Author: hearingelmo

I have had a bi-lateral hearing loss since the age of twenty-five. By Christmas of 2003, my hearing loss had become so profound that communication had become very difficult. Even with the aid of two BTE hearing aids, assistive listening devices, and speech reading, trying to communicate had become very difficult. In the fall of 2004, I began investigating the cochlear implant and was evaluated at Johns Hopkins in Baltimore. I was told that I qualified for implantation in "either" ear. I chose to implant my "worse" ear, which is my left one. On April 6th, I was implanted with the New Freedom, recently released by the FDA. I was activated on May 13th. I am hearing in a whole new way, and my life has completely changed! I did not think I would hear this way again "this side of Heaven"!

I can do anything I set my mind to! OK, not really…

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Trying to come up with a topic for this post, I started with, “ How many woodchucks could chuck wood, if a woodchuck could chuck wood?”

Then I started doing some research. Woodchucks are also known as groundhogs. I do not think in all my years of repeating this silly little tongue-twister, I ever pictured a groundhog. My mental image was more of a beaver or large, strong rodent that could, erm… chuck wood.

Then there is the problem of “chucking”. As in, tossing? It isn’t chuckling. Maybe heaving and vomiting? I ended up with so many questions and rabbit trails to research, I decided to simplify. Woodchucks (erm, groundhogs) do not chuck wood. Sorry to burst your bubble. I’m sure they can do many, MANY things, including determining how many weeks of winter is left, but they can’t chuck wood. I’m not gonna tell a woodchuck she can do something when she can’t.

Those who advocate, support, befriend and serve the DisABILITY community, may enthusiastically encourage and remind us that we can do anything we’ve set our minds to do. In my opinion, this is not realistic, nor helpful. Frankly, even able-bodied people cannot do everything they set their minds to do. We are limited by our physical make up, genetics, and access to resources.

I much prefer encouraging people with disABILITY and chronic illness to identify what brings them happiness and peace, and then discover by what means they can achieve those goals and activities. I love to write, yet it is not at all easy for me to do now. I am grateful for access to electronic tools and apps that allow me to write even with low vision, but it is hard and it takes a lot for me to do so. I also love to read! Again, I am very grateful to be living in a time that books can be electronically delivered and a super large font used to read. Just because I can still write and read, doesn’t mean I SHOULD. For example, the energy it may take might leave me useless the rest of the day. I have to weigh how important it is for me to do something with a high cost.

I had another small stroke in May and in the weeks recovering from this, I was reminded that a person’s WILL and desire to accomplish something is not always enough. For example, I wanted to go get my mail last week. The mailbox is across the street. I have a cane and a walker, but 100 feet is 100 feet. Also, the curb cut adds about 50 feet to my trek. As I was super wobbly that day, the mailbox was not something I could accomplish even with accessibility tools. Last Monday, I determined I was steady enough on my feet to cross the busy one-way street and get the mail. I forgot my sunglasses! Completely blinded, I sat at the end of the driveway and texted my husband to come walk me back. Thankfully, he was working from home that day. I can’t really go get the mail anymore y’all! At least not safely.

So why do we tell people with disability or chronic illness that they can do anything?

Better to discover what those in your life with disability, want to do and hope to do and then help them discover how to accomplish it! I wouldn’t dream of guessing at the number of woodchucks that could chuck wood because…

… they can’t y’all.

I was talking to my psychiatrist this week and explained that those who love me are learning that it is hard for me to make plans because I never know what my energy levels will be. “They’ve learned I may text and tell them I can’t be picked up to go to a movie”. He asked, “So what is plan B?”

cRiCkEtS

“You need to connect, so if a movie is OUT, what is IN?”

Maybe I could have watched a movie on Netflix over zoom with that friend.

I’ve had friends ask to meet me for coffee. I can’t drive. You could pick me up though! I can’t talk on a voice phone. I text like a champ, however. So I’m learning to offer other options, though a plan B for the day is a new one I need to wrap my head around. Just don’t ask me to chuck wood.

L. Denise Portis, Ph.D.

“If you’re lost, we’re all a little lost and it’s alright”

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I first heard Nightbirde’s song, “It’s OK” the night after her America’s Got Talent audition and subsequent Golden Buzzer by Simon Cowell. If you followed her story, she was unable to continue in the competition because of the cancer that ravaged her body. She passed away in February of 2022, just three weeks before my Mom died of ALS. Nightbirde, Jane Marczewski, left a lasting legacy, however. I hope you will check out her amazing life, music, and story at the link above or at Nightbirde.

I had chosen to let Hearing Elmo languish and sit unused on April 8, 2024. Mentally and emotionally immobilized by the adjustment of yet, one MORE progressive disability (vision loss), I had pretty much “tossed in the towel”. Because I am unable to teach now, I felt pretty much like I had no meaning and nothing to convey that would mean anything to anyone. Slowly, I recognized how lost I was in my thinking. Having lived with hearing loss and deafness, Ménière’s disease, MS, and now vision loss, I was unwilling to adapt and learn new ways to do something as simple as WRITE as it meant learning new technology and being kind to myself when writing took 5x longer than it used to create a blog post. I was struggling with mattering, a psychological construct defined by Flett as “a person’s need to feel significant in the eyes of other people” (Flett, 2018, p. 31). Busy (arguably TOO busy) being a teacher, advisor, mentor, disability advocate, and speaker, I found that pouring myself into others with chronic illness and disability was rewarding and fulfilling. Prilleltensky (2020) explained that mattering was more than being of value to others; that it was also GIVING value to others. Once a stroke and glaucoma impacted my vision to the point that it was a disabling condition, I felt like my purpose and ability to MATTER to others was gone.

It took a great deal of introspection, therapeutic counseling, praying and self-determination to discover that it was enough to “matter” to me; that I could see the value of my life… past, present, and future. I have to be honest and admit I hit an ALL TIME LOW before discovering this. I clawed and fought my way back out of the hole I threw myself into by seeing and believing I mattered to myself. I am still learning that this is ENOUGH.

Are You Lost?

If you are a person with disability or chronic illness/conditions, you may feel lost. It really IS ok, for we all are a little lost sometimes! I love what Rick Warren (2012) said about experience in his book, A Purpose Driven Life. Experience is not what happens to you but rather what you do with what happens to you. Choose not to stay lost. Warren goes on to encourage us to use the pain of our loss, our disability, our chronic and perhaps debilitating condition, to help others (Warren, 2012).

A quick search using generative AI, I found a great list of ideas if you are stuck at being “lost”. Please comment and share other ways in which you have MATTERED.

  1. Volunteering
  2. Advocacy and Leadership
  3. Employment and Skill Sharing
  4. Creative and Artistic Expression
  5. Contributing to Faith (or other non-profit) communities

Flett, G. (2018). The psychology of mattering: Understanding the human need to be significant. Elsivier Inc., Academic Press. https://doi.org/10.1016/B978-0-12-809415-0.00003-7

Prilleltensky, I. (2020). Mattering at the intersection of psychology, philosophy, and politics. American Journal of Community Psychology, 65(1–2), 16–34. https://doi.org/10.1002/ajcp.12368

Warren, R. ( 2012). The purpose driven life: What on Earth am I here for? Zondervan.

L. Denise Portis, Ph.D.

©2025 Personal Hearing Loss Journal

I’m Still here, Just Not HERE

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3/23/2025 [EDIT: I am going to start writing again, if for no other reason than to put my thoughts to words. I’m leaving this post in, but plan to begin writing again as I learn how to navigate site while having low vision]

To my readers, family and friends,

Without any doubt or hesitation I can say with real conviction that I never thought this day would come. A lifelong disability advocate and writer, I assumed I would write through Hearing Elmo until the end of my life. I do not want to make a really long and detailed exit, but the “short version” is that my health has significantly declined. The decline is so impactful, I am no longer working and am struggling to thrive under a new set of circumstances and challenges.

I will still be writing, but likely only through occasional posts on FaceBook and Instagram. If you do not yet follow me on these social media venues, please connect today!

Thank you for being a part of my life.

L. Denise Portis, Ph.D.

©2024 Personal Hearing Loss Journal

Without a Purpose

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Pictured: Close up of 5-year-old English Cream Golden Retriever, Finn with partner/author Denise Portis in background looking over Finn’s shoulder into the camera lens.

In May of 2023, I was forced to quit my job due to declining health and progressive disabilities. If you throw in the facts that teaching psychology, mentoring students, disability advocacy, and suicide prevention were my life’s calling…. my PURPOSE, it stands to reason I have not adjusted well. My disabilities spiraled out of control after two semesters of incredible stress, anxiety, and yes – discrimination. The toll was SO HIGH, in fact, I had to drop legal proceedings because I knew that by the time my case was heard, I would likely be dead. That sobering reality made me quickly determine, “what is really important here?”

I wanted to argue that my PURPOSE was important. For 27+ years my identity was wrapped up in being a teacher, a disability advocate, a disability mentor, and making a difference in my little part of the world. Suddenly, just to survive, I was at home and only leaving for doctor appointments. My coworkers were my third service dog and two family pet dogs.

In my mentoring platform, one of my “go to” topics was always:

FIND YOUR PURPOSE. PURSUE IT WITH ALL YOU CAN WITH THE ‘SPOONS‘ YOU HAVE.

As every disability and related health concern worsened, I struggled with a new disability that I had never had to deal with before.

Hearing loss and hearing with bionics? Easy-peasy.

Mobility limitations and post-concussive syndrome? Piece of cake!

Vestibular disorder and vertigo? BRING IT ON!

Losing 68% of my vision in my right eye and no longer able to drive? *brain and heart implode*

My anxiety shot “through the roof” (though my lifelong depression is actually very stable and “good”… one of those things that makes me go “Hmmmm”). I had poured my life into a place and a community to find myself suddenly WITHOUT those things; without a purpose. At first I struggled and wrestled with trying to figure out a new purpose. But y’all? When your life’s purpose is the heartbeat of who you are as a person, provides the means to keep you going… how exactly do you let go of that?

You don’t.

I am not the first person with disability and – yes – passion, to not be able to do what I wish I could, what I used to be able to do. I am not the first person with disability finding themselves forced to take a breather and re-prioritize. I am not the first person with progressive disabilities to actually have that progression completely change my disabled self. For those of us that have had to leave a professional career, we meet a new antagonist named “Loneliness”. It sucks to go from having people to NOT having people.

As I struggled and prayed, and cried about finding a new purpose, it hit me one morning. As a “fall risk” and concussion patient, I avoid being hit as much as possible. However, this time the knock up the side of the head was a eureka kind of moment; an epiphany of sorts! I don’t need a new purpose. My purpose has always been that which stemmed from a life-changing “Ebenezer” moment.

“If you only make a difference in ONE, that difference is profound, indelible, and enduring”.

I do not need a new purpose. My purpose hasn’t changed. My audience may have changed. The manner in which I work and advocate may have changed, but my purpose has not.

Do you ever feel SO disabled, bound by the constrictions of your own health challenges and limitations that you feel worthless? Do you feel like you are purpose-less? Wilder (2019) explained it well when he said, “What we do does not determine our value as human beings, but at the same time, what we do is a healthy part of the human experience. Purpose allows people with disabilities to participate in that part of the human experience if employment is currently not an option for them. Participation is important because doing something usually makes someone a part of something. That not only boosts self-esteem and self-worth, but also reduces isolation and loneliness.” (Wilder, 2019, para. 5).

(If you haven’t read The Spoon Theory, see it in its original form here. I talk about being a “Spoonie” a great deal). If you do not have enough spoons to work or “do” with measurable results, you still may have a purpose. Wilder (2019) goes on to say, “Sometimes a severe disability can leave a person with few options. In those cases purpose can be found in being a good son or daughter, brother or sister, mentor or parent, and friend or neighbor. Being a positive presence in one’s family and community is truly a noble purpose. Achieving it can be as simple as participating in a healthy relationship with another person to the best of one’s ability.

The bottom line is that people with disabilities who can do something; need to do something. The mental and physical health benefits alone make it necessary. Replacing isolation with participation leads to better relationships, and happier and longer lives. People with disabilities have a lot of things taken away from them. However, a purpose is difficult to take away from someone – and it is a great way to take some of those things back.” (Wilder, 2019, para. 8-9).

My purpose hasn’t changed. A purpose keeps our brains firing, our heart beating, and lungs breathing.

L. Denise Portis, Ph.D.

©2024 Personal Hearing Loss Journal

Wilder, J. (2019). The complicated relationship between disability and purpose. Psychology Today. Retrieved January 8, 2024 from https://www.psychologytoday.com/us/blog/disability-in-motion/201901/the-complicated-relationship-between-disability-and-purpose#:~:text=Purpose%20allows%20people%20with%20disabilities,someone%20a%20part%20of%20something.

DisAbility Etiquette (part ONE)

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DisAbility Etiquette (Part ONE)

You cannot know how long I struggled with what to TITLE this piece! Having recently left a nearly 3-decades-long career in teaching (Psychology and ASL), I know how preoccupied folks are with being “inclusive” and equitable. Some even fully embrace being <GASP> WOKE. Folks who do not identify with any marginalized person group have shared with me (at least in the field of education and higher learning) that workshops, required certifications, and mandatory inclusive components more and more feel like “hoops to jump through”. 

I can tell you that as a person with disabilities, the last thing I want abled people to feel about inclusive practices is relief at having a checkmark on their HR records. I love the way Emily Ladau (2021) simplifies best practices with an easy to incorporate “rule” in interacting with those who are differently-abled. “The Golden Rule” is simple and easy to live out with true authenticity. Treat others in the same way you would want to be treated. “You don’t need to start overthinking everything you say or do. That just makes things weird. Disability etiquette isn’t about tiptoeing around us and treating us like strange, delicate flowers (in fact, that’s pretty ableist in and of itself.) It’s about treating us like full and equal human beings” (Ladau, 2021, p. 89). 

I truly believe (most) people mean well. Sometimes well-meaning intentions go awry, however. Yesterday, my husband and I went out to eat at a restaurant. My husband knows not to linger and hover over me as my service dog, Finn, gets me from “point A” to “point B” safely. Besides, he needed to make a “pit stop” so I walked out alone. As I navigated the last section near the door, I passed a booth with a family who had young children in it. Having lived the majority of my life with profound hearing loss, I do speech read fairly well. I saw one of the dads say to those at the table, “there’s a dog coming with a disabled person… don’t look, don’t stare, DON’T STARE”. Two of the three children (with age-appropriate ability to fully comply), dived under the table with one screeching, “I’m not looking at the dog! I’m not looking at the woman!” 

I tell you what, I was so cracked up I had to stop and lean against my cane for a second before giggling my way to the door. As I passed the booth one dad was doing a classic “face palm” while the other mouthed, “SORRY” as I hobbled by. When I got outside, I had to do a “cane lean” again as I seriously nearly fell over laughing. Those dads didn’t need to warn the kids about my coming by. Finn is gorgeous, smart, and talented. I don’t mind the “look at the dog!” comments. I know the dad’s comments were meant in respect, but please… just treat me like a normal person. I have bling on my cane, cochlear implant, and hearing aid. My dog is an 85-pound, solid Golden Retriever. I’m not invisible nor do I care to be. If someone says, “What a pretty dog” as I walk by, I simply smile and say, “Thank you! He’s amazing”. I don’t consider noticing something that is VERY noticeable as being rude.

Photo description: Large Golden Retriever with royal blue service dog vest under a table at a restaurant. 

To close out this two-part series on “DisAbility Etiquette”, I wanted to share some do’s and don’ts of two disabilities I have. [CHALLENGE: If you have other disabilities and would like to write for “Hearing Elmo” and share your own “do’s and don’ts” please contact me at denise.portis@gmail.com. I love having guest writers!]

In part two, I want to discuss some do’s and don’ts for people who use canes and service dogs for mobility challenges. In part one, I’d like to share some tips for interacting with people who have hearing loss. NOTE: I do “hear again” with a cochlear implant but these tips work for anyone with any degree of hearing loss, even those who are culturally Deaf.

DO:

  1. The Golden Rule (I won’t reiterate it again – smile)
  2. If you know someone has a hearing loss and you are hosting a workshop, meeting, or get-together, send an email or text to the person and ask what you could do to make the venue more accessible.
  3. Follow-up (especially work-related) meetings with an email to ask if they have any questions or missed any topics. (Careful with this one… don’t be condescending).
  4. If possible, secure captioning (transcription) for the meeting. Transcripts can be emailed to EVERYONE which only helps all present.
  5. Avoid small group activities where everyone is talking in small groups at the same time.
  6. If a person uses ASL, please provide an interpreter.
  7. Flicker the lights to bring the meeting to order. Yelling or wildly gesturing is rude.
  8. If there is a microphone present, USE IT. Don’t say, “my voice carries” or “I think everyone can hear me”. 
  9. Insist others use a microphone from the audience, or repeat any questions asked. 
  10. Write out on a white board or include a slide in a presentation if you are going to do any type of ice-breaker question, detailing what is being asked of participants. 

DON’T

  1. Announce or otherwise bring attention to any one individual who may have trouble hearing.
  2. Raise your voice to a near shout. 
  3. Turn your back to the audience to point to or gesture towards a screen or whiteboard.
  4. Talk to the interpreter of a culturally Deaf person, instead of talking to the person themselves. 
  5. Play music or “theme songs” in between speakers.
  6. Use videos without captioning turned on
  7. Talk at the same time someone else is.
  8. Over enunciate speech
  9. Chew gum or have other items in your mouth when speaking.
  10. Hesitate to ask the person with disabilities if you are not sure how to proceed.

Ladau, E. (2021). Demystifying disability: What to know, what to say, and how to be an ally. New York: Ten Speed Press

L. Denise Portis, Ph.D.

© 2023 Personal Hearing Loss Journal

Kindness Can Be Complicated

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Photo description: Finn, Golden Retriever, 5-yrs-old, off duty and relaxing on a wood porch.

YAWN. 

I get it, Finn. I’m nervous too. Stay calm. (I fidget with my cane)

Finn YAWNS again and sidles closer. 

I know! Should I be rude and curt? Condescending in hopes of shaming? Teacher/educator mode? I just want to shop without notice like every other person in this store!

Finn YAWNS and does a slight eye roll. With him as my shopping buddy I can’t very well go unnoticed.

Finn is my 3rd service dog. Like anything I take on, when I chose to be partnered with a service dog to help mitigate my disabilities, I learned all I could about dog behavior, training, and service-dog work. A dog yawning is a very specific kind of “dog language”. Turid Rugaas (2013) explains that when a dog yawns, the dog is signaling that it is nervous, anxious, or excited. Finn and I were silently communicating unease at having been stopped and engaged even though all of MY body language said, “stay clear, I’m doing fine on my own”. 

“Dogs yawn when they are slightly stressed by something in the environment. It can be something very simple, such as a dog or person passing by a little too closely. Dogs often yawn when they are feeling like they have to “perform” in some way. Dogs yawn often when they feel confused or frustrated by the current situation” (Aloff, 2007, p. 90). Finn was not comfortable because I wasn’t comfortable. Being my partner for five years, he knew that I was not happy this person had stopped me in Costco to talk about my disabilities and service dog. With only one hand on the cart (the other holding Finn’s leash), I automatically wobble more than I would if both hands were on the cart. Because of my wobbles, my cane, hooked for easy access on the cart handle, is banging against the side of the cart. I’m sure my voice is tense. I’m unhappy. Finn YAWNS.

I’m unhappy because someone is trying to be nice. 

You read that right.

Out of the kindness of their own heart, a total stranger asked if they could help me in the store. My cart has 7 or 8 items in it already. It’s obvious I didn’t need their help to shop thus far. I assure them I am fine and “thank them for asking”. They ask about Finn, who is now on his 5th YAWN. His vest says, “Please ask to pet me” on the side. 

This very KIND person asks, “May I pet him? What’s his name?” I reply (with kindness) my rehearsed response:

“I don’t mind if people pet him if I’m seated. Since I am not, it would be better for you just to ignore him.”

The kind person looked around and even stepped to the side to look down a long aisle with cooking utensils. “I don’t see any chairs”.

Oh because everything about me tells you I want to sit so you can pet my service dog and take even more of my time?

Instead I say, “Well I am shopping right now and we need to keep going. I tend to run out of energy fairly quickly so we need to finish up”. 

The kind person looks slightly affronted and says, “OK. I was only trying to help!” 

AND… There lies the conundrum.

Kindness is complicated. I truly believe people mean well. Perhaps if I were not differently-abled, I would make the same mistakes. Good hearted people want to help someone, especially if it looks like they are struggling. (By the way, I was doing great before being stopped and actually struggled more after having to engage – hence Finn’s YAWN.) 

As a former teacher, I’m all about advocating through education and information. However, there is a time and place for everything. Like most people with disabilities, if I need help I will ask for it. This is something you learn to do if you’ve lived with disabilities for some time. My service dog, cochlear implant, and cane can help me do most things independently. There are times, however, where I need some assistance. I will ask for it. I’ve never been turned down and I’m 57 y’all! That’s a lot of years of having to occasionally ask for assistance! Sometimes automatic doors will not work. Sometimes a dropped item is too big or too heavy for Finn to pick up. I will ask for help. I appreciate all the kind people but enough already. Rebekah Taussig (2020) said it best:

I am a magnet for kindness. Like the center of a black hole, my body attracts every good deed from across the expanse of the universe to the foot of my wheelchair. I move through parking lots and malls, farmers’ markets and airports, bookstores and buffets, and people scramble to my aid. They open doors and reach out their arms to help, they offer prayers, grab my handlebars for a push, watch over me, and hold out wads of cash (p. 167).

People trying to be kind can be authentic. They noticed me and really do want to help. It can also be someone who is curious and wants to learn more. Maybe they know someone with a mobility challenge and want to learn how they can best help? As Rebekah states, folk’s attempts at being kind can “be anything from healing to humiliating, helpful to traumatic. It’s complicated” (Taussig (2020, p. 169).

I’ve come home from Costco trips determined to be an online shopper. I’ve also come home and thought about what a positive shopping trip that was after asking a stranger for help when Finn’s leash snagged on a pallet at a Target we were at and I could not yank it free. I tried to free it myself for a few minutes and then caught the eye of someone nearby and said, “Would you mind freeing Finn’s leash for me?” A dozen or so people bumped heads trying to be first in line to free that leash! (Yeah, that was a slight exaggeration). After freeing us up, I went on about my business as did the kind “helper”. 

Kindness is complicated. Please don’t misunderstand. Kindness is wonderful. We NEED MORE KIND PEOPLE. The world NEEDS MORE KIND PEOPLE. Just use “intelligent kindness”. Does the person you want to help look as if they need it, as if they want it?

If you are person with a disability? Don’t struggle with something you cannot do on your own and then beret everyone around for not helping. If you need help, ASK.

L. Denise Portis, Ph.D.

© 2023 Personal Hearing Loss Journal

Aloff, B. (2007). Canine body language: A photographic guide. Interpreting the native language of the domestic dog. Dogwise Publishing. 

Rugaas, T. (2013). Calming signals—The art of survival. Turid Rugaas—International Dog Trainer: International Dog Trainer Education. Retrieved October 26, 2023 from http://en.turid-rugaas.no/calming-signals—the-art-of-survival.html

Taussig, R. (2020). Sitting pretty: The view from my ordinary resilient disabled body. Harper Collins Publisher.

Is it WORRY or ANXIETY?

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As a disAbility advocate, I have blogged about the challenges of invisible conditions or diagnosis as well as those that may be very apparent (to even a total stranger). One that I don’t often write about is mental health diagnoses, surprising since I am a psychologist. 

Life is hard. It doesn’t matter who you are, we all have a tough time at some point in our lives. All of us, to a person, also worry about things. These can be big things or small things. These can be small things you’ve made into BIG things. My Mom used to tell me, “Denise, you can make a mountain out of a mole hill!” When I was very young (8-10 years old) I thought it was a complement about achieving MUCH. It wasn’t until I was a teenager, seriously struggling with “worry over little things” that I understood the true meaning. 

Worry is a normal part of life. We worry because we care. We can also have short periods of time where we experience true anxiety and that too, is normal. As a psychologist, I adhere to many APA (American Psychological Association) definitions and will provide that here for you. However, even these “textbook” definitions seem to lack something and want some fine tuning. I asked for definitions of WORRY and ANXIETY from one of my social media sites and found the “fine tuning” of these words very interesting. Let me provide those here (with permission):

“I feel as though worry can be a protective reaction meant to protect and caution beings. Whereas anxiety is an all-consuming concern that renders you unable to make rational determinations and hinders the decision making process”.

“To me worry has a specific target and is low intensity. I’m worried about my family driving in bad weather when they leave my house tonight. It’s a passing thought. I ask them to check in when they get home. 

Anxiety doesn’t start with a target it’s an intense physical feeling of dread and fear that I will then attach to everything. Everything becomes the target. Disaster planning starts for every possible thing that could happen and what resources I have to overcome those disasters.”

“Worry feels thought driven. Though anxiety can be, for me it tends to sort of happen. Like I feel a coursing of chemicals in my body rush through and a step behind that, I think and process.

“I think anxiety occurs naturally for everyone and can be addressed more readily. Whereas I think worry is more deliberate – choosing to ruminate.”

“For me, worry is usually specific to something, and anxiety is free-floating and more irrational. Anxiety is usually more long-lasting, and I feel more out of control; worry can sometimes be alleviated by coming up with a plan B or something similar to that.”

“Worry to me is over thinking negative outcomes which may or may not be real. anxiety to me is a negative emotional response to a known or unknown stimulus that’s results in body changes such as elevated blood pressure, significant increases in heart rate and breathing, nausea, trembling, inability to rationalize reality, etc.”

“Worry to me is specific and directed toward one specific task or interpersonal relationship. Anxiety is a general feeling of apprehension, fear, or regret about multiple life events.”

“For me also, worry is specific and anxiety is a pervasive feeling of dread. It’s a fight or flight response chemically but there’s no immediate threat I need to escape from or fight off. One time I had a severe anxiety reaction while sitting at my desk, and there was nothing happening of concern. I will say that when there are a lot of different things that I’m worried about, It can bring on a more pervasive anxious state.”

“Worry are the waves and anxiety is the current. Those are the things I see and unseen issues sometimes randomly driving and daunting my soul.”

I was very impressed with the numerous responses. 

The APA (APA, 2023) defines both as the following:

Worry: A temporary chain of thought that is a negative form of thinking and promotes distress.

Anxiety: n. an emotion characterized by apprehension and somatic symptoms of tension in which an individual anticipates impending danger, catastrophe, or misfortune. The body often mobilizes itself to meet the perceived threat: Muscles become tense, breathing is faster, and the heart beats more rapidly. Anxiety may be distinguished from fear both conceptually and physiologically, although the two terms are often used interchangeably. Anxiety is considered a future-oriented, long-acting response broadly focused on a diffuse threat, whereas fear is an appropriate, present-oriented, and short-lived response to a clearly identifiable and specific threat. —anxious adj.

At this point you may be asking, “Why are you detailing the difference between WORRY and ANXIETY”? Anxiety that continues and impairs your ability to live your “best life” is a mental health disorder and often needs help to improve. This help can come in the form of:

  • Self-help books or support groups
  • Licensed therapy/counseling
  • Anti-anxiety medications
  • “Natural” or “herbal” plant-based remedies

Again, short-term anxiety and worry is normal. It can even improve outcomes and produce positive change. For example, maybe you are worried about an exam so you study more thereby receiving a better grade. You temporarily feel anxious about a birthday party you are planning for your sister. Until the party is over, you may be anxious about everything going well because you care about her and want it to be a “hit”.

When anxiety begins to impair your ability to function normally (what is “normal” for YOU), you may need to seek the help of a counselor, therapist, or psychiatrist.

Living with disabilities, visible/invisible conditions, or chronic challenges are hard enough without trying to do so when you are also anxious. The National Alliance on Mental Illness (NAMI, 2023) states that anxiety disorders are the MOST COMMON HEALTH CONCERN in the United States. Note that they do not designate the diagnosis as a mental health diagnosis. This is because anxiety disorders impact us physically, emotionally, and spiritually. There is likely no other disorder with the power to do more harm—should we allow it to continue without seeking help. 

I know that as a person living with numerous disabilities, I often focus on managing and treating my physical symptoms. However, I have learned that failure to manage/treat my mental health ultimately means that my overall health worsens. This is part of the reason I advocate so strongly for people to take their mental health seriously. If I were not managing/treating my anxiety and depression, ALL other symptoms and conditions would worsen. 

Mental health disorders carry a lot of stigma and negative stereotypes. Let’s do our part by talking about and treating “mental health” as an important part of our overall health. This is the only way we can normalize mental health issues and promote taking care of ALL of who we are. 

L. Denise Portis, Ph.D.

© 2023 Personal Hearing Loss Journal

Anxiety (2023). American Psychological Association. Retrieved October 2023 from https://dictionary.apa.org/anxiety?_ga=2.200114798.1388236549.1668603216-581175404.1667400704

Anxiety Disorders (2023). National Alliance on Mental Illness. Retrieved October 2023 from https://www.nami.org/About-Mental-Illness/Mental-Health-Conditions/Anxiety-Disorders#:~:text=Anxiety%20disorders%20are%20the%20most,develop%20symptoms%20before%20age%2021.

“What About Me? Effect”

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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:

  1. Connects you to information and resources about “what ails ya”. This yields truth to the “knowledge is power” phrase.
  2. Provides the means to share and connect with others struggling with similar issues.
  3. Provides a platform for advocacy and change.
  4. Alleviates feelings of isolation and loneliness.
  5. Enables individuals to stay connected to local, national, and world news, often with unmatched accessibility to this information.
  6. Allows differently-abled people to shop, pay bills, etc., in an accessible, safe space (home).
  7. 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.

© 2023 Personal Hearing Loss Journal

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

Microaggressions

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Image from https://www.rpharms.com/recognition/inclusion-diversity/microaggressions/disability

Microaggressions. What are they and how do they apply to people with disAbility and chronic conditions?

Meriam-Webster defines microaggression as “: a comment or action that subtly and often unconsciously or unintentionally expresses a prejudiced attitude toward a member of a marginalized group”.

Copied from the image above, I am re-listing some microaggressions here for those who may use screen readers.

  1. Overstepping boundaries, even when well-meant, such as assuming an individual with a disability is incapable or not aware when they need help. E.g. pushing someone in their wheelchair when they have declined help.
  2. “Otherisation” — seeing having a disability as ‘abnormal’ and denying them equal access to life experiences.
  3. Assuming someone with a disability & learning difference is incompetent.
  4. Making a “fuss” about needing to make and accommodate adjustments both in work and social.
  5. Intentionally not extending social invites to avoid making allowances for them, such as choosing a wheelchair friendly place.
  6. Using equipment labeled for someone with adjustment requirements when not required (accessible bathroom stalls, standing in the way of handrails, etc.)
  7. Not believing or accepting someone has a disability or learning difference, particularly if it is non-visible such as neurodivergence, sight or hearing impairment.
  8. Accusing people with a disability and/or accessibility needs of being difficult.
  9. Making assumptions about a person’s skills, abilities, and temperament based on stereotypes. This includes physical as well as mental /academic capacity. E.g. assuming the capacity of someone who is physically disabled.
  10. Not asking input into work or a project a person is involved in; not taking them seriously; and seeing only the disability, not the whole person.
  11. Being made to feel “other”. Neurodivergent people often feel as if they “didn’t get the memo” so ostracizing behaviors can enhance this feeling.
  12. Using a condescending voice to explain.
  13. Being actively ignored and excluded from meetings and group activities.
  14. Eye rolling, sniggering, or mocking someone with a disability.
  15. Not providing additional supports or reasonable adjustments as requested , so individuals are unable to fully participate, including in educational settings.
  16. Insisting people behave in neurotypical ways, e.g. such as maintaining eye contact–considering them to be rude if they don’t.
  17. Not being invited to senior meetings because they might not behave in a neurotypical manner.
  18. Interrupting someone when they are speaking completing their sentences because they’re “being to slow” making their point.
  19. Not understanding the challenges faced by neurodivergent individuals, which can prevent individuals from their best selves in meetings and interviews.
  20. Not greeting someone with a disability, assuming they will not know how to respond or talk to you.

A few of my own that I have experienced: (Add your own in the comments!)

21. Not facing someone who may have hearing loss so that they can read your facial expression, body language, and speech read better.

22. Assuming a person with disability can and should not be promoted because it will be “too much” for them.

23. Openly or secretly criticizing someone with disability when they are very disability focused and disability-minded.

24. Not providing impartial and equitable investigations into discrimination claims.

25. Assuming that providing things like captions, means that the person with communication challenges is now on equal footing with those who hear normally.

26. Not promoting a person with disability because they interview poorly as a result of disability (hearing loss, vision loss, cognitive issues, etc), in spite of a track record of excellence that warrants promotion.

There are other marginalized groups and diversity populations that experience microaggressions as well. I know that even I have at times said or did something that seems prejudicial. We are human and make mistakes. However, especially if a microaggression is identified by the marginalized person, we should take every means necessary to make changes and go forward with “less” prejudice.

One of the more disheartening truths about disability microaggressions, is that often the result of experiencing such can and will cause the individual additional harm. Stress alone can greatly exacerbate symptoms and conditions. I believe this is why so many “give up” following through with pursuing legal investigations. At least, it was true in my own case of disability discrimination.

So what can we do?

Keep doing all you can. After all, that’s all any of us can do.

L. Denise Portis, Ph.D.

© 2023 Personal Hearing Loss Journal

What if… ?

Published on 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.

© 2023 Personal Hearing Loss Journal