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

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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

When Rules Don’t Apply to YOU

dog-with-pen

*tongue in cheek*  It ROCKS when a guest writer chooses to post here at Hearing Elmo. I welcome guest writers and if you ever feel the “itch” to write, email me at denise.portis@gmail.com  Today’s post comes from Milo-bear, my second service dog.  Let’s welcome newbie writer, Milo, to the blogosphere and trust that what he has to say can be echoed by many service dog teams.

I have working clothes. Don’t laugh… you have them too. I pretty much have a great time side-by-side with my human partner 24/7. However, when my working clothes go on — my vest — I am having fun WORKING. Oh… I also happen to be GQ handsome.

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Denise has had a lot of people come up to me that she does not know asking to pet me. When we know the person already, Denise actually likes for us all to say hello because I can be kinda aloof and she doesn’t really want that being a teacher and all. She draws the line at sniffing butts though so I have learned to lean, wag, and keep my nose to myself.

Sometimes though, a total stranger comes up and starts talking to me. One day last week at the craft store, someone came up and leaned down to talk to me totally ignoring Denise. If they had been paying attention, they would have seen Denise desperately gripping the shelves and trying to keep from wobbling as this person invaded our space. The stranger said, “Oh I just love working dogs. I have always wanted to see if that was something I could do… train working dogs. Oh my, you have a very cool vest pretty boy. Don’t you look handsome!?” Now – mind you – I couldn’t argue with the handsome part, but this gal was missing two important clues:

  1. My vest says “Do not Pet” and “Do Not Distract
  2. I neither speak NOR interact with strangers. They are STRANGE.

I was so proud of Denise! She hates to make people feel badly, and at times she puts herself at risk by not standing up for herself. Perhaps it was because she was wobbling SO MUCH, that she immediately chimed in on the tail end of this stranger’s gushing intrusion to say, “Yes, isn’t it a nice vest? Complete with patches asking you not to pet or distract him”. 

I would have high5-paw’d Denise, but hey… she was wobbling enough and I didn’t want her to do a face plant. The stranger kind of sputtered and backed away. Then with a huff, she turned on her heel and walked away. I yawned really big trying to relax and Denise scratched me behind the ears and talked quietly to me. I didn’t understand everything she said, but it was something along the lines of just wanting to shop without the drama.

Denise doesn’t partner with me to create drama. I’m her helper to reduce the drama. She wobbles less when I’m by her side. If she drops something I get it for her. And ya know something? My gal pal drops things A LOT. I’m ok with that because – heck. I get paid to just pick it up and give it back to her. I have the world’s best job. I do things that are super easy for me and get treats and affection for my efforts! If Denise  reaches for dropped items, she tends to end up on her butt – which I have to tell you is OK with me too because I can easily kiss her whole face when she is eye-level.

When I know someone, the whole scenario is different. For one thing, I don’t stiffen up. I usually start to wag like crazy. I just can’t help it. When I see a friend my tail just wags and wags. Denise releases the tension some on my leash and I can say a quick hello. When it is a stranger though, I’m nervous and she is nervous. I’m thinking, “WHY are they talking to me? Who IS this strange person staring at me and in my space?”

A couple of weeks ago, Denise and I had a break after a class. This was before the pant-’til-you-drop heat hit our area. We were sitting outside on a bench enjoying the sunshine. I was double-daring a butterfly to come a little closer, and Denise was checking her email on her phone. Some students came pushing and shoving their way around the corner and then stood right in front of us. Denise was a little startled, but continued to sit and check her email. I was SERIOUSLY uptight. I mean… they chased off my butterfly! Boy was I peeved. And then you know what they did? They all had their phones out and were jostling each other and pointing their phones at us. Here I was surrounding by all these noisy and rowdy strangers, and all of them were pointing their phones at us. My hair stood up and I made sure Denise could feel my tension all the way up through the leash. She looked down at me, looked up at the students and said, “Ummm. Let me guess. Pokemon GO?” They completely ignored her. Thank goodness they didn’t hang around long. I was starting to get really antsy. After they left Denise reached down to scratch my ears again.

“People can be clueless sometimes, Milo. Don’t let them bother you. I would have moved but DARN IT. We were here FIRST”. 

I sighed really loud and pouted about not getting that butterfly. I tell ya what, I just don’t get people sometimes. I worked my butt off all morning, showing Denise where sounds were coming from, picking up things she dropped, and standing behind her while she wobbled at the board. She calls this command “WRAP”. I just call it smart, because it only takes my touching her on the back of the legs to keep her from wobbling so much. Anyway, I worked my tail off this particular morning. Well ahem, not literally of course. I just wanted to rest a bit – and yeah ok. I wanted to eat that butterfly, too. Instead, rude strangers caused me to get my hackles up. SMH.

Some people don’t think the rules apply to them. It’s just common decency to not invade someone’s space, make a lot of noise, and point your phone at them. That’s a rule even dogs understand. When my pack mates put their butt in the air and wag their tails at me, I will come over and say hello. If they are laying still and have their face pointed away from me though, I figure they are staring down a butterfly. This body language and lack of eye contact means that I know to stay clear. Especially my older sister, Chloe. That girl can be Grrr-ummmm-py! She still does the kitchen timer alert for Denise, and let me tell ya… you better get out of that girl’s way when the kitchen timer goes off. I watch her body language. I know when Tyco wants to play and I also know when his legs hurt and he wants me to leave him alone. People need to just pay attention to my body language when I’m trying to help Denise. Better yet, they need to know the patches on my vest are rules to be followed. Not because I’m snooty. I have a job to do and can’t do it if you come into my space and act like we are best buds.

I know what strangers are. When Denise’s classes start, everyone is a stranger. However, the students that sit in the front are students I start to recognize. After a few weeks of class, sometimes when Denise is talking I will lean over and put my head on a student’s desk and make goo-goo eyes at them. They aren’t a stranger anymore. At this point though, WE KNOW EACH OTHER. They may laugh and tell me I’m a silly boy, but it doesn’t distract me because I know them. Even knowing me they don’t take advantage. They know the rules. Towards the end of the semester, Denise will take off my vest right after class. OH BOY! I get to say hello to all the front-row students. Naked=Right to Visit. I take advantage of any naked time I can get.

So I guess what I am trying to say is that I know seeing me where you shop, eat, or work grabs your attention. I thought I gathered folk’s attention because I am so incredibly handsome. I’m sure that’s part of it, but it is also because some people just love dogs. Let me tell you a secret though. One of the things I’m most proud of is that Denise shops, eats out, and works because I make that possible. She told me that before Chloe she was almost house-bound. She was scared to do anything because people would jostle her when she didn’t hear them and knock her down. After Fidos For Freedom, Inc., came into her life — first with Chloe and now with me — she went back to school, went back to work, and shops alone. Listen up though… if you are a stranger and invade our space and make a grab for me? Well Denise goes back to being in danger of falling really fast. That makes her nervous again. If we know you, it’s different. Think about it this way: Would you go up to a stranger and only talk to their kiddo, and reach out to touch them without asking? Sometimes I sigh and wish I could say, “AHEM. The eyes that matter are up HERE“, and swing to point at Denise’s face. Denise said, “eyes up here” is kind of kinky and doesn’t mean what I think it means. So I haven’t tried to correct anyone with that yet.

Rules are rules. If you see a service dog with a partner in public, it may be obvious at first glance why that dog is with that person. A lot of times, though, it may not be obvious at all. Just trust that a working dog is WORKING. If you do not know them, let them shop. If you do not know them, let them eat in peace. If you do not know them, let them work and do their job. Service dogs are like a piece of adaptive equipment. You wouldn’t pet Denise’s cane would you?

A specific exception for just Denise, is that if we know you it’s great to say hello to me and scratch my ears for a minute. Denise wants me to know that there are friends in the world and to recognize them. If I don’t know you though, how about you just let me do my job? That way Denise is safe and I can focus on why I am with her. If you have to take a picture of me, cuz seriously I’m drool-worthy, just be sly about it and don’t make a scene.

Milo-bear Portis

Successor dog extraordinaire

 

 

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.

Tree Hugger

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The weather is finally feeling “Spring like”. The trees are all budding out and blooms galore, decorate my neighborhood. It ain’t all good. *achoooo* – but allergies seem a small price to pay for such pretty walking weather.

A couple of days ago, I ventured out of my immediate neighborhood and down a nearby walking trail. I’ve posted about beavers and bullfrogs in other posts as the path stretches along the perimeter of a small pond. At “the bend in the path” where the trail takes a sharp right turn, a huge tree was cut down. This was supposedly done to insure the path remained semi-straight. When I first saw it last year after this section of the trail was finished, I grieved a little seeing that this huge tree was chopped down and for the apparent reason it was hauled away. I haven’t been down this path in months and months. When I got closer to the remains of this giant, I looked for the scarred stump. I was surprised at what I saw. Every which way, new growth and small branches, sprouted from the stump.

I almost became a “tree hugger“. Not in the traditional “activist” sense, but I was so excited to see that it had persevered! I even took a few steps off the path to see how to approach for a hug. Seeing no great way to latch on and SQUEEZE, I instead reached out and calmly high five’d a small branch closest to me. I stood and silently celebrated the fact that this tree was still alive, determined to continue in spite of being chopped down!

Have You Felt the Woodsman’s Axe?

I turn 49 this year. Honestly, growing older doesn’t bother me in the least. Yet, because I have acquired disabilities, I have to admit that where I am is NOT where I thought I’d be. Don’t get wrong.

I feel good about me. I still have goals. I strive to make a difference. I love what I do. I have good days and bad days. There have been days I have really felt cut down.

AXED.

For many with acquired disability, chronic illness or invisible (or visible) conditions, much energy and focus is geared towards being independent. We don’t want to be a “bother” or put people out. I stopped trying to “fit in” a long time ago. I don’t hear normally. I don’t walk or stand normally. As I have become comfortable in my own skin, others have learned to accept me just the way I am as well.

But sometimes? Well, sometimes someone comes by with a wicked, sharp axe and hacks away at me, chipping away at who I am. Do you know what sucks? Sometimes the woodsman is someone I know well. Do you have people in your life who tell you “for your own good” to suck it up? “If you didn’t go around making a big deal about your disabilities, you would fit in better!” “Well aren’t you the DRAMA QUEEN?” “I’d never know something was wrong with you if you didn’t go around with a service dog!” (As if it never occurred to them I’m independent BECAUSE of the service dog).

There will be times we feel “cut down” because it is JUST ONE THING AFTER ANOTHER. I have some friends (those I call family, really) who have significant challenges. A few of them have really had a tough year. One took a significant fall in a store and is STILL recovering as the injury fall out was compounded by her MS. I have another friend with MS who is a stroke survivor. Her husband is now dealing with significant health issues. A young woman I got to know through Fidos For Freedom (who also writes) has a terminal illness and things seemed to go from bad to worse for her this year. These warriors have been chopped away.

Yet people with disabilities and chronic illness are stubborn. We persevere. If anyone “keeps on keeping’ on” it’s us! There is not any person with ANY challenge that cannot explode with new growth in the Spring. Winter is harsh. Axes are sharp. Bad stuff happens. But friends? Life isn’t over. Good can come from this.

Spring is here. Have you had a tough Winter? Did someone take an axe to you? You still matter. You can still make a difference. You are important. It’s Spring. Time to bust out in blooms or branch out in new growth. Don’t make me come fertilize you. 🙂

You meant evil against me, but God meant it for good in order to bring about this present result. Genesis 50:20 (NASB)

Denise Portis

©2015 Personal Hearing Loss Journal

Change and Control

change for the better

I’m not a big fan of change. So when faced with a year that is sure to be chock-full of change, I can feel a little overwhelmed. Ok. That’s actually not true.

I can feel freaking terrified, sick to my stomach, near panic attack, bite my nails to the quick, SOMEONE LET ME OFF THIS MERRY-GO-ROUND called life screaming, “abandon ship! abandon ship!”

I’m not even a spontaneous person. My family knows not to ever throw me a “surprise” party. To me ordinary is extraordinary. I just hate change. For me, it’s all about control. That’s right. I’m a bit of a control freak. There is an upside to being a control freak. I am very organized. I’m punctual and responsible. There are, however, all kinds of negative things that come from being a control freak and refusing to accept change too.

I had fairly significant OCD tendencies throughout my childhood and into my early 20’s. As a teen, I developed bulimia nervosa after facing my first big change moving away from home to go to college. Emotionally, I drove some people bananas with my need to control and drove some people AWAY as a young adult.

If you believe everything happens for a REASON and that there is a life lesson to be learned in everything that occurs, one could hypothesize that my developing acquired disabilities was the best (worst) thing to ever happen to me! My hearing loss began at the age of 25 and was a progressive loss. I wasn’t completely deaf until the age of 32 so I had a long time to adjust and cope. Meniere’s disease was diagnosed at the age of 35, though I suspect I had it from my early 20’s. It, too, became progressively worse over time; in part, because of multiple mild concussions. My health issues forced me to change. To remain independent (something I discovered was extremely important to me), I found that I had to work hard at adapting. I had to embrace change instead of shy away from it or pretend it wasn’t happening.

Living with acquired disabilities means something CHANGED. You have to adjust. You have to make choices about how you will cope and how you will treat the diagnosis or disorder. You have to determine how you enlist others to assist – if at all. What adaptive equipment or technologies are available to mitigate the disability? How are you going to mentally and emotionally adjust? (For acquired disability or illness never occurs without having an impact in other areas of WHO you are…)

At the age of 48, I have lived more of my life adjusting to my new limitations than I did to living in a relatively “worry free” life. Here are some things about change that I have learned.

1. Take notice of changes.

This means you have to really get to know yourself. Habitually take your own “pulse” and see how you are doing. Make note of the readings on your “tension thermometer”. How are you sleeping? How are your relationships?

You don’t want change to take you by surprise. One must deliberately brace and expect changes. Be on the look out. Identify health (or mental health) changes.

2. Accept change with a positive attitude.

You cannot stop change, nor control it, but you can change how you react to change. We’ve all see the serenity prayer before. For those of us with acquired disability or illness, however, following these words of wisdom can be very freeing.

God … grant me the serenity
to accept the things I cannot change,
courage to change the things I can,
and wisdom to know the difference.

3. Learn to relax. 

Even up-tight control freaks can learn to relax. One of the most important things I learned in vestibular rehab was how to relax when falling. We naturally stiffen up and become tense when we are “on our way down”. I learned to relax my leg muscles so that I immediately dropped to my caboose instead of falling like a tree cut off at the base.

I have also learned to take “me time” every single day and refuse to feel guilty for taking the time to do so. It may be something as simple as looking through a friend’s collection of photographs. It may mean some personal journal time. I might choose to read a good book – that has nothing to do with psychology or my dissertation. I may burn my favorite candle while cuddling with my assistance dog on the floor in the dark.

4. Ask for help.

It took me so long to learn that it didn’t make me weak to ask for help. I chose to be partnered with an assistance dog so that I didn’t have to ask for as MUCH help from other people. In spite of this life-changing decision, I still occasionally have to ask for help. When I do, I don’t apologize first.

“I’m sorry to have to ask you this, but could you help me? I’m so sorry. I hate asking for help, but do need your assistance. I’m sorry I’m bothering you!”

Please don’t ask for help like this. It’s rather pathetic, isn’t it? Yet, we tend to react to even THINKING about help as if asking is something to apologize for when doing the asking. Honestly, most people are glad to help.

If you really have problems asking for assistance, at least learn to ask others “how can I do this task independently?” Brain storm with OTHERS what you can do to remain independent. I have run completely out of ideas about how to do something safely, only to discover through someone ELSE a “brilliant” work-around.

5. You are changing, but you are still You.

Frankly, all of us change as we grow older. The changes may occur physically, emotionally, or mentally. Yes, change may seem more difficult when it occurs as the result of acquired disability or chronic illness, but ya know something? You are actually stronger for it. You had to adjust and perhaps been forced to make changes. The core of who you are does not change. We tend to fear that being “disabled” becomes our new identity. No one signs up for that, and it is never chosen. So when it happens… know that who you are hasn’t changed. If anything you become a better version of you.

One of my favorite quotes about change was written by John Eliot. “As soon as anyone starts telling you to be “realistic,” cross that person off your invitation list.” We can’t avoid negative people. They will cross our path. They will see our being differently-abled as license to give-up and quit. They’ll tell us to be realistic and stop aspiring for “more”. You may not be able to avoid these morons people, but you don’t have to hang out with them on purpose.

So I gear up for a big year of changes for me. I’ll be finishing up my coursework in school, retiring my assistance dog, and face some possible surgery. Those all seem so darn negative, but there’s always two sides to every “coin”. My dissertation awaits – and geesh, but do I love to write or don’t I? I’m retiring Chloe, but I have my close-knit Fidos For Freedom family and friends supporting me with a successor dog eventually entering my life. I hate surgery, but really look forward to getting to the bottom of some of the neurological issues I’ve been having. I can identify and sense these impending changes with a weird sort of relief. I have discovered that change can be good. Relinquishing control can be freeing.

Denise Portis

© 2015 Personal Hearing Loss Journal

Accepting Help ≠ Dependence

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

© 2015 Personal Hearing Loss Journal