Meniere’s disease – Hearing Elmo

“What About Me? Effect”

Published on October 16, 2023 by hearingelmoLeave a comment

Social media and access to information at large is a “game changer” for people with disabilities and/or chronic illness. Here are just a few reasons why I believe this is true:

Connects you to information and resources about “what ails ya”. This yields truth to the “knowledge is power” phrase.
Provides the means to share and connect with others struggling with similar issues.
Provides a platform for advocacy and change.
Alleviates feelings of isolation and loneliness.
Enables individuals to stay connected to local, national, and world news, often with unmatched accessibility to this information.
Allows differently-abled people to shop, pay bills, etc., in an accessible, safe space (home).
Allows everyone access to education and learning knew skills – some of it free!

I also know that social media provides an outlet for connection, fun and entertainment, and can fill some hours when sleep seems unavailable to me. Like anything, however, social media platforms can be negative and challenging as well. “TikTok creator Sarah Lockwood (@sarahthebookfiary) refers to the tendency to make everything we see online about ourselves as the “What About Me Effect” (Borresen, 2023). Sarah posted a video about this “effect” in September and it really struck a cord in me. She states, “when someone sees something that doesn’t really pertain to them, or they can’t fully relate to, and they find a way to make it about them — or try to seek out certain accommodations for their very nuanced, personalized situation, instead of recognizing that maybe they’re just not the target audience for that thing” (Lockwood, 2023).

Like any population, even individuals living with disability or chronic conditions can get caught in a self-centered web of “what about me?” I’ve seen it happen in forums where someone posted information about a means to make a certain household chore or errand more accessible when living with a disability like their own. Instead of celebrating the ingenuity, a person with similar disability might not be able to accomplish the same because of demographics, or other subtle difference in diagnosis or condition.

Please do not misunderstand my point here. Equity and inclusion are important, however “what about me?” comments interferes with free speech; for a person in a marginalized population from freely voicing their truth. It is a very simple thing to chime in with perhaps another idea that would bring valuable discussion for accessibility options for someone with a slightly different disability. As a disability blogger and advocate, I recognize that I am an individual first. My experiences are just that–MY experiences. My experience as a balance-challenged woman may mean that I have some things in common with some, but am likely more different than similar to others with balance disorders.

Let’s be supportive of each other’s stories and life truths. We can learn something even if someone’s experience is different than our own. Even within disability related platforms, not every piece of content is geared towards every single person. We are unique and our challenges and gifts often are as well.

L. Denise Portis, Ph.D.

Borresen, K. (Oct. 12, 2023). The What About Me Effect is rampant on social media. Are you Guilty of it?. HuffPost Life section. Retrieved October 16, 2023 from https://www.huffpost.com/entry/what-about-me-effect-tik-tok-bean-soup_l_6525a8d9e4b0102e6963c51

Lockwood, S. (Sept. 14, 2023). Sarahthebookfiary [Video]. https://www.tiktok.com/@sarahthebookfairy/video/7278702404315680046

What if… ?

Published on August 7, 2023August 7, 2023 by hearingelmo2 Comments

My husband teases me because my favorite movie genre is apocalyptic themes. My favorite book as a kid was “The Long Winter” in the Little House series because the circumstance and outlook was so dire! I’m a pessimist and very, VERY hard on myself. Even though I’m 57 and had decades of practice of “doom, despair, and agony on me” (let’s see if any of you catch that reference jingle), I have learned to change my “what if…” inner dialogue to promote happiness and health.

Persons with disability often worry, fret and are anxious about many “what if” scenarios. Things like:

What if I suffer another concussion? (I was so aggravated at myself to have to update my sign a week ago):

What if I become legally blind?

What if I have to have my cochlear implant removed to get an MRI and accurate MS diagnosis?

What if I get ALS like my Mother?

What if… ?

I mean seriously it could go on and on! I’m grateful my interests and subsequent training and education meant I pursued psychology. Yes, yes, occasionally I grieve being rejected by Hogwarts, but psychology likely saved me! Seriously! I use snippets of cognitive behavioral therapy (CBT) every SINGLE DAY! I know that I’m prone to cathastrophizing my life. I know this bad habit is detrimental to my emotion self and mental health. It also takes a toll on my physical health.

When I find myself perseverating on negative “what if’s…?” I have to deliberately pause and choose to say the opposite.

What if I go another year without any new concussions? I’m taking great pains to walk safely, work around the house safely, etc. That last concussion may have been my last!

What if the meds I am taking save my eyesight?

What if the MRI (after surgical removal of my CI magnet) shows a definitive MS diagnosis? Then I can find proper treatment!

What if I live as long as my Mom did (78) and die from “old age” and not ALS?

In CBT, you have to start with your thinker. If you can change your thinker, it will aid in changing your feeler (heart) and in turn change your behavior (anxious thoughts, depression, self-harm, etc.) Change your THINKER to change your FEELER to change your BEHAVIOR.

So there isn’t anything wrong with “what if…?” thinking. Just make sure most of your “what if’s…?” are positive thoughts and affirmations. It’s hard enough being a person with disabilities and invisible or chronic illness. Don’t become your own worse enemy. Cue the music and summon your Mission: Impossible chi and see if this CBT tool can at the very least improve your mental health and personal regard.

L. Denise Portis, Ph.D.

You can do ANYTHING! Well… MOST THINGS!

Published on February 5, 2023 by hearingelmo7 Comments

I anticipate that what I write this week will upset some folks who live with disABILITY or chronic conditions. If you would, “hear me out” until the end of the post. If you still disagree, I can easily “agree to disagree” and even concede that the power of optimism is often the key to overcoming real obstacles.

My main point? Do not tell a person with disABILITY that: YOU CAN DO ANYTHING!

This standard platform statement is normally accompanied by volume and higher pitch, with a pom-pom smacked to the face of anyone not paying attention. Educators like myself sometimes misuse this encouraging statement. Administrators may assume the statement is standard for any mandatory attendance meeting, certain to help liberate the doubtful and unify the group, lighting them on fire with enthusiasm.

Last semester I sat and cried with a student having to drop my class. Like me, she is a TBI survivor. Her dream job was to work in a big hospital and oversee support groups for individuals and families who are experiencing life with traumatic brain injury. She wants the “shingle”, the Ph.D., the training to really make a difference. I believe she will reach her goal. She will reach her goal after a longer road than most. There will be setbacks. There will be obstacles. I shared with her that it took me 16 years and a lot of outright stubbornness to finish school. Accommodations made the attempt more equitable but honestly, I shared, “it took not giving up and recognizing my pathway to goal was a longer one”.

I have had short-term mentors tell me YOU CAN DO ANYTHING! (My long-term mentors had a more realistic approach). However, pom-poms, enthusiasm, and genuine hopefulness will never:

… allow me to hear normally.

… walk without a limp.

… have vertigo-free days.

… help me be as sharp at the end of the day as I am at the first.

… keep me from needing more sleep than others.

… prevent me from ever falling again.

… alleviate my communication challenges.

… prevent me from feeling isolated and left out occasionally.

… stop the loss of vision in my right eye brought about by 11 concussions.

… interrupt every single panic attack.

… defeat persistent depressive disorder.

… keep me from missing my Mom, the primary REALIST in my life.

Frankly, there are some things I CANNOT do. Any successes or “wins” are the result of stubborn persistence. Any recognitions or awards are from finding a different way to accomplish the same tasks. Many “end results” were not something originally targeted. There are things I CANNOT do and tasks I will NEVER be able to do. Instead, I have learned to set my sights on something obtainable. I have learned to align my goals with things that are possible. I have even learned to dream and “pin my hopes on” goals that are doable for even one such as I. In the end, most of us aspire to make a difference. If you find yourself looking around at the place your training, hard work, and experience have landed you thinking, “Well gee. This was a major detour but gosh darn it! I’m happy and I’m making a difference!”

Perhaps the big DIFFERENCE we make was something outside our imagination originally. Reality redirected our purpose with an unexpected detour. Yet here you are, thriving…influencing… and KILLIN’ IT! Having a sense of real purpose looks good on EVERYONE.

I have talked with students and colleagues hesitant to ask for some extra time or an equitable accommodation because they fear being judged that their performance is only possible through props others do not need. Y’all? There is a heck of a lot of difference between equitable accommodations and “hand holding”. This photo says it all:

I received an email from a follower of Hearing Elmo around Christmas. They are on disability, with limited transportation and even more limited opportunities. They shared that at times they are discouraged because they feel limited in what they can do. But folks? The opportunities this reader has are golden, the lives they touch are valuable. They consider their purpose and mission to advocate, educate, and touch just one life at a time. They support and encourage LGBTQ+ young adults with disability and act as a sounding board, a shoulder to cry on, and are a stout champion to a truly marginalized group.

Are you an abled administrator, director, co-worker, or friend? I encourage you to use realistic encouragement and language as you lovingly support the folks in your life who have special challenges to overcome. Having YOU helps them overcome. Be careful not to balk at a seemingly unrealistic goal. If people with disability are anything y’all, they are realists! If you are blessed with an invitation to chart a path alongside someone who is determined, then LISTEN, research, encourage, and advocate on their behalf.

A well-meaning friend and I had our behinds parked on a bench on campus catching up with each other. Some geese flew overhead, flying in a perfect “V” and heading South for the winter. My friend said, “Wow, what a racket!”

I grinned at her and said, “Well I don’t hear anything!”

Abashed, she said, “Well at least you can see them, right?”

I said, “Sure! And I do LISTEN with my EYES sometimes!”

However, unless a big ol’ goose comes waddling up to my side and honks right in the direction of my cochlear implant, I’m not gonna hear it’s unique sound y’all. This doesn’t mean that I do not have a purpose since I cannot hear a goose honk from high above while flying in formation. My disAbilities make me uniquely qualified and effective to make a difference in the lives of those in Denise Portis’ sphere of influence. Y’all have a sphere too. Manage it. Own it. Thrive. Because all of us are pretty…

FABULOUS.

L. Denise Portis, Ph.D.

2023 Hearing Loss Journal

When Overcoming Makes You Really Tired

Published on December 29, 2022 by hearingelmo1 Comment

Photo by Alina Levkovich

There’s nothing easy about finding your way through a world loaded with obstacles that others can’t or don’t see. When you are different, you can feel as if you’re operating with a different map, a different set of navigational challenges, than those around you. Sometimes, you feel like you have no map at all. Your differentness will often precede you into a room; people see it before they see you. Which leaves you with the task of overcoming. And overcoming is, almost by definition, draining. — Michelle Obama (Obama, 2022, p. 7).

I have said this time and again at Hearing Elmo. People with disability, challenges, and invisible or visible issues are the strongest people I know. It’s as if working hard to carry on and adapt, cope, and do your hardest to thrive, develops physical, mental, and spiritual muscles. The comparison to muscles stops there, however. Yes, our “differentness” can make us stronger, but it rarely produces true strength, muscles that are bulked up and fit. We may be strong but we are also very tired. We may often FEEL weak.

“Individuals with disabilities are at a greater risk of experiencing fatigue than the general population, and this risk increases with age” (University of Washington, 2013, para. 1). I am in my 50s now and can certainly attest to finding myself fatigued earlier in the day because of my disabilities. Even though I have a service dog to help me with gait, balance, and directed retrieves, even though I have a cane and hear with a cochlear implant, hearing and walking are physically and mentally draining. It sucks we don’t burn calories navigating life with a disability! I even make it a top priority to take naps when I can, eat healthy foods, exercise 3-4 times a week, go to bed at a decent hour and even practice mindfulness to the point it is seamlessly woven into the fabric of my life now.

Many are confused about what mindfulness really is. I think they picture someone in a yoga pose with a very zen expression. Mindfulness is actually a very active and participatory state of being. In other words, taking a long nap is not mindfulness. Unless your subconscious mind produces better results than mine does, you cannot be asleep and practice mindfulness. “To live mindfully is to live in the moment and reawaken oneself to the present, rather than dwelling on the past or anticipating the future. To be mindful is to observe and label thoughts, feelings, sensations in the body in an objective manner. Mindfulness can therefore be a tool to avoid self-criticism and judgment while identifying and managing difficult emotions” (Psychology Today, n.d.).

This “practicing mindfulness” is especially helpful after a “terrible, horrible, no good, very bad day” (Viorst, 1987). When my disabilities or rather, working, living, and loving others with my numerous disabilities KICKS MY BUTT, mindfulness helps me keep it in perspective and center myself in the present rather than focusing on my “terrible, horrible, no good, very bad day”. Something I actually tell myself after these kind of days? TODAY HAD SOME HICCOUGHS BUT TOMORROW WILL BE BETTER. I WILL TAKE CARE THAT I TAKE CARE TO AVOID BEING IN THIS SAME PLACE TOMORROW.

We can, and have, and will continue to overcome. We will also be tired, perhaps even always tired. This journey is worth it, my friend. Even if our journey includes constantly coping, adapting and persevering. It’s worth it. And by being worth it, we are a living, breathing, testimony that people with disabilities believe life is worthwhile; that WE are worthwhile.

L. Denise Portis, Ph.D.

2022 Personal Hearing Loss Journal

Obama, M. (2022). The light we carry. (1st edition). Crown Publishing.

Psychology Today (n.d.). Mindfulness. https://www.psychologytoday.com/us/basics/mindfulness

University of Washington (2013). How to do a Lot with a Little: Managing Your Energy [Factsheet]. Aging and Physical Disability Rehabilitation Research and Training Center. http://agerrtc.washington.edu/

Viorst, J. (1987). Alexander and the terrible, horrible, no good, very bad day. Simon & Schuster.

What do you care, right?

Published on January 29, 2022January 29, 2022 by hearingelmoLeave a comment

#ResolutionRENEW

I’m a co-advisor for a campus student club/chapter of Active Minds. One of the things we talk about in our meetings at LEAST once a semester is that using the right word does matter. Check out this great (short) video that emphasizes some of the things we share with our students: MUST SEE VIDEO

Two words I habitually say are “CRAZY” and “INSANE”. Truthfully, I had achieved a point where most of my verbal language (well… and SIGN for that matter) had eliminated these two words. I don’t know if it was the break between semesters or what – as I’m certainly not making excuses. To my dismay (with a little bit of HORROR thrown in) I discovered that these words were back — being used again as a common descriptor in my everyday language.

As a matter of fact when my epiphany occurred, I was actually having a Zoom meeting with the co-advisor of our much loved club, Active Minds. At least twice I said something about how “CrAzY” something was in regards to the total and normal OVERWHELM that accompanies this ongoing pandemic. My friend and colleague (to her credit) didn’t call me on it (though I wouldn’t have minded if she had), but y’all? American Sign Language is my second language! Therefore, facial expression, body language, posture, etc. are something I just pick up on as a normal part of any kind of communication, including verbal. So she tensed and her eyes popped wide; she calmly agreed with what I was saying but used better words like “disappointing”, “frustrating” and so on. I left that meeting determined to get back on track with using better words. Words that do not have negative connotations and stigma attached to them. It’s a “speech rule” that is important to me, so renewing this pledge to do better was also important to me.

Other Kinds of Poor Choice Phrases

This past week I was painfully reminded of other types of habitual words and phrases that are shockingly an eye-opener to the receiver. These are the kinds of phrases that make me WINCE – and I’m not always good at hiding that wince. I have a student in one of my face-to-face classes that says “what do you care, right?” and sometimes “what do I care, right?” It is very obviously a verbal habit because it rolls off the tongue almost like it is “filler”. For this student, I can only guess that it was habit, but self-fulfilling prophecy, Pygmalion effect, and abuse are likely culprits of using a phrase so frequently and out of context.

To explain how tragic this repeated verbal phrase is, we’ve only had two classes so far this semester and yet I know for a fact that I and others have noticed. Sure, the phrase was verbalized along with an eye roll, a self-deprecating chuckle, and failure to make eye-contact. It was not difficult to register the

PAIN

FEAR

LONLINESS

S.O.S.

in this oft-uttered phrase during our 10 minute after class “chat. Trust me. I’m no conversation guru nor interpreter police. However, I do pick up things like this because I *do* pay attention to facial expression, body language, posture, hand shapes (tense fists) and more when I communicate because I hear with bionics. I need those other cues for total understanding and clarity.

PERSONAL GOAL: Somehow, some way, let this student know during our semester together that I do. I do care. I care a great deal.

Check Yourself

I would like to put out a challenge to every person reading this post who also lives with visible or invisible conditions or disability.

DO YOU FREQUENTLY AND HABITUALLY USE ANY LANGUAGE THAT UNDERMINES WHO YOU ARE?

It may not be words or phrases you even say out loud. Perhaps you only THINK these words that are ultimately harmful to who you are. You may need some help with this challenge. Ask someone else if you ever habitually utter negative words or phrases. Maybe even ask them to get back to you on it so that they can think about it. (BONUS: Perhaps they will also discover that they do this as well!)

If you are like me, we have been saying these things (or thinking them) so long that they are firmly entrenched in the way we respond and communicate with others. One of my siblings constantly smacks their head and says, “stupid, Stupid, STUPID” to themselves. Yup. That one is obvious.

Maybe (like me) self-deprecating humor is a way you cope or “deal” with your disability. Heck, many diversity champions and comedians use this means to educate and advocate. But y’all? You and I know when we are in advocate mode or bad-habit negative talk. Having a balance disorder, I am a klutz. I am constantly tripping, stumbling, and weaving my way around campus. For a very long time I would laughingly tell a concerned member of my “village” that “GRACE is not my middle name“. That is mild negative response really. However for ME, it started to fester a little. Every time I said this after an awkward stumble, I felt…

less.

Now when I “skid around a corner and clutch at Finn’s vest while correcting my sliding right foot and over-compensating for a bounce of my shoulder off the nearest doorframe” (I kid you NOT), I simply say, “Whoa. That was a close call”. That’s enough for me now. I don’t feel less when I say it. Saying NOTHING does not work because I will be bombarded by well-meaning people in my “village” who ask if I am OK. Acknowledging my “close call” for some reason reassures everyone that I really am OK. “I’ve got this”. Recognizing negative language and learning to use BETTER words really does make a difference. It impacts self-esteem. Choosing BETTER words strengthens diversity advocacy and pride.

Words matter. Self-talk matters. You matter.

L. Denise Portis, Ph.D.

2022 Personal Hearing Loss Journal

Overcoming It

Published on June 23, 2018 by hearingelmo1 Comment

A hero is just someone who is brave a little bit longer

For a former “farm girl”, I recognize it goes against the grain to say I HATE RAIN.

Besides… I don’t HATE rain, I hate the consequence of rain.

Not the consequence of providing necessary water to growing plants.

Not the consequence of washing the world clean.

I hate the consequence of navigating a rainy day. It promises bruises, headaches, falls, and sudden yelps and “CRAP, woah!” exclamations.

The irony is not lost on me that although I am profoundly deaf (when not wearing my cochlear implant),

although I have post concussive syndrome from numerous falls,

although I have a bum ankle that I badly sprained 4 years ago and wish to God I had broken instead,

… Meniere’s disease is the battle for which I must “don the cape”. Something that falls into the “invisible illness” category. A disease/disorder with no cure and few agreed upon symptom smashers.

Meniere’s and weather changes are incompatible. On bad weather days I sometimes have to psych myself up and recognize that I cannot change the weather today and I cannot cure my Meniere’s. What I can do is “don the cape” and make the best of it.

Today I had my heart set on going to training at Fidos For Freedom, Inc., the organization from which I received both of my service dogs. My current service dog, Milo, loves going and the extra practice does us both good. I usually don’t wave the white flag on a day until I actually get up and go look at the sky. Lord knows, our weather forecasters are not very accurate about a “3 day” or “5 day” outlook. (Super strange that it seems the m0re technology available to us, the more meteorologists miss the forecast). I usually know it’s raining outside as soon as my feet hit the floor. I certainly cannot hear it <grin> as I don’t “have my ears in yet”. This morning I knew as soon as I swung my feet out of bed that it was raining. It’s fairly easy to guess when the entire room is spinning and the floor seems to be missing under my feet.

I always start out strong. I CAN DO THIS. I let the dogs out and start my coffee. Something I do each and every morning. No matter that I am doing it while hugging the nearest wall or counter.

I didn’t sink to the floor this morning, sobbing, after letting the dogs in for breakfast. I hung on to the chair rail molding on the wall and shook, said a few choice words, immediately asked for forgiveness and pled in genuine prayer to help me let go and walk to the kitchen. I’ve learned that caving to the despair only exacerbates my symptoms.

So I’m not going to Fidos For Freedom, Inc. today even though Milo-bear is looking forlornly out the window wishing we weren’t at home.

Please do not misunderstand this post. I’m not looking for sympathy. I am not inviting you to my pity party. I simply want to share what it is like to live with a chronic, invisible illness. It might also surprise you that I am ~~glad~~

~~happy~~

~~untroubled~~

~~delighted~~

~~pleased~~

… at peace with having this disease. If I did not have Meniere’s disease, I know that I would not have the heart and passion for people who live with invisible illness. When I am the one tagged to produce a post for “Hearing Elmo”, I do not do so from the keyboard of an expert. I don’t have the answers. I don’t have anything profound to share today.

NOTE: Like to write? Want to share your journey? Hearing Elmo welcomes guest writers!

Instead I can salute and encourage all who must “don the cape” and simply make it through today. Overcoming one hour at a time and making the best of it. Shauna Niequist said, “… what I can do is offer myself, wholehearted and present, to walk with the people I love through the fear and the mess. That’s all any of us can do. That’s what we’re here for.”

We are super heroes because simply “overcoming it” is our default and salvation. It’s not always pretty and I don’t always “rock my cape” with grace, drive, and power. Sometimes I just feel pissed. But…

I’m overcoming it. I’ve had practice. I’ve got this.

And friend? So do you.

Nope. It ain’t easy. You can overcome it. You have before. You will today. “Don the cape” and get through today.

L. Denise Portis, Ph.D.

A Prisoner of STIGMA

Published on April 19, 2017April 20, 2017 by hearingelmo2 Comments

Tonight (4/19/17) is the 2nd annual d.A.M.N. event (disABILITY Memoirs and Notes) at Anne Arundel Community College. I was asked to share my presentation on Hearing Elmo.

PowerPoint: https://app.box.com/s/qkdo19k20djznhlpeezo7js24ik5f0mn

Presentation:

My name is Denise Portis and I teach Psychology courses here at AACC.

Thank you for coming to our 2nd annual d.A.M.N. event.

Today I want to talk to you about being a prisoner of STIGMA. I have been a disABILITY advocate for 25 years. It was not very difficult for me to reveal hearing loss and Meniere’s disease. However, the disability that had the greatest impact on me was mental illness, and THAT I chose to hide from everyone outside my immediate family.

SLIDE 2

What is a stigma? A stigma has SHAME attached to it. One source defines it as a mark of disgrace associated with a particular circumstance. If anything is well known for having a stigma associated with it, it is mental illness. I didn’t want my friends to know, my co-workers to know, my parents or siblings to know, or even my children to know until they were much older. I had become a prisoner of the stigma attached to mental illness without ever going to trial. Yet, I was as incarcerated as any person charged and tried.

SLIDE 3

I have struggled with depression and anxiety most of my adult life. I tried to hide it and even get help for it quietly, being careful not to reveal my diagnosis to anyone but those closest to me. I had heard that publicly owning it would follow me in my medical records. People would think I was unstable, unreliable, and needy. I had heard a number of accusatory and negative comments once I began choosing who I would disclose this to. I’m still surprised I didn’t allow early comments to zip my lips and go back into my jail cell, remaining a prisoner to the stigma. However, I began to experience real freedom in acknowledging what was wrong with me. That acknowledgment changed the wrong to right. For the first time I was able to understand what my diagnosis were. Mental illness is an illness. It isn’t chosen, it can be treated, and a victorious life could be mine, So I began to tell EVERYONE. It became a very real part of how I chose to be an advocate. For me, transparency worked.

SLIDE 4

And yet, throughout my determination to live free, I saw people who were given a death sentence because of their mental illness. Amy is one of my heroes. If you’ve heard of Project Semicolon, you’ve heard of the movement she began. Amy said about Project Semicolon, “In literature an author uses a semicolon to NOT end a sentence but to continue on. We see it as you are the author and your life is the sentence. You’re choosing to keep going”. Amy took her own life last month.

SLIDE 5

Luis Montalvan came to speak at AACC in 2015. Many of us in the SODA club even had our picture taken with him. Luis was a national and renowned speaker about PTSD and travelled with his service dog, Tuesday. Luis took his own life in December.

These two individuals were very open about their mental health disorders. Being open made a difference. Both actually found doors of opportunity available to them because of their openness. I have to tell you when I first heard about both of their deaths, I cried. I shed tears because I know what it is like to get really tired of facing a new day with mental illness. It is hard. Even though I have chosen to surround myself with people who accept me exactly as I am, even though I am open and honest about my disabilities and refuse to be a prisoner of stigma, I totally GET what it feels like to WANT to give up.

Are Amy and Luis cowards? Do I have something they do not? No, and NO. Their lives and their deaths simply act as a reminder to all of us that mental illness is HARD. The way I combat the hopelessness and the aloneness is by being open. I present my story and my choice simply as a way for you to examine if this will work for you. If stigma is crippling you and making you feel like a prisoner, you may want to consider a jailbreak.

SLIDE 6

Be vocal. Fight in the open. Insist on acceptance and understanding. You may not find it in your current group of friends and family. I’m not telling you that you should walk away from THEM. I am asking you to look for revealers. Look for people who do not shy away from the diagnosis, who have learned not to be ashamed nor captive to their illness. They are out there. They can be found.

SLIDE 7

At AACC the SODA club makes it easy. The group is committed to being assumption destroyers and helping to erase the stigma associated with all types of disabilities. Those that are visible and easily seen, and those that are invisible and are only known upon “reveal”. We call our group superheroes. Their super powers are different. Each have strengths and each work hard to make a difference in a superhero kind of way. If you are looking for a place to make a difference on campus and within your community, we invite you to be a part of SODA.

L. Denise Portis

Can You Be Arrested for That?

Published on September 24, 2016September 24, 2016 by hearingelmo6 Comments

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:

Denise Portis

More Vulnerable than I Thought – Stronger than I Imagined

Published on August 24, 2016 by hearingelmo4 Comments

Earlier this summer my parents came to visit. For some reason, I always have a “project” for my Dad. For some reason, he never seems to mind. This time, he built and secured a lattice porch screen to give us some privacy between our deck and the neighbor’s house. We have a huge yard, but it is long and narrow–not very wide. One of the first things my Mom and I did was plant Morning Glories. This beautiful vine has done so well this summer. It’s a childhood “feel good” memory for me, so I love greeting the blooms each morning.

I think one of the things I love about Morning Glories, is that they are (ahem) … GLORIOUS in the morning.

I love coming out in the morning, in the quiet and cool AM environment, and having these cheerful flowers greet me.

VULNERABLE

I think one of the most difficult things about chronic illness and being differently-abled, is a sometimes, overwhelming feeling of vulnerability. I don’t know about YOU, but I hate feeling vulnerable. I’m not talking about the healthy kind of vulnerability where one learns to open one’s heart to another. I’m not talking about learning to be transparent and (at times) brutally honest (or, receptive of someone being brutally honest to YOU). I’m talking about the kind of vulnerability where you know you are at risk – in trouble – and floundering.

I am feeling pretty vulnerable. I hate having an illness that is progressive. Even though I work my butt off trying to be independent and capable, each year it seems to be more difficult to “get my glory on“. I love mornings. I’m a (disgustingly) cheerful early-bird person; perhaps, part of the reason I have been able to greet the Morning Glories with a smile on my face. While standing and watching the dogs race around the yard and work on waking themselves up, I often find myself reflecting, even praying at times. Lately, I think I’m perpetuating my feelings of vulnerability. During my AM REFLECTIONS, I have been thinking about where I was physically a decade ago, five years ago… and even last year. Ten years ago, when I was only 40-years-old, did I know that I would navigate with a service dog and cane? Did I understand that I would only be able to hear when I had my cochlear implant connected? Did I know that I would have a pronounced limp from numerous twisted ankles as the result of falls? Did I know that on the evening of August 23rd, 2016, I would have numerous bouts of vertigo, nystagmus, and several panic attacks between bedtime and when my alarm clock kissed me awake? (The benefit of having a service dog and retired hearing dog as your alarm clock). Nope. I didn’t know this would be my life. It makes me feel vulnerable (and depressed).

STRENGTH

I am my own cheerleader.

Don’t get me wrong. When I need encouragement, I know how to reach out and ask for help. This practice being, a different and healthy kind of vulnerability. If you are a person with chronic illness, invisible or visible disabilities, and special challenges that make life rather difficult at times, you may have no problem telling someone “I’m done“. I do have problems with that. I find it easier to say, “I’m struggling“, and less easy to admit “I’m done“.

I think part of it is because I don’t want to disappoint anyone. Even at Hearing Elmo, I try to keep things positive and encouraging. As a co-advisor of a student group for people who are differently-abled, I want to model confidence and a “can do” attitude. But honestly? Sometimes, I’m just done. This morning (after the night I had), I could not “get my glory on” in spite of my special flowers greeting me the same as usual in a beautiful late summer, sun-rise welcome. I found myself struggling. I found myself feeling vulnerable, depressed, and on the verge of giving up.

When I cheerlead for myself, I tend to default to a number of cheers:

There are other people worse off than I am. Yet, they are productive individuals who find purpose in life.
I have support from people who care about me, who encourage me to utilize everything I can to be independent.
I am making a difference. It doesn’t matter if my niche in this big world is a tiny pocket of influence. If I can help make a difference in one, it is still making a difference.
All the things I enjoy, and people I love, are opportunities and relationships I would not have if I didn’t have the challenges I have.
I know, without a doubt, that I am a better, stronger woman because I have Meniere’s disease and am late-deafened. Calhoun and Tedeschi (2014) explain it best: “The encounter with a major life challenge can also include an increased sense that one has been tested, weighed in the balance, and found to be a person who has survived the worst, suggesting that one is indeed quite strong” (p. 5).
Life can be difficult. It’s a good thing I’m STRONG.

Ultimately, the way I “keep on – keeping on” is recognizing that this is hard, but I CAN do this. I’m going to have bad days. I’m going to need help. I’m going to fail, mess up, SCREW up, and want to GIVE UP. When I am weak and vulnerable, I am also strong.

I’m also learning that it is ok to say, “I’m done“. (Ouch. That hurts to even type it!) However, I recognize that this admission… this vulnerability, also means I’m strong. Stronger than I ever imagined.

Denise Portis

Calhoun, L. G. & Tedeschi, R. G. (2014). Handbook of posttraumatic growth: Research and practice. New York: Psychology Press.

The Last Straw

Published on May 26, 2016 by hearingelmo7 Comments

The Last Straw (that broke the camel’s back): The final, additional, small burden that makes the entirety of one’s difficulties unbearable.

Isn’t it interesting that there are so many idioms and colloquial expressions that mean “I’m done”?

The straw that broke the camel’s back (1816)

The last feather breaks the horses back (1829)

The final straw

Hitting a brick wall

Hanging up one’s gloves

The final stroke

I’m sure there are others. I’ve had a heck of a month. No worries – I actually thrive under (some) pressure. However, once in a while each one of us is simply not going to be able to take ONE MORE THING. That ONE MORE THING is often inconsequential and “small” in the grand scheme of things. Perhaps that is why we are so frustrated for breaking under what seems like a “small” thing.

This morning I was stepping off the porch when a “throw your head back to sneeze” came out of nowhere. Just. Like. That. I was horizontal with a teeny, tiny bit of remaining tunnel vision. My ears were roaring. I was nauseous. I had two very concerned service dogs in my face.

Do you know I sat there and CRIED? I use to cry over everything. I mean, every, little thing! Happy, sad, angry, or confused, I’d unload some stress by crying my eyes out. These days I rarely cry. If I’m crying now, something is seriously wrong, or I have no reserves left and I’m “just done“.

It only lasted a minute or two. With retired neighbors on both sides of me, I can’t sit on the ground wailing very long before I garner some unwanted attention. I chanted to myself, “Suck it up, buttercup!” and struggled back to my feet. I’m sporting a few new bruises, and my pride? Well heck. My pride wasn’t hurt at ALL. When you have Meniere’s disease, pride isn’t crushed in falling, for one falls a lot. Pride is when you KEEP yourself from falling <big grin>

I felt so much better and finished watering the hanging baskets and flowers before making my way back inside. I likely over-analyze things too much. When psychology is your main squeeze, you tend to analyze everything. I took a few minutes to think about why falling on my face and experiencing a short bout of vertigo set me off. I determined it was “the last straw“. Have you ever felt that way when burdened with one more “little” thing?

It is very normal to have days like that. We all have stress. Stress can be good – and bad. Do not confuse stress with burnout. How do you know if you are becoming burnt out? According to the Help Guide organization (2016),

You may be on the road to burnout if:

Every day is a bad day.
Caring about your work or home life seems like a total waste of energy.
You’re exhausted all the time.
The majority of your day is spent on tasks you find either mind-numbingly dull or overwhelming.
You feel like nothing you do makes a difference or is appreciated.

(para. 6).

I love this chart (for I am a “chart” kind of person). I think it does a terrific job explaining the difference between stress and burnout:

Stress vs. Burnout
Stress	Burnout
Characterized by overengagement	Characterized by disengagement
Emotions are overreactive	Emotions are blunted
Produces urgency and hyperactivity	Produces helplessness and hopelessness
Loss of energy	Loss of motivation, ideals, and hope
Leads to anxiety disorders	Leads to detachment and depression
Primary damage is physical	Primary damage is emotional
May kill you prematurely	May make life seem not worth living
Source: Stress and Burnout in Ministry

As you can see, both stress and burnout can be dangerous. Short-term stress, and at times – chronic stress, are a normal part of life. The “last straw” can actually be a good thing if it means you do something to alleviate some stress.

I cried. I hugged my dogs. I over-analyzed to my heart’s content.

However, the “last straw” can also be a prerequisite to something far more dangerous.

So what do you do when you feel your knees buckle and your back breaking? Well the first step in successfully recovering from collapsed camel syndrome is recognition of the problem or problems. Take some time to evaluate where you are at in your life. Are you over-extended? If so, what can be cut out? Start working on de-stressing. What can you take off the back of your camel?

Are you getting enough rest and taking care of yourself by eating right, getting some fresh air and sunshine, and laughing out loud occasionally? If not, make it a priority to do those things. They can strengthen “your back“.

The Help Guide organization explains how we can unload some of the burden on our camel:

Burnout prevention tips

Start the day with a relaxing ritual. Rather than jumping out of bed as soon as you wake up, spend at least fifteen minutes meditating, writing in your journal, doing gentle stretches, or reading something that inspires you.
Adopt healthy eating, exercising, and sleeping habits. When you eat right, engage in regular physical activity, and get plenty of rest, you have the energy and resilience to deal with life’s hassles and demands.
Set boundaries. Don’t overextend yourself. Learn how to say “no” to requests on your time. If you find this difficult, remind yourself that saying “no” allows you to say “yes” to the things that you truly want to do.
Take a daily break from technology. Set a time each day when you completely disconnect. Put away your laptop, turn off your phone, and stop checking email.
Nourish your creative side. Creativity is a powerful antidote to burnout. Try something new, start a fun project, or resume a favorite hobby. Choose activities that have nothing to do with work.
Learn how to manage stress. When you’re on the road to burnout, you may feel helpless. But you have a lot more control over stress than you may think.

(Help Guide.Org, 2016, para. 23).

Finally, acknowledge how incredibly resilient camels are! In Arab cultures, the camel symbolizes patience, tolerance, and endurance. Yes, at times you will need to ask for (and hopefully receive) help. This is a terrific article on finding help: (Where to Begin: Finding Help During Chronic Illness).

Denise Portis

Help Guide.Org (2016). Preventing burnout: Signs, symptoms, causes, and coping strategies. Retrieved May 26, 2016, from http://www.helpguide.org/articles/stress/preventing-burnout.htm