What do you care, right?

Oh I care, believe me…

#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

Deaf Ears Hearing in the Middle of the Night

Deaf Ears Hearing in the Middle of the Night

I gasp and sit straight up in bed.

What is that noise? 

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

……………………………..

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

What is that noise?

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

…………………………….

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

What is that noise?

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

…………………………….

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

What is that noise?

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

…………………………….

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

What is that noise?

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

…………………………….

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

What is that noise?

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

…………………………….

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

Was THAT the noise?

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

Sorry? Wait a minute! No I’m NOT!

Words matter. As I have aged (and hopefully matured) the discovery of what we say and how we say it has evolved as I have learned to communicate with focused intent.

As a person with hearing loss, a typical response for me after you first say something ranges from:

Sorry? (or I’m sorry)

Pardon?

HUH?

My mama raised me to be polite I suppose. However, I have lived with acquired disability nearly twice as long as I did with “normal” hearing and “normal” balance. Even people with a normal range of hearing for their age may respond with an “I’m sorry? What was that?” if they miss something in an overly noisy room. Because I am more likely to miss what was said or miss the context and fully understand what was said, I am more likely to use these phrases.

After some length of time living with these ingrained habitual responses, I realized how it was actually making me FEEL. I’m all about good manners. I noticed that I was having to say, “I’m sorry?” so much that I was a really, REALLY sorry individual. I also realized that I had nothing to apologize for when I said it. More importantly, it served no purpose. Heck, I give workshops on how to convey to someone you didn’t hear what they were saying.

It is best to educate and advocate. Don’t complain or apologize. I am best served by responding in one of the following ways:

“I did not hear most of that because of the background noise in here. Would you repeat that please?” (Maybe even suggest a quieter location)

“I heard you say, “ya-da yada”, but missed the last part”. (Obviously we can fill in the yada with what you actually heard).

Beware of your volume. Be careful not to “guess”. After all, you are trying to educate folks that pieces of their sentence was lost but not EVERYTHING they said was.

My husband once said to me in a crowded room, “I will see you later. Plan on dinner at six?”

I heard, “… see… later. Dinner and sex?”

YES PLEASE.

When you become more proactive about what you heard and did not hear, you can also suggest synonyms. When my kids were in elementary school, they would joke that they knew more synonyms than anyone else. Having been to all of those hearing loss conferences (thanks HLAA) they learned that if your loved one was having trouble understanding all you said, throw out some different key words. It may end up being a consonant blend they have no trouble hearing at all!

“Grandma called this morning and asked you to call back when you can”.

“What?”

“I spoke to Grandma this morning. Be sure to call her back tonight!”

I hope you do not misunderstand the purpose of this post. There is nothing wrong with being polite. There is everything right about letting someone know you did not hear them.

– – – – – – – – –

Let me quickly chase a rabbit here and insert that faking that you can hear is much different than faking you are listening. The latter may result in hurt feelings or a punch in the arm. To fake that you heard someone has heftier consequences. 

– – – – – – – – – –

What matters is letting them know you did not hear them in the right way. Our age-old habits of apologizing do not fix the problem. You are more likely to encounter people who are tired of repeating something, or start to do so LOUDLY. This only distorts the words making it even harder to understand.

By suggesting a quieter place to go, explaining you may do better with a different choice of words that can be understood in context better, or repeating the part you DID hear so that they don’t have to repeat everything can go a long way to better communication.

Depending on the environment, some other great options to take the place of constantly apologizing are:

  1. If in the car, suggest turning the radio and/or music off so that your ears do not have to compete with their voice.
  2. Ask to step into a building so the acoustics assist you in catching more of what they said to you. Outside, voices can D   r…      i  f…    t…   a way…
  3. If you know them well enough, ask them to ditch the gum 🙂
  4. Make sure by word and deed that the problem is not something you should apologize for as no one did anything wrong. They didn’t either – so work on making sure they do not think you are criticizing them.
  5. Do not let others say, I will tell you later. They won’t. If you hear this, let them know you will be following up by email to discover what they said because it is important to you.
  6. If you see a conversation going sideways and frustration is evident on the face on the person you are speaking to, ask for an email. Explain you simply cannot hear them in this environment and that you ask they follow-up with a text or an email. Assure them you want to respond as needed.

L. Denise Portis, Ph.D.

©2020 Personal Hearing Loss Journal

Overcoming It

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.

© 2018 Personal Hearing Loss Journal

Let Sleeping Dogs Lie

My sweet Sheprador
My sweet Sheprador

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

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

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

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

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

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

Denise Portis

© 2016 Personal Hearing Loss Journal

 

 

Feeling Like a Weirdo

Always thrilled to have a guest writer here at Hearing Elmo. If you live with chronic illness or a visible/invisible disability and love to write, I invite you to post in this venue to share your story.

I don’t remember when Deb and I first met. I feel like I’ve known her “forever”.  We just “clicked” early on and she is now one of my dearest friends. Deb has taught me so much just by example. We have a lot in common, but are also different in many fun ways. C.S. Lewis said, “Friendship is born at that moment when one person says to another, ‘What! You too? I thought I was the only one!” I’m thrilled to share a post from her and hope you will check out her photography site as well. Visions of Song

apropos of nothing

I was a little bit grumpy when I went into work this morning. Just your ordinary kind of grumpy, at least I think that’s what it was at the time. We had a staff meeting scheduled for 9:30. I was walking down a hall at 9, about to get some water from the kitchen, when I saw a teammate who said “we’re meeting in the first floor conference room”. Thinking I’d lost track of time, I said, doesn’t it start at 9:30? He shrugged and said “sometimes it’s different”. Later, I found out what he meant, but at that moment I was walking in the wrong direction, sans water, notepad, calendar, and orientation. I rushed to grab my things and when I walked in, everyone was seated. Now, let me mention that I am relatively new on this job, and the folks are really nice and teach me a lot about what goes on there. Today, though, I was already grumpy, and now I was LATE (and still didn’t have anything to drink because I’d forgotten to fill up in my haste). I sat at a place around the large, squared set up of tables, strategic for what I knew would be best for me, able to see the faces of everyone should I have trouble hearing anyone. My supervisor said “sit where there are papers” meaning the agenda and other materials. Well, the seats available were not strategic for me, and I was already feeling grumpy and it was obvious that I was late and slightly holding things up. I said “everyone forgets that I am hard of hearing and need to sit where I can best follow what’s going on. So, if it’s alright by you, I’m just going to get these papers and sit over here”, walking to where I intended to sit and feeling quite determined about that fact. Meanwhile, supervisor gestured as if to say “come sit by me”. I did not want to explain why that would not be ideal, and she was trying to be helpful, but it wasn’t helpful, and by the way I was feeling more and more like a grump at this point. Further, I was feeling like a weirdo. An oddball. Someone who needs something special. I deeply dislike standing out, or seeming like I need something unusual. Everyone else was sitting wherever they wanted to, and I had to have this mini-scene because, as I stated rather unprofessionally, no one seems to remember that I’m deaf and use cochlear implants to hear. At the risk of sounding like I’m bragging, among cochlear implant users, I am a super high performer. I am pleased and even thrilled by what I am able to do hearing-wise. Then I get in a typical work situation, and suddenly: I’m a weirdo. It does not help that I am also something of an introvert, friendly, social, smart, funny, but I need tons of time to process and recharge. I really don’t think it has much to do with my hearing, either, as I had relatively normal hearing for the first 10, 12 years of life but was always this way. So I seem a little odd compared to the norm in terms of social interaction to begin with, and then there’s the hearing loss and the special needs.

Grumble.

You know? Most of the time, really and truly most of the time, I am OK with being deaf and hearing again with cochlear implants. I am glad to educate and inform and certainly to advocate for myself (although I have work to do in this regard, and tend to be much better at advocating for others). Today, I wasn’t in the mood. I finally got something to drink, and good thing, because I ended up sitting through three meetings before the day was done.

beverage at Davids Diner

It did give me time to forgive myself, for feeling badly, for not feeling comfortable about asking for what I needed. I was also glad that I have become that person who knows what she needs and while the sending of the message might be a challenge at times, I can say no, I don’t need that, I need another thing, and know how to pursue what enables me to perform and participate at work. I walked through my apartment door at the end of the day thinking I either needed a drink (the after-five kind), or a good cry. I remembered I had some delicious food to make for supper, and having eaten and cleaned up, I sat and wrote this down. I don’t feel so grumpy anymore.

Deborah is a bilateral cochlear implant recipient. She experienced familial progressive hearing loss, which presented at age 10. Her first ear was implanted in 2005, the second ear in 2008. A native New Yorker, she presently resides in the central Piedmont of North Carolina. She is involved with HLA-NC, and is passionate about issues related to substance abuse, addiction, and mental health, serving as coalition coordinator for Project Lazarus of Randolph. In her spare time she enjoys traveling as much as possible, and can frequently be found wandering the backroads and practicing nature photography in the nearby Uwharrie National Forest.

My iPhone Lasts Longer Than I do

iphone 6+

The other day my iPhone died before I was getting ready for bed. I was a little shocked, because I rarely have it just “die” on me. The new ones have batteries that last much longer – even if you are a frequent user of the device like I am. I stood there with dead phone in hand trying to figure out if I had charged it overnight — the night BEFORE — like I usually do. After hitting <rewind> in my head and backtracking over how my day BEGAN, I realized that I fished my smartphone out of my pocketbook before heading out the door this morning. That means I did not charge it last night. That means my iPhone lasted over 36 FREAKING HOURS! I was impressed. As impressed as I was, I STILL went and hooked it up to the charger. It was dead. It had to be charged.

As I fiddled around with the (stoopid) cord, (made difficult when you lack any kind of pincer grasp in your fingers), I thought, “Wow. My iPhone lasts longer than I do! I could never go 36 hours without being recharged!” And ya know? That made me a little sad.

My next thought was, however, “NOW WHY DOES THAT MAKE ME SAD?

STOP Apologizing

I hate that my default to what is normal for ME, is to feel sad about it or to apologize to myself and others. Why do we do this?

Well according to Wright (1983) and Nosek et al., (2003), people who are differently-abled and chronically ill, default to apologizing and providing unnecessary explanations and dialogue about their condition to smooth the way of acceptance. These same authors point out that this often backfires. We instead bring attention to something others may not even notice. Apologies convey regret over intentional or unintentional offenses or failures. Apologizing for needing a nap, needing to relocate to a quieter room, asking someone for a repeat, or request to stand closer to a wall to keep from toppling, is not something we should REGRET. It is not a failure. It is what it is.

I would argue that falling into the habit of apologizing for our “normal” creates a dangerous pitfall and trap that our disabilities or chronic illness are an undue burden on others. This could lead to becoming preoccupied with how hard you are making life for others. Russell, Turner, and Joiner (2009) found that individuals with disability or chronic illness already have a higher tendency towards suicidal ideation. Apologizing for something we are not responsible for only creates a perfect and toxic breeding ground for suicidal thoughts.

Putnam et al., (2003) explain that true independence and self-determination falls closely on the heels of acceptance… that can only take place when we stop apologizing for our “normal“. I use to apologize a great deal. In spite of using every piece of adaptive equipment I could find and afford, in spite of partnering up with a service dog, and in spite of reading everything I could get my hands on about positive advocacy and independence, I would still apologize for putting someone else out for helping me cope with a situation. I’m trying to do better. For example:

Instead of “I’m sorry. Could I get you to move over to that wall over there so that I may lean against it and have Milo (my service dog) on the left while we speak? I hate to ask you to move, but…

… at which point they would say, “Oh, it’s no problem. Let’s move…” However, my apologizing for having to move infers that I had a choice. Apologizing makes it seem that I regret I am who I am.

I’m trying to learn to say, “I need to move to that wall over there for balance reasons. Let’s move over there and continue our conversation?

… and their response would be, “Sure!

I was in a super crowded common area once in which a colleague was trying to talk to me about something important. Not only could I not hear her, my balance was REALLY off and I stood there wobbling like a buoy. There were no walls available, and I was really starting to feel ill. I said, “I am having difficulty in this listening environment. Let me follow up with an email because what you are saying is really important to me“. They were pleased to do so and I think grateful enough that I cared to communicate WELL with them. I had to bite my tongue to keep from saying, “I’m really sorry about this…” I had nothing to feel sorry about so an apology would only have infused my confidence with negativity.

Yes, But FATIGUE is just EMBARRASSING

What if your (seemingly) undue burden on others is simply that you cannot keep up? Perhaps you need a mid-day nap to finish the day strong. Yorkston et al., (2010) found that differently-abled individuals USUALLY have accompanying pain, fatigue, or BOTH. We tend to want to apologize for this. We shouldn’t.

I have a friend with chronic (and sometimes debilitating) ankle pain. Mid-day she goes to her office and puts her feet up. If she has to go to a meeting, she unapologetically claims an additional chair so that she can rest her feet. I walked into a meeting once and saw she had her feet up on an adjacent chair. Someone walked by and said, “Are you saving that for someone?” She smiled, pointed to her feet, and said, “No. Bad ankles!” The person didn’t question her. They didn’t shoot her a pitying look. They also didn’t steal her footrest. It was a smooth and succinct explanation for her claiming an additional chair.

Several weeks later I ran into her and talked to her about what I observed. She said, “I use to apologize for having to put my feet up. But then I thought, ‘WHY am I APOLOGIZING?’ I knew that only made ME feel badly. I decided then and there to stop being sorry for having tired feet“.

If I’m at work during a meal time and the weather is nice, I often go out to my car. I load my dog up, crank the air or heat (depending on the season), turn my cochlear implant and hearing aid off, and eat my meal in the quiet. Understanding my propensity for hearing fatigue, means I take time to unplug when needed. I need to recharge. I’m not anti-social (ok… well, not VERY) and I’m perfectly capable of going to the staff lounge or faculty dining room if I want to do so. Taking a mid-day recharge in the quiet enables me to complete my day STRONG… and unapologetic. Isn’t that what independence is about?

My iPhone may hold a charge longer than I do, but I take responsibility for recharging my own battery. Do what you need to do to recharge.

Need a nap? Take one.

Need some tylenol and a twenty minute break? Take them.

Need a “mental health day”? Take it.

Need a vacation? Take one.

Need a coffee break? Take it.

… and don’t apologize.

Denise Portis

© 2016 Personal Hearing Loss Journal

Nosek, M. A., Hughes, R. B., Swedlund, N., Taylor, H. B., & Swank, B. (2003). Self-esttem and women with disabilities. Social Science and Medicine, 56(8), 1737-1747.

Putnam, M., Geenen, S., Powers, L., Saxton, M., Finney, S., & Dautel, P. (2003). Health and Wellness: People with Disabilities Discuss Barriers and Facilitators to Well Being. Journal Of Rehabilitation69(1), 37.

Russell, D., Turner, R. J., & Joiner, T. E. (2009). Physical disability and suicidal ideation: a community-based study of risk/protective factors for suicidal thoughts. Suicide & Life-Threatening Behavior39(4), 440-451. doi:10.1521/suli.2009.39.4.440

Wright, Beatrice A. , (1983). Physical disability – a psychosocial approach (2nd ed.). , (pp. 116-156). New York, NY, US: HarperCollins Publishers

 

Yorkston, K. M., Johnson, K., Boesflug, E., Skala, J., & Amtmann, D. (2010). Communicating about the experience of pain and fatigue in disability. Quality Of Life Research: An International Journal Of Quality Of Life Aspects Of Treatment, Care And Rehabilitation19(2), 243-251. doi:10.1007/s11136-009-9572-1

 

 

Pretzels Baby…

Snyder's of Hanover Pretzels commercial 2016
Snyder’s of Hanover Pretzels commercial 2016

We do not have the opportunity to watch much live television in my house. My husband and I tape our favorite shows and then watch them together the couple of nights a week we are both home in the evenings. It worked out this summer, that I did not have a class to teach during the first session of the summer semester. The timing is terrific since I completed my doctoral coursework, and have now started the dissertation. There is a great deal of reading and writing involved at the beginning, so not having a class to teach until 7/1 is a “plus”.

In spite of all the groundwork needed to start the dissertation right, I have had some down time as well. Trying to catch up on my HGTV favorites before I’m back to teaching, I have been surprised by new commercials as Terry nor I watch commercials. The new Synder’s of Hanover pretzel commercial is unique. Well… it’s kind of scary too, but I’ll get to that.

Laura Wernette is the new “smoky-voiced pitchwoman”. I think she’s just scary. She has this intense, no-nonsense stare that reminds me of a grown-up Wednesday Addams.

Christina Ricci in Addams Family Values

I think what bothers me about the commercial (besides the fact they are not captioned – ahem) is that the woman in the advertisement has a facial expression that says one thing (I want to kill and maim you) while her voice is saying another (Synder’s pretzels are the best). From things I have read, the advertisement is popular and folks think the pretzel woman is pretty funny. I cannot justify what I see in her face to what I hear coming out of her mouth. I spend far too long thinking about it, believe me! It made me think about all the times I misunderstand someone’s mood when I choose to only look at their face.

My poor husband has a perpetual eyebrow grimace.

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Even when he is smiling and relaxed, his eyes seem almost angry-looking if one didn’t know him better. When he speaks, he has this laid-back, southern charm and friendliness that (in my opinion) doesn’t “jive” with his facial expression. I tease him about it all the time. (Aren’t I sweet?)

I think one of the things that is most difficult for someone new to hearing loss, is learning to look at the whole picture before jumping to conclusions. It can be hard to try to make sense of what you can actually hear, and match it up with what you think you are seeing on a person’s face or in their body language. (It’s impossible to do when you know and love someone who is fluent is the language of SARCASM, and the voice and pitch deliberately DO NOT match what is on the person’s face).

My best practice is to simply to ask for clarification when needed. If someone’s voice (as heard with my bionic ear, with some limitations on inflection, pitch, and tone) does not match up with what I see on the person’s face, I just ASK.

“Could you clarify for me what you are trying to say? You seem upset, but I don’t want to jump to conclusions”

“You seem really calm, but you practically growled that out to me. Is everything OK?”

I was at a residency this past March and the weather was beautiful. I spent every spare moment outside walking Milo (along with everyone else on break in between workshops). One afternoon, I stopped to answer some questions about Milo to a group of ladies I had been with in several workshops. I noticed the three women all scowling. I tried to pay attention to what they were saying, and occasionally they laughed as well. I had trouble concentrating on their WORDS because their faces were scowling – and looked angry. After a few minutes trying to figure out why their facial expressions were not matching what I was hearing, I realized the sun was in their eyes! With that epiphany, I quickly changed my body position with the comment… “Here. Let me move so the sun isn’t in y’all’s eyes”.

I could have silently freaked out wondering what in the world their problem was. It took me a few minutes, but I finally realized why I was having trouble understanding their mood when their faces were all sun-squinty angry. Small wonder that hearing loss is considered a communication disorder! Especially if you have an acquired hearing loss, learning to communicate without one of the major cues (hearing), can be difficult.

My proximity to Johns Hopkins University Hospital, allows me to mentor folks who are seeking cochlear implantation to restore hearing. One of the questions I am always asked during these meetings is, “What has been the hardest thing for YOU about acquiring hearing loss later in life?” I’m guessing the frequency of the question points to the desire most people have to see similarities in their own struggles. When I explain that having to ask for clarification was a necessary, but difficult thing to learn to do, the people I am meeting with seem so relieved. Some even say, “Oh gosh, it is so good to hear someone else say that! Does it ever get easier?”

It does. That always seems to give them some hope as well.

You are still going to have frustrating moments of confusion. I am 11 years post-op and I believe “hear again” with some level of confidence. I still make mistakes. I may misinterpret tone and intentions, or I may not catch that there has been a complete subject change in the conversation (something I’m rather famous for, if I do say so myself!). As with any acquired disability or life change, in time and with lots of practice, YOU WILL ADAPT. Part of that adaptation will be in recognizing that at times you are going to blow it, but it does not de-rail all the progress you’ve made to date. We can be extremely hard on ourselves! Everyone makes mistakes – even people without acquired disability or challenges.

Denise Portis

© 2016 Personal Hearing Loss Journal

 

When “LIFE” Happens and Your Glass is Half-Full

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One frustration that I often hear from Hearing Elmo readers is that living with a disABILITY or chronic illness is “manageable” if only LIFE itself were a little easier. However, the old adage is true… “Life is hard“. It just is.

I take an unconventional interpretation of the “Glass Half Full” expression. I realize the original meaning is — Are you an optimist or a pessimist? I look at this analogy in a similar way that the “The Spoon Theory” describes energy levels, daily quotas of tasks, etc. For some of us, our glass is never completely full. I wake up first thing in the morning after a good night’s rest, and my glass is half full. Don’t get me wrong… I’m in a good mood. As a matter of fact, I’m one of those annoying “morning people“. I grin ear-to-ear, greet the dogs and take them out, fix my coffee, and eagerly open my calendar to see what the day holds.

Because I have had a hearing loss and Meniere’s disease for over 25 years now, I have learned to manage my time very carefully. I work hard to not “bite off more than I can chew“. The great thing about being an adjunct professor at a community college, I can stretch my 3-4 classes a semester out over the day and week so that I have “down time” for office hours or simply chill time in between classes. I am involved in a number of community service and social justice issues, but I work hard to make sure monthly meetings do not interfere with my “regular scheduled programming” (a.k.a. my LIFE).

Have you noticed, however, that just because you have a disABILITY or chronic illness, LIFE and its occasional sucker punches, still occur? We don’t get special treatment. Just because our glass starts out at the beginning of the day — HALF FULL — doesn’t mean that LIFE and the normal crap that happens within it, will not happen to us as well.

You are going to catch the flu.

You are going to have unexpected car expenses.

Someone is going to hurt your feelings.

You will be treated unfairly.

It is going to rain (and if you live where I do – it will rain a lot).

Your dog is going to be sneaky and eat grass and then surprise you with a present around 2 AM.

You may experience a divorce.

You may become estranged from an adult child or (once) close friend.

You will be accused of something you did not do.

You may be treated with disdain and anger as you navigate your “normal” in a world that does not view you as such.

A doctor is not going to listen to you.

A spouse or significant other is going to get frustrated with you – as if you can change your “normal”.

Your alarm is going to go off and you will want to hurl it through the window.

You will accidentally burn supper.

You are going to trip (and if you have Meniere’s – often!)

You will be misunderstood.

You will lose people you care about and will grieve.

Grief

Last week, my precious father-in-law passed away. My husband and children went to North Carolina and thankfully arrived before he was gone. I stayed home to take care of pets, cover classes for my husband, and “hold down the fort”. Can I just say I hate,  “holding down the fort”?

My family members are home now, and I am grateful I will have the opportunity to attend my father-in-law’s Celebration of Life later this summer.

I am running on EMPTY. This is final exam week and the extra stress that comes with grief and worry for my loved ones has taken a toll. You see… LIFE doesn’t pull any punches. Just because you have a disABILITY or chronic illness, you will still experience the normal things in LIFE that every person does. Losing people we care about is part of LIFE. It sucks. It hurts. It is hard. For those of us with a glass that starts “half full”, it may mean we need to take care to – TAKE CARE.

I normally go to bed between 9-10 PM. This past week I have made an effort to retire between 8-9 PM. We’ve had an excess of rainy weather which causes my balance to really be a trial for me. I am taking extra measures to make sure I change elevations carefully (stairs or bending) and am giving my service dog a serious work-out with various skilled tasks that I can do when my balance is not as wobbly. I’m trying to eat healthy, balanced meals.

Experiencing grief is a normal part of life. It cannot be avoided, and we cannot wish it away. If disABILITY or chronic illness is a new normal for you, I encourage you to prepare in advance for LIFE. We are not granted special privileges just because we have special challenges. So my advice is to do what you can to have a plan in place for when LIFE happens. The plan may include steps to take extra care of yourself. It may mean you make that phone call or send that email to someone you know you can dump on safely and wail or whine to your heart’s content. You may want to make an appointment with a counselor (so have one in advance on standby in the event you need an objective listening ear).

The Benefits

I learned something important over the last week. If I have prepared – as best I can – to absorb life’s normal sucker punches, and take steps to function in spite of a half-full glass, I can still BE THERE for those I care about.

I am not so energy-depleted that I fail to recognize the needs of others. I can support (as best I can) those who are grieving. Because I’m getting extra rest, I can think of small (seemingly) unimportant things that can make a difference in the life of my grieving husband. Like… making Cheeseburger Hamburger Helper for supper (something I cannot even eat but is his major comfort food). I can take on some extra chores around the house to give him the opportunity to have some extra time to grieve either openly or privately. I can be a listening ear (difficult but doable when you have a hearing loss). These simple things would be virtually impossible if I didn’t have a plan.

I am not so naive to believe that having a plan will mean you never have anything take you by surprise. LIFE is really good at surprises – some good and some bad. You cannot prepare and plan for every surprise. I hate to be a downer and fess up that at times I’m just DONE. For whatever reason, I allow hopelessness and despair to rule and reign in my heart and mind. For me, it helps to acknowledge that I’m at the end of myself and need help. It may mean seeking spiritual renewal. I may need to overhaul my schedule. I may need to just experience the YUCK. Sometimes all one can do is wade through and survive. The sun really DOES come out tomorrow. (… and thankfully? my weather forecast for tomorrow really does include SUN).

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Denise Portis

© 2016 Personal Hearing Loss Journal

Use Your Words

use your words

Not too long ago, I stood in the kitchen with a piece of my kitchen cookware, and dramatically wiggled the (seemingly constant) loose handle.

“Hey, honey,” addressing my husband, “hand me the thingie-majig out of the… (I gestured wildly towards the drawer)… the… the… THINGIE!”

My husband turned to face me and raised his left eyebrow. It was only the left one. You know… the one he raises when I’ve said something truly ridiculous and he’s trying to make a point?

… with an eyebrow? Yeah. That one.

I continued to gesture holding the slightly, heavy pan and sputtered and fumed, not daring to repeat my request, only adding a bit of a head flick towards the… the… THINGIE.

At this point my husband’s raised eyebrow lowered. Instead both eyes grew wide with alarm. Both eyes. You know… the ones he widens in horror when he realizes I truly expect him to read my mind and decipher both thingie-majig and thingie?

“Denise.” (When he pauses like that not only do I know I’m in for a mini-lecture, but it also means it may be deserved).

“You canNOT expect me to actually know what you mean. We’ve been married a long time, but I know thingie-majig, thingie, whatcha-ma-callit, and doo-hickey are interchangeable, obscure references to whatever happens to be going through your brain at the time!”

Do you know I tried to argue with him?

“Terry.” (Cuz, what’s good for the goose is good for the gander).

“I’m holding a pan. I’m jiggling the loose handle. I need to use this pan. The handle is loose. I need a screwdriver. The “thingie-majig” is a screwdriver, of COURSE” (I sighed super loud for a little dramatic effect and continued). “I gestured towards the junk drawer with my eyes, head, and elbow. The drawer is the “thingie”. Now who wouldn’t KNOW THAT?”

His eyes lost their incredulous look.  It was like watching a slideshow of emotions flick over his face.

First anger. (“Is she SERIOUS?”)

Next came a sad effort at stifling his laughter.

Then that lightbulb look. I love this look. It’s a slow-simmer realization that darn it. “Darn it, she’s right! That kinda made SENSE!”

He scratched his head and bent to collect the screwdriver from the bottom junk drawer. “It sucks that what you said made sense”.

I demurely accepted the screwdriver and sweetly…

Kept.

My.

Mouth.

Shut.

… because it didn’t make sense. I didn’t use words! Well, I did… but they weren’t real words. How can I call that communicating effectively?

When We Don’t Use Our Words

When you’ve lived with a chronic illness or disability long enough, the vocabulary associated with it becomes second nature to you. However, it doesn’t become second nature to others. You know all the medical terms and acronyms associated with your “new normal”. You shorten things and abbreviate information with people who really do not completely understand what you are trying to convey.

So… use your words.

  1. Use specifics.

Don’t say, “I can’t hear well”. Instead be specific and offer an alternative that may help.

“I can’t hear well in this cavernous room with so much background noise. Can we step out into the hallway to finish this conversation?”

2. Don’t leave out details that actually assist in expressing your need.

Don’t say, “Will you watch the dogs for me while I talk to mom?” Instead provide some more detail so that your request isn’t unreasonable.

“The dogs are wound up and my mom is trying to FaceTime me. Can you take them outside while I talk to her for a few minutes? I will be able to concentrate and hear her better.”

Don’t say, “Oh my gosh I need to leave right now!” Instead provide the details for your hasty departure so that whomever is accompanying you can make polite excuses and follow you in a more polite way.

“Oh my gosh. The ceiling fans in here are low and are moving in the opposite direction of my inner ‘SPIN’. I need to step out right away”. 

3. Avoid acronyms unless they are truly universal.

A.S.A.P.  – – – Yeah. We all know what this means.

BPPV – – – To most with a balance disorder or Meniere’s disease, we understand this to stand for benign paroxysmal positional vertigo. Few others will know what this is. I have even discovered that within disability groups (types), members will often use acronyms that they think are universal to “us” and they are not. For example in a Meniere’s support group I belong to, the members constantly refer to Meniere’s disease as MD. As a volunteer and participant of a service dog organization that includes a number of mobility challenges, MD stands for Muscular Dystrophy for both myself and many others.

I have been surprised how understood and universal the acronym MS is. Many, many people seem to understand it stands for Multiple Sclerosis. Why is that I wonder? (I’m asking for real responses and not rhetorically!)

4. Don’t use cues unless you have practiced them and both you and your “helper” understand the cue. 

If someone has facial hair or talks behind their hand, I’m likely not comfortable stepping into their personal space to hear them better. I will turn to my husband and touch the corner of my mouth. This means, “What’d he say? Repeat for me please?” We’ve used this FOREVER and it works without any hitches for us now.

I have trouble in places that have huge, open areas, or extremely, high ceilings. I may “look” fine. But if I pick up the vest handle on Milo’s equipment and quietly ask for my husband’s arm, he knows I’m about to do a face plant. If my husband isn’t around, I take Milo’s vest handle and head for the nearest wall so that I may continue with whatever I was doing safely, or talking to whomever I was trying to talk to before my “Woah!” I have never had someone argue with me about moving towards a wall. (I’m pretty sure people would rather move than pick me up off the floor).

5. Complete your thought. Use real words.

Just because you know what you are talking about, doesn’t mean you can voice a sentence fragment.

“Put it over…” 

Put it over where? If the other person wasn’t watching, they do not know where you mean for them to put it.

Recently I got up on a step stool (never a good idea) to dust the ceiling fan blades in the dining room. The fan was OFF, so “color me SURPRISED” when I was hit with a sudden bout of vertigo and actually felt my vision tunnel as I struggled to stay conscious.

“Please! Right now!”, I screeched.

Manners didn’t matter. Specifics about the timeframe were irrelevant. I fell. My husband did hear the fall. Well… he HEARD the screech too, but he simply didn’t know what it meant. It was vague. It could have been meant for the dog who just stole my sock for the fourth time and I was demanding it back. (Hey. It’s happened).

He was horrified he didn’t interpret my call for help for him to actually get his butt there immediately. I hit the carpet and the dogs scattered safely out of the way. Since I didn’t injure anything (dogs included) I could laugh as soon as I made it vertical again. “Well geesh. It’s not like I called your name or explained why I needed you! I should have said, ‘Terry! Come quick!’, right?”

As fond as I am of “thingie-majig”, “thingie”, “doo-hickey”, and “whatcha-ma-callit”, they aren’t words. They stand for whatever word is missing from our immediate working vocabulary. They are stand-ins, and we simply cannot expect someone to make sense of them. When it comes to our challenges and self-advocacy, it makes sense to —

Make Sense.

Use your words.

Be specific.

Use necessary details.

One final word of advice though. Sometimes we work SO hard to be good communicators, we may offer a little too much information. If I throw the acronym at ya, of T.M.I., — does that make sense to you?

Too Much Information. We can blow people away with unnecessary details and specifics.

Several weeks ago I ran into one of my students in the hallway and we were headed in the same direction. He opened the door to the stairwell and I leaned over to hit the elevator call button. He said, “Oh here, let me carry that” and reached for my bag assuming I would be able to take the stairs if someone carried my bag.

I said, “Oh no. I can’t take the stairs. Even though I have Milo it will take me ten minutes to make it up one flight of stairs. I’ll be late for class. I just can’t traverse the stairs safely at top speed. I need to wait for the elevator. I don’t always wobble, or have bad balance days, but I never climb or descend stairs safely”. By the time I finished with my over-zealous answer, he was practically cross-eyed.

“TMI?” I sheepishly asked.

“A little… but we’re cool!” he cheerfully responded. He ended up taking the elevator with Milo and I because we were headed to the same class and were discussing something he was passionate about – projective tests (ugh. Hate them!).

So just be careful about being specific and detailed, without killing someone with unnecessary information.

Denise Portis

© 2016 Personal Hearing Loss Journal