I Would Rather Walk with a Friend in the Dark, than Alone in the Light

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I would rather walk with a friend in the dark, than alone in the light — Helen Keller

I graduated from Walsh High School in a rural area of Colorado in 1984. Fast forward 34 years <wince> and I am graduating again with now my final degree. In 1984 I was a healthy young woman with a moderate hearing loss in one ear. In 2018 I am a middle-aged woman in a perpetual state of getting healthy <wince>, profoundly deaf (and “hearing again” as long as I am wearing my bionics) and an adult with disability from Meniere’s disease and Post Concussive Syndrome.

It may surprise you to learn that I am happier and healthier (emotionally and psychologically) than I was at the age of 18. Life has been hard – and continues to be, but doesn’t everyone experience that in some form or fashion? My challenges have made me who I am today.

The 2018 Denise, has found a life worth living by embracing my unique challenges and focusing my life and energy in the disability community. Oh yes! It’s hard sometimes… dark even; however, I am amongst friends, fellow warriors, super heroes, and advocates.

May I just say, “THANK GOD FOR THE INTERNET”? There are numerous research studies that support that the Internet has connected, educated, and created a platform for advocacy for those with disability. The community, the friends I have found over the last 34 years has made every challenge I’ve shouldered worth it. Most of the people with disabilities I have come to know have different challenges and diagnoses. Yet all work hard to experience the best quality of life they can. We use a variety of accessibility tools, medications, assistive devices, and medical procedures to maximize every opportunity while insisting on a productive and meaningful life. We are stubborn. We believe in self-care. Our priorities tend to be the things that really matter. Some of us are Spoonies.

My dissertation, something I have become quite passionate about, revolves around the theory that traumatic events and diagnoses do not have to destroy a person. As a matter of fact, a wealth of research (my own included) supports that these events can stimulate growth – the foundation of Posttraumatic Growth studies.

This doesn’t mean that I do not have bad days. They happen. Those bad days are something you recognize and experience as well. Yet I have learned that walking in the dark and challenging path of life with disability with all OF YOU, is far better than any walk I took on the lighted, well-tended path alone.

My challenges are progressive. Do you know that doesn’t even bother me? I’ve learned how resilient I am and I have learned to:

  1. Reach out to my community when needed for support
  2. Ask for advice and work-arounds
  3. Find new ways of doing things
  4. Rely on a loyal service dog for minuscule but necessary tasks I was too afraid to bother others with
  5. Believe in myself
  6. Pray hard – but work harder
  7.  Never stop learning
  8. Believe the future is accessible
  9. Stand with others
  10. Be vulnerable and open about the good and the bad

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I’ve also learned to CHOOSE HAPPINESS and to do my best to spread that message. It may seem like a difficult choice some days, but cognitive psychologists agree that if you deliberately change your thinker (your chooser), it will change your feeler, and show in a change in your behavior. It is amazing what “choosing happiness” can do to your personal outlook. Don’t be afraid to embrace the days you scream and cry and cuss up a storm (sorry mom). Those days will happen as well. I have learned though that if my focus is positive advocacy and choosing happiness, those screaming days are few and far between.

I’ve always admired Helen Keller. This intelligent and gifted woman had neither sight nor hearing. Yet Helen learned that her life “in the dark” was pleasantly full of like-minded friends and associates. She knew the value of walking in the dark with a friend. I hope you can learn to embrace that mindset as well.

L. Denise Portis, Ph.D.

©2018 Personal Hearing Loss Journal

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Chronic Pain – Part ONE

Welcome to guest blogger, Deborah Marcus, long-time friend (sister), fellow advocate and writer, and professional photographer. It is always great to have guest bloggers on Hearing Elmo because although I have lived with disability for 27+ years, I do not and cannot understand chronic pain conditions as it is not something symptomatic of my own challenges. I have always been thankful for that — for one thing I am a wuss. I have loved and admired Deb for a long time, in part because I consider her a warrior woman who DOES live with chronic pain. This is part ONE of a multi-part posting. Follow up posts in the future will link to this one so that her story chapters will remain connected.

What persuades me to step back from the ledge? What worked yesterday, today, what will work tomorrow? Those who live with chronic, severe pain or illness are familiar with these questions.

I have lived with disability for much of my life. Hard of hearing from a relatively young age, severely so through my 20s and 30s until I began to hear again at age 42 with cochlear implants, I am no stranger to the need to make adjustments. I have lived with other disabling conditions, too, which unlike hearing loss and deafness are largely a product of the external forces of trauma and abuse. At 54, I have lost count of the moments when I’ve told myself “keep on, keep on”. As a result of physical abuse which once took the form of being sent down a long flight of stairs, backwards and head first, I have experienced increasing challenges with my vestibular (balance) system. Once a series of intermittent episodes of vertigo, my imbalance is now chronic. For over two years now, I have not had a minute where my equilibrium is not in a struggle with the space around me. Along with this is a condition that I have managed to cope with for 38 years, for which I had no name until recently. Three years ago I wrote a short piece describing life with trigeminal neuralgia. Things have changed regarding my TN status since then, but it’s instructive to see where I was at that time: https://visionsofsong.com/2015/07/10/into-the-sunshine-living-with-trigeminal-neuralgia/

It is not the only pain condition I live with, but it is the most distinctly life-altering. About six months ago, I realized that the medication treatment that was giving some relief wasn’t doing much anymore. Trying different medications and doses brought no help. I spoke with my doctor, who referred me to a hospital that does high volume work in the areas of gamma knife radiosurgery and microvascular decompression, the only two procedures currently advised for my condition.Both procedures have a relatively high success rate for trigeminal neuralgia, 70 to 80 percent depending on various factors. After consultation, in early March of this year I underwent the gamma knife procedure. After a week’s time, I felt some improvement, which was incredibly uplifting for my mood, which had reached new lows. Knowing that it can take a couple of months to see the full effect, I hung in on the bad days, rejoicing in the better days in between, and anticipating further improvements. In the past couple of weeks, I have not been doing well. This past week has been terrible, and I have found myself bursting into tears as much due to despair as to the pain levels. My world, which was shrinking due to severe, chronic facial pain, was beginning to open up a bit, only to feel shrunken once again. I can’t decide which is worse, not thinking there would be anything that could really help bring my pain levels to manageable levels, or trying something that may in the end prove to be a failure for me.

The depression I have been managing somewhat successfully stepped to the front of the line. I became obsessed with the idea of planning my death. Not yet planning my death, but finding the idea of planning it out, by suicide, an intriguing possibility. Why? Why now, when I’ve lived with physical and psychic pain for so long, does it seem like now might be a good time to end my life? What makes one moment better than another, or none of them the right time? As much as I have dealt with depression to varying degrees throughout the years, I don’t recall a moment exactly like the one I had this week, thinking that maybe I’m done, really and truly. I felt that if I expressly stated that to anyone close to me, they would call in the big guys on me, which I do not want. Besides, I’ve been feeling like I’m wearing out the handful of good, caring people in my life with my challenges. I did not want to burden them with such thoughts. I knew that I could call the National Suicide Prevention Hotline (found here https://suicidepreventionlifeline.org/) and opted to use the chat box to communicate rather than the phone. It took a little while to get to the front of the line, but I wanted to see what would happen. As a Mental Health First Aid instructor, I know what it’s for and recommend it often. I wasn’t sure if it made sense to call since I wasn’t sitting by the computer with a gun or a bottle of pills in my hand. I recognized my need to reach out, and am glad that I called. The person on the line didn’t tell me much I didn’t know, but I could tell they cared that I was struggling, and that meant a lot. At the end of the call, they ask for some feedback. One of the questions has to do with feeling hopeful/hopeless. I was able to say that I felt a little less alone after this brief conversation. It got me thinking about how much, and yet how little I need. I suspect this dichotomy is true for many of us. I can only share from my perspective, and from what I’ve teased from things shared by others over the years.

There has been a fair amount of discussion lately regarding the intersection of childhood trauma and health outcomes. If you would like to look at this in some depth, you may consider starting here, though there are many other resources: https://www.ucsf.edu/news/2016/10/404446/undoing-harm-childhood-trauma-and-adversity

As a survivor of (and sometimes thrive-r in spite of) sexual and physical abuse, having undergone several rounds of therapy to figure out how to cope, I did not immediately make the connection between my physical challenges and what I had experienced while growing up. The mind-body connection was happening in spite of my limited insight. Oh, I understood that my mood could be connected to my experiences, but pain? Not only acute pain, or pain that is persistent due to an event, but pain in parts of the body that were not injured, or if they had been, were still in pain long past when the bodily injury had healed. I have been handed and thrown off a diagnosis of fibromyalgia twice in 12 years. No fibro for me, thank you! It’s that diagnosis they give you when they don’t know what’s wrong, is what I would tell folks. If sounds so…hopeless. I know some who live with this diagnosis, and they find ways to make a good life for themselves. It felt like being saddled with one more thing that I didn’t want to carry.

But trigeminal neuralgia, that’s something they can tie to an event. In some cases it develops post-shingles. In others, trauma can be the culprit, and again, we suspect that is the case for me. I have been more comfortable talking about this severe and persistent pain condition than any of the others, yet there is no denying that all of what I experience is intertwined within me, and so perhaps the only way through all of this is through all of it. Still, I haven’t figured out what to say to myself to want to keep on during the worst moments. I think I put every penny I had on this horse winning the race, with the radiosurgery giving me significant relief for a while. If it doesn’t, I’ll need to see if I can find another message that is meaningful, to keep on, keep on.

I welcome feedback, and aim to follow up with another piece on the topic of chronic pain, disability, and the reconstructing of a meaningful life.

Deborah Marcus

https://visionsofsong.com

 

New Twist on an Old Fable

Townsend version of Aesop’s Fable: The Crow and the Pitcher

A crow perishing with thirst saw a pitcher, and hoping to find water, flew to it with delight. When he reached it, he discovered to his grief that it contained so little water that he could not possibly get at it. He tried everything he could think of to reach the water, but all his efforts were in vain. At last he collected as many stones as he could carry and dropped them one by one with his beak into the pitcher, until he brought the water within his reach and thus saved his life.

Moral: Necessity is the mother of invention.


I have the privilege of hanging out with numerous people with disability. Some are students, some are colleagues I work with at Anne Arundel Community College, and some are individuals I know from various community advocacy groups. One thing I have learned about people with disabilities,

“Where there’s a will… there’s a way”

This “will” is what this Aesop’s fable of the Crow and the Pitcher reminds me of as I have seen time and time again, people with disabilities finding a way to accomplish what they need to do with whatever means available to them and within their own power.

I was walking towards an “accessible” bathroom with a young woman who self-identified as a “little person”. I normally have a rolling briefcase trailing from my right hand and a service dog in heel with the leash in my left-hand. As we approached the bathroom, I readied myself to  disengage myself from my rolling briefcase and pull the bathroom door open. Before I could do so, the student yanked one of her textbooks out of her book bag, stepped up on it, and pulled the door open. She held it open for me and never missed a beat… continuing to talk about what we were discussing on the way to the women’s bathroom.

I, myself, do things that I have simply learned which allow me to be independent. However, this example stuck with me a long time. The young woman was accustomed to doing this and obviously had practice. The young woman’s “normal” reaction was an expectation to do something NEW and NECESSARY to accommodate her need.

Another example: One day on campus as I was preparing for class, a student whom I have met only in the hallway a few times after exchanging a cheerful greeting, poked her head in the door and waved at me. This student uses a wheelchair. I walked over and realized the issue before she even opened her mouth. Right outside this classroom is a CRAZY women’s bathroom that has an entrance that is impossible for any person with mobility issues to get in and out of without assistance.

Need me to get the door?” I asked.

Yup!” – “Thanks!” she whispered with a knowing grin.

Later that week I saw her in the hallway again. This time instead of only a cheerful greeting in passing, she stopped me and told me thank you again. Even though the other bathroom on the third floor where we were was more accessible, it was much further from her class and she lacked the time necessary to go down that far to avoid being late for class. I explained to her that I had to have help with this particular door too if I had my service dog with me. We both giggled at how ridiculous it was that we required assistance for that bathroom. (Do you know I still don’t know her name? Comrade in arms, but clueless as to who she is – smile). The day I got the door for HER, my service dog was waiting patiently behind me in the classroom so I was able to assist without any hoopla or drama.

Just in case you are not a long-time reader of Hearing Elmo, I have Meniere’s disease (a vestibular disorder) and “hear again” with a cochlear implant. I also have post-concussive syndrome. I have made numerous adjustments and changes within my home, car, and office to eliminate my need for assistance. Since I can’t raise my hands over my head without swooning, everything I need in the kitchen is on a shelf I can reach safely. My shower has everything I need eye level instead of up higher on the rock-faced shower wall. I have chair-rail molding all over the house so that I can grab it with my fingers if I am walking and get wobbly. All my appliances and drawers that “stick” have a tug on them so that Milo (my service dog) can open them for me. I could go on and on, but I don’t want you to miss that the reality of ANYONE with disability or chronic illnesses, is that they are accustomed to doing whatever it takes to be as independent as possible.

Please Keep in Mind

Will you do your best to remember one thing? If a person with disability, chronic illness, or invisible condition asks you for assistance, you are their LAST resort. They have thought of and planned for everything that they can to be as independent as possible. However, there are times that we just need help.

Don’t make a big deal about helping, just do it calmly and with grace.

Don’t discuss the details or “unfairness” of the person needing your assistance unless THEY want to discuss it.

Don’t feel sorry for us.

Don’t be super dramatic and bring attention to the issue.

Where There’s a Will, There’s a Way

Earlier I stated, “where there’s a will, there’s a way”. If you live with disability, chronic illness, or visible/invisible conditions, I understand when WILL disintegrates. I work as hard as the next person with disability to be independent and strong. Yet… there are times I just throw up my hands and yell, “SCREW this! I give up!

I cannot speak for others because we are all SO different. Even people who share the same diagnosis may:

  1. Have different symptoms
  2. Take different medications
  3. Have different responses/side effects to those medications
  4. Have more support than you do
  5. Have less support than you do
  6. Have a different personality style and traits
  7. Have a different developmental history than you do
  8. Have different faith practices than you
  9. Have different co-morbid diagnoses (Other conditions in addition to their primary challenge)
  10. Have cognitive issues as well that impact problem-solving

I can say that for ME, the best thing I can do after having a “Screw this” kind of day, is to go to bed. And yup… I mean I do so even if it is only 5 PM! I always feel better, have a clearer head, and a renewed WILL after getting some rest.

I am really tired of being TIRED after having to find and produce my own accommodations for various activities. However, a fresh perspective (after a good night’s rest) nearly always renews my inner warrior and allows me to face a new day willing to do whatever I need to in order to be a thriving, surviving disability advocate.

In the comments, I welcome other examples of how you have learned to make things accessible for you.

Warm hugs and virtual “high 5’s” to my fellow differently-abled people!

© Personal Hearing Loss Journal

Denise Portis, Ph.D.

Let It Go – Or It’ll Kill You

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I am home today grading papers, writing my dissertation, and doing laundry. I love laundry.

No. Really! I love laundry!

So needless to say, I’m in my “happy place” today in spite of some sprinkles, high humidity, and lots of wobbles. Heck. I didn’t even put on make-up.

This morning around 7:30, I noticed this cluster of acorns by the pond. They were still on the branch (and at the time, INTACT), surrounded by some pretty Autumn leaves. I thought, “Wow. That’s kinda purty. I’ll bring my camera out later and take a picture“.

Fast FOR..W….w……w…ard……….  2 hours:

The next time I took the dogs out I grabbed my iPhone and thought to myself while springing the screen door open with a flourish,

  1. Deb will be so proud.
  2. I, too, can spot beauty.
  3. Hope the showers hold off.
  4. Did I skip breakfast? (Just keeping it real…)

I got out to the pond and searched first for the ROCK, then for the little oak tree branch with acorns. The picture above is what I found. Every single acorn gone, y’all.

I looked around a bit thinkin’… I must be in the wrong spot. The thing is? There are only so many rocks around the pond! Besides! Right there was the wee little branch, surrounded by perhaps a few more leaves, with ZERO acorns on it!

Do you know I had to sit down a second and ponder on it? I mean… what in the world happened in two hours?

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Well a clue, was that this guy <points up> was very, VERY interested in the wee little branch. He sniffed and snuffed. He circled around the spot. He sniffed some more. Then he lay down next to me and continued to sniff while I slowly but surely turned my investigator meter off.

A critter! It had to be. Something sly and sneaky… something small and (evidently) smelly… something HUNGRY was here.

Sigh. I stood up and brushed myself off thinking, “Let it go, Denise. Let it go!” It’s not like I could glue some acorns back on the twig and make it work (though I DID think about it long and hard). “You missed this photo opportunity. Let it go, Denise. Let it go.”

Now, I’m fully aware that most of you have launched into song. Your arms are flung wide, you twirled at least ONCE, and you are belting out, “Let It Go” for all you’re worth. Raise your hand if you’re guilty…

Do you know I have not seen “Frozen“? Oh, I have seen the video of the song, and numerous other parodies. I’ve seen adorable videos on FaceBook of folk’s kiddos singing the song as if it were their own. Needless to say, after I looked up the lyrics for the first time (necessary when you hear a song and are trying to make out the words with a hearing loss), I wasn’t that impressed. I mean, “The cold never bothered me anyway” was SPOT ON for this cold-weathered girl. The rest of the lyrics are kinda harsh, IMO. No worries. I’m not getting ready to dissect and demonize the lyrics to a favored song.

Why Letting It Go – is GOOD

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I hold my breath. I do so,

… when I’m concentrating

… when I’m nervous

… when I’ve just fallen

… when I’m about to fall

… when I have panic attacks

… when I’m afraid.

That’s right. I have excellent diaphragm control and lung capacity. (Not really… I just pass out a lot). Any-WHO, I learned to “let it go”; my breath, I mean. I was chanting “let it go” before Disney made the phrase famous. (Sorry, Disney… I checked the published date for the song).

Don’t you wish we could “let it go” as easily as a breath being held? I get a little disgusted when people tell someone to “let it go” when they are hanging on to something they need to let go of to be free.

Perhaps you are waiting for an apology that will never happen. 

Someone hurt you and you are still waiting for them to make it right.

A complete loser made your life miserable for years, and you still hear their voice in your head.

You are so accustomed to things going badly, you are in a perpetual state of waiting for the other shoe to drop. 

You cross your fingers and wait for God to finally punish someone who really needs punishing.

You wait around for the Cubs to win the World Series.

Let it go. The problem with holding your breath – AND – holding on to things like this, is that a state of increased tension and anxiety only harms YOU. It’s like a burning feeling in your lungs. Holding on to things like this can harm your health. Blood pressure, mental health, heart disease, and many other conditions are affected by “holding on”.

Forgiveness is one of the hardest things in the world for me. Yet, I have been forgiven for so much. Pretty arrogant, aren’t I? Forgiveness became easier when I realized it didn’t mean I had to pretend something didn’t happen. It did and it hurt. However, holding on to grudges, bitterness, and anger was only hurting ME (not them). “Forgiveness doesn’t mean that you deny the other person’s responsibility for hurting you, and it doesn’t minimize or justify the wrong. You can forgive the person without excusing the act. Forgiveness brings a kind of peace that helps you go on with life” (Mayo Clinic, 2014, para. 4).

I recognize that part of the human existence is missing opportunities, forgiving others, and learning to “let it go”. One of my favorite songs (To Forgive by Al Denson) can be found HERE. I’m not saying it is easy.

You know what, though? As a differently-abled person who also struggles with depression and anxiety, I have learned that holding on to stuff only makes my life more difficult.

And I can do without more “difficult”.

So if I can be proactive about my own health and lay the groundwork for having more good days than bad… simply by “letting go”.

Whoosh….

That’s what an exhale sounds like.

Mayo Clinic (2014). Forgiveness: Letting go of grudges and bitterness. Retrieved October 30, 2016, from http://www.mayoclinic.org/healthy-lifestyle/adult-health/in-depth/forgiveness/art-20047692

Denise Portis

© 2016 Personal Hearing Loss Journal

 

Crappy Life Lessons

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

Anything!

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

Misinterpreting

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

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

Shame and Blame

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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.

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I’m not perfect. But…

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

Crappy Life Lessons

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

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

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

Hold me accountable.

Denise Portis

© 2016 Personal Hearing Loss Journal

Can You Be Arrested for That?

My favorite cane...
My favorite cane…

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

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

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

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

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

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

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

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

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

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

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

Maybe he said “poetic”. I could dream.

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

To clarify, I said, “Ummm, pathetic?”

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

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

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

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

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

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

And I do mean ALL the time.

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

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Denise Portis

© 2016 Personal Hearing Loss Journal

 

Let Sleeping Dogs Lie

My sweet Sheprador
My sweet Sheprador

In my opinion, one of the more frustrating truths about positive advocacy is the need for repetition. I understand that because my challenges and disabilities are a part of my life, adapting, coping, and sometimes “making do” are a natural part of each and every day. I also understand that because many people with whom I interact do NOT live with hearing loss and balance issues, what is second nature for ME never crosses their minds. The trick… and something I have been struggling with, is how often do I have to ask for accommodations? How often do I repeat the same ol’ request so that I can simply interact with others equally?

The above photo is of my current service dog, Milo, from Fidos For Freedom, Inc. Milo is a young Sheprador (German Shepherd/Laborador Retriever mix) who rarely sleeps. When he does, he sure is cute. ‘Course I’m a tad bit prejudiced being Milo’s partner. The phrase, however, “Let Sleeping Dogs Lie” originates from a proverb that means to leave something alone if it is going to cause trouble, or dredge up old arguments.

However, when we strive to promote positive advocacy and request accommodations (that were asked for before and are still not a habit for those providing the service, workshop, or seminar), when do we just “leave it alone”? One of my longtime requests is that speakers use the microphone, and repeat questions asked from the audience INTO THE MICROPHONE. Yet, time after time speakers say, “Oh I don’t think I am going to use the mic. My voice carries…” or, “I’m just going to put the microphone over here… you can all hear me, correct?” I’ve even had speakers have everyone in the audience introduce themselves and give some information about their background WITHOUT A MICROPHONE in sight!

I wave like a crazy person and “shake my head no” when speakers say this, and yet time after time I sit in meetings like this with no one using the microphone. At the end of conferences I fill out surveys about my conference experience and have tried to relay how important the microphone is to me. I’m to the point that I may stand up and create a mini-scene, asking them to use the microphone. As a person with hearing loss, in a large, cavernous room, I go from hearing 95% with microphone in use, to about 20% when it is not. Any idea how hard it is to get anything out of a meeting if you are only getting 20%?

I don’t even go the extra mile and request CART. It’s expensive. In spite of people with normal hearing asking for a copy of the transcript as well and my knowing it helps more than just ME, I don’t make formal requests for CART as a simpler solution WILL actually meet my needs. Entering a new school year with loads of meetings on my calendar already, I am to the point of “letting sleeping dogs lie”.

The only problem is, it isn’t in my nature to roll over and give up. So wake up, DOG.

Denise Portis

© 2016 Personal Hearing Loss Journal