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

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New Twist on an Old Fable

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

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

Moral: Necessity is the mother of invention.


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

“Where there’s a will… there’s a way”

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

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

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

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

Need me to get the door?” I asked.

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

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

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

Please Keep in Mind

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

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

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

Don’t feel sorry for us.

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

Where There’s a Will, There’s a Way

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

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

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

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

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

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

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

© Personal Hearing Loss Journal

Denise Portis, Ph.D.

Coming to Terms

Deborah Marcus' blog "Visions of Song"
Deborah Marcus’ blog “Visions of Song”

It is always a treat when guest writers post for “Hearing Elmo”. I never wanted this blog space to be all about “me” and my own issues. Please let me know if YOU would like to write for the site!

Deb has been a friend for so long, I would have to stop and burn calories just to remember the when and where we first connected. I love her like a sister and her presence in my life has been a blessing. Deb writes (click the photo above to visit her blog) and is a photographer as well. As a matter of fact, I re-designed my guest bath around her dragonflies. A loving “welcome back” to my friend, Deb, as she shares some things that many of us with disability, chronic illness, or special challenges deal with on a daily basis. 

Winter
Winter

From the time I was in elementary school, I understood that life is not fair, that it’s not even a question of fairness, and that readjusting one’s perspective is something that must occur for the full expression of the self, time and time again.

Of course I didn’t think of it in quite those terms when I was 6, 8, or 10 years old, but I experienced it. I imagine we all do in one way or another, whether by subtle shifts or dramatic events that leave us no choice but to consider this a reality of being human.

Here are a couple of examples. Each of us has some of our own.

-That moment at the audiology clinic, age 9 or so, where I went every couple of years for a hearing test as there is hearing loss in my family. I heard someone say, looking at the audiogram: there it is, the mild to moderate hearing loss. I didn’t know how to read the graph at that time, but my maternal grandmother was hard of hearing and I understood it from that vantage point. I would be like grandma, hard of hearing. Reading lips. I didn’t understand that I would lose the ability to hear birds singing, or the many nuanced experiences that we take for granted when we are able to hear, but I was able to internally adjust to my reality.

-A different moment, after a terrible event at home. I went out into the yard, in the dark, in winter and lay on the snow-covered grass. I looked up at the clear sky, full of stars, and as my breathing slowed to a normal rhythm, thought how beautiful it would be if I could just fall asleep right there…and never wake up. After a while, I felt something move me. You might call it God. I internalized it as a spirit of some kind. It said to me: No, it’s not your time. Stand up. Go back inside and warm up. Now I understand that as either depression, or self-preservation, or a little of both. I did not mention this to a soul until many years later.

Spring
Spring

In order to move forward after life-changing events, one has to be able to reckon with the forces within and without. I was motivated in the first example away from despair. As I looked towards my grandmother who could not hear, though it was beyond me at that age to recognize how small her world had become by that point in my life, I could see that she had her faculties and was loved by many in her circle, and so I had expectations of adjustment but did not despair. In the second example, in despair, I can’t say it was all me figuring out what to do, but had an experience that told me we can seek and find the resources to continue on.

Summer
Summer

Fast forwarding to today, I have experienced a number of life-changing events, some of which constitute frank disability. I have had orthopedic issues since middle school. I am now completely deaf without my cochlear implants. I am a survivor of mother-daughter sexual abuse, and with that came some episodes of physical and emotional abuse. I’ve experienced periodic vertigo since the occurrence of one of those physical episodes, when my mother, in a fit of rage I’ve never been able to parse out, pushed my 16 year old self backwards down a long flight of stairs. I only recall coming to at the bottom of the stairs, the crawl back up, the screaming that came from my mother’s throat that suggested that I was somehow at fault for my “accident”. I have struggled with (undiagnosed) depression for years. I’ve coped with physical pain for most of my life, with degrees of it varying over time. The most extreme of these pain issues resides in my facial nerve, with a diagnosis of trigeminal neuralgia.

Autumn... reflections
Autumn… reflections

Throughout each of my 53 years, I have found the will to continue on. Recently, I had to consider the prospect of foot surgery. Wanting to avoid it at all costs, I explored physical therapy, at the encouragement of an acupuncturist I see from time to time. My hope is still to either avoid surgery altogether or be better equipped to manage if I did. During my initial evaluation, I shared my vestibular/balance history. I had recently had the courage to tell my primary doctor about the trauma when I was 16, the vertigo, the neck pain, and now the increasing balance issues. It became clear at the first assessment that my vestibular system is in extremely poor shape. The physical therapist wrote “fell like a tree” in the assessment notes. I worked extremely hard both in therapy and on home exercises from September into December. While we made some modest gains on the foot issues, there was no progress on my balance issues. In December, my PT and I had a heart to heart. It is pretty clear that as a result of multiple factors, my vestibular system is not going to get better. I can continue to work on the vestibular exercises in effort to slow the progression, but that’s probably it. While all this was happening, my primary suggested I try a small dose of medication for the chronic depression, which I was forced to acknowledge, for the sake of self-preservation. We are working on finding a medication I can tolerate and which is a help to me.

It’s strange territory to be in this place where I feel more than a little bit at a loss. Where did my seemingly inherent sense of “carry on!” go? I’ve made adjustments all through my life, and did good works, and have had wonderful relationships and ending relationships and work and play and the same constellation of things that everyone else experiences in their own fashion. I wonder, though, who am I now? I have had moments of despair, when the thought that going to sleep and never waking up would serve me and everyone I know well. The only reason I feel strong enough to write this out in a semi-coherent fashion now is because I have begun to hear that spirit voice again, that says: No, it’s not your time. Stand up. Go back inside and warm up. To that end, I’m focusing on what my new life will look like, how to take the best care of myself possible, and how I can possibly continue to be source of support to others.

Stay warm, friends.

Deborah Marcus

Visions of Song blog: CLICK HERE

 

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.

IMG_2843 IMG_2835

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

 

Hearing Loss Valentines

hloss valentines

I’m reaching out on behalf of Cochlear Americas. We created Valentine’s Day cards for those in the hearing loss community to share with whomever they HEARt this Valentine’s Day. If you think the Hearing Elmo community would be interested in these cards, please feel free to share them!
How to access the Valentine cards: 
  • We have four Valentine’s Day cards that you can download, print, cut out and distribute directly from our Hearing Connections blog.
  • We will also be sharing the cards on our FacebookTwitter and LinkedIn channels. Keep an eye out for them to appear and share them digitally if you’d like.
Ways your community can use the Valentine cards: 
  • Print and distribute them in person or by mail with friends, family or colleagues.
  • Share them on your social channels.
  • If you have children, print for your child to distribute during their school Valentine’s Day party.

Denise Portis

Hearing Elmo

Making the Difference – in ONE

calf feeding

I grew up on a working farm. I’ve learned to add that “working” part, for after I moved to the “big city” I discovered that many people have what is called a “hobby farm”. I loved growing up on a farm, but can’t say I’ve ever considered it a HOBBY.

Growing up, I had a lot of responsibilities that included various kinds of farm work. Probably one of my least favorite chores was baling alfalfa; in part, because I was highly allergic! Sneeze at the wrong time, and the bale of alfalfa was suddenly on top of you, or worse… several piled up and rolling off the flatbed truck. I can’t tell you how many times my aggravated Daddy had to stop the truck, wait for my siblings and I to reload some scattered bales… all because I sneezed at the wrong time.

One of my favorite responsibilities was feeding the baby calves. We always had some wee calves that required bucket feeding. The picture shown is not my own calf, but it was the same kind of bucket. Now-a-days, buckets are plastic or are big “bottle-shaped thingie-majiggers”. We had these old-fashioned (but serviceable) metal buckets. In the beginning, I hated the chore. If the school bus comes at 7:40, that means all chores had to be done early. I’m talkin’ cock-a-doodle-doo early. I wasn’t a 5 o’clock in the morning kind of kid, and I’m still not that kind of adult.

We used powdered formula for the calves. Some were orphans, some were adopted from feed lots, and some were separated on purpose from mama if the calf was unlucky enough to be born to one of our milkers. The powdered formula smelled horrible. Ugh. We mixed it with hot, HOT water. In this way, by the time we carried the buckets to the barn, it was still warm for the calves. The calves drooled all over the place. Occasionally, they would head-butt the bucket (like they would their mama) and if you weren’t prepared (or had fallen asleep against the fence post), formula went everywhere and you started all over.

I’m not fastidious. I can stand dirt under my fingernails and getting my hands messy. However, returning to the house every morning covered in calf drool and formula, had me grumbling and complaining big time. My dad would let me whine and complain. He is a very quiet guy. When he did open his mouth to talk, we all practically stood in awe to see what he was going to say. It was always rather profound. One morning after listening to me bellyache, he said, “Denise, have you ever thought about how important you are to that calf?”

Well… Dad didn’t expect an answer. He had already walked off. I stood there digesting that though and I must have thought about it the rest of the day. I think I must have thought about it all the way up ’til I went to bed that night. The next morning, I awoke with a new attitude about those calves.

They needed me. They were pretty low on the “totem pole” as far as value on the farm. However, if I didn’t feed them, they were goners. For all intensive purposes, I was their mama. That morning I noticed as I walked out to the barn that the calves were all standing by the fence waiting… for ME. Likely, they always had! However, I was so busy grumblin’ I never noticed. As I set the buckets on the fence to give them one more good stir before turning them around for the hungry bovines, I noticed the calves were mooing softly and actually wagging their tails. They were expectant. They knew they needed me and that I could provide what they needed. I remember throwing my legs up and over the top rail so that I could sit and put my weight on the bucket guards to keep them from being butted to the ground. Now that my attitude was different I was seeing these calves in a whole new light. So… I started singing.

That’s right. I sang to the calves. Over the following eight or nine years, calves heard me bellowing out every 80’s tune I could think of and even some 70’s tunes as well. I sang, and I sang, and I sang. My entire outlook and attitude towards these calves had completely changed because I discovered they needed ME. At this point, you are probably wondering, nice story… but what exactly are you trying to say?

PIVOTAL MOMENTS

I truly believe that it was at that point I realized, even someone like me can make a difference. I was just a young farm girl. I had few aspirations. Yet, even *I* could make a difference – perhaps in the life of something rather lowly (and drooly), but I could still make a difference.

Do you know I believe some of my panic at 25-years-old, with the realization my issues were progressive, was that I was afraid I would no longer be able to make a difference? I’ve been forced to adapt to increasingly progressive “differently-abledness”. However, those early lessons made an impact. A “nobody”, farm girl could make a difference to a calf. Surely, a differently-abled woman could still find a way to make a difference!

Don’t get me wrong… I’m no super hero. As a matter of fact, I cringe a little when someone at work stops me and tells me “You inspire me!” I’m thinkin’, “Girl? I’m no inspiration. I’m ordinary. I’m just me. I didn’t sign up to only hear bionically, and learn to walk a semi-straight line with a vestibular disorder!” Everything about my life is rather ordinary. Sure, I have challenges, but the fact of the matter is, WE ALL DO.

I wake up each morning thinking, “I want to make a difference for ONE, today” (well… and I’m also singing 80’s tunes – some habits die hard). Perhaps this is what “trips up” folks who live with disability or chronic illness. They may have convinced themselves they have to do something rather profound to make a difference. You don’t. You can make a difference with something as ordinary as smiling. Kraut & Johnston (1979) wrote a fascinating article on research they did on unspoken messages and their impact. Smiling is actually an emotion-filled message that you send – perhaps to someone who needs that message.

Guinness (2003) wrote a book, “The Call”. I believe we each have strong, in-born desire to have a purpose. Sometimes, we mistakenly believe we are too broken, too busy, too much of a “farm girl” to have a purpose; to make a difference.

Wrong.

For some reason, folks think they have to impact the world to make a difference. Making a difference, MAKES A DIFFERENCE, even in the life of ONE. Aknin et al., (2013) recently completed some fascinating research pointing to how much good it does an individual to make a difference in the life of one person or in one way. There are physical, psychological, and emotional benefits to making a difference… also called prosocial spending (Aknin et al., 2013). You may feel you have limitations, but having the opportunity and capability of making a difference is not one of them.

This has completely changed my outlook on my own life. I can make a difference.

… and so can you.

I love the lyrics to this song (hey! I warned you earlier I’m an 80’s tunes kind of person). The Oak Ridge Boys got this one right:

Did I Make a Difference?

I’m caught up in the push and shove
The daily grind, burning time, spinning wheels
I wonder what I’m doing here
Day to day, year to year, standing still

Somewhere there’s a teacher with a heart that never quits
Staying after school to help some inner city kids
A mother who’s a volunteer, a soldier in the fight
I can’t help but ask myself when I lay down at night

Did I make a difference in somebody’s life?
What hurts did I heal? What wrongs did I right?
Did I raise my voice in defense of the truth?
Did I lend my hand to the destitute?
When my race is run, when my song is sung
Will I have to wonder, did I make a difference?
Did I make a difference?

I’ve been working hard to make a living
And forgetting what true living is
Taking more than giving, something’s missing
Lord, how long can I go on like this?
There’s a lonely old man down the street
And I should be ashamed
I’ve never been to see him, I don’t even know his name
There’s kids without their supper in my own neighborhood
Will I look back someday and say that I did all I could?

Did I make a difference in somebody’s life?
What hurts did I heal? What wrongs did I right?
Did I raise my voice in defense of the truth?
Did I lend my hand to the destitute?
When my race is run, when my song is sung
Will I have to wonder, did I make a difference?
Did I make a difference?

When my race is run, when my song is sung
Will I have to wonder, did I make a difference?
Did I make a difference?
When my race is run, when my song is sung
Will I have to wonder, did I make a difference?
Did I make a difference? Did I make a difference?

———–

Denise Portis

© 2015 Personal Hearing Loss Journal

Aknin, L. B., Dunn, E. W., Whillans, A. V., Grant, A. M., & Norton, M. I. (2013). Making a difference matters: Impact unlocks the emotional benefits of prosocial spending. Journal of Economic Behavior & Organization 88, (1), 90-95.

Kraut, R. E., & Johnston, R. E. (1979). Social and emotional messages of smiling: An ethological approach. Journal Of Personality And Social Psychology37(9), 1539-1553. doi:10.1037/0022-3514.37.9.1539