Deaf Ears Hearing in the Middle of the Night

Deaf Ears Hearing in the Middle of the Night

I gasp and sit straight up in bed.

What is that noise? 

I grab both sides of my head and curl my fingers behind my ears.

……………………………..

No. My bionics are asleep in that little gray box.

What is that noise?

I clutch at my chest and listen closely, breathing in and breathing out.

…………………………….

My eyes leak; tears running down my face and soaking my nightshirt.

What is that noise?

A sob chokes at my throat and I gasp, fisting my hands under my chin.

…………………………….

I stretch, clutch and fumble for my phone, almost out of reach.

What is that noise?

No messages, no texts, I search in a panic, swiping through every screen.

…………………………….

I feel my faithful service dog flop his tail; fluffy, golden feather brushing my leg.

What is that noise?

I collapse back down on my waiting pillow, peering into the darkness.

…………………………….

My eyes adjust, I turn my head just so and find the florescent numbers on the clock.

What is that noise?

I cannot hear anything. I’m very deaf, truly, and completely in this moment.

…………………………….

What if… what if I woke to my mother’s goodbye?

Was THAT the noise?

My heart pounds, the tears leak, a tail flops against my side.

Careless Words

As a person with disABILITY, like any within a diversity group, I have experienced harm from words. Before you stop reading and think I’m going to blast the abled population, let me just say that people with disABILITY are often the worst offenders.

If I asked every person in the world to throw up their hand if they have experienced words that have…

hurt them

demoralized them

made them wince (inwardly and outwardly)

caused a “hitch” in your breath because of the unexpectedness

made you cry

made you SWEAR

caused you to “shut down”

forced you into isolation

triggered you to “fight back”

or scarred you for life…

… the sudden uplift of hands worldwide would cause a major shift in wind currents and likely tilt earth off its axis. Seriously. We’ve ALL experienced this.

I use the phrase “experienced words that have…” intentionally. Not all of us HEAR well and many who do hear well don’t listen well. The damage of careless and mean words is not something simply heard or speech read on the lips of fellow human beings. The words are EXPERIENCED. This experience is why damage is done. We take it in. We stew on it. We watch those words ping-pong back and forth in our brains and hearts like a pinball machine, drawing blood and causing wounds from every “hit”. We are scarred.

When my children were younger I would remind them that human beings can FORGIVE but we cannot FORGET. Our words have such power – it’s just freakin’ scary! I am an impulsive speaker. I say things without thinking through and that impulsivity causes regret more times than I can count.

People have told me things before that I needed.

Perhaps I was being a butt-head and careless with my own words. They put me in my place. Maybe it hurt but it was a disciplinary kind of hurt and I walked away wiser and un-scarred. (By the way, all of us have people in our lives whose very positional relationship with us allows them this power).

People have given me true (heartfelt) constructive criticism. This means the intent was clear, precise, and helpful. I am sensitive enough that even this at times can be hurtful, but it doesn’t WOUND.

Those types of experiences can hurt… but they aren’t spirit-murdering (a new word I learned at an Anne Arundel Community College workshop this week). I would like to argue that CARELESS words are never EVER helpful.

The word itself means, “not giving sufficient attention or thought to avoiding harm or errors”. Careless words can be both intentional and direct. They can also be unintentional and “oopsie” moments. Either way they hurt. They wound. They leave scars.

At the end of the semester a handful of students were sticking around to chat after the final. They were lovin’ on Finn, my 3rd service dog in training (SDiT),

… and just “messing around”, hangin’ out, and talking. One of my students muttered something and *I* (emphasis on that I, for I am deaf – grin) heard the collective indrawn breaths. So…

I nosily asked, “what just happened”?

The student said, “Good God, did you hear what I said?“, acting both horrified and astonished.

“Well, no,” I replied, “but I heard y’all’s REACTION”.

Her eyes filled with tears and she admitted, “I said something contradictory and stupid and then said, ‘GAWD that was bipolar of me'” She then slapped her hand over her mouth and looked around at the group with big eyes. The group all immediately patted her back and assured her that “we ALL say stupid things”, and “we knew what you meant”. She vehemently waved all their support aside and said MUCH louder…

“No, NO. You don’t understand! I AM BIPOLAR. I just slammed myself!”

At this point, the floodgates opened and she was sobbing hysterically. It was contagious… of the 8 students standing there, five of them were in tears within minutes!

Do you know they stuck around for another 20 minutes and discussed the power of words and stereotypes? I just stood there in awe watching what I hoped was a little bit of my teaching rubbing off as they expertly dissected and dialogued about intent, carelessness, and harm.

OWN It

You are gonna spew careless words. Whether you speak with your voice or your hands, you are going to speak before thinking. Or… maybe you speak AFTER thinking but you simply don’t care about the damage you are unleashing.

Own it. If you care, if you want to minimize the damage, if you want to do better, if you are the kind of human being that understands the power of words, OWN IT.

Apologize if needed (and mean it)

Make amends

Strive to do better. Vow it!

Practice

Call it (when appropriate) when you see others do it

Follow up and use all five apology languages IN WRITING.

This last one I have learned the power of this conscious decision to OWN it by following up with a note. Whether it is a handwritten note, an email or text, etc., writing down a follow up with a person I threw careless words at is so important.

It becomes this tangible, concrete evidence of my regret and promise to do better. The injured party can re-visit it if they want. It may act as a future means of measurement to them about how far I’ve come in using words as weapons. For me, it acts as a literal pivot point from which I can measure my own growth, my own practice of intentional, encouraging communication.

Next week, I want to discuss how one goes about admitting and voicing that “ouch! that hurt”. If careless words can injure, we are all wounded warriors. What do you do or say if someone hurts you?

Have a great week y’all!

L. Denise Portis, Ph.D.

© 2019 Personal Hearing Loss Journal

 

 

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

But, Butt, Buttocks and Butte

Isn’t the English language crazy sometimes? Did you know that it is actually one of the hardest languages to learn? (Oxford Royal Academy, 2014). Since most who are reading this likely know and use English as their first language, that may come as a surprise to you. We bellyache about how difficult it is to learn Spanish, French, German, etc., because most of us were born into English speaking households. Yet, many scholars argue that English is quite difficult to learn.

Take homophones for example. “Butt” can mean to “be adjacent to” or it can be your hiney, your buttocks, your butt, your behind, your gluteus maximus, your CABOOSE. Talk about confusing! You have to look at words in context to figure out the meaning. Then… we have acceptable shortened versions of words. For example BUTT is an acceptable, widely used word in the place of BUTTOCKS. However, BUT is not short for BUTocks. As a matter of fact, that isn’t a word! Add an “e” to BUTT and it even changes the pronunciation of the word. Now it is BUTTE (pronounced \ˈbyüt\). However, you don’t ever add an “e” to BUT. The word BUTE is not a word (unless you mean the derivative of the medical word phenylbutazone). You just ran screaming from the room, didn’t you?

Get it Right

But ya know something? Sometimes we use words and think we know what they mean when we do not. It is my opinion, that those of us who live with disability, chronic illness, or invisible diagnosis, should know our own SELF very well. I have Meniere’s disease and am late-deafened. I sought to learn everything I could about both conditions. When I later developed extremity peripheral neuropathy, I learned all I could about this condition as well. However…

I cannot expect everyone I meet to be experts on what is wrong with ME.

Aren’t we guilty of that sometimes? Heck, even with our loved ones we really can expect too much from them. So we have to be careful about our expectations. If I tell a colleague that I’m late-deafened and they respond with, “Oh… OH! I know some sign language!” (and they start to slowly and painfully finger spell their name)… don’t have a COW. (Besides… that is just MESSY!) Not everyone knows that the vast majority of people with hearing loss are late-deafened and do not use ASL. Try gently educating instead.

I told a student who was walking down the hallway and then into an elevator with me, all the things Chloe does for me. She asked about my condition, so I tried to explain Meniere’s disease in layman’s terms. When we exited the elevator, she helpfully took my elbow, and said, “Here… let me help you“. I stopped (after making sure hound dog and my bags were on the right side of the closing elevator door) and dug in my heels. I looked at her in astonishment. I had just walked down a hallway with her, wheeling my bags behind me and juggling leash of faithful service dog not five minutes before! After helpfully disclosing and explaining Meniere’s disease now I’m incapable of walking on my own? Because I knew she meant well, I didn’t scream, spit, or throw a hissy fit (*pats self on back for rhyming so nicely right there*).

I said, “I can walk on my own. Chloe helps me“. She stared and then said, “But… But you are WOBBLING“.

I cheerfully retorted, “Yup. Welcome to my life!” and walked off.

Everyone’s an Expert!

Another problem you may encounter if you have a long-term or permanent diagnosis, is that helpful folks sometimes act “the expert”. I’ve tried to explain that I am late-deafened and hear again with a cochlear implant, only to be interrupted by the person exclaiming, “Oh yeah. I have to turn the volume up now that I’m in my 40’s!” (I’m like… whaaaaaa…?)

I told an employee of my favorite grocery store a little bit about Meniere’s disease. Chloe and I always meet him stocking bread in the same aisle almost every week. After hearing my brief explanation of Meniere’s, he said, “Oh yeah, I walk into things after I’ve been drinking even just one beer!” I stood there trying to determine if my brain heard what I thought it heard. Ever been taken by surprise before and your mouth just blurted out what you were thinking before you had a chance to filter it through your state-of-the-art “Maturity Meter”?

I said, “That’s the dumbest thing I have ever heard“. He stared and then stomped off. We only see the tail end of him leaving the bread aisle when we go to the store now.

All my buddies who are late-deafened joke about this response after telling someone that they are late-deafened: “Oh yeah, I have an aunt who is death“.

Rest in peace, auntie.

Cut ‘EM Some Slack

Just as our English language can be confusing, so can your explanations of who you are to others. Even invisible conditions such as mental illness are so misunderstood. Many folks who try to explain a mental illness diagnosis are then treated like:

1. Fragile porcelain that may break under pressure

2. They are suddenly contagious

3. They are more dangerous than Freddy Krueger

All we can do, is do our BEST. In the end, we need to work hard at trying to understand that others – even those who may care about us the most – may not completely understand your new normal. That’s OK. A healthy acceptance and ability to BE GOOD TO OURSELVES is not dependent on the understanding of others.

Denise Portis

©2014 Personal Hearing Loss Journal

Oxford Royale Academy (2014). Why is English so hard to learn? Retrieved on October 27, 2014, from http://www.oxford-royale.co.uk/articles/learning-english-hard.html

Watch Me

Chloe and Lewis

Want to get on my last nerve? Enjoy listening to me Sputter as I desperately try to spit out a response? Want to see this kitty’s claws?

this puppy’s teeth?

this chicky’s – erm – umm – BEAK?

Then tell me I can’t do something. Heck, I’m not even the “first born” in my family! The birth order norm fairy forgot to send the memo when I was born – “2 of 4”. I can be a stubborn behind. Sometimes this is very, very BAD. But sometimes? Sometimes this is very, very GOOD.

Do you know that I credit my “can do” attitude to my hound dog? The fact that I can say, “Watch me!” can be attributed to the fact that I am partnered with an assistance dog from Fidos For Freedom, Inc.

Yes. Perhaps I would have found my courage without her. I may have discovered I am resilient on my own. I may have responded to a “Hey! You can’t do that!” with the response of “Oh yeah? WATCH ME!” by simply growing and maturing. However, I can exactly pin point the moment in time when I grew self-esteem muscles.

Chloe jumped into my bubble bath with me when my phone rang. Her hearing alert was so ingrained, she was oblivious to the water and naked partner.
Chloe jumped into my bubble bath with me when my phone rang. Her hearing alert was so ingrained, she was oblivious to the water and naked partner.

I was matched with Chloe in May of 2007. Shortly after that, Chloe came home to live with me and to do what she’d been trained to do. Alert me to sounds I could not hear. (Eventually she received additional training and skills to help me with my balance). I use to really enjoy bubble baths. This was before numerous concussions and worsening Meniere’s disease made the risk of drowning to real. Chloe was parked on the bath mat while I enjoyed that lazy bubble bath. I can’t tell you how startled I was to suddenly find my dog IN the bathtub with me and licking my face. My husband popped his head in the door and said, “Your phone was ring… ing. Ummm. Why is Chloe in the bathtub with you?

From that moment on, I knew I’d never miss a phone call.

… or alarm clock, or not be able to pick up something I’d dropped, or climb stairs safely, or know if someone was behind me in a store, and friends? The list goes on…

Watch Me

One of the early commands I learned was “Chloe – WATCH me“. Because I talk to my dog and would often say, “Chloe – look-it that squirrel, – or – look-it that bunny”, I learned NOT to say, “Chloe LOOK”. It would make her eagerly look around at whatever CRITTER I had seen before her! However, if I say, “WATCH me“, she looks right at me. She may cock her head and obviously listen for a command; much more than just meeting my brown eyes. However, she knows that “WATCH me” means “make eye contact – pay attention”.

Chloe actually tells me “WATCH me” as well. Chloe does it with her ears and head. When her head swings in a specific direction and her ears go up, I :  1) look at her and pin point where she is looking/listening, 2) turn to look myself. It may mean I need to step out of the way of something or someone.

Not LITERALLY

“WATCH me” doesn’t always mean literally, however. I was so cracked up at a meeting I attended recently. I was seated next to a person with low vision. We were in between speakers and were visiting while we waited for the next session to start. About 10 yards away, I noticed this man and lady plug up a power strip and run an extension cord over to their row in the auditorium. I interrupted my friend and said, “Hang on – they can’t do that! I’ll be right back. Watch me!

I stood up and walked over to the couple now fussin’ with how the cord should lay across the aisle. I put Chloe in a sit/stay and said, “Oh I’m sorry. You can’t put that cord there as there are a bunch of us in this area who cannot navigate safely with it stretched across the aisle“. They looked at me with a startled eyes and then around me to the section I was sitting in. I could tell by the dawning comprehension on their faces, that they spotted the service dogs, walkers, scooters, and canes.

Ooops. Sorry about that!” and they worked together to pick it up and roll it back into a nice handful of cords and plugs.

I casually walked back to my group and my friend said, “I saw that! Fist bump!” and she held up her fist for a “you go girl” moment.

Then it hit me. When I walked away I had told my friend with low vision, “WATCH me“. When I returned she said, “I saw that!” I started laughing. Not the kind of southern girl lady-like giggle. Oh no. I was hee-hawing. I managed to snicker out loud in between SNORTS what I had said – and what she had said. I nearly laughed myself into the floor. Yup. The kind of laugh where I had tears of mirth running down my cheeks and very unladylike hiccoughs to boot. My friend was laughing just as hard. She said, “We’re a pair, aren’t we?

You “see”, my friend? You don’t have to have 20/20 vision to be able to WATCH ME. You can pay attention with your eyes, your ears, or your hands. You can pay attention with your heart. You can pay attention – by PAYING ATTENTION.

It’s a focus.

It’s an attitude.

One of my favorite quotes (in the opening picture above) is by C.S. Lewis: “Every disability conceals a vocation, if only we can find it, which will turn the necessity to glorious gain”.

I recently had someone take me to task for self-identifying as a person with disABILITY. She argued that I was basically admitting I was unable to do something. I thought, “Well how wrong is THAT?”

Every person I know who lives with disability is actually someone who has learned how to do something IN SPITE OF challenges. You find a new way to do something. You learn how to do things safely even though it may not be the way a task is done by most folks. Perhaps you have assistance because of a device, service dog, or have simply learned to ask for help.

Yesterday while on campus, I needed to drop something off at the Disability Support Services office. My balance was “good” yesterday, so I exited a door that actually opened into a courtyard that had stairs bordering the perimeter. I felt confident to go up the 20 some odd stairs with Chloe. When I reached the top, an employee was standing there with big eyes, having seen me take a slow but steady climb to the top.

Hey!” I said cheerfully, and stepped around her. I looked up and was startled by a mass of people coming out of the gymnasium towards me on a very narrow sidewalk. I looked for an alternative path and spotted a way around through the mulch and picnic area.

Sensing what I was about to do, the lady beside me said, “Maybe you should wait“. I know she meant well. I felt no criticism, nor did I feel she was talking down to me. But… I was in a hurry, and I was having a good balance day. I had my service dog right beside me.

So I responded, “Oh, I’m ‘good’, no worries…” and proceeded to carefully pick my way around tree roots, pine cones, mulch and twigs. I didn’t retort, “WATCH me“, but if one could interpret the courage and attitude from my squared shoulders and confident stride, you would have “read that” in my departure.

Chloe and Fidos For Freedom were the “shot in the arm” I needed to become confident and independent. You may have found your own way to adapt. Having a disability does NOT mean you cannot do something. As a matter of fact, chances are if you tell someone who is differently-abled they cannot do something, you may discover by the set of their jaw, the determined look, and confident square of their shoulders that they most certainly CAN. Their body language screams,

WATCH me“.

Denise Portis

© 2014 Personal Hearing Loss Journal

Make a Difference

make a difference

My paternal grandmother passed away unexpectedly on March 28th. She was instrumental in my becoming, well – ME. I told her the FIRST time how important she was to me at Silver State Youth Camp in the Rocky Mountains when I was 13-years-old. I made it a point to tell her at least once a year, and to my knowledge never missed a year of telling her how important she was to me.

We have people we care about, and then there are usually a smaller group of people who influenced who you are. I’m convinced we do not have a whole lot of opportunities in life to invest ourselves THAT WAY in the life of another.

Searching for Significance

One of my favorite books is by Robert McGee. Searching for Significance is something all of us long for I believe. Something it took me years to learn, however, is that “significant” is what you deem important. What I think is significant and life-changing, may not mean a hill of beans to you. And that’s OK. We can’t find significance by asking others how they measure that. Significant things are as unique as people are. This is why so many of us are invested in causes, hobbies, and community service. For US, these things add significance to our lives. We want to make a difference by being involved.

One of my favorite quotes is by Joseph Campbell. “Life has no meaning. Each of us has meaning and we bring it to life. It is a waste to be asking the question when you are the answer.”  I find this rather profound. WE bring meaning TO life.

Life is hard. Living with disabilities is hard. Living with adult children at home is hard (not really but I had to throw that in there). If I expect my life – with all it’s trials and successes, joys and sorrows, to provide meaning, I’ve missed the whole point of living.

Some folks think they are not in a position to make a difference. You don’t have to have money or advanced degrees to make a difference. Everyone has some kind of talent. I have friends whose disabilities are severe enough they are really home-bound. Yet they have made such a difference in my life through the short emails or messages they send me – right when I need encouragement the most. I have had people I don’t even know make a difference.

I will never forget the homeless man I met at the inner harbor in Baltimore. My “quick diagnosis” was schizophrenia. He was a beggar, entertainer, and to many a nuisance. He stopped me to ask about my service dog. He asked if he could have her and promised to take good care of her. When I explained what she does for me I actually got choked up. He listened attentively and then squatted down and held her head for a moment. He muttered something to her and I couldn’t make it out. (It hadn’t registered with him that I said I was late-deafened). He looked up and said a little louder, “I was jus’ tellin’ her to be the best dog for you she could be because life is short. She makes a difference so she has to count now, not tomorrow”. I was like, “Woah.” That has stuck to me like super glue for 6 years now. It has inspired me to make a difference TODAY. We aren’t promised tomorrow to make a difference. Count now.

Just Remember to TELL THEM

If someone else does something that makes a difference to you, won’t you tell them so? It doesn’t have to be a huge announcement. It doesn’t have to be a flamboyant gesture. No need for helium balloons and streamers. Just tell them, “You made a difference”.

My grandparents... together again.
My grandparents… together again.

We need to let others know when they influence us or inspire us. Who am I because of my grandmother? Those who knew us both tell me I get my stubbornness from her. They also tell me my love of dogs, singing voice, hair color, and ability to confront people with courage all come from her. The reality is that even when my life began to change as the result of Meniere’s disease and deafness, her letters made a difference. She is a writer, and encourager, a cheerleader, an advocate, a teacher, and a legacy-builder. When she wrote, a common theme included near constant reminders that *I* could still make a difference. She encouraged me to be an advocate.

I am.

She encouraged me to write.

I do.

She told me I should not be afraid to speak and present to others.

I’m not and I do.

Her legacy of “making a difference” spans generations.

Very likely I do not know you personally. However, I do know that you *POINTS THROUGH YOUR COMPUTER SCREEN* can make a difference. It doesn’t have to be big. Betcha it is big to someone else though! That is what making a difference is all about.

Denise Portis

© 2014 Personal Hearing Loss Journal

Your Thinker and the Trickle Down Effect

squirrel-pin-tree-winter-snow-nature-hd-wallpaper-desktop-free-animals-picture-squirrel-hd-wallpaper

Wednesday, March 19th

I had a “pep in my step”. I had a whistle on my lips. My heart was glad. I was walking my service dog and most of the snow was gone from the ground.

“What beautiful weather for a walk!” I thought to myself.

But then a squirrel scampered down off a tree trunk merely inches in front of my well-trained service dog’s nose. It all happened so fast.

The first jerk on the leash put my body in motion. You can’t fight the laws of science. I was going to be in motion until something stopped my motion since my brain went on instant vacay. Let me tell you I stuck the landing. Nearby Olympic judges all held up “10” placards. Cheers all around (or at least in my imagination).

I lay there on the pine-needle strewn ground for a minute trying to determine if anything was broken. The world was still spinning. I closed my eyes for a minute and choked back the nausea. Flipping to my back I felt a hound dog kiss on my face.

“Whew. Chloe is still here”, I thought.

I forced my brain to verify the leash was actually still in my hand. YUP! I opened my eyes and focused for a second. Chloe went into a down/stay on her own and rested her head on my shoulder. The weight of my ding-a-ling service dog’s head was a comfort.

I heard something! Another good sign. My cochlear implant was still attached to my head. I focused on the sound and looked up – Up – UP into the tree boughs above me and spotted that rascal squirrel.

Oh.

My.

Gosh.

He had the impudence to sit up there fussing – at US. I couldn’t help but laugh. He was ticked! I laughed all the way up until he skipped away… jerking the branch he was on and dumping snow on my face and chest from twenty feet up. My laughter stopped immediately. I was choking after all…

I sat up and brushed the snow off and started to giggle again. Chloe wagged her tail in delight. It seems she wasn’t going to get a “Denise sermon” after all. Within 10-15 seconds though I was overcome with a different emotion. I sat there crying. Not just silent tears – nooooooo. This was unladylike, deep sobs with intermittent hiccups!

I sat there bawling my eyes out for five or six minutes, comforted by a hound dog most certainly sorry her instincts caused another “Timber…” moment for me.

Yes. I could see the funny. But fast on the heels of the laughter and positive attitude came an emotion near the surface most days. Self-pity. Sorrow. I hate my life.

Is Happiness a Choice?

One of my favorite books is “Happiness is a Choice” by Minirth and Meier. The premise of the book is that especially for those of us living with depression, happiness is a choice. The book’s number one principle is: “Change the way you talk to yourself”.

I’m on board with that. Really!

I am!

You can change some of the negative aspects of your thinking by challenging the irrational parts and replacing them with more reasonable thoughts” (Martin, 2010, para. 4). Whitbourne (2013) explained these, “inner monologues as “self-talk,” in which you provide opinions and evaluations on what you’re doing as you’re doing it. You can think of self-talk as the inner voice equivalent of sports announcers commenting on a player’s successes or failures on the playing field” (para. 1). I believe in the power of self-talk. I believe our “thinker” really can influence our behavior. My husband is a cognitive psychologist. He and I have a lot of discussions as I work on my own Ph.D. about the best ways to change behavior. He – and other professionals like him – believe that if you can simply change what your thinker is thinking, there will be a trickle down effect. It will influence and possibly change behaviors you wish to change. There is a lot of scholarly research and science to support this.

I believe this! I do! But I will be honest for a moment. There are times I want to just say…

SCREW SCIENCE

That’s right. Just in case you even needed MY – or ANYONE’s permission…

It is OK to be upset about the reality of your life.

Living with acquired disability sucks. Hearing loss sucks. Meniere’s disease sucks. How about you? Fill in the blank:

_____________________ SUCKS.

*Deep Cleansing Breath*

I’ve tried to explain to folks who ask, that living with a chronic condition or acquired disability is – on the best of days – HARD.

I still get the flu.

I have still lost people I love and miss them.

I have lost beloved pets.

I get headaches, body aches, and am growing older.

I get mad at my family sometimes.

I experience car problems.

I hate traffic.

I have unexpected bills.

I still have a period (hey! Jus’ layin’ it all out there! <BIG GRIN>)

All of these things happen to me just like they happen to you. Only folks with chronic illness or acquired disability have those things happen on top of what – for them, is the norm… living with challenges daily.

Yeah, yeah. I know!

I still get the flu   I can be thankful I have medicine to help and a hound dog to cuddle with. See? I can see the positive!

I have still lost people I love and miss them  I can be thankful I will see them again someday based on my personal faith beliefs and worldview.

I have lost beloved pets  I have other furry family members and that makes me happy.

I get headaches, body aches, and am growing older  Beats the alternative. Right? 

I get mad at my family sometimes   But I have a family…

I experience car problems.  But I have a car and this time we could afford the “fix”.

I hate traffic.  I have a job to go to.

I have unexpected bills.  But I’m smart enough to figure out how to pay that bill or arrange payments.

I still have a period Yeah. I got nuthin… (LOL)

So can my forced “change thinking” have a trickle down effect and influence my behavior, feelings, and perceptions? Yes.

And no.

Confused? I don’t mean to be the cause of a “What the heck you talkin’ about, Denise?” thoughts.

However, it is important – at least I think it is – to allow yourself to have moments of self-pity. Feel the sorrow. Rail at God. Write “My Life Can Suck” really big and pin it to a wall and throw darts at it. If it makes you feel better, do it. I think it is healthy to “own your feelings” about the reality of your life. It’s hard. You may feel alone. You may want to give up. It’s OK to feel that way.

But then? (Brace yourself…)

Change your thinker. Allow it to do what studies have shown actually works. The “Trickle Down Effect”. I’m here to tell you though that it isn’t a long-term fix. You may have to “adjust the knobs on your thinker” daily. Maybe on REEEEEALLY bad days – hourly!

Do you know what thoughts help me the most?

Keep on keeping on.

I can make a difference in the life of another.

Tomorrow is a new day.

Mean People Suck. (Sorry. That’s my favorite bumper sticker and I *had* to throw it in there).

Yup. They are platitudes. “Feel good self-talk”. But ya know something? It works for me because I also allow myself the freedom to sit in the pine-needles with snow covering my shoulders and bawl my eyes out.

So strive to improve your self-talk. But feel free to wail.

{{{{{{{{{CYBER HUG}}}}}}}}}}}} from me to you!

Denise Portis

©2014 Personal Hearing Loss Journal

Martin, B. (2010). Challenging Negative Self-Talk. Psych Central. Retrieved on March 21, 2014, from http://psychcentral.com/lib/challenging-negative-self-talk/0003196

Whitbourne, S. K. (2013). Make Your Self-Talk Work for You. Psychology Today. Retrieved on March 21, 2014, from http://www.psychologytoday.com/blog/fulfillment-any-age/201309/make-your-self-talk-work-you

S.O.M.L. – “Snoring On My Light”

Snoring on my light? Say whaaaa... ?
Snoring on my light? Say whaaaa… ?

Living with hearing loss. My friends, I have to tell you that I have learned long ago that it is much better to laugh at yourself than to get upset when your ears fall short. Besides I’ve tried the depressed, isolated, and “I surrender” route. It isn’t fun and it is lonely. It serves no purpose, nor makes a difference. Continuing to reach out, work hard, and laugh at yourself when needed, is much more productive – and life changing!

Although my classes sometimes have students my age or older in them, the majority of the classes I teach are mid-day so my students are “regular”, college-aged, young adults. I have two young adults living at home while they complete their education. I knew BEFORE I began teaching at a local community college that I don’t know the “lingo”. I don’t think they even CALL it “lingo”. But I digress…

I’m constantly being made aware that I “don’t get it” when students (or my children) use current idioms, slang, or acronyms. I not only have to ask for clarification, but I often need these things EXPLAINED to me. “Gullible” and naive have been terms to describe me since I was knee high to a skeeter. (Yeah… something else I seem to be proficient at is mixing my colloquial expressions!)

So this past week when a student I was working with to assist in getting caught up after being out sick? Well the fact that I misheard them AND missed their acronym is not a big stretch – let me tell you!

“So I’ll work with you to get you caught up. This will be a hard week, but you can do it!” I said with my best cheerleader professor voice.

“A soy meal.” the overwhelmed student replied.

I looked at them quizzically for a moment and repeated, “A SOY MEAL?” (I learned long ago to just go ahead and repeat what I thought I heard to help the other person, 1) learn how things sound to ME, and 2) help them understand the part I need repeated – so as to not require a repeat of the whole story).

With deliberate pauses the student repeated, “S.    O.    M.    L. Snoring on my light”.

Stumped and exasperated, but determined to get it right I repeated, “S.O.M.L. — Snoring on my light? Like a “Clap On” gadget?”

The student’s eyes bugged out and there was a pause. Chloe, my service dog, looked from one petrified person to the other. She yawned and settled into a down-stay. “Girl friend” has been here before and knew it was gonna take awhile…

“Professor Portis! I have NO idea what you are talking about. I never said anything about a gadget! S.O.M.L.  It means “Story of My Life”. The student had that “deer in the headlight” look at this point. Who says young adults don’t have the guts to see a difficult conversation to the end? They continued, “You know… it means my life is always like this!”

It took me a moment or two. After all there is a teeny tiny delay in what I hear to what I process anyway! “Oh. STORY OF MY LIFE. Got it…”

With relief the student gathered their things and proceeded to attempt ESCAPE. A twinkle in their eye and a deliberate pause to get my attention, she looked at me in the face and clearly intoned, Snoring on my light. You are a hoot, Professor Portis!”

Without missing a beat I retorted, “S.O.M.L.!”

Denise Portis

© 2013 Personal Hearing Loss Journal

Life With Someone Else’s Service Dog

Dr. Terry Portis is director of the Center on Aging at Anne Arundel Community College (AACC) and teaches in the psychology department. He supervises 205 faculty and staff who serve 4,100 students each year. Dr. Portis  has presented dozens of workshops and written numerous articles on marketing, program design, psychology of disability and health, personal development and technology. Prior to coming to AACC, Dr. Portis was executive director of the Hearing Loss Association of America.

Terry’s wife Denise has been a client at Fidos for Freedom since 2006.  Terry has served on the Board of Directors at Fidos For Freedom since 2011.

When a person is matched with a service dog they have to make adjustments in their life, and so do the people who are around them. This is especially true for the spouse or significant other who spends a lot of time with the person matched with the dog. You may think the service dog will only change the life of the person you love. However, there are changes you should try to anticipate as well.

Be prepared

There are a few negative issues that one has to deal with when a service dog enters your life. First, service dogs are very noticeable wherever you go. Most places we go I find people to be open and accepting. However, there are small, bitter people in the world who enjoy confrontation and have a “know it all” attitude. They may think they know the law because their third cousin has taken some classes in college. Having to occasionally deal with these unpleasant people in public can be very frustrating. It may also be difficult for you to let the person you love deal with these issues by themselves. Denise spent a lot of time in training and I suspect because of decades of advocacy work, it does not bother her to have to carefully explain the law to someone trying to deny access. At Fidos For Freedom, they spend a lot of time making sure the clients are prepared for these scenarios. Even though service dogs are not as unusual as they use to be, Denise will still occasionally enter an establishment that has never seen a service dog for hearing alerts and balance assist. Because I’m her husband, sometimes it is hard to stand by and let her stand up for herself. It certainly doesn’t hurt to make sure that family members are aware of the ADA allowances for people who mitigate their disability with a service dog. There have been times that Denise has been oblivious to someone trying to get her attention to ask her to leave the store with the dog. If I’m in the vicinity, I have spoken up and explained that Chloe is a service dog and can accompany Denise.

Another thing to be prepared for is the planning needed to make even small local trips. In the summer avoiding hot asphalt is always a consideration. Looking for parking spaces near grass is a challenge. We also think about which restaurants have the best seating for us. All of these things become second nature, and I find myself thinking about these things even when I am by myself.

Enjoy the experience

These few inconveniences though, are worth it for the value that a service dog brings into a person’s life. It is reassuring to have another set of eyes and ears to help protect and alert the person you love. Service dogs build confidence and help reduce feelings of isolation that people with disabilities often experience. If I know Denise is away from home teaching or running errands, I know I can call her phone and Chloe will let her know the phone is ringing. I know if she falls or drops things, Chloe is there to assist. I actually worry about Denise far less now that Chloe is a part of her life. According to Rintala, Matamoros, and Seitz (2008), service and hearing dog recipients reduced their dependence on other persons. As Denise became more independent, I worried less and also knew she was less dependent on me. As I knew how much she valued her independence, I fully supported her training and match with Chloe.

A service dog can be a very positive experience for everyone. You also have the opportunity to be an advocate, to tell people firsthand what you have experienced and learned. Dogs that have the intelligence and temperament to be service dogs are special, and the kind of dog most of us have never seen before.

Finally, a service dog becomes a part of the family. Chloe is like an extension of Denise, so she is around all the time. As a result, I’ve become her buddy as well. She is pretty excited about my coming home from work each night. It reminds me of when my children were little and were excited that “Daddy is home!” Having Chloe in our lives has been an easy adjustment for me. Chloe has fit seamlessly into our schedule and the peace of mind I have knowing how much she watches out for Denise is really worth the wet doggie kisses she gives when our alarms go off in the morning.

Rintala, D. H., Matamoros, R., & Seitz, L. L. (2008). Effects of assistance dogs on persons with mobility or hearing impairments: A pilot study. Journal Of Rehabilitation Research & Development, 45(4), 489-503.

Denise Portis

© 2012 Personal Hearing Loss Journal

Walk a Mile in My Shoes

Gonna change directions here today as the death of Whitney Houston coincides with something I am seeing more and more in the disability community.

It doesn’t matter whether or not you like Whitney Houston. What I am disappointed to see is some of the comments and “hatin’ on” this artist since her death. I actually saw on one person’s Facebook that drug addicts and alcoholics get what they deserve. “Someone with so much talent shouldn’t have wasted it”

Wow. I mean REALLY?

Unless you were thrust into fame and fortune at a relatively young age…

Unless you had to deal with the media on a daily basis, giving up any hope of privacy…

Unless you married for love and were crushed by disappointment…

Unless you raised a child as best you could in the backdrop of an industry that can be unforgiving…

Unless you developed an addiction because of life’s crushing problems and entered rehab while the whole world knew it…

Unless you made mistakes and fell back into bad habits – all while the whole world watched…

… then keep your mouth shut about Whitney Houston.

Why Does This Upset Me? Why Should it Upset YOU?

Anytime people begin to criticize and judge someone else a change takes place. Amnesia.

I rarely hear someone criticize and judge someone who is just like THEM. It usually happens when someone is different than you are. Criticizing is easy when we don’t walk in that person’s shoes. Judging is a simple task when we cannot hope to understand what really caused someone to do something when they are different than we are. We forget all the times we have been hurt for being judged and criticized by people who do not understand our own choices in life.

Wanna get me ticked off? Criticize and judge someone who chose to mitigate their disability with a service dog when you don’t live with a disability. Sometimes even others within the disability community may scratch their head and wonder why a person would choose a service dog when “they have the same disability you do”. What they may not know is that there ARE various differences between your disabilities. Your lives may be different. They may have 24/7 help that you do not have access to in your own life. Why don’t we celebrate “whatever works”?

In the hearing loss community, I know people who criticize people who don’t allow “nature to take its course” and embrace their deafness. To some, if you do not learn ASL then you are shunning a community that could be your family. For others who have accepted technology and/or surgery to stay connected to the hearing world, they may criticize those who have learned ASL for various reasons – personal reasons! I know people who criticize other people’s choices about hearing aids or cochlear implants. Why are we prone to criticize anyone who makes a different choice than what we have made for ourselves?

I think perhaps it is a form of self-protection. We may somehow feel that if someone who is very similar to us chose another path, that their choice may mean that our own path was a wrong one. It may be a form of defensiveness. If we see someone successful at living life with a disability, we may feel the need to criticize because we still have some problems with our own disability. If we see someone floundering at living life with a disability – and they chose another path? Many point and say, “I told you so”.

We could all learn to be more compassionate. We could all learn to listen more and keep our mouths shut.

When you judge another, you do not define them, you define yourself.” –
Wayne Dyer

If you judge people, you have no time to love them.” –
Mother Teresa

What May Happen if You Reserve Judgment

If you can keep your opinions to yourself, you may just make some discoveries:

You didn’t understand why they did what they did until you got to know them better.

You misunderstood their choice

After learning more about the person, you actually agree with their choice.

After time you find that you still would have done it differently yourself, but it seems to work for them.

If you can keep your negative opinions to yourself and instead pray for and encourage that person, you may discover a…

FRIEND who has the same taste in shoes!

Denise Portis

© 2012 Personal Hearing Loss Journal