Half a Stick of Juicy Fruit Gum

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I miss my grandmother (Vina Jewell Burhenn – Isn’t her name the GREATEST?). As I stopped to think about how to approach my subject for Hearing Elmo this week, I found myself thinking of a very special memory.

It was always a treat to sit with my grandparents in church on Sunday. I think I convinced myself that Grandma would let me get away with more, and my mom and dad were going to make me be “super good”. The pastor was my uncle, Cecil, and so even as a little kid we were expected to be an example to other little kids in the church because we were “kin”. So whenever possible, I always sat with Grandma because I could get away with more – AND… she always gave me a 1/2 stick of Juicy Fruit gum.

Naive kiddo that I was, the truth was that Grandma made me be even more “golden” and because we sat three rows from the front, my parents sitting behind – and to the right of us – could STILL see everything I did.

In the earliest years, I don’t think I ever questioned, “why a HALF stick of Juicy Fruit gum?” I will have to hazard a guess that around  8 or 9 years old, I finally whispered and asked Grandma, “why a HALF stick?”

“When you break it in half, does it let the magic pour out?” I whispered.

Response: Blank Stare

“When you break it in half, is it teaching me to share?” I queried.

Response: Blank Stare

“When you break it in half, is it to make sure I come back for the other half?” I said softly, and with strategic wisdom.

Response: “Denise, I gave you a half a stick because it is ENOUGH”.

Oh. Well gee. I know my child-brain kinda hated the logic of that.

My grandmother would dole out half sticks of Juicy Fruit gum because it was ENOUGH. (Side note: What a shame that it was never Doublemint gum as I would have discovered at an earlier age that I was allergic to spearmint).

It Simply Doesn’t Take MUCh to be ENOUGH

I’m told I take after my grandmother in a lot of ways. Here are just a few FREQUENT reminders from siblings and parents:

  1. I doctor my own ailments to my detriment. And I have Google, which Grandma did not!
  2. I love animals – many times more than people.
  3. I expect justice and fairness.
  4. I will respect you, but by golly you better reciprocate. If you don’t we’re gonna argue!
  5. I can be stubborn.
  6. I don’t mind confrontation. (Likely only recently doing confrontation in the right way).

I think one of the things I get down about the most as a person who is differently-abled with a chronic illness, is that I often worry and fret about my limitations.

I can’t hear on the phone so I am not able to easily call up a friend and ask how they are doing.

I can’t see to drive at night (headlights trigger vertigo), so I cannot go to parties, meet-ups, etc. with friends at night. Most folks do stuff later in the day.

I can’t just drop everything and go to a friend’s rescue. My own limitations require that I determine if I’m physically ABLE. I must ready my canine partner, Milo. I am not a 9-1-1 friend. That grieves me.

You may have limitations that at times, cause you to feel as if what you have to offer is not as valuable. You see how other friends reach out to each other and are discouraged that you cannot offer the same kind of friendship. (If you’ve never read “Spoons” – you should. It eloquently describes life as a differently-abled person). You can only offer a HALF stick of Juicy Fruit gum and you are a little bit pissed off by that.

Do you know what I have learned? A half a stick of Juicy Fruit is enough. I may only be able to touch base with friends via text or Facebook, but taking the time to touch base is STILL appreciated. I may not be able to go to things at night, but when my daytime schedule allows, I can drop off a meal or come by for a quick hug. I cannot be a 9-1-1 friend and be able to just physically show up at an emergency. However, my friends know they can text me or private message me and I will drop EVERYTHING to pray, encourage, and be there for them.

“The purpose of life is not to be happy. It is to be useful, to be honorable, to be compassionate, to have it make some difference that you have lived and lived well.” 
― Ralph Waldo Emerson

We want to make a difference. We want people to see our value. We need to be needed. We all strive for that purpose in different ways.

Maybe you are passionate about social justice issues and do all you are capable of doing.

Perhaps you are a writer – and do so to encourage, educate, and advocate.

Maybe you are an artist. Your drawings, photos, paintings, and sculptures reach out and change people.

You follow up with hurting people and ask them how they are doing NOW.

Your HALF stick of Juicy Fruit is pretty darn important. What you CAN do… what you are able to do… is ENOUGH.

Don’t let anyone tell you anything differently. If they do, give them my number and I’ll take care of it. <wink>

You have value. Believe.

Denise Portis

©2017 Personal Hearing Loss Journal

 

One-Eyed, One Horn, Flying Purple People Eater

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Sheb Wooley released a song in 1958 called the “One-Eyed, One Horn, Flying Purple People Eater“. I know this not because I was there (ahem), but heard the song throughout my childhood. If you have never heard this “gem”, you are MISSING OUT. To help fill that void for you, click here for a captioned version: Enjoy

Now I mention this because this song has been going through my head for a solid week. I know! I do have better things to do! However, I’m in the car enough that I tend to fill the time with singing… or maybe BELTING out the OLDIES is a more truthful admission. For some reason, this song is just stuck in my noggin’. It is a song that frankly? It doesn’t make much sense. Maybe it did to Mr. Wooley. Something doesn’t have to make sense to get stuck in our head though. It doesn’t even have to be the truth. It doesn’t even have to be healthy.

Negative Broken Record

Sometimes unhealthy thoughts and labels stick with us because at some important developmental milestone, we heard these negative things enough we have come to believe them. These negative thoughts can turn into self-fulfilling prophecies. These negative, perpetually repeating thoughts can bring us down and keep us in a state of defeat. Experience tells me that a state of defeat = dissatisfied and unfulfilled life.

A get so aggravated when people (and sometimes counselors) say you should erect boundaries with people who tell you negative things that you take to heart. Easier said than done. What if they are family? What if it is someone you work with daily? Most of the time, if someone tells me something negative I try to:

  1. Determine if there is any merit in what they are saying. If so, does it mean I need to change some behaviors?
  2. Determine if I respect the source. Should I spend any time at all contemplating what they’ve said as constructive criticism, or is something I should immediately release as misdirected and poisonous barbs?
  3. Determine the level of influence. Do I work with this person? Is this someone I must see either occasionally or frequently?

Sometimes the “stuck in my playback feature” of my brain are negative comments, labels, or criticisms from people I care about. I can set up a boundary (and have… mentioned below), but I cannot just shut the door and throw away the key (although there is a time for that too… read on!).

I’m no expert in rebuttal of mean insults, however I learned at a fairly young age that “fighting fire with fire” only burned everyone. Frankly, I can stand the smell of scorched material.

I learned that getting defensive often only made me look petty, childish, and well… DEFENSIVE. A defensive stance and demeanor is not attractive on me (perhaps on no one).

I have learned two responses that work for me:

  1. What you have said has upset me. I need some time to regroup and then I would like to talk about what you just said (or called) me.
  2. I don’t believe in labels and discussing things with mean-spirited people. I would love to continue this conversation in a more healthy way when you are ready to do so.

You-re Ugly. You-re Fat. You-re Disabled. You-re Embarassing.

It makes me so sad when I hear people say self-deprecating things, knowing they heard it somewhere else first. Those “stuck in our head” kind of hurtful descriptions are usually hurled from the mouth of someone who claims to love us. It doesn’t always have to be wounding comments either. In my Developmental Psychology course, I ask my students to write down 10 things they have heard from friends and family members about themselves that were hurtful “to date”. It takes most students 10 minutes to write down 10 things; or, about 60 seconds per recalled comment. Then I give them a new piece of paper and ask them to write down 10 things they have heard from friends and family members about themselves that were encouraging, uplifting, and positive. It takes a student three times as long. That’s right. At 30 minutes I call “time” and there are always some who have not been able to come up with a full ten items. What does this tell us? Are humans more prone to remember negative or positive?

Negative comments are like wounds. They may cause us to bleed and to fester. Maybe infection sets in as well and our wounds begin to affect other body parts. Negative comments leave scars. No amount of vitamin E, cocoa butter, or cell activator products will remove the scar. Sure! Both time and perhaps counseling and support can reduce the visibility of scars, but the scar remains.

Positive comments seep into the skin slowly. Yes, perhaps our ears are the conduit, but our hearts are what build up our self-esteem. Dr. Barbara Fredrickson (OCDE.US, 2016), explains that there is a 3:1 ratio of necessary positive to negative comments to equalize the impact. In other words, for every negative comment you hear and take to heart, it may take three positive comments to remove the potency and harmful effects of the negative comment.

Permanent Brick Walls

Sadly, there are times when you must love yourself enough to initiate self-care in building a permanent brick wall to toxic people. It isn’t easy. There may be a price tag. You may alienate others who are affected by your choice. You may become the target for people who insist that forgiveness AND reconciliation are mandatory. My friends? There are times that this is a small price to pay compared to the continued damage a toxic person may deliver.

If they are incapable of remorse and change, who will protect us? Though it may sound attractive at our low points, putting out a hit on the toxic person is not a good choice. If we do not permanently dis-allow them opportunities to harm us, who will? When I have had to do this, I do so with heavy heart. However, I also do so knowing my children are looking to me for an example. Cuz ya know what? They are going to have toxic people in their lives. When I disassociate with a poisonous soul, I do so knowing that younger adults learning to live with acquired disability or illnesses are watching me.

It Doesn’t Take a Gift of Words

I don’t know about you… but I want to be a part of the group that is telling another something positive, uplifting and encouraging, and genuine. I want to be a part of the THREE that helps to cancel out the negative things another has heard and believed. All day–each and every day–I look for opportunities to say positive, genuine things to others.

“You look great in that color!”

“Wow, look at how well you did on this exam!”

“You always have the greatest things to say during class discussions”

“Thank you for emailing me about your current crisis. You are so responsible in that and I want to help you”

To people I know who are differently-abled:

“Those running lights on your wheelchair are freaking AWESOME!”

“You have the best hearing of anyone I know” (to a student with vision loss)

“You’ve told me about your personal demons. I love how you bravely and courageously face life with a smile”

“I love how Milo (my service dog) loves you. He must sense what a caring person you are to seek you out each class period”  (to a student with recent TBI who is still coming to terms with new challenges)

That’s All Fine and Dandy – But I Cannot FORGET

Yup. I can determine to be part of the solution (instigator of the positive in the 3:1 ratio), and still have STUCK negative comments playing over and over in my head. “♫ ♪ This is the song that never ends, yes it goes on and on my friend. Some people started singing it, not knowing what it was, and they’ll continue singing it forever just because… ♫ ♪ 

So what’s a person to do?

  1. Surround yourself with people who are positive contributors. You may not be able to pick your family and have tough choices to make about boundaries, but we can pick our friends. Make wise choices.
  2. Learn self-talk. “With practice, you can learn to notice your own negative self-talk as it happens, and consciously choose to think about the situation in a more realistic and helpful way” (Martin, 2016, para. 5).
  3. Be realistic about extremes and over-generalizing. I love these 7 “steps” to eliminating negative thinking. Check them out here: CLICK
  4. Affirm yourself. CUTE VIDEO of a little girl saying all the right things in 50 seconds: CLICK.  Perhaps talking to yourself in the mirror has fallen out of style (but should it have?). Regardless, we can learn to dispute that negative STUCK phrase in our heads. You gotta identify it first, then figure out where it came from, decide if it is true, decide how you want it to CHANGE, and then do #3 above. And hey… if preachin’ at yourself in the mirror helps? Go for it!

I leave you with the challenge to be someone’s 3. Be the positive, uplifting and affirming influence for another individual. Make it genuine (no lying… who does that help? I never say something positive I don’t mean/believe) It may take some practice. You have to learn to be watchful and observant. May God grant me the opportunity to be the 3 for someone! That these comments may re-play in a person’s head with the frequency of one-eyed, one horn, flying purple, people-eaters? Well, color ME PROUD.

Denise Portis

©2016 Personal Hearing Loss Journal

Fredrickson, B. (2016). The magic ration of positive and negative moments. Retrieved November 8, 2016, from https://www.ocde.us/PBIS/Documents/Articles/Positive+$!26+Negative+Ratio.pdf

Martin, B. (2016). Challenging Negative Self-Talk. Psych Central. Retrieved on November 10, 2016, from http://psychcentral.com/lib/challenging-negative-self-talk/

 

Let It Go – Or It’ll Kill You

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

No. Really! I love laundry!

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

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

Fast FOR..W….w……w…ard……….  2 hours:

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

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

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

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

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

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

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

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

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

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

Why Letting It Go – is GOOD

hold-your-breath

I hold my breath. I do so,

… when I’m concentrating

… when I’m nervous

… when I’ve just fallen

… when I’m about to fall

… when I have panic attacks

… when I’m afraid.

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

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

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

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

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

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

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

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

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

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

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

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

And I can do without more “difficult”.

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

Whoosh….

That’s what an exhale sounds like.

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

Denise Portis

© 2016 Personal Hearing Loss Journal

 

Boundaries & Brick Walls

brick

I’ve shared on “Hearing Elmo” before how important I think boundaries are to people with invisible illness, disability or chronic conditions. I believe we are already vulnerable. Not a WEAK sort of vulnerability, for we are actually very resilient in comparison to people who do not struggle with similar challenges. Dunn, Uswatte, and Elliott (2009) report that people with acquired conditions and challenges are often more resilient, happy, and have a positive sense of well-being. Yet, because we struggle to be all that we can be with new limitations, we can be vulnerable to others through criticism, disbelief, and lack of support. I believe that as people learn to cope and adjust to a “new normal”, boundaries–and sometimes BRICK WALLS–are imperative.

Boundaries

One of my favorite books that I often mention, is “Boundaries” by two of my favorite psychologists/writers, Cloud and Townsend. I highly recommend the book if you are seeking to establish healthy boundaries.

boundaries

I could go on and on about how MEAN PEOPLE SUCK, but this is more than that. We have all experienced interacting with people who are toxic, negative, and critical. These interactions inhibit our growth and our ability to cope effectively and successfully with challenges–that to us are not CHOICES, rather realities of living in our bodies. Boundaries can, and should be, set for these people. A boundary limits our interaction with someone that we have discovered hinders our growth or influence. Boundaries are not permanent. People can re-establish a good relationship. I always cringe when I hear people say, “Once you’ve lost my trust, you’ve lost it forever“.

I am not who I was. I hope that my life reflects a “work in progress”. I want to be a person who continues to grow each year that I live. I believe I can set a boundary for a critical and negative person, and my faith can be restored in this person at a later date. Life changes people, folks! The boundary keeps me at a safe distance, however, for whatever period of time is needed by that person to change or grow themselves.

Yes.

It hurts when you have to set up a boundary with a family member or someone who was once a close friend. Even these boundaries are necessary at times. Self-care is not only important, it is necessary. If we do not do what we must (by setting up a boundary for an unsafe person), we cannot thrive or make a difference in the life of another. Boundaries limit what we offer to these people. You may choose to not share specific things about yourself with them. You may limit how often you interact. These boundaries protect you and allow you to continue to live victoriously. They allow you to be the champion… the WARRIOR, that you are!

However, there are times when boundaries become more than safe zones for us. Boundaries can turn into permanent and impenetrable fixtures to completely cut us off from unsafe people. The boundaries become brick walls.

Brick Walls

When do you know that a boundary needs to be replaced with a brick wall? I believe…

… you will know.

The person has habitually harmed you. You have provided an avenue for reconciliation and  they have repeatedly taken advantage and continue to injure you. When this happens, it’s time for a brick wall, my friend! When and if you choose to permanently block someone from your life, it is important to remember:

  1. You are not responsible for their behavior.
  2. You are not selfish, nor stubborn.
  3. Your applied masonry skills mean you can continue making a difference in the life of others.

How do you build a brick wall and permanently dismantle a relationship? I have had to do this. It wasn’t easy. It hurts when it is someone who once mattered a great deal. However, self-preservation may mean you need to build that wall. Here are some things that worked for me:

  1. Block them from all social media outlets.
  2. Block their phone number.
  3. Block their email address.
  4. If you can, eliminate all face-to-face interactions.
  5. Don’t feel guilty. If you do, you are weakening that brick wall. You were not the toxin, they were.
  6. Avoid other’s efforts of reuniting you to this person. Well-intentioned people often do not know the whole story.
  7. If you must grieve the loss of this person, allow yourself to do so.

Because this is something I once did, I feel like I should give a warning as well. Don’t build walls because you are hurt and hunker down into protective mode. This is self-imposed isolation, not deliberate wall-building to keep out those who are toxic to you.

A perk I’ve discovered of brick walls? It can force a change of direction. You never know “who” or “what” awaits you as you step in the opposite direction.

Denise Portis

© 2016 Personal Hearing Loss Journal

Dunn, D., Uswatte, G., and Elliott, T. (2009). Happiness, resilience, and positive growth following physical disability: Issues for understanding, research, and therapeutic intervention. Retrieved September 5, 2016, from https://www.researchgate.net/profile/Timothy_Elliott/publication/232514358_Happiness_resilience_and_positive_growth_following_physical_disability_Issues_for_understanding_research_and_therapeutic_intervention/links/09e4150a3327348871000000.pdf

More Vulnerable than I Thought – Stronger than I Imagined

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

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

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

VULNERABLE

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

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

STRENGTH

I am my own cheerleader.

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

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

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

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

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

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

Denise Portis

©2016 Personal Hearing Loss Journal

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

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.