collapse and do a hound face plant in the parking lot. The first time it happened, I gasped. The second time it happened, I’m pretty sure I yelled. OK, yeah. I don’t yell. I have a hearing loss. I SCREECH. Ask me to demonstrate sometime, but bring the ear plugs.

Because my husband, Terry, didn’t want to see what a third time would trigger, he suggested, “Let me lift her out of the back and set her on the ground!”

I said, “Ok, but do it in a way you don’t embarrass her. Make it quick and don’t make a big deal about it.”

Perhaps I should explain that I disagree with those who say that dogs don’t exhibit or feel some of the same things humans do. I have seen dogs excited. I have seen them pissed. I have seen dogs pouting (do I have some stories about my grand-dog, Pegasus, or what?). I have seen dogs embarrassed. Point & laugh and dogs will duck their heads in shame/embarrassment.

Chloe’s weight ranges from 59-62 pounds. Needless to say, we don’t carry her around. I wasn’t sure how she would respond to being lifted from the back and set on all fours on the pavement; nor, did I know how she would respond to being lifted up into the back of the SUV.

The first time we opted to lift the service hound out, I held my breath. Terry reached into the back, hooked his arms under her and locked his hands over her spine, and carefully picked her up and set her on all fours.

PUH.

I exhaled rather noisily, and watched as she wagged her tail and moved to heel position, looking up at me as if, “Yeah, so? Let’s go!”

I was stunned. I had a treat in my hand to cajole her back into a good mood. Instead I went into the store as if nothing out of the ordinary had happened. I watched Chloe from the corner of my eye. (Ummm… explain to me how oval shaped things like eyeballs have corners?) I digress…

I fully expected Chloe to act, I don’t know… WEIRD for awhile. However, she took it all in stride. She needed the help, being rather fond of her own face, and didn’t even miss a step in going on about her job after accepting assistance.

Do you know where I’m going with this?

WHY???????

Why do we act so weird when we need help? Maybe it is just a little help.

… like picking up the dropped blue tooth device I spotted in a hallway that I could not bend to get, and didn’t want Chloe to destroy by enthusiastic fetching.

Maybe it was a lot of help.

… like helping me dislodge my wedged rolling briefcase from the elevator door as it was stuck solid. I struggled with my butt holding the door, cane braced, and dog freaking out as I tugged on a very STUCK wheel.

Sometimes? Sometimes, we just need a little help to continue doing our thing. We need a helping hand. We aren’t signing an I.O.U. If we truly want the world to be a kinder place, then why are we prickly when someone asks if they can help? By accepting help we are not sticking a “I’m WEAK” note on our forehead. We can accept help and still be independent. We aren’t waving all rights to an independent life should we accept help once in awhile. For most people, helping another is done so with no strings attached. They don’t even think twice about it. They may never think about it again, while WE sit there perseverating on it and making a huge deal about it. Why can’t we just say, “thank you!” and our attitude be, “Yeah, so? Let’s go!”

PRIDE.

Pride can be a good thing. There are good types of pride, and crippling types of pride. Learn the difference. Learn to accept help. It doesn’t mean you are signing on to a life of dependence. It means that you are SMART. You know your limitations and are making wise choices to do what is best for YOU. Face plants on the pavement aren’t fun. All you will have for that type of stubbornness is a skinned chin. (Ask Chloe…)

Denise Portis

Post-traumatic Growth (Part 1)

Published on January 2, 2014January 2, 2014 by hearingelmo1 Comment

Nope.

That isn’t a typo. You have probably read articles or news stories about post-traumatic STRESS (or PTSD), but did you know that post-traumatic growth is a related and now often studied psychological topic? There is even a new field called psychotraumatology. Try saying that 5 times really fast…

At Hearing Elmo, I do my best to present topics related to invisible illness, disability, or chronic conditions. Guest writers are encouraged to have some connection to one of those topics.

*SIDE NOTE* Hearing Elmo welcomes guest writers any time! Email me for more information at denise.portis@gmail.com with “Hearing Elmo” in the subject line.

As you know, Fidos For Freedom, Inc. (FFF), is a big part of my life. My service dog, Chloe, comes from FFF but I also stay connected through weekly trainings and volunteering for various jobs each year. The people there have become “family” to me and I have learned so much about the disability community through my connections at this wonderful organization. Something I have observed, is that even if you’ve taken the step to train and be matched with a service dog to mitigate your disability or illness – something that can take “guts” as it can make the invisible, very visible – not everyone responds to “bad things” the same way. Many times it is simply because the person has not adjusted yet.

As my dissertation looms in my very near future, I am already thinkin’ about…

What am I gonna do? (No worries. I *can* use a scholarly voice when the environment calls for it <big grin>)

But back to my original topic! How do people come out on the other side of something traumatic, and find that they’ve grown? Do they have something in common or is the outcome as individual as the process? How do you survive and be BETTER and not BITTER?

These questions are on my mind. A LOT.

I receive hundreds of emails from readers each year and try to respond to each personally. I’m always tickled that a common question seems to be, “How do you have your ‘stuff’ all together so well? I’m floundering here!” I am always quick to respond with an honest evaluation about my own life “after disability”. Folks are surprised. I don’t try to sugar-coat how I’m doing in my own life. I deal with the same things you do:

Depression

Anxiety

Suicidal ideation

Pessimism

The trick is not to stay there. Sometimes it can be worked through on your own. Sometimes it cannot. Sometimes we need help. So how do some people come out on the other side of something traumatic – better? How do people grow in spite of experiencing something devastating?

This is going to be a “two-fer” post. Meaning: I can’t address everything I want to cover in one post (smile). For this first part I want to cover what kinds of things can cause PTG (post-traumatic growth), and clearly define what it is. Next week we’ll look at some other related issues.

What causes Post-Traumatic Growth?

Traumatic experiences.

Kinda anti-climatic, huh?

But for OUR population – those who live with disability, invisible illness, or chronic health conditions – what is a traumatic experience? It can include:

disability

invisible illness

chronic physical or mental health conditions

devastating diagnosis

sexual abuse

violence and victimization

divorce or loss of an intimate relationship

death of a loved one

war

poverty

Basically – anything that can cause stress. Not the run-of-the-mill kind of stress. You know the kinds of stress like, a “bad hair day”, my cat threw-up in my favorite shoes, I locked myself out of the house, or I ate bad sushi. We’re talkin’ the kind of stress that produces trauma. It may be specific to YOU. For example, I have met people who have heard me speak on various topics and have come up and shared that they “don’t get why hearing loss would be a reason to develop depression“. They have hearing loss and they have coped just fine. Variables, my friends… variables. Personality, background, resilience, support, worldview, gender, economics – the list goes on an on. You may respond to a life event completely different than someone else. That’s OK. This is why you hear me encourage folks to reach out and SHARE. Your experiences may help another. You won’t know if you don’t talk about it.

What is Post-Traumatic Growth?

PTG is actually something that came from a branch of Psychology called – Positive Psychology. There are scales and inventories available to see where you rate in PTG. I first started reading about it back when my cochlear implant was first activated. “Hearing again” was a tough journey. I stumbled across the term coined by Drs. Calhoun and Tedeschi. According to them,

“What is posttraumatic growth? It is positive change experienced as a result of the struggle with a major life crisis or a traumatic event” (Posttraumatic Growth Research Group, 2014, para. 1).

Their research centers around 5 changes that occur in an individual, post-trauma. These include:

1. New opportunities

2. Change in relationships

3. Increased sense of one’s own strength

4. Greater appreciation for life in general

5. Spiritual or religious domain (Posttraumatic Growth Research Group, 2014)

Have you been diagnosed with a super scary, perhaps life-changing diagnosis?

Have you acquired a disability?

Were you injured, permanently changing the way you live life?

Have you experienced something that left scars (physical, mental, emotional)?

You can experience growth. It may not happen overnight. It may mean that you experience tremendous loss, fear, and grief at first. You may blow it. A LOT. However, I don’t know about you, but I experience a sense of hope knowing that something good can “come of this”.

Comment here or send me a confidential email. I’d like to know how you’ve experienced GROWTH. There is no prerequisite measure. Maybe it wasn’t a lot of growth. Maybe you experienced “three steps forward – two steps back” throughout the process. I’d love to hear from you!

Denise Portis

Posttraumatic Growth Research Group. (2014). What is PTG? Retrieved January 2, 2014, from http://ptgi.uncc.edu/what-is-ptg/

Purposeful Down Time

Published on December 18, 2013December 18, 2013 by hearingelmo2 Comments

I’m back in school. I never thought I’d return to school to be honest. All that changed when I realized that I may not ever land a full-time faculty position if I am constantly going to be applying for the same jobs as those with doctorates. Here I am – back in school.

I manage my time very effectively, almost obsessively. I am a very organized and detailed person. Something I have learned to do, however is to be very purposeful in my down time. For some reason, even though I found that it was fairly easy for me to be organized and to schedule my day, I was unable to enjoy any free time I might have. When I was “off”, I wasn’t really enjoying the time. I even recall telling my mother that if I didn’t have plenty to do, I was convinced it would contribute to my feeling depressed. “Be so busy you don’t have time to feel blue” was my motto, I guess.

The truth of the matter, this is dangerous. Some folks think their time is too valuable to be spent in frivolous activities. Some believe that there is too much to do to waste time doing nothing at all. I argue that not taking the time to simply “be” is deadly. You don’t have to search very long to find reports of Americans who are stressed. We seem to be over-worked, over-scheduled, and over-committed. I have family members who don’t take vacation time because their company will pay them back for it at the end of the year if they don’t use it. My response is, “Whaaaa…?”

(I’m very eloquent).

I’ve been reading “Essential Guide to Online Learning” as many of the classes I am taking to finish up my doctorate are in an asynchronous classroom. The author of the book explained that we need to “be present in your downtime” (Laureate Education, Inc., 2013, p. 27). In order to make time for school, work, family, errands, and all the “other stuff” we squeeze into our schedules, I employ the use of Google calendar. Every task has a specific color. As detailed as I am, however, every day has blank time slots open. FREE TIME!

“Let’s Par-teeeeeey!” Or not.

I try to be purposeful with my free time. If I choose to use my free time to read a good book, groom my dog, or take a walk, I mindfully do those things. So often, folks spend their free time worrying about what they have to do next in their schedule! How is that enjoying your free time? How does one reap any benefit from having some time to yourself?

The first time I realized I had trouble with this was when I realized I couldn’t even go to sleep at night. Here I was, drop-dead tired and weary, exhausted from having to “hear” all day and needing a good eight hours of sleep. Instead, I would lay in bed worrying about what I had to do tomorrow – often things that I had little control over. I was losing sleep over losing sleep. Oh the irony…

I realized that I was going to have to get serious about fun and relaxation. There are things I do each week for just me. There are things I do each DAY – although some days I have more time than others. If I have the time every single day to walk my service dog, Chloe, then by gosh when I’m walking her I will do nothing but walk her and enjoy the moment. I run into folks who are walking their dogs too. By run into, I mean that quite literally. Their attention is on their cell phone instead of the dog at the end of the leash. They are not looking up and around, which means they may not be aware of their surroundings, who is in their vicinity, or what *blech* they are getting ready to step in with their brand new walking shoes. I breathe deeply, look around, talk to my dog, and intentionally notice the world around me.

If I have 30-45 minutes to read before bed in order to decompress and unwind, you can be sure I am not reading a required text. I will be reading something for me… something that “feeds my soul” or “fires my imagination”.

This morning I had two hours to put up my family’s Christmas tree. The house was quiet, with hubby already gone to work and kiddos sleeping in since their work schedules were later. I mindfully put up my Christmas tree. I didn’t think about the assignment I had due by 3 PM. I reminisced as I hung old ornaments and strung lights. I arranged and re-arranged. I asked the dogs if things looked “purtee”. Then I turned off all the lights in the room, pulled the blinds down, and turned on the twinkle lights. I listened to Christmas music. I rubbed my dogs’ bellies. At 11 AM, however, I had research that I had scheduled to do in advance. However, I deliberately refused to think about it prior to my free time being “up”.

Do you need to be more purposeful with your down time? Do you need to reduce stress and schedule “me time”? Please feel free to share tips and favorite “purposeful me time” moments in the comments.

Denise Portis

©2013 Personal Hearing Loss Journal

Laureate Education, Inc. (2013). Essential guide to online learning. Baltimore: Laureate International Universities Publishing, Inc.

Team Chatter

Published on May 14, 2013May 14, 2013 by hearingelmo5 Comments

In public, I talk to Chloe constantly. May 4th I learned what this is called... — In public, I talk to Chloe constantly. May 4th I learned what this is called…

Photo by Julie Wu, volunteer and therapy dog handler for Fidos For Freedom, Inc.

A trainer exited Pi’s Deli behind me and said, “Great team chatter”.

I’m always so eloquent. I responded, “Ummmmm”, with a questioning look that spoke volumes.

Fidos For Freedom’s trainers have had a LOT of practice and experience with people with hearing loss. She rephrased. “Good communication with your dog”.

Oh.

When I hear a “new for me” phrase, I am often scrambling to catch up to the conversation as I work to interpret the meaning. Having been partnered with Chloe since 2007, I think I can safely say I’m a veteran team. That doesn’t mean that I don’t still learn new things, however. Phrases like “team chatter” may be heard, but not understood until I spend a few minutes pondering it.

What does it mean?

Team chatter is important in a service dog team for two primary reasons. Team chatter keeps your dog’s attention on YOU if you use their name a great deal and talk to them. A second reason, however, is that service dogs need to know when they are doing something right! The tone and certain words connect with them.

This trainer may not have put two and two together like I did when preparing for this post. But the trainers use team chatter as well. When I did something right, this trainer told me so. If something needed polishing, she would tell me. She gave feedback throughout the certification segment we were doing that morning. She is a trainer and I am a client. However, we too, are a team. We are co-volunteers – even teammates in an organization we both love. Fidos For Freedom, Inc. (see http://www.fidosforfreedom.org/ for more information).

Why People with Invisible Disabilities Need Team Chatter

In psychology we use the phrase, words of affirmation, to explain the inherent need we have to receive “high 5’s” literally and figuratively.

Paul Hulijich explains, “The mind is very powerful, and it needs to be spoken to. We are all aware of the power of being told, for example, that we look well; it often immediately evokes the feeling of being well. We are influenced by what people say to us” (Hulijich, 2012, para. 3). Since I have had to learn to do a great number of things “differently”, it means a lot to me when a trainer, friend, or family member tell me that I handled something well.

At my daughter's college graduation, May 11, 2013. — At my daughter’s college graduation, May 11, 2013.

My husband praised me for how I chose to ascend and descend a number of steps in various arenas this last weekend. Even with Chloe in a close “heel”, I’m just not safe on steps in large cavernous – or open air – places. I didn’t make a big deal about it, only reminding Terry, my husband to either stand immediately in front of me, or behind me. Placing a hand on his shoulder is all I need to keep from falling when going down steps. Going up is a little trickier, but we still have a well-rehearsed plan. He told me, “You use steps with a lot more confidence now. You don’t even miss a beat”.

I don’t know about YOU, but it means a lot when someone notices what was once trial and error, becomes a well-polished, good habit. I need affirmation when I’m told that I pick up cues about my volume better. It means a lot when someone notices that I grin and advocate when having a near miss in a crowded hallway, and make it a learning opportunity.

One day last week, Chloe did not accompany me to work as she wasn’t feeling well. (She has chronic early morning acid reflux). I only had two classes that day and so opted to let her stay home with my husband since he was off. Just like any normal day, I dropped a number of things in the classroom. One student watched with wide eyes as I braced myself against a desk and used my foot to pick up a stack of quiz sheets with a rubber-band around them. “Oh my gosh, you do that without even thinking about it! You live YOU very well!”

I blushed but also BEAMED at the impromptu praise. What Greg said, echoed the beat of my heart. This is what I want – to live ME very well.

We Can Use Team Chatter too!

Do you have a hearing loss? Do you live with a balance disorder? Have you learned to navigate life with low vision? Do you have a chronic or invisible illness? Whether you are new to “the new you”, or a veteran, there are people around you who could use some team chatter.

I know, I know! It may not always seem as if they are ON YOUR TEAM, but there are still co-workers, friends, and family members who could benefit from being told when they are doing something RIGHT.

Sarah, a person with low vision, once asked me where her husband was. I pointed and said, “He’s right over there”. She reached up and grabbed my pointing arm and followed it with her hand in the direction I was pointing. Off she went in the RIGHT direction, leaving me pondering my own OOPS. After that, I did much better about responding with phrases like, “at your 9′ o’clock”; or, “over your left shoulder about 25 feet away”.

She noticed. “Denise, you do a great job at giving me directional assistance. It really helps!” I’ve tried to remember to do the same for the folks in my life.

“Thanks for re-phrasing that. I understood it perfectly the second time. You don’t even have to think about doing that for me now. Thanks!”

“I appreciate you habitually moving to allow me to stand next to the side when we get on the elevator. It really helps to have something to lean against”.

“Thanks for ignoring Chloe when we talk in the office. I know you love dogs, and because she knows you it can be hard to ignore that wag! It really helps me though, so thank you!”

As a person with both Meniere’s disease and hearing loss, I do a lot of reminding about what works well to assist me, and what does not. (This can be tricky because we don’t want to embarrass or offend someone!) Sometimes I feel like I’m constantly in “education mode”. Yet, we need to remember to tell folks around us when they get it right! It affirms what they do or say in interacting with us. Perhaps they even just need to hear that they “leave us be” in a healthy way! “Thank you for not assuming I needed help with that and waiting to see if I ASKED for help”.

I hope you will work to incorporate team chatter into your own relationships. Words of affirmation and open communication can be so important. Don’t assume others know when they are doing a good job. Let them know!

Hulijich, P. (2012). Affirmations. Psychology Today. Retrieved, May 12, 2012 from http://www.psychologytoday.com/blog/mind-wellness-awareness/201211/affirmations

Denise Portis

Overkill?

Published on April 20, 2013April 20, 2013 by hearingelmo5 Comments

At the beach in Ocean City with cochlear implant, hearing aid, and hearing assistance dog

1. I’ve had people with cochlear implants before ask me why I don’t just use a cochlear implant. One (or two) works for them after all!

2. I’ve had people with hearing aids ask me why I choose to get a cochlear implant in my “worse” ear.

3. I’ve had folks with CI’s and HA’s ask me why I use assistive devices in the classroom if I am “hearing again” so well.

4. I’ve had people with cochlear implants ask me why I need a hearing assistance dog if I’m hearing so well now.

5. I’ve had people who were culturally Deaf ask me why I don’t just use ASL since I am proficient in the language.

6. I’ve had people who were late-deafened ask me why I do not just continue to speech read. Why embrace technology?

Overkill?

These are all legitimate questions. I will do my best to answer them.

1. I’ve had people with cochlear implants before ask me why I don’t just use a cochlear implant. One (or two) works for them after all! Not everyone who qualifies for a cochlear implant can go bilateral. I have Meniere’s disease and I barely squeaked by in pre-surgical balance testing to be a unilateral candidate. I use a hearing aid in the opposite ear because – well, because my audiologist told me too! My audiograms and testing each year astonish my audiologist at Johns Hopkins. Who would have thought I could hear this well? However, the proof is clear. I gain an extra 3-7% when I use a hearing aid in my unimplanted ear.

2. I’ve had people with hearing aids ask me why I choose to get a cochlear implant in my “worse” ear. I chose to get a cochlear implant because with the best BTE hearing aids available, I could no longer hear well enough to carry on a normal conversation. I learned all I could about cochlear implants and took the “plunge” in April of 2005. I’ve never regretted it. A comparison of my audiograms can be found at this post: CLICK HERE.

3. I’ve had folks with CI’s and HA’s ask me why I use assistive devices in the classroom if I am “hearing again” so well. I hear great in “most” indoor environments. I even hear outside fairly well if there is not a lot of competing noise. But let’s face it. Listening environments are not the same. Some rooms are huge with cathedral ceilings. Some have all hard surfaces. I use assistive devices because it helps to eliminate one of my greatest enemies. NOISE. Isn’t it funny that as a “hearing again” person, noise interferes with my hearing well? My favorite device as a teacher is my clipboard. You can read about it at this post: CLICK HERE.

4. I’ve had people with cochlear implants ask me why I need a hearing assistance dog if I’m hearing so well now. This is probably the number one question I receive in person, from readers on Hearing Elmo, through FaceBook, and through email. My hearing assistance dog from Fidos For Freedom gives me something that my cochlear implant and hearing aid do not. Independence. When I trained to be matched with a service dog, I was not only learning the commands, but also learning to watch my dog – and to trust my dog. I needed that training! I am confident in knowing that if I do not hear something, my hearing assistance dog will let me know. This may mean becoming aware that a car is coming up behind me in the parking lot. It may mean that I will know before rounding the end cap, that there is a noisy family on the next aisle. I know if I drop things. I know if intercoms are giving announcements. I know about alarms going off. I know when people are saying “excuse me” so that they can get past, and much, much more. I feel safe. I feel confident. I am independent. I didn’t feel those same things when only utilizing a CI and HA. (Besides with my balance issues, Chloe has become just as necessary to me because of her balance work).

5. I’ve had people who were culturally Deaf ask me why I don’t just use ASL since I am proficient in the language. Bottom line? I am not culturally Deaf. I was not born with hearing loss. Everyone close to me has normal hearing. Don’t misunderstand. I love ASL and have been teaching the language for over twelve years. I actually rely on sign at home if I’ve taken my ears out (as well as speech reading). However, I was born into this world with ears that hear. It made sense (to me) that when I began losing my hearing that I fight to regain as much of that as I was able to do. I do not criticize those who embrace their deafness. I love the culturally Deaf and have learned how to advocate in a positive way from Deaf friends. But… I’m not Deaf. I am a person with hearing loss who is “hearing again”.

6. I’ve had people who were late-deafened ask me why I do not just continue to speech read. Why embrace technology? Speech reading (or lip reading) is not an exact science. Don’t believe me? Try it sometime. Get a friend or family member to voice some simple sentences with their volume “OFF”. Can you accurately pick up what they are saying?

According to the CDC (2012), a good speech reader will be accurate 4 to 5 words in a sentence of 12 or more words. I have news for you. 33-50% by the BEST, means they are not communicating well. Even for those who are terrific at understanding “in context”, will still be asking for repeats or clarification (or sit there “lost”). I still speech read some. It is only an additional tool to help me communicate at my best, however.

Use It All!

So. Is the way I’ve chosen to stay connected, to communicate, and to hear the world around me overkill? Perhaps to some it is. However, these choices have helped me to cope, to interact, and to be a confident “hearing again” adult responsible for my own communication. If you are a person with hearing loss, you have chosen your own path, too. I respect that! I am grateful to be living in an age where so many options are available to people with hearing loss. Decide how you want to engage the world around you – and then OWN IT.

Do you use additional things to hear at your very best? Please feel free to share those options by commenting on this post.

Happy hearing!

Denise Portis

Center for Disease Control. (2012). Hearing loss in children: Learning language. Retrieved April 20, 2012, from http://www.cdc.gov/ncbddd/hearingloss/language.html

“You are Getting Sleepier…”

Published on October 22, 2012October 22, 2012 by hearingelmo1 Comment

— Oh for a patch of sunshine and an afternoon nap…

“You are getting sleepier…”

I could have handled a little hypnotic suggestion this past Friday. Thursday morning before going to work, my hearing assistance dog did just what she was suppose to do – sort of. I had just placed my breakfast of bacon and eggs on the table when Chloe alerted me to the front door. I went to see who was there to find the UPS man and a delivery for my husband. I should have been suspicious. Chloe normally wags and flirts with whomever is at the door, but she disappeared while I made small talk with the UPS guy.

Meandering back into the kitchen I noticed all three dogs sitting in a row, Chloe closest to the table of course. My plate was empty. As a matter of fact, it had been licked so clean it appeared to have come straight from the dishwasher. I fussed, even though I knew it was my own fault. Well-trained assistance dog – yes. Still a dog? YES.

I could have predicted the outcome, but was sort of hoping if I kept my hypothesis to myself it may not prove to be true. But my sensitive-tummy service dog was sick as a – ERM – DOG, by Thursday evening. As a matter of fact she was sick all night long. I was up every 90 minutes to 2 hours with her – for up to 30 minutes at a time. At 3:30 in the morning, I sent out an email to all my students cancelling classes. I was so tired I was hallucinating. Seriously. After taking Chloe out around 3:00 AM I was freaked out by the hundreds of mice running all over the yard – or so I thought since I was seeing things that weren’t there.

Being a person with disability, I require more sleep than an average adult anyway. It wasn’t until hound dog was feeling better Friday night that I finally got a solid nine hours of much needed sleep.

How Much Sleep Do You Need?

According to the National Sleep Foundation, average, healthy adults need 7-9 hours of sleep every night (National Sleep Foundation, 2011). While most of us very likely receive far less than that, the experts agree that this is the amount we should strive for every night. However, people who live with disability or invisible illness may actually require more. At the very least, these folks should make the 7-9 suggested hours a priority.

People with arthritis may need more sleep (Eustice, 2012), as do people with epilepsy (NYU Langone Medical Center, 2012). What can be frustrating, however, that for many living with invisible illness or disability, sleep disorders are often a co-morbid diagnosis. I know people with fibromyalgia, Lymes disease, and other chronic pain conditions that explain sleep is difficult to obtain. Your body may need extra sleep; however, because of the illness itself the person may have difficulty falling asleep or staying asleep.

Training along side of fellow clients at Fidos For Freedom, Inc., I have a new “family” of folks who have various disabilities and illnesses. Some have chronic pain conditions, some have MS, mobility issues, Parkinson’s, and hearing loss. Since getting to know them over the years, I have heard ALL of them explain they simply do not get enough sleep, or have trouble getting a full sleep cycle in each night. As a result, each have stories to tell of “things getting worse” and symptoms causing near accidents or actual falls, bumps, bruises, etc. I recall overhearing a conversation of one of the trainers talking to a newly matched client. They were falling more and having trouble with even cognitive functioning. The (wise) trainer asked them, “How much sleep are you getting?” The client explained that they were so excited about this new chapter in their life that they had trouble sleeping – night after night. They quickly surmised this may be increasing the severity of some of their disease’s symptoms. Sleep matters!

People with hearing loss may actually require more than the average 7-9 hours necessary for most adults. According to Healthy Hearing (2008), because our brain is actually more involved than our ears in communication, a tired brain can impair how well we hear. Even if we are “hearing again” with cochlear implant, BAHA, or hearing aids, sleep deprivation may impair our ability to communicate well and to maximize what we are able to hear.

People with hearing loss often forget how much harder they have to work to communicate effectively. As a result we actually tire out much faster than our normal hearing peers. If you must pay attention and concentrate wholly on a conversation to adequately understand and respond, your brain actually TIRES.

I also have Meniere’s disease, a vestibular and balance disorder. Because I have to pay attention to stepping up, stepping down, avoiding visual vertigo triggers such as ceiling fans, paying attention to my surroundings to avoid snags in carpet, etc., I actually “think my way safely” throughout each and every day. It can take a lot out of me to constantly remain on “high alert” to possible problems to avoid falls.

So Exactly How Do I get More Sleep?

There are NUMEROUS places online from which you can find information about how to get a better night’s rest. Some of these “tips” include:

1. Avoid caffeine 5-6 hours prior to when you plan to go to sleep.

2. Avoid complex carbohydrates such as breads, pasta, and sweets several hours before bed. Some experts suggest avoiding eating ANY large quantity of food before bed.

3. Avoid exercising within several hours of when you plan to go to bed.

4. Limit “light” – especially those created by many types of technology and electronics. Computers, iPads, televisions, etc., all may stimulate your brain activity and make it more difficult for you to sleep.

5. Worried? It can keep you awake. Try writing down things you need to get done the next day so you do not lay in bed worrying about remembering to do them. If you are worried about things you cannot control, try talking to someone. It doesn’t have to be a counselor – even a close friend or family member may work.

6. Try going to bed at the same time every night. Many stay up later on Friday or Saturday nights. This can actually disrupt our sleep schedule. Our bodies like routine – especially when it comes to sleep. Or, you may love sleeping in on Saturday morning. This too, can disrupt our sleep schedule. Try waking up and going to bed at the same time – no matter what day it is.

7. Many people sleep better in a dark, cool room. Do you need to purchase room darkening blinds? Maybe purchase a fan for just the bedroom?

8. Depending on who you read, opinions vary about whether or not taking an over the counter sleep aid like Tylenol PM or even Benedryl can be helpful. There are also medications specifically FOR sleep, though most warn they are not to be taken long-term. There is a new drug to hit the “over the counter” scene called “ZzzzQuil” believe it or not – made by NyQuil. It has been getting fairly positive reviews. Some may find they need a prescription sleep medication. Discuss with your doctors any risks associated with the prescription.

Do you think you are “getting by” on what sleep you are able to get? There are too many articles (written by medical experts) that show links to very serious, even life-threatening health problems for those who are chronically sleep deprived. Check out this great article by Dr. Stephanie Schupska at WebMD: Click here. “Not Enough Sleep: 7 Serious Health Risks”

Please feel free to comment and share how sleep deprivation has posed problems for you; or, ideas about how to get a better night’s rest!

Denise Portis

About.com Arthritis and Joint Conditions (2012). Arthritis patients need more Zzzzzz’s. Retrieved October 22, 2012 from http://arthritis.about.com/cs/betterliving/a/needmorezzzzzs.htm

Healthy Hearing (2008). Sleep your way to better hearing. Retrieved October 22, 2012 from http://www.healthyhearing.com/content/articles/Hearing-loss/Treatments/24201-Sleep-your-way-to

National Sleep Foundation. (2011). How much sleep do we really need? Retrieved October 22, 2012 from http://www.sleepfoundation.org/article/how-sleep-works/how-much-sleep-do-we-really-need

NYU Langone Medical Center. (2012). Sleep and Epilepsy. Retrieved October 22, 2012 from http://epilepsy.med.nyu.edu/living-with-epilepsy/epilepsy-and-lifestyle/sleep-and-epilepsy

What I SHOULD Have Said

Published on October 15, 2012 by hearingelmo7 Comments

I’m not really a history buff like some of my siblings, but I do like to watch the occasional autobiographical movie or read books on real people. I have, however, always been an Abraham Lincoln fan. I’m so excited about the new movie coming out and hope it does not disappoint. (Lincoln – the trailer). Needless to say, I’m also a big fan of President Lincoln’s quotations. Many of them I have memorized from my childhood and throughout my life.

In preparing for this post, a quote of President Lincoln’s came to mind: “I will prepare and some day my chance will come.”

I’m a big fan of using hindsight to our advantage. One of my favorite training exercises at Fidos For Freedom, Inc., is role playing… actually putting ourselves in scenarios where we face incredulous, doubtful strangers, belligerent business owners, or even just curious but nosy bystanders. These exercises have allowed me to practice what I need to say – not IF – but WHEN I need to have the words to explain my need for Chloe. I know I may need to defend my right to mitigate my disability with an assistance dog.

Experience Can Be a Harsh Teacher

Did you ever have something happen that was totally unfair? Feelings of righteous indignation and self-preservation well up and literally choke the words right out of you? I’m one of those poor folks who rarely says what I should have said at exactly the right moment. Instead, my feelings are hurt; or, I’m madder than a wet hen. Not… that I’ve ever seen a wet hen despite my childhood experiences of owning and caring for chickens, but I digress..

Ever replay a hurtful or confrontational conversation over and Over and OVER again in your head… thinking about what you SHOULD have said? Well I take Abraham Lincoln’s advice to heart. “I will prepare and some day my chance will come.” Now I’m the first to admit that one can perseverate on a past hurt and be much worse off than if you just let it go. I’m a planner though (at times to a fault).

If my feelings are just hurt and it is someone I don’t know well, I just let it go (though I may replay the entire horrible episode to my patient husband). If it is someone I have a relationship with, I may decide to let them know that I didn’t like how the conversation went and came away hurt and would like to discuss it some more. However, most of the things that hurt my feelings or ruffle my – erm – feathers, are comments from total strangers or mere acquaintances.

How many of you have heard these comments? :

But you don’t LOOK sick.

You were just fine yesterday. What’s wrong today?

You are feeling poorly AGAIN?

Are you ever well?

You seemed to hear me fine the other day on the phone.

Don’t you get tired of being so lethargic?

I think you are just low-energy.

You are such a drama queen!

Are you sure it isn’t all in your head?

I love my dog too, but I don’t self-diagnose a disability just so I can be with them all day.

Maybe you should see a counselor…

I knew you the first 20 years of your life. There was nothing wrong with you then!

Is this all for attention?

Don’t you worry how your family will feel having to pick up the slack?

People with invisible disabilities, illness or chronic conditions often LOOK just fine. Being late-deafened, I speak with little or any “deaf accent” or enunciation issues. With a cochlear implant and hearing aid (a bi-modal, hearing again peep with BLING), I often hear voices well unless there is a lot of background noise. If it is a sunny day, I not only may have very little “wobble” in my step, I may actually be able to move fast. So to look at me – well, I look fine! But on rainy days or in environments with tons of LOUD surround sound, vertigo can hit me like a freight train and cause me to walk as if I’m intoxicated. I usually clam up because if I speak I may vomit. (I’m serious…)

I have friends here in Maryland, and cyber friends I have come to know across the nation – many of whom are fellow bloggers. They have fibromyalgia and/or chronic fatigue syndrome. Some have assistance dogs, some do not. Some have been diagnosed with Lymes disease. Have you ever thought about how difficult it must be to have a chronic pain condition? And oh my goodness… talk about your invisible conditions! If you don’t know the person well enough to see the pain-filled eyes or pinched expression, you would never know that every step is excruciating – that even their clothing rubbing against their skin actually hurts.

Prepare – it Empowers

Those of you who live a life described above or know someone who does, my advice is to prepare. Use hindsight to your advantage. Think about an encounter that really hurt you – or made you squawk. Chances are, you will hear it again. (I know – GROAN – right?) Plan and prepare, even practice what you will say in the future should that same thing happen again. This can actually empower you to face that “next time” with a little more certainty and courage.

But Be Careful…

I do have some warnings, however. Even good things can become bad things.

1. Don’t be consumed by the preparation.

If all you think about is being prepared for a calm but meaningful/careful reprimand, you may unleash it with venom or saccharin sweetness. Your intent becomes a premeditated choice to wound. You end up saying the wrong thing or say it unkindly and in an offensive, war-like manner.

It could also become a set-up or scenario of revenge. Trust me. You do NOT want to live that way. (Tried it – not a winner any way you look at it).

Use your time wisely in reflection and preparation, but then let it go. If you are thinking about it constantly it should “wave the red flags” for you that it has become an obsession instead of a tool to develop positive responses.

2. Don’t look for what is not there.

After wobbling into the edge of the stove and spilling my coffee, I heard my husband sigh beside me. I turned (aimed) and yelled, “What? You think I like spilling everything I carry? You think I enjoy getting burned? Do you think I…”

He cut me off with a gentle squeeze of my arm. “Denise. I sighed because someone ate all my Lucky Charms.”

OH.

If you are reading this and KNOW someone who has an invisible condition, may I give you some advice? I know it must be frustrating to not ever really understand HOW to help or WHEN to help. But the best thing you can do? Listen and believe.

Denise Portis

The Road to Rescue

Published on September 28, 2012September 28, 2012 by hearingelmoLeave a comment

A young woman I have come to admire, Hunter Lia Zager, received her service dog from Fidos For Freedom, Inc. where I train with Chloe. Hunter has a rare and unusual disease that even leaves her doctors stumped at times. She desperately needs the funds to get her vehicle modified for accessibility. The state is helping with a big chunk, but she still needs to raise over $12,000 herself. Hunter is only 25 years old and currently relies on (often unreliable) public transportation to go to work, doctor appointments, and much more. Imagine being limited to your home many times, simply because you lack a vehicle that can carry wheelchair, service dog, etc. Minimum donations are only $1.00 and you can donate using PayPal, or debit or credit card. If you would do two things?
1) Share this need with others on your own BLOGS.
2) Consider donating – even SMALL amounts add up.

I know times are hard for many people. However, I want to help this courageous, wonderful young woman reach her goal so that she can have reliable, accessible transportation. Please help. Please share! Thank you!

TO DONATE

Hunter’s story:

My name is Hunter Lia and for the first time in never I’m asking for help. At 25 years old I am terminal, but I have never held my arms up and said I was willing to stop my fight. 5.5 years ago I became ill with a very rare neurological disease, Complex Regional Pain Syndrome (CRPS), the most excruciating disease known to modern medicine. The road has been hard, but I am so terribly blessed to have such wonderful people and a wonderful service dog in my life who have helped carry me through the toughest of times.

This disease has consumed my entire body and caused me to reach deep stage 4. CRPS didn’t stop there, it turned my body into melting pot of other diseases. It has paralyzed areas of my body such as my intestines, which are incapable of processing food (Gastroparesis), created a neuro-cardio disease, Postural Orthostatic Tachycardic Syndrome, a neuro-pulmonary disease, Respiratory Dystonia of the Chest Wall, Spinal Stenosis, and countless other conditions and diseases. It is also now believed that on top of all this, Multiple Sclerosis (MS) might be one of my latest additions. Having every aspect of your body fail you is a tremendous burden for one to carry, especially when you’re just 25. Most 25 year olds are able to go out at night, travel, make plans for the future…for me, just the thought of that takes up all my energy. I wear devices for low hearing and low vision, but outside of attempting to take my wheelchair and service dog everywhere, it’s difficult to make my life easier and manage with a disintegrating spine, excruciating pain, and countless other symptoms and challenges.

One reason I’ve struggled so much is that my vehicle is not accessible. I traded in a SUV for a minivan in the hopes I could outfit it to all my body’s needs. I never realized the costs would be over $45,000 to adapt the vehicle. I am getting state assistance, but the last 25% is my responsibility. With all the other medical expenses I’ve had to incur, I don’t have even a fraction of the money to pay the company responsible for outfitting the car. I need your help. I am trying to raise over $12,000 to make my vehicle accessible. If I could do this, I would no longer have to worry I wouldn’t be able to keep my job and health insurance due to transportation challenges, worry about not having a vehicle in an emergency, reach doctors and specialists, and really just live life to the fullest. I know this economy is difficult, but every penny will help me reach my goal. And if that’s too difficult, passing this on would mean the world to me. Thank you for taking a moment to ready my story.

TO DONATE