Sometimes It Takes Work to Stay Positive

uphill-battle

When my alarm goes off, Milo (who is laying in a ginormous dog bed on the floor by me) hops up and nudges my face and arms. There are days where my eyes pop open and I lay there for a few minutes giving myself a pep talk. Milo isn’t into pom-pom’s and cheering… he just wants breakfast. This means I can’t lay there contemplating all that is “Denise” very long.

Do you ever have trouble getting out of bed? I’m not talking about because you are sleepy. I do not mean the kind of lazy-bone feeling you have when it is rainy and cold out and you just want to stay cuddled up in the blankets. I’m talking about the weariness that comes from having to psych yourself up

one

more

day.

It can be difficult. Don’t get me wrong. I recognize that I have so much to live for and that I am blessed. PsychCentral recently wrote about what NOT to say to someone with depression. The piece included a great number of platitudes that people say to someone who struggles with depression. Some that I hear a lot are:

  1. There are a lot of people worse off than you.
  2. You have so many things to be thankful for! Why are you depressed?
  3. Happiness is a choice (this one kills me because it is actually the title of one of my favorite books!)

Several years ago I saw a quote on social media that said, “Telling someone they cannot be sad, depressed, or anxious because others have it worse is like saying someone cannot be happy because others have it better.”

Yes. I do know people who are “worse off” than I am. But by what measure?

Like many with chronic illness, or visible/invisible disabilities, I have good days and bad days. I would suspect that most people who talk to me each day in person – at work, class, check out lines, or walking – believe I am a very cheerful person. Fact is? I work at it. It does not come easily to me.

At 50 years old, however, one thing I have learned is how powerful a smile and encouraging word are to others. I try not to think about my limitations. That’s so… limiting! Instead, I work to make a difference each and every day, even if all I have the energy or ability to do is be genuinely friendly and encouraging.

I love Fridays. On February the 17th, I posted this picture and caption on FaceBook:

Sweet and loyal ❤️ beat at my feet. Ready to work as soon as I need him! Which... was two seconds after this pic since I looked up too fast, got dizzy, cracked my head on the podium, and dropped my remote. He takes it all in stride. 🐾
Sweet and loyal ❤️ beat at my feet. Ready to work as soon as I need him! Which… was two seconds after this pic since I looked up too fast, got dizzy, cracked my head on the podium, and dropped my remote. He takes it all in stride.

What I did NOT post, is that later that day when I arrived home weary but safe from a long week doing what I love, I had a seizure. Right there on my front porch. It lasted all of ten seconds and I knew 20 minutes beforehand it was coming. Milo was safe in the back yard and I a l m o s t made it to the door. (No worries – I know that a frontal head bump, fatigue, and Meniere’s flare are the recipe for a “fall down go boom”. I have regular contact with my doctors and “we’ve got this” – promise!)

When I got home from work today, one week later, I find I am still thinking about that and a little peeved about the permanent issues of having multiple concussions. Each Friday, I feel as if I have pushed a “happy Denise” uphill all week long. It is hard. It isn’t so hard that I cannot do all that I CAN DO. Sure, I may be naive to think that my smile and small acts of kindness make a difference. But I choose to believe. I believe because someone else smiled at me and encouraged me. When they did I had the wherewithal to press on – one more day.

smile-and-encouragement

Denise Portis

©2017 Personal Hearing Loss Journal

 

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

 

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

 

You Don’t Just Decide

im-fine

… to not be depressed.

I should have gone into acting. My students and coworkers would be so surprised to learn how tough this past month has been. I have been struggling to write, but honestly? I just cannot. Not yet. (I’m in a bad place, but I will and very soon!) So how blessed and relieved was I to receive permission from a guest writer at Hearing Elmo, to post a narrative she wrote on FaceBook about depression? Ruth Fox has been a friend and fellow “chronic illness warrior” for a good number of years. I have trouble remembering when we first met even and we keep up-to-date on social media. Ruth lives in one of my favorite places… Tennessee. She is a photographer and writer… and a friend who understands invisible illness and disABILITY. 

Before I copy/paste what she has to share, as a reminder: Hearing Elmo is open to any and all who would like to share about this life we live. It can be anonymous, open and transparent, or somewhere in between. 

13012888_10208785574373696_450127612655971788_n

As a survivor of over a decade of profound life threatening depression, my heart goes out to the many people with depression who are struggling through the holiday season.

Depression is a vicious disorder, and not one easily dealt with by the affected individual, their family or friends. Like many chronic disorders, depression can be managed through medication, therapy and healthy mental, social, spiritual, and physical life choices.

Depression continues to be a chronic disorder for me, yet the devastating effects that it’s had on my life are greatly minimized due to my efforts accommodate it, as I have accommodated other physical disabilities.

Depression isn’t the consequence of what happens to us in life. Many of my friends and acquaintances have experienced the worst that life can offer. Yet, though they may be grieving, sad, or very frustrated and alone in their experiences, they don’t struggle with depression. This reinforces the fact that depression is, as scientifically proven, a physical disorder of brain chemistry; not a consequence of life circumstances.

Depression makes all aspects of life more difficult. The jovial atmosphere of holiday celebrations often exacerbates its symptoms. The challenge of coping with depression is similar to dealing with other disabilities; to accommodate it in such a way as to minimize the effect that it has on daily life.

For me, the first step was getting and maintaining medical treatment. Next was determining what life activities reduced my depression symptoms and what ones exacerbated them. Then reorganizing my activities so that they tilted the balance towards helpful activities. This occasionally required abandoning what was considered socially acceptable or traditional, which was very difficult to do at first.

Positive self-talk is an exercise I learned to use regularly, because one difficult depression symptom is the emotional twisting of reality. When depression is out of control, all actions or statements of other people tend to be taken extremely personally. If these are perceived as negative the result can be irrational tears, obsession over disappointments, and self-pity. The effect can be so strong that it paralyzes functionality. One’s sense of confidence and self-worth is often mistakenly placed into the hands of others.

Positive people, who accept the right of other people to do what works for them, even if it was a bit unconventional, are the kind of people my husband Gary and I want to be, and we try to surround ourselves with similar people. Depression isn’t fun, any more than all of other the challenges we face, but it doesn’t have to diminish the quality of life.

Ruth Fox


 

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?

img_3383

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

 

Crappy Life Lessons

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I’ve had to force myself to log onto “Hearing Elmo” and write SOMETHING.

Anything!

I don’t like for too much time to go by and not be writing. Writing, blogging, and “talking to you” is important to me. I learn from you. I hope we learn from each other.

Misinterpreting

Saturday, October 1st, on her twelfth birthday, we said goodbye to Chloe, my first assistance dog. She retired in May of 2015. Chloe was diagnosed with Transitional Cell Carcinoma in August of this year.

I’ve started this post 8 times (and yes, I counted). The first couple of drafts were angry and mean. One draft was scary. Others were tearful and frankly? Were so full of random thoughts and words, the grammar itself forbade me from hitting “publish“.

Shame and Blame

lane-graves

On June 14, 2016, little Lane was killed by an alligator at Walt Disney World resorts. Like many who read his story, my first thought was, “Where the heck were his parents, and how in the world does something like this happen?

Erin S., a friend of mine, fairly quickly put me in my place–and rightly so. Why do we immediately judge what we do not know?

  1. We are shocked by something.
  2. We are heart broken.
  3. We look for someone to blame.
  4. … as if that makes it better.

We cannot ever know the “whole story”. We simply are not privy to that. There is a backstory to every tragedy and every loss. Little Lane was killed as the result of an tragic (freak) accident and he cannot be placed back into the arms of those who loved him. Why do we search for who is to blame? Sometimes, folks?

Sometimes life just sucks.

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Facebook is a wonderful place; especially for the differently-ABLED community. It is a place where technology levels the communication playing field. I have re-connected and strengthened friendships. I have “met” people in this venue I may never meet face-to-face. Last week, however, I “unfriended” and “blocked” 34 people I didn’t really know. Getting one to two messages a week, led me to believe they were simply out to get a “rise”. Many posted publicly and I exercised my right to DELETE. Haters gonna hate.

I created a public page for Chloe’s last chapter to raise awareness about an organization I love, Fidos For Freedom, Inc. I wanted to share what being a puppy raiser, sponsor, and trainer for service dogs was like. I wanted to share information about the valuable resource (even MINISTRY) of therapy dogs. I wanted to share how one dog changed my life and brought me back into the world of the living after a self-imposed isolation.

When bad things happen, we tend to look for answers or worse-someone to blame. After only reading the public “cliff notes” of Chloe’s life, I was lambasted by people for making the wrong decision.

  1. You should get a third opinion. You could treat this and prolong her life an entire year!
  2. How could you let her live the last month of her life this way?
  3. OMG. It’s just a dog. Surely you have something better to do.

Now these are folks I don’t know and you are open to these kinds of messages when you go “public” with anything. I don’t mind blocking folks who just look for ways to get people riled. I fully trust that those who know me and know my husband Terry, trusted US to make the best and most humane decision for a furry family member. (More than that… a retired partner).

politics

Ah. It’s an election year. It’s getting nasty out there in FaceBook land, isn’t it? Yet those I actually do know, I allow to post whatever they want on FaceBook. I may not click “like”. We may agree. We may disagree. More than anything though I hope we are the kind of “real” friends to agree to disagree… and love each other anyway.

I love Culture of Empathy’s website. I don’t agree with everything they post, but their message is powerful. Empathy is defined as, “identification with and understanding of another’s situation, feelings, and motives”. Empathy does not mean you may fully agree with them.

Y’all?

We can love one another and show kindness and compassion without having to acknowledge that an important connection and relationship is the equivalent of being identical twins. I love my husband and best friend, Terry, but the man is an idiot sometimes (albeit a sweet one). I do not agree with everything he says, believes, or “votes”. Yet, I respect everything he says, believes and votes and fully support him because I love him and he is my friend.

The Bible does not actually use the word “empathy” anywhere, yet it is inferred. It does use the word compassion numerous times. Compassion can be defined as “a feeling of deep sympathy or sorrow for another who is stricken with misfortune, accompanied by the strong desire to alleviate the suffering.” Especially when someone is faced with a critical decision or experiencing heart ache, can I not support them with compassion? How does judgement, argumentative jabs, and insistence they agree with ME, help? It doesn’t. It only shows I lack compassion and kindness.

helen-keller

I’m not perfect. But…

I want to be perfectly committed to being kind, being loving, and making a difference. I may not always agree with you, but if we have the kind of relationship that we can talk about disagreements with respect and kindness, and walk away still close friends? I count myself BLESSED.

Crappy Life Lessons

So a crappy life lesson? Sometimes when grieving and in pain, people are gonna kick you when you are down. Sometimes when important decisions need to be made, folks are going to call into question my own character for an informed and personal choice. I’m gonna love you anyway.

For you see? Love isn’t love if it changes on a whim and because someone disagrees with you. I believe the world would be a better place if our first thought when getting up in the morning was,

“How can I make a difference today? How can I show kindness?” 

Hold me accountable.

Denise Portis

© 2016 Personal Hearing Loss Journal

Rejoicing

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— It’s such a treat to have guest writers here at “Hearing Elmo”. I welcome any and all, for we all have a story to tell, a life to share, and a voice. I am glad to offer “Hearing Elmo” as a platform for those voices. I have known Ruth for a little over 14 years. I met her at a national Hearing Loss Association convention, and then continued to touch base with her in various ways. Now we mostly connect through FaceBook and I am always tickled to see her recent photos. Ruth loves nature and has that special talent the really good photographers have–seeing things through their lens that are often overlooked by those of us who don’t stop to LOOK. When my balance issues become my “main issues”, Ruth reached out to encourage me again and again. (I have often wondered if I have been accurately diagnosed as many of my symptoms are atypical of Meniere’s). Ruth is a blessing – and lucky for you and I – a writer. I share a recent piece with you today! —

The abilities of people with chronic health problems are continuously redefined by fluctuations in whatever challenges they have:  weakness, stiffness, pain, sensory disturbances, fatigue, endurance, or mental/emotional processing.   Loss happens frequently.

Grief is commonly seen as the way to heal loss.   In the case of continuous repetitive losses, a person can get caught up in a perpetual circle of grief. Instead of experiencing healing, the overload of negative emotions such as sadness and anger can cause increased physical problems.   To maximize health, positive emotions are needed to restore balance.

How does one get from grief to happiness, when experiencing continuous losses?  They do so by making a conscious choice to response positively vs negatively to challenges.

For the first fifty plus years of my life, I allowed myself to get caught in the perceptual circle of grief. I reacted to my losses with anger and sadness.  I blamed others, from my parents to God, for my life’s challenges.  My poor choices nearly destroyed my life.

Most of my challenges came from a genetic disorder called mitochondrial myopathy, a rare form of muscular dystrophy.  The core of this disorder is the failure of powerhouses found in each body cell, to produce enough energy to sustain the health of that cell. Where ever these defective cells reside, the reduced energy results in inadequate organ function or even organ failure.

From my toddler years onward, the cells in my inner ears progressively deteriorated and died.  By the time I was in my early 20’s, I had a profound loss of hearing.   I was a survivor in the sense that I persisted in education until I got to the right career match for a deaf person.   However, I failed to maintain a healthy emotional balance and consequently experienced years of profound depression.  I was stuck in a perpetual cycle of grief.

As a young adult I began to experience progressive mobility challenges, and the grief cycle intensified.  I didn’t take care of myself, physically nor emotionally, and consequently more medical problems surfaced.  Finally, in my late 50’s, I slowly learned to focus on the good things that are a part my disability experience: my growing faith in God’s goodness, the love and understanding of my remarkable husband, incredible friendships; the cochlear implant enriching my life with sounds I had never heard; the freedom to participate in life provided by disability accommodations, including the use of my wheelchair.   I have learned to see and remember the blessings of good days.

I recently experienced a 6-month miracle in which my mobility limitations almost disappeared.  This miracle, which felt like it was here to stay, came to an end.  I grieved its loss and the opportunities that ended with it.  But now I can look back and smile warmly at the memories, much in the same way a wonderful vacation is remembered.  I truly believe that staying positive and the prayers of many people energized my body enough to stop the physical backslide, maintaining about half of the gains I experienced.  Though I continue to walk for exercise, it takes twice as long and multiple rests are necessary along the way.  My freedom to participate is again dependent on my walker or wheel chair depending on the endurance each situation requires.  But, I have learned, in spite of chronic disability and the doors it closes, to rejoice.

Ruth Ilean Fox

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