Meniere’s disease – Page 4

Accepting Help ≠ Dependence

Published on January 1, 2015 by hearingelmo3 Comments

This service dog took full advantage of a holiday vacation in Florida.

My Christmas holiday was a blur. They can be that way sometimes. I flew to Florida with my husband to be with my parents for Christmas, but I had a TON of homework. Chloe, faithful service dog, at least got the opportunity to really chill out. When I got home, I headed to an academic residency for 4 days.

Even being super busy, I still learned a few things. I learned some things about myself, about other people, and about acceptance. I began to lose my hearing and balance at the age of 25. Now that I am 48-years-old, you would think I have learned all that one can learn after living with hearing loss and a vestibular disorder for 2+ decades!

Ungracious Acceptance

Acceptance of my life as it is, seems to be an ever-evolving concept. Sometimes I take things in stride. Progression of the toll my diagnoses have, a new “timber – down goes Denise – fall”, having to switch out cochlear implant batteries mid-conversation, taking the elevator instead of escalator or stairs, and having to wait for an empty handicap stall in public bathrooms so that my dog and I BOTH fit, is really second nature for me now.

But sometimes? Sometimes I am WITCHY about it. (Feel free to put another first letter there as it probably fits from time to time). Maybe it’s hormones? Perhaps it is a lack of sleep? It may be I just had an unpleasant encounter with someone who was condescending towards me when my being differently-abled became apparent. For whatever reason, at times when someone asks if they can assist I must look…

S c A r Y

I assume this because their eyes get big, they throw up their hands in an “I surrender!” pose, and they take two full steps back. I don’t MEAN to put off that vibe, but I know there are times I must do so. I work SO hard at being independent. I love the color purple, but that isn’t why I carry a bright purple cane. I love dogs, but that isn’t why my 24/7 partner is a service dog from Fidos For Freedom, Inc. I love dangly earrings, but I don’t wear “bling-bling” on my cochlear implant because I’m a drama queen.

(OK, OKAY! I’m a drama queen, but in THIS instance it is not why I have bling-bling on my cochlear implant! Yeesh!)

I do all of these things to be independent. I yearn for independence and inner strength. I forget sometimes that the latter is the result of a “thinker” and “feeler” in sync in the body of a person who is differently-abled. Part of it, I actually HAVE caught the exasperated looks on faces when I do ask for help with something. It can be fleeting, but it’s there. I’m deaf, not blind. (We can debate if differently-abled people are far too sensitive about this and see things that are not there later).

Yeah, so? Let’s Go!

While in Florida, amidst homework and research, I did insist on going out to eat every day. I did a little bit of shopping at a place we don’t have in Maryland. Bealls was a very cool place! We also do not have a Belk. So yup. I did a little shopping.

When we went out on the town to do these things, we had to borrow my parent’s car. It is a big ol’ SUV and Chloe had to sit in the back compartment. It gave her plenty of room to stretch out and seemed like a great option for four people plus one service dog. The problem was that my parent’s SUV sits very high. Chloe is 10+ years old. She is retiring in May of 2015 (unless she lets me know it needs to be before then). The first couple of times I gave the “Chloe… OUT” command, she jumped from the back, only to have her front legs collapse and do a hound face plant in the parking lot. The first time it happened, I gasped. The second time it happened, I’m pretty sure I yelled. OK, yeah. I don’t yell. I have a hearing loss. I SCREECH. Ask me to demonstrate sometime, but bring the ear plugs.

Because my husband, Terry, didn’t want to see what a third time would trigger, he suggested, “Let me lift her out of the back and set her on the ground!”

I said, “Ok, but do it in a way you don’t embarrass her. Make it quick and don’t make a big deal about it.”

Perhaps I should explain that I disagree with those who say that dogs don’t exhibit or feel some of the same things humans do. I have seen dogs excited. I have seen them pissed. I have seen dogs pouting (do I have some stories about my grand-dog, Pegasus, or what?). I have seen dogs embarrassed. Point & laugh and dogs will duck their heads in shame/embarrassment.

Chloe’s weight ranges from 59-62 pounds. Needless to say, we don’t carry her around. I wasn’t sure how she would respond to being lifted from the back and set on all fours on the pavement; nor, did I know how she would respond to being lifted up into the back of the SUV.

The first time we opted to lift the service hound out, I held my breath. Terry reached into the back, hooked his arms under her and locked his hands over her spine, and carefully picked her up and set her on all fours.

PUH.

I exhaled rather noisily, and watched as she wagged her tail and moved to heel position, looking up at me as if, “Yeah, so? Let’s go!”

I was stunned. I had a treat in my hand to cajole her back into a good mood. Instead I went into the store as if nothing out of the ordinary had happened. I watched Chloe from the corner of my eye. (Ummm… explain to me how oval shaped things like eyeballs have corners?) I digress…

I fully expected Chloe to act, I don’t know… WEIRD for awhile. However, she took it all in stride. She needed the help, being rather fond of her own face, and didn’t even miss a step in going on about her job after accepting assistance.

Do you know where I’m going with this?

WHY???????

Why do we act so weird when we need help? Maybe it is just a little help.

… like picking up the dropped blue tooth device I spotted in a hallway that I could not bend to get, and didn’t want Chloe to destroy by enthusiastic fetching.

Maybe it was a lot of help.

… like helping me dislodge my wedged rolling briefcase from the elevator door as it was stuck solid. I struggled with my butt holding the door, cane braced, and dog freaking out as I tugged on a very STUCK wheel.

Sometimes? Sometimes, we just need a little help to continue doing our thing. We need a helping hand. We aren’t signing an I.O.U. If we truly want the world to be a kinder place, then why are we prickly when someone asks if they can help? By accepting help we are not sticking a “I’m WEAK” note on our forehead. We can accept help and still be independent. We aren’t waving all rights to an independent life should we accept help once in awhile. For most people, helping another is done so with no strings attached. They don’t even think twice about it. They may never think about it again, while WE sit there perseverating on it and making a huge deal about it. Why can’t we just say, “thank you!” and our attitude be, “Yeah, so? Let’s go!”

PRIDE.

Pride can be a good thing. There are good types of pride, and crippling types of pride. Learn the difference. Learn to accept help. It doesn’t mean you are signing on to a life of dependence. It means that you are SMART. You know your limitations and are making wise choices to do what is best for YOU. Face plants on the pavement aren’t fun. All you will have for that type of stubbornness is a skinned chin. (Ask Chloe…)

Denise Portis

As You Wish…

Published on December 12, 2014 by hearingelmo1 Comment

I’m a HUGE “Princess Bride” fan. Perhaps I’m even classified as being an “annoying Princess Bride fan“. I know so many of the lines by heart and they tend to slip out in both opportune and inopportune moments. If you’ve never seen the movie – for shame. Seriously, it is one of those ridiculous movies that everyone needs to see at least once. You will be talking about it for the rest of your life. I promise.

One of the best known (and faithfully repeated) lines of the movie is that of our hero, Westley. He says, “As you wish…” to his beloved, Buttercup, (hey… I can’t make this up) to genteelly and sweetly acquiescence to her every request. Yup. This makes him a bit of a sap. But he does become the “Dread Pirate Roberts” later and reveals to Buttercup, that he is still her “Westley” in this dramatic (and hysterical scene):

In the end, we learn that “trewww lub” (true love) is worth fighting for and that we should be careful about agreeing for the sake of keeping the peace. Well… at least that is ONE “moral of the story” I got out of this favorite! 🙂

When People with Disabilities Keep the Peace

We’ve all heard how important it is to have the right attitude when you are advocating for your own rights or needs, or on behalf of another. “You can catch more flies with honey than vinegar“.

Trust me.

I know how hard this can be at times. Having had it drilled into my head, I am fully aware that how the public interacts with ME, may influence how they interact with another who has hearing loss, balance disorders, or a service dog in the future. That “burden” keeps my mouth shut when I strive to bite my tongue. But ya know something?

Sometimes when my attitude says, “As you wish…“, I’m really only hurting myself AND others.

About a month ago, I was walking with a colleague to a meeting in another building. We had to walk through the Student Union bldg., and then go to the second floor. We were talking as we walked. My colleague turned to go up a 20-step flight of stairs… still talking.

I hesitated and said, “the elevator is up the hallway…” and my friend interrupted and said, “Come on! We need the exercise!” She continued up the stairs and was still talking.

I put Chloe is a close heel, looped my cane over my wrist, grabbed the handrail and took one careful step at a time, all the while with a death grip on Chloe’s handle attached to her vest. By silently agreeing, I practically shouted, “As you wish…”

I can’t talk and climb stairs, so I quietly made my way up the stairs one careful step at a time. When I got to the top of the stairs, I exhaled heavily (for it seems I was holding my breath), and looked up with a triumphant grin. My smile immediately faded because my friend stood there with big tears in her eyes. My brain started processing sound again (for it had been wholly fixed on arriving ALIVE at the top of the stairs), and I belatedly picked up some of her words…

“For heaven’s sake, why didn’t you remind me you can’t do stairs? All you had to do was remind me!”

I was struck dumb (silent – not mentally – grin) for a second and said, “Well I was just keeping the peace!”

She said, “You keep the peace by reminding me what your needs are. That’s not keeping the peace, that’s being a martyr. Just tell me!”

I apologized (profusely).

We can remind people what we can, and cannot do safely without sounding as if we are complaining. We need to learn to be pro-active in a positive, upbeat way. Don’t apologize for who you are or for what your needs are. However, be careful not to agree to something foolhardy like climbing a set of stairs when there is an elevator right up the hallway. My attitude of “As you wish…” could have set the scene for a disaster that day. Thankfully, it did not.

“Shove it up your… “

There are times when people with disabilities need to actually be a little more firm when they are educating or advocating. I don’t always do this well. I try to even interrupt my rising temper by reminding myself that I represent “Fidos For Freedom, Inc.“, and “Anne Arundel County’s Commission on Disabilities“. I chant in my head, “Bite your tongue, bite your tongue”. It doesn’t always work. The phrase, “shove it up your… NOSE” (scared ya a minute, didn’t I – wink), reverberates in my head.

Monday, I stopped at the U.S. Post Office to purchase some stamps for Christmas cards. (Yes, I’m aware I’m late to this “party”). I saw a man leaning against the building, smoking. I sort of register this in order to use the door farthest from him because I cannot stand the smell of cigarette smoke. As I exited my car, I reached in and got my cane, closed the door… opened the back door to unload Chloe, adjusted her vest and leash, closed HER door and then turned to walk into the building.

It seems we had an audience.

The man leaning against the building said, “What a beautiful guide dog! My mother is almost blind now. Where did you get your dog?”

I was so startled I stutter-stepped and screeched to a stop. I know my mouth was hanging open. I looked over my shoulder at my car. I pointedly looked at the car keys in my hands. I looked at Chloe and her visible vest that said “Service Dog” with tags that said, “Hearing Dog. Do not Distract”.

Then I made a mistake. I blurted. Nothing ever goes well when I blurt.

“Is that nicotine or weed you are smoking?”

His eyes got big. He stomped out his cigarette and stomped into the building. Then this little convo/prayer went through my head:

“Ok God. I blew that. If I find that man in the building please give me the opportunity to apologize and make that right. But… please don’t let me find him because I swear he’s stupid and higher than a kite!”

Yeah. It seems I can’t pray with the right attitude right after a ridiculous encounter either.

But ya know something? There ARE times when it is ok to put someone in their place. Especially if someone repeatedly makes the same comment or observation about you or people with disabilities. You can be firm and be kind.

I didn’t tell the “smoker”, “As you wish…” with an attitude that what he said made perfect sense. However, I could have reminded him that a person with vision loss would not have just pulled into the parking lot and got out of the vehicle. I could have educated him quickly and politely that there are numerous types of service dogs and canes. Instead, I was a smart aleck. Justified? Perhaps. However, in the end, I didn’t promote any “cause” or advocate in a positive way.

So Where is the HAPPY MEDIUM?

If you have lived with invisible illness or disability long enough, you DO eventually learn how to balance all of this. You learn how to remind those who have known you long enough that they may have forgotten some of your limitations. You speak up for yourself. You also learn when to firmly, but kindly, put someone in their place. There is a time for that as well.

You are going to make mistakes. Your attitude will scream, “As you wish…” at times when you simply need to say, “I can’t and won’t attempt that“. You are also going to learn to not label someone a pothead, and instead take 60 seconds to educated them in a positive way. It’s a balance we all eventually learn.

If you haven’t seen, “Princess Bride” – you are missing a treat. 🙂 I hope all of us who are differently-abled, learn to balance how to advocate and educate others.

Denise Portis

It Can Be Small Things…

Published on November 28, 2014November 28, 2014 by hearingelmo4 Comments

Deborah Marcus, friend and photographer, explains, "I love to hear how what I capture and share gets people to notice stuff they'd probably overlook". I have learned much through seeing what she sees through her camera lens. — Deborah Marcus, friend and photographer, explains, “I love to hear how what I capture and share gets people to notice stuff they’d probably overlook”. I have learned much through seeing what she sees through her camera lens.

A dear friend and fellow “hearing again with a CI” friend, Deborah Marcus, has a knack for capturing the kind of photos that has me sucking in my breath and having to pinch myself to remember to continue breathing. She finds the smallest detail and creates a visual memory by “pointing and clicking”. It’s a talent, and one I don’t have. So I enjoy seeing the small things through her camera lens that I would normally miss. Why do I miss them? I’m not looking…

The Problem With Health Challenges

One of the biggest problems with health challenges isn’t pain. It’s not fatigue. It’s not the stigma. It isn’t depression, anxiety, or any other comorbid diagnosis. In the years I’ve lived as a disability advocate, writer, and mentor, the biggest danger of living with chronic health conditions and challenges is that it can make a person extremely self-centered.

It’s easy to do. No one understands except perhaps others we’ve connected with who “live the same”. The people we love may be supportive or stumbling blocks. They may be our biggest advocates, or the pain in our… erm… behind.

Take Deborah’s photo above. Now me? I love daisies and any type of flora that is yellow and white. But ya know? I’d walk right by this flower and only think, “what a pretty flower!” I don’t stop, grow quiet, get down on my knees, and really open my eyes. If I did that more often, I’d see the gorgeous wee bug. (Entomologist, I’m not…)

It can be the small things that make an ordinary moment in time, something to be celebrated. When we become self-focused, it is impossible to see those small things and we miss celebrations.

Pity Parties are still Celebrations

Don’t get me wrong. I believe it is healthy to have a good ol’ pity party from time to time. After all, a party is a celebration … of sorts. ♪♫ It’s my party, and I’ll cry if I want too…♫♪

Learning to adjust to new challenges can be exhausting. Some folks with chronic illness or invisible disabilities may find it very therapeutic and healing to bawl their eyes out (Borchard, 2014). In “7 Good Reasons to Cry Your Eyes Out”, Borchard (2014), explains all the GOOD that can come from a good ol’ pity party.

But self-pity is dangerous and different than an occasional pity party. Self-pity begins and ends with self-focus. When we are entirely focused on ourselves and our own problems and difficulties, we cannot see the small things and miss the celebration. “We are bombarded with opportunities to feel sorry for ourselves” (Smith, 2004, para. 2) and if we become self-focused our camera not only fails to capture the beautiful bug, but we miss the flower as well. As a matter of fact, we may only see the dusty road in front of us as we trudge along feeling sorry for ourselves.

My Life is Hard. Can I Learn to “Really Look” Again?

Life is hard. I have heard from many readers who live with chronic conditions and invisible illness who know that they will wake up with pain and fatigue, stress and anxiety, and go to bed holding hands with the same bed fellows. However, many of these same people have learned that in spite of their circumstances, they can make a difference.

They have set short and long term goals… and are seeing them fulfilled.

They have reached out to mentor and volunteer… forever changing the life of another.

They have learned to adjust and evolve, rolling with the “punches”… teaching others by example and living with courage and perseverance.

They have learned to stop focusing on self… and can see the small things. They are celebrating.

I’m still learning how to do this myself. Believe me, when I reflect on “things we should do”, I’m sitting in the front row of my own classroom. And sometimes, it isn’t fun. Last week we had StRaNgE weather. It was in the mid-70’s one day, and in the low 30’s the next. Sunshine to snowflakes. For folks with Meniere’s disease this means you walk as if strolling on the deck of a ship – IN THE MIDDLE OF A FREAKING HURRICANE.

Rushing from my car to my 11 o’clock class, I was trying to hurry Chloe out of the wind and drizzle and hustle 100 yards into the building. One thing folks with Meniere’s disease do not do well is hustle. Not even with blinged-out cane and service dog. So I slipped on some leaves plastered to the sidewalk and fell on my hip and rolled to my caboose. I sat there a second with Chloe, wagging her tail beside me, perfectly content for a spontaneous pit stop. Since I was already SITTING, I let her go leash length to do her thang. As I moved to get up, my “no slip” (*rolls eyes*) boots slid some leaves out of the way as I struggled to rise. I noticed that the leaves had left perfect “leaf footprints” on the white sidewalk in a beautiful display of “peek-a-boo” gone right. I stood there and said, “well celebrate THAT!” I’m learning to look, and it only took 10 seconds. I remembered that leaf pattern long after my britches dried out. It was worth remembering; worth celebrating.

I hope each of us who live with significant challenges can learn to see the small things. We can only do it if we learn to look and if we take the time to do so. We can only do it if we stop with what is natural – self-focus and self-pity. I believe no human is stronger than those who live with invisible illness and disability. I’m a wimp with little to no ability to see what is right in front of me. If I can learn, you can as well.

Denise Portis

Borchard, T. J. (2014). 7 good reasons to cry your eyes out. Retrieved November 28, 2014, from http://psychcentral.com/blog/archives/2009/06/06/7-good-reasons-to-cry-your-eyes-out/

Smith, R. (2004). Self-pity will destroy you. Retrieved November 28, 2014, from http://www.ncbi.nlm.nih.gov/pmc/articles/PMC437127/

But, Butt, Buttocks and Butte

Published on November 1, 2014November 1, 2014 by hearingelmo1 Comment

Isn’t the English language crazy sometimes? Did you know that it is actually one of the hardest languages to learn? (Oxford Royal Academy, 2014). Since most who are reading this likely know and use English as their first language, that may come as a surprise to you. We bellyache about how difficult it is to learn Spanish, French, German, etc., because most of us were born into English speaking households. Yet, many scholars argue that English is quite difficult to learn.

Take homophones for example. “Butt” can mean to “be adjacent to” or it can be your hiney, your buttocks, your butt, your behind, your gluteus maximus, your CABOOSE. Talk about confusing! You have to look at words in context to figure out the meaning. Then… we have acceptable shortened versions of words. For example BUTT is an acceptable, widely used word in the place of BUTTOCKS. However, BUT is not short for BUTocks. As a matter of fact, that isn’t a word! Add an “e” to BUTT and it even changes the pronunciation of the word. Now it is BUTTE (pronounced \ˈbyüt\). However, you don’t ever add an “e” to BUT. The word BUTE is not a word (unless you mean the derivative of the medical word phenylbutazone). You just ran screaming from the room, didn’t you?

Get it Right

But ya know something? Sometimes we use words and think we know what they mean when we do not. It is my opinion, that those of us who live with disability, chronic illness, or invisible diagnosis, should know our own SELF very well. I have Meniere’s disease and am late-deafened. I sought to learn everything I could about both conditions. When I later developed extremity peripheral neuropathy, I learned all I could about this condition as well. However…

I cannot expect everyone I meet to be experts on what is wrong with ME.

Aren’t we guilty of that sometimes? Heck, even with our loved ones we really can expect too much from them. So we have to be careful about our expectations. If I tell a colleague that I’m late-deafened and they respond with, “Oh… OH! I know some sign language!” (and they start to slowly and painfully finger spell their name)… don’t have a COW. (Besides… that is just MESSY!) Not everyone knows that the vast majority of people with hearing loss are late-deafened and do not use ASL. Try gently educating instead.

I told a student who was walking down the hallway and then into an elevator with me, all the things Chloe does for me. She asked about my condition, so I tried to explain Meniere’s disease in layman’s terms. When we exited the elevator, she helpfully took my elbow, and said, “Here… let me help you“. I stopped (after making sure hound dog and my bags were on the right side of the closing elevator door) and dug in my heels. I looked at her in astonishment. I had just walked down a hallway with her, wheeling my bags behind me and juggling leash of faithful service dog not five minutes before! After helpfully disclosing and explaining Meniere’s disease now I’m incapable of walking on my own? Because I knew she meant well, I didn’t scream, spit, or throw a hissy fit (*pats self on back for rhyming so nicely right there*).

I said, “I can walk on my own. Chloe helps me“. She stared and then said, “But… But you are WOBBLING“.

I cheerfully retorted, “Yup. Welcome to my life!” and walked off.

Everyone’s an Expert!

Another problem you may encounter if you have a long-term or permanent diagnosis, is that helpful folks sometimes act “the expert”. I’ve tried to explain that I am late-deafened and hear again with a cochlear implant, only to be interrupted by the person exclaiming, “Oh yeah. I have to turn the volume up now that I’m in my 40’s!” (I’m like… whaaaaaa…?)

I told an employee of my favorite grocery store a little bit about Meniere’s disease. Chloe and I always meet him stocking bread in the same aisle almost every week. After hearing my brief explanation of Meniere’s, he said, “Oh yeah, I walk into things after I’ve been drinking even just one beer!” I stood there trying to determine if my brain heard what I thought it heard. Ever been taken by surprise before and your mouth just blurted out what you were thinking before you had a chance to filter it through your state-of-the-art “Maturity Meter”?

I said, “That’s the dumbest thing I have ever heard“. He stared and then stomped off. We only see the tail end of him leaving the bread aisle when we go to the store now.

All my buddies who are late-deafened joke about this response after telling someone that they are late-deafened: “Oh yeah, I have an aunt who is death“.

Rest in peace, auntie.

Cut ‘EM Some Slack

Just as our English language can be confusing, so can your explanations of who you are to others. Even invisible conditions such as mental illness are so misunderstood. Many folks who try to explain a mental illness diagnosis are then treated like:

1. Fragile porcelain that may break under pressure

2. They are suddenly contagious

3. They are more dangerous than Freddy Krueger

All we can do, is do our BEST. In the end, we need to work hard at trying to understand that others – even those who may care about us the most – may not completely understand your new normal. That’s OK. A healthy acceptance and ability to BE GOOD TO OURSELVES is not dependent on the understanding of others.

Denise Portis

©2014 Personal Hearing Loss Journal

Oxford Royale Academy (2014). Why is English so hard to learn? Retrieved on October 27, 2014, from http://www.oxford-royale.co.uk/articles/learning-english-hard.html

Time Lapse

Published on October 23, 2014October 23, 2014 by hearingelmo4 Comments

One of my first photos, 1966 with my mother and older brother, Lee.

Oh to be able to see a time lapse of your life! Recently, someone I knew from “my old hometown”, posted a video of a rose blooming in a time-lapse segment. Just a little over a minute long, I sat spell-bound as I watched. Here… lemme share a little spell-binding:

So consider yourself bound by a spell!

Erm…

Moving on…

When I think back over my life, I know that at no point did I foresee who I would be in 2014. I had no plans for a traumatic brain injury at the age of 6. I didn’t put down “late-deafened adult at 25” as a life goal. I never had a hint that I would deal with Meniere’s disease on a daily basis.

There are few things I desire in life. I feel blessed in what I have. However, if I had to explain a “main theme” on my “Bucket List”, I would have to say my heart’s desire is a slow build to real beauty. Just like the rose bush above in that my imagination could not capture what was to come AFTER TIME.

What I think is beautiful today is not at all what I thought was beautiful at 6 years old, 16 years old, or 46 years old. Outer beauty is fleeting and temporary. Outer beauty needs a number of “props” just to pass as beautiful. Things like make-up, proper lighting, staging, and other “props” that are not really a part of the person. Now that I’m 48, beauty is truly an inner kind of spark.

A friend of mine, Deborah, celebrates a birthday today. She is one of those “slow build to beauty” kind of people. The longer I know her, the more her beauty is revealed to me. She has a heart for people and a passion for making a difference.

Just Because You have Broken Parts, Doesn’t Mean You are BROKEN

Years ago when I decided to embrace who I was, life became easier. I stopped trying to hide how I dealt with challenges and decided that being REAL was much more nurturing for my inner Denise.

My ears don’t work without the aid of bionics. My balance causes me to fall – a lot. My most “frequent” view is staring at the sky while I “get a grip”. (Hey! At least this means I get outside a great deal!). I may have broken parts as a person with disabilities, but I am not broken.

Neither are you. Do you live with disability, chronic illness, or life-changing diagnosis? You may have broken parts but you are not broken. Some of the most courageous people I know are folks who live with challenges. If we could look at a time lapse of your life, what would it show?

Sure. We would get some indication of dealing with tough times. We would see wounds. We would also see numerous victories. I’m fairly certain we would see a slow build to beauty, however. It helps to take a step back and look at the big picture from time to time. After all, living with challenges can cause a person to get bogged down in “today” and just surviving. May each of us remember to review our time-lapse life and celebrate the beauty.

Denise Portis

Sometimes? All You Can do is LAUGH

Published on September 22, 2014 by hearingelmo7 Comments

You’d think by now hound dog was accustomed to me bustin’ out into peals of laughter. I’ve done it often enough, after all! But I still take her by surprise sometimes!

I had a “Murphy’s Law” kind of day just recently. One of those days where if something COULD go wrong, it WOULD. Some interesting facts about Murphy’s Law and where it all began, visit this link. “Whatever can go wrong will go wrong”.

Chloe and I were walking one evening and the weather was DIVINE. Hardly any clouds, low humidity, and I had a “pep in my step”. For once, my Meniere’s disease was allowing me to walk at a pretty good clip with very little weaving. When I walk, I talk to my dog. Chloe would probably freak if I took a walk and was totally silent. It helps her pay attention to me, and I throw her name in there from time to time. However, sometimes I’m just…

Yackin’

Yup. Just talkin’ about anything and everything. It helps me to think out loud and I tend to go on and On and ON. I actually said out loud, “Wow, Chloe. Look at how easily I’m walking this evening! No wobbles! Moving along at a good rate! I’m smokin’!”

Chloe gave me this LOOK. Almost as if she anticipated something going wrong after that lofty observation. Within 30 seconds (I kid you NOT), I stumbled on an ornery piece of elevated sidewalk and opened my mouth to shriek (for I do precious little QUIETLY) only to have a bee swoop in my open mouth as I began to fall into a nearby bush. So here I am choking on a bee, trying like crazy to spit it out while being impaled on various twigs and branches of a bush… a ROSE bush – wouldn’t ya know? So thorns grabbing me everywhere. Worse, it was damp earth under the bush thanks to recent rains so when I connected with the ground there was a obvious squishy sound and splat as my hip, knee and foot connected. So there I lay in the mud INSIDE a bush, choking on a bee, covered in thorns, desperately trying to hang on to my leash because Chloe was …

OUT THERE

SOMEWHERE

outside the BUSH.

I laid there a minute trying to go through my Meniere’s “play list” that automatically begins playing after I fall.

It’s a cute little jingle.

I’d share the wonderful lyrics with you so that you can sing along… but frankly I can’t carry a tune in a bucket and it’s one of those songs one whines and sings to oneself. So anyway… I run through the steps.

1. Am I dead?

2. Is anything broken?

3. Where is Chloe?

4. Can I move?

5. Do I need help?

So I was able to answer, No, No, *POINTS – somewhere outside the bush*, Barely, Yes.

I tried to turn to see if I could reach my bag. You know… the one with my cell phone in it that I carry in case of emergency? I can see it just out of reach out *there* near Chloe’s legs.

So… I asked Chloe to fetch the bag for me. She grabbed it up and ducked down to look under the bush at me. What she saw, made her drop her jaw and the bag tumbled back to the ground. Crap. Now my phone is laying outside the bag. So I tell Chloe to “fetch phone” – which is actually easier for her to do as it is something she does several times a day. She grabs the phone, looks down under the branches again to where I lay and squirmed to reach my outstretched hand to give me the phone. Success!

Only… the phone is dead. That’s right, I carry around a phone with a dead battery on walks because it is SO helpful to do that. *rolls eyes*

So I decided that I needed to get out from under the bush. Easier said than done. I’m hung up, slightly injured, dizzy, muddy and on the verge of crying. Not a good combination. I thought, “Oh my gosh. I’m going to have to lay here until somebody walks by to help. How embarrassing! How will I explain this?” I didn’t have to lay there very long before I noticed that Chloe was now snuffling at my hung up hoodie sweatshirt.

TUG. YANK. R…I….P! Unbelievable! She tugged me free!

I rolled to one side to get out from under the bush and was wise enough to sit there a minute. Chloe plopped down and waited for me to “collect myself”. I fall SO OFTEN, if I am able to just go down without hitting my head I consider that a coup. So I checked out all my scratches and now torn clothing and thought that – heck. It could’ve been worse. It HAS been worse. So I started to laugh. Sometimes? All you can do is laugh. Chloe looked at me and just panted and “grinned”. It’s not the first time I’ve sat laughing covered in mud and trying to find the wherewithal to get up and keep going! (Likely won’t be the last time either!)

Can You Laugh at Yourself? Should You?

If you live with an invisible illness, have a disability, or a chronic condition, it can be helpful to learn to laugh at yourself. A great little article about the benefits of laughter can be found HERE.

But if you don’t believe in the power of endorphins or social connectedness, you still should learn to laugh at yourself. At least… that is my opinion. Here are some reasons I have learned to laugh at myself:

1. If I am laughing, it can reduce anxiety that others may feel when my disability pops up and causes me to do something like fall, mishear something, or other “Denise blooper”. Does it matter if someone else’s anxiety is lessened? Well… I don’t want people to feel uncomfortable around me. If I can laugh at myself, hopefully they will learn that I take who I am and my new “life parameters” in stride and am fine with it.

2. It reduces MY anxiety. Endorphins are real. It’s not some kind of borg nanotechnology that only re-routes and fixes sci-fy actresses. I FEEL BETTER after laughing.

3. If I laugh, it really helps me accept myself – just the way I am. You can’t change the unchangeable. I’m a klutz. I’m going to fall. As long as I’m in one piece and don’t have any odd bits of bone poking out anywhere, (Yeah, I know. Right?) laughing at myself helps me just accept what happened. It is MY WAY of embracing my flaws. This is who I am.

3. It helps me put things in perspective. While cackling like a hyena, I can take stock too. My little “jingle” may re-play. Some deep breaths – a mirthful hiccough or two, and I’m good as new!

4. Laughing helps me de-stress. Likely I’m laughing because I just did something that COULD cause me stress. (What if someone saw? Bet this mud will NOT come out of my jeans! Chloe tore my hoodie! I’m never walking again! As a matter of fact I’m just going to sit here on the sidewalk and feel sorry for myself! I’m going to stomp on my phone – when I finally get up. I hate my life! I want my mother… ) Laughing… de-stresses me. I can feel the tension roll off of my shoulders.

So I do believe “laughter is good medicine”. But…

There are perfectly good reasons to take the time to CRY too.

Or Scream.

… but those are best left for another writer to touch on! 😉

Denise Portis

By Association…

Published on September 2, 2014 by hearingelmo6 Comments

You’re gonna think this is off topic. Hang with me, I promise this is a “typical Hearing Elmo” post.

I’m turning in my “Christian” card.

I’ve been so aggravated with “Christians” over the past month, that I decided to shred my “card”. Being a “card carrying Christian” doesn’t mean anything anyway.

It matters how you live and Who you put your faith in… at least that is what I believe. Sometimes I get extremely annoyed on FaceBook. But…

I stay because the disABILITY community is alive and well, thriving and connecting on FaceBook. In the last month, however, I have seen folks post a couple of things in the name of God, that made me shred my card. Carrying a card doesn’t mean squat. I’m going to live what I believe and ignore some folks that choose to make the “real deal” look bad.

1. The suicide/death of Robin Williams

Some things I actually saw posted:

“Shame on Robin Williams for causing such grief and forcing his family to shoulder this for the rest of their lives. No way is he in Heaven”.

“A Christian cannot commit suicide. It keeps them from Heaven. Guess we know where Robin Williams is”

“It’s is so sad he (Robin Williams) didn’t get help for his depression. Had he known God, that would have helped”

“Disgusts me! Suck it up and be a man. Seriously, the coward’s way out”.

All these from folks who regularly post things making it clear their faith-based beliefs. Yet this erases all of that in my opinion. They only show their stupidity (I mean… try doing some real research on what clinical depression is, would ya?) and judgmental attitudes. Yeah. That will win others to Christ.

2. The ALS Ice Bucket Challenge

Some people who have made it clear what “card” they carry when it comes to personal beliefs and faith, reported that they could not accept the challenge because ALS research conducts stem-cell research. It doesn’t seem to matter that stem-cells can be harvested from a number of different procedures – only one that is from embryos. Couples with frozen embryos can:

simply discard the embryos
can store the embryos indefinitely at their own expense
can give the embryos to other infertile couples. (More information about that option is available through the RESOLVE: The National Infertility Association)
can donate the embryos to general research or stem cell research (CIRM, 2014).

Stem cells can also come from adults, however, and umbilical cords of newborns. Scientists and researchers have even learned to induce pluripotent stem cells – alter adult stem cells to have the properties of embryonic stem cells (Mayo, 2014). But wait, let me guess. You have issues with genetic research, too?

Let’s say stem cell research goes against your personal beliefs and world views. So you do not support infertile couples seeking help in order to conceive? So if stem cell research is done and embryos are used… and a cure or viable treatment is found for diagnosis such as: spinal cord injuries, type 1 diabetes, Parkinson’s disease, Alzheimer’s disease, heart disease, stroke, burns, cancer, osteoarthritis, and ALS (Mayo, 2014), you would not participate in this treatment or cure if diagnosed with one of these, right? Or, if someone you love is diagnosed with one of these debilitating diseases you will let them suffer? Do you know how many relatives I have that would not be alive if not for diabetes/insulin research?

OKAY!

Ok.

ok… I will calm down. After all, you are allowed your opinions and biases. This IS (still) a free country. But I don’t have to buy into that, nor drink your proffered kool-aid. I read some posts about rejecting the ALS Ice Bucket challenge that made me weep.

I mean I cried buckets (though not ice buckets).

Because people who have this disease or love someone who does may have seen your post. And heard your excuses.

Hey. Most of us have limited incomes and must choose what we do with our discretionary monies. There are only a handful of places I give to each year because they are causes and non-profits that I am passionate and convicted about. If you choose not to accept the “challenge” that is your choice. Maybe say, “sorry, I give to other foundations/charities but I salute those of you who are giving to ALS”. Just please don’t make excuses about why you aren’t going to give to the ALS foundation and say it is because of the “card” you carry. Worse… explain that you are going to give your donation directly to a patient with ALS instead of the evil foundation. Because that person wants your money and not a cure.

Who Am I – by Association?

So all of this has made me think. (Can ya tell? LOL) Some of my associations I am very proud of and gain physical, emotional, psychological, and spiritual benefit from participating. Others make me keep my distance though. I may even shred my “card”. It doesn’t change who I am – merely my associations. I am a person of faith, but I want to be transparent, compassionate, and a friend who makes a difference.

What are your associations? (Other than those that are faith-based)

I am associated with groups who have bionic hearing. I have a cochlear implant. Sometimes we disagree on “best company” or hearing health strategies, but we don’t judge or behave holier-than-thou. We agree to disagree when needed.

I am associated with groups with vestibular disorders. There are SO MANY different specific diagnosis that are vestibular disorders. Meniere’s disease is a fickle pickle. Few have exactly the same symptoms and triggers, and what program works for one may not do anything for another. However, we work hard to accept that “whatever works” for each sufferer.

I am associated with groups who advocate for the rights of those with service animals. Fidos For Freedom, Inc., radically changed the course of my life. I don’t agree with all training practices and at times am rubbed wrong by certain personalities. However, I proudly wear the mantle of service dog “mom”.

Yet at some point in my life I had to dis-associate with the culturally Deaf. My reasons are a long story, but it is my story and I shoulder the responsibility of that choice.

I chose to dis-associate with my undergrad alumni. Again a long story, but one I stand by.

I chose to dis-associate with people who don’t like Greek yogurt. They can’t be trusted.

These are my choices, and YES. I “get” that you have the choice to “dis” Robin Williams, individuals who took their own life, and depressed people who have lost hope. I respect your choice. Doesn’t mean I can and will choose to associate with you. I understand that your conscious will not let you give (one time or regularly) or support (by posting a video and challenging others) the ALS Foundation. But if you choose to voice that opinion and choice in such a way that it harms others, I don’t have to associate with you.

There are numerous organizations in our great country that I do NOT support because of ethical concerns and personal choice. But you will never see me posting things in a public venue something that may cause harm to someone else – even peripherally. I have the freedom to express my opinion one-on-one to close friends and my husband. Believe me… I do this regularly when my ability to cope with those who hate Greek yogurt overwhelms me.

Y’all? Go be nice to others. 🙂

Denise Portis

CIRM. (2014). Myths and misconceptions about stem cell research. Retrieved September 2, 2014, from http://www.cirm.ca.gov/our-progress/myths-and-misconceptions-about-stem-cell-research

Mayo Clinic. (2014). Stem cells: What they are and what they do. Retrieved September 2, 2014, from http://www.mayoclinic.org/tests-procedures/stem-cell-transplant/in-depth/stem-cells/art-20048117

Watch Me

Published on August 19, 2014 by hearingelmo2 Comments

Want to get on my last nerve? Enjoy listening to me Sputter as I desperately try to spit out a response? Want to see this kitty’s claws?

this puppy’s teeth?

this chicky’s – erm – umm – BEAK?

Then tell me I can’t do something. Heck, I’m not even the “first born” in my family! The birth order norm fairy forgot to send the memo when I was born – “2 of 4”. I can be a stubborn behind. Sometimes this is very, very BAD. But sometimes? Sometimes this is very, very GOOD.

Do you know that I credit my “can do” attitude to my hound dog? The fact that I can say, “Watch me!” can be attributed to the fact that I am partnered with an assistance dog from Fidos For Freedom, Inc.

Yes. Perhaps I would have found my courage without her. I may have discovered I am resilient on my own. I may have responded to a “Hey! You can’t do that!” with the response of “Oh yeah? WATCH ME!” by simply growing and maturing. However, I can exactly pin point the moment in time when I grew self-esteem muscles.

Chloe jumped into my bubble bath with me when my phone rang. Her hearing alert was so ingrained, she was oblivious to the water and naked partner.

I was matched with Chloe in May of 2007. Shortly after that, Chloe came home to live with me and to do what she’d been trained to do. Alert me to sounds I could not hear. (Eventually she received additional training and skills to help me with my balance). I use to really enjoy bubble baths. This was before numerous concussions and worsening Meniere’s disease made the risk of drowning to real. Chloe was parked on the bath mat while I enjoyed that lazy bubble bath. I can’t tell you how startled I was to suddenly find my dog IN the bathtub with me and licking my face. My husband popped his head in the door and said, “Your phone was ring… ing. Ummm. Why is Chloe in the bathtub with you?”

From that moment on, I knew I’d never miss a phone call.

… or alarm clock, or not be able to pick up something I’d dropped, or climb stairs safely, or know if someone was behind me in a store, and friends? The list goes on…

Watch Me

One of the early commands I learned was “Chloe – WATCH me“. Because I talk to my dog and would often say, “Chloe – look-it that squirrel, – or – look-it that bunny”, I learned NOT to say, “Chloe LOOK”. It would make her eagerly look around at whatever CRITTER I had seen before her! However, if I say, “WATCH me“, she looks right at me. She may cock her head and obviously listen for a command; much more than just meeting my brown eyes. However, she knows that “WATCH me” means “make eye contact – pay attention”.

Chloe actually tells me “WATCH me” as well. Chloe does it with her ears and head. When her head swings in a specific direction and her ears go up, I : 1) look at her and pin point where she is looking/listening, 2) turn to look myself. It may mean I need to step out of the way of something or someone.

Not LITERALLY

“WATCH me” doesn’t always mean literally, however. I was so cracked up at a meeting I attended recently. I was seated next to a person with low vision. We were in between speakers and were visiting while we waited for the next session to start. About 10 yards away, I noticed this man and lady plug up a power strip and run an extension cord over to their row in the auditorium. I interrupted my friend and said, “Hang on – they can’t do that! I’ll be right back. Watch me!”

I stood up and walked over to the couple now fussin’ with how the cord should lay across the aisle. I put Chloe in a sit/stay and said, “Oh I’m sorry. You can’t put that cord there as there are a bunch of us in this area who cannot navigate safely with it stretched across the aisle“. They looked at me with a startled eyes and then around me to the section I was sitting in. I could tell by the dawning comprehension on their faces, that they spotted the service dogs, walkers, scooters, and canes.

“Ooops. Sorry about that!” and they worked together to pick it up and roll it back into a nice handful of cords and plugs.

I casually walked back to my group and my friend said, “I saw that! Fist bump!” and she held up her fist for a “you go girl” moment.

Then it hit me. When I walked away I had told my friend with low vision, “WATCH me“. When I returned she said, “I saw that!” I started laughing. Not the kind of southern girl lady-like giggle. Oh no. I was hee-hawing. I managed to snicker out loud in between SNORTS what I had said – and what she had said. I nearly laughed myself into the floor. Yup. The kind of laugh where I had tears of mirth running down my cheeks and very unladylike hiccoughs to boot. My friend was laughing just as hard. She said, “We’re a pair, aren’t we?”

You “see”, my friend? You don’t have to have 20/20 vision to be able to WATCH ME. You can pay attention with your eyes, your ears, or your hands. You can pay attention with your heart. You can pay attention – by PAYING ATTENTION.

It’s a focus.

It’s an attitude.

One of my favorite quotes (in the opening picture above) is by C.S. Lewis: “Every disability conceals a vocation, if only we can find it, which will turn the necessity to glorious gain”.

I recently had someone take me to task for self-identifying as a person with disABILITY. She argued that I was basically admitting I was unable to do something. I thought, “Well how wrong is THAT?”

Every person I know who lives with disability is actually someone who has learned how to do something IN SPITE OF challenges. You find a new way to do something. You learn how to do things safely even though it may not be the way a task is done by most folks. Perhaps you have assistance because of a device, service dog, or have simply learned to ask for help.

Yesterday while on campus, I needed to drop something off at the Disability Support Services office. My balance was “good” yesterday, so I exited a door that actually opened into a courtyard that had stairs bordering the perimeter. I felt confident to go up the 20 some odd stairs with Chloe. When I reached the top, an employee was standing there with big eyes, having seen me take a slow but steady climb to the top.

“Hey!” I said cheerfully, and stepped around her. I looked up and was startled by a mass of people coming out of the gymnasium towards me on a very narrow sidewalk. I looked for an alternative path and spotted a way around through the mulch and picnic area.

Sensing what I was about to do, the lady beside me said, “Maybe you should wait“. I know she meant well. I felt no criticism, nor did I feel she was talking down to me. But… I was in a hurry, and I was having a good balance day. I had my service dog right beside me.

So I responded, “Oh, I’m ‘good’, no worries…” and proceeded to carefully pick my way around tree roots, pine cones, mulch and twigs. I didn’t retort, “WATCH me“, but if one could interpret the courage and attitude from my squared shoulders and confident stride, you would have “read that” in my departure.

Chloe and Fidos For Freedom were the “shot in the arm” I needed to become confident and independent. You may have found your own way to adapt. Having a disability does NOT mean you cannot do something. As a matter of fact, chances are if you tell someone who is differently-abled they cannot do something, you may discover by the set of their jaw, the determined look, and confident square of their shoulders that they most certainly CAN. Their body language screams,

“WATCH me“.

Denise Portis

Recurring Dreams… Life Goes On

Published on August 11, 2014August 11, 2014 by hearingelmoLeave a comment

One of my favorite chapters in “Introduction to Psychology” is the one where we study dreams, sleep, and the subconscious mind. Everyone dreams – though you may not always remember your dreams. If you have furry family members, you’ve learned that even pets dream. I’ve seen evidence of REM sleep in dogs, cats, hamsters, even cows!

Very likely, if you do remember a dream it is because it was a bad one. Or, you may remember it because it is a recurring dream. Interpreting dreams is tricky. Yes, yes, I know! Abraham, Jacob, Joseph, Daniel, and numerous others in the Bible made it look easy. It really is NOT that easy. If you have dreams that are bothering you, or have recurring dreams, don’t be afraid to talk about them with someone you trust. It can be a friend, counselor, or peer with a supportive role in your life. However, just remember, YOU are the expert on your dreams… they are YOUR dreams. Tartakovsky (2011) explains that there are indeed some universal symbols in dreams, however what those symbols mean to the DREAMER is what really matters. Someone else analyzing and interpreting the dream on your behalf is very likely inaccurate. In spite of knowing WE are the expert when it comes to our dreams, recurring dreams usually end up making us “talk out loud” about what we are dreaming. Because you dream this dream OFTEN, you start thinking about it when you are awake. Most dream analysis experts agree that “recurring dreams reflect feelings and awareness that have not been successfully resolved in our waking lives” (Psychology Campus, 2004-2008, para. 4).

My Recurring Dream Had a Specific Trigger

I (like many of you) have a recurring dream and it always follows the same conscious scenario. Every time I fall and actually sustain an injury, I can guarantee I will have the same dream. I actually call it my “falling dream“.

Yes.

I do understand that by anticipating the dream, I am likely precipitating the dream itself. I get that. Now before you jump to conclusions, my dream isn’t about falling. Heck, I do enough of that in my conscious activity! I certainly don’t need it to happen in my subconscious mind – grin!

After a fall, I have a dream where I’m walking in a busy location with people everywhere, and all of sudden I’m frozen and cannot continue walking. Perhaps even more telling, my service dog, Chloe, is also frozen mid-step. Everyone around us continues to walk, talk, and move. Sometimes in the crowd I recognize people from my family, work, church, etc. Most of the time the faces are strangers, however. I can “hear” myself in the dream screaming (of course my mouth is not moving), “Help me! I can’t move! I can’t speak! Why aren’t you helping me? Can’t you see I’m frozen?”

So… yeah. Please have fun with that and if you feel like commenting or emailing me what YOU think this probably means, go for it! I’m always interested in other’s opinions. Because the dream always follows a significant “Denise fall down – go boom” moment, I think I have this one figured out. I’ve had this same dream for over 12 years. The only thing that has changed in the dream is the addition of Chloe, my service dog. I was matched to Chloe in 2007. Goes to show the significant impact a service dog has on their person that she ended up in a recurring dream. <BIG GRIN>. Another change in the dream occasionally happens… but I’ll get to that later! <wink>

I believe this dream “for me”, means that I recognize that my “new normal” has an affect on ME, but not so much others. All the feelings, fears, bruises, even shame, is something I deal with in being differently-abled. However, it isn’t something that impacts others. Ever want to scream at the world to stop a moment and acknowledge that…

DARN IT. I’m dealing with this! Don’t you see?

DARN IT. I suck at this! Don’t you see? HELP!

Life goes on. That’s hard, isn’t it? Isn’t it frustrating when you are sucker punched with a personal crisis of some kind and life just goes on as usual for everyone else? Worse? Life goes on for YOU!?

You lose someone close to you and crap. Life goes on.

You receive a diagnosis that will change your life. This sucks but life goes on.

Someone you trusted betrays you. It hurts but life goes on.

A progressive illness progresses. You adapt and life goes on.

You are sick and tired of being sick and tired. Life goes on.

Simple Acknowledgement

Most folks who live with invisible disability or a chronic illness will tell you that it is hard for them to share with others when they are struggling. This may be because they always seem to be struggling and figure everyone around them is sick and tired of hearing about it. We don’t want to be labeled as a “bellyacher”. Maybe you only rant to someone close to you. Perhaps you write. Maybe you pray. You may have some type of “release” that allows you to vent.

Sometimes my frustrations get the best of me and I bellyache out loud. However, most of the time I keep it quiet or at most confide in a trusted friend who “gets it” on a level that others cannot. I have a friend with MS who once told me, “Denise? I always feel like crap. I can’t respond to ‘How are you today?‘ with, ‘actually I feel like crap!‘. So I respond the way all of us respond, ‘I feel great, how are you today?‘. I can’t respond truthfully. People who do not have MS cannot understand what it is like to wake up tired, go to bed tired, and hurt all over each and every day. So I lie and say, ‘I’m great! How are you?‘ I don’t think this makes me a liar. This is how I convince myself I’m OK. I try to convince others I am.”

You know? I don’t know very many people who live with significant challenges who want someone who will allow them to dump for hours each day. Griping for hours on end does not help physically, emotionally, or mentally. Most of us learn early on that perseverating on the negative only provides the ingredients for a significant meltdown. It is HUGE, however, to know we have a trusted peep or two that we can say, “Today is a bad day, but I’m going to be OK“.

Most of us simply long for a quick acknowledgment. Perhaps a short hug. I have a friend who has a seizure disorder and lives with chronic fatigue and pain whom I see about once a week. Like most folks, when we greet we say, “How are you doing?” I know this person well enough that both of us can say (on a day things aren’t going so well), “I’m not doing that great today, but things can only get better“. Or, “I’m not doing that great but I’m OK. Tomorrow will be better“. A pat on the shoulder and an understanding hug goes a long way. My friend doesn’t want me to grab her hand, drag her over to the side, and make a big production out of her “horrible, no good day”. If I say, “I’m thinking about ya“, or “How can I pray for you today?“, that is enough. You can see some of the tension roll off their shoulders. Simply acknowledging another’s pain or distress is A BIG DEAL. Salovey, Brackett, and Mayer (2004) call this empathy or emotional intelligence, and one can grow their EQ (emotional intelligence) simply by learning to acknowledge someone else’s feelings. It doesn’t have to be time-consuming. As a matter of fact, here are some great tips that will grow your EQ and help someone else:

1. Remember – and follow up.

Did someone tell you that they were having a rough day? The next time you see them ask them how they are doing NOW. By simply remembering they were going through a tough time and you care enough to follow up is HUGE.

2. Send a card.

My life has dramatically changed in that most of my correspondence is electronic. I buy one book of stamps each YEAR, when I use to buy that many stamps each month. However, I do shop for and keep inexpensive cards for “other” occasions (in other words, not birthday or anniversary), so that I can send a card off to someone who let it “slip” they are going through a tough time.

3. Follow up with a text.

It takes 10-15 seconds (depending on how many thumbs you have), to send a quick text. If you’ve limited time, don’t text an open-ended question. Just send off a quick, “Wanted you to know I’m thinking of you today and hope your day is better“. It doesn’t take much time and it likely means THE WORLD to that person.

A Significant Change in the Dream

Ok. I explained earlier that I do have one specific change that happens in my dream and over the years I think I have this figured out as well. Sometimes when I am “frozen”, a person or persons do come up to ICE CUBE Denise and Chloe, and try to help. Guess what? These are usually people I’m thinking about consciously, who are also going through something significant. For example…

I had this dream this past week after a fall on the deck. The injury was significant enough to warrant a doctor’s visit, x-rays, and a cancelled trip. I have been thinking about and praying for two specific people, both of whom showed up in my “falling dream”. One had surgery last week, the other is looking at surgery in her future. Both came and patted “frozen Denise and Chloe” and told my icy self that “everything would be OK”.

You know what? Having a support group MATTERS.

It doesn’t mean that you need to join an organization (although there are benefits to doing so). It does not mean you need to find a group in which you stand up in a circle and say, “Hello. My name is Denise and I have invisible disabilities“. However, there is significant HELP in having a person or two who GET IT.

A tribe.

People who understand where you are coming from when you experience your life – your “normal”.

Thankfully, it is fairly easy to find those folks. The Internet has opened the door to really connecting with others who are like-minded, live what you live, and provide support simply because they truly GET IT. Maybe you have a friend or confidant who is that support for you, but they don’t actually share your diagnosis. But folks? Everyone has something. Life is hard. We all have difficult times. The two folks who showed up in my “falling dream” last week do not share my diagnosis. They do share living a difficult life but PERSEVERING. That’s why these folks show up in my dream. Support makes a difference.

You can be that kind of support. It will grow you. It may be time consuming at times. You may find a reciprocated “shoulder”. You may not. I don’t know about you, but at the end of my life I want to be the kind of person who patted a few ice cube people. I want to be that person who tells someone THEY matter. What they are GOING THROUGH matters. One of my dream goals is to eventually see a puddle under every person in my crowd.

Because we all deal with something.

We can help each other to thaw out by caring, listening, hugging.

Denise Portis

Psychology Campus (2004-2008). The possible meanings of dreams. Retrieved August 11, 2014 from http://www.psychologycampus.com/dream-psychology/

Salovey, P., Brackett, M. and Mayer, J. (2004). Emotional intelligence: Key readings on the Mayer and Salovey model. New York: Dude Publishing.

Tartakovsky, M. (2011). How to Analyze Your Dreams (And Why It’s Important). Psych Central. Retrieved on August 11, 2014, from http://psychcentral.com/lib/how-to-analyze-your-dreams-and-why-its-important/0005975

Turn On Date

Published on August 4, 2014October 25, 2014 by hearingelmo3 Comments

One of my favorite discussions to have with people who have chronic illness, invisible or visible disabilities, or living a “new normal”, is sharing stories of how their adopted vernacular throws others they communicate with for a loop. We probably all have stories to tell. If your life is different because of a surgery, technology, or diagnosis, you may be using words and phrases that confuse and irritate folks who don’t live a similar life. I try to be careful and take a quick look around at WHO I’m talking to when having a conversation, but that is after really screwing up a lot in the early years. Here are some of my more memorable screw ups:

Your Turn On Date

Johns Hopkins sends folks my way when they are considering a cochlear implant, especially if they have Meniere’s disease as well. I have learned that when talking to someone new to the idea of cochlear implants, you cannot talk to them like someone who has already had the surgery. Cochlear implant peeps throw around terms that make perfect sense to US, but not so much to others. Case in point: I met with a lady with Meniere’s at a library who was investigating cochlear implants. At some point in the conversation I said, “Now the date you are turned on, you need to have a designated driver if possible. Everything will be so strange and you may not be able to drive safely if you don’t have someone to drive for you after you are turned on“.

Her eyes got big and she paled. She stuttered out, “Wha…wha… WHAT!?!?” I’m savvy enough to figure out by the way she answered that she didn’t understand my terminology. I thought I’d clear it up but succeeded in only making it worse…

“Yes, when you go to the audiologist and they turn you on…” I stopped. Seeing her dropped jaw will silence me. I backed up and tried again, using “activation date” instead of “turn on date”. Do you know something? Unlike others who meet with me, she never followed up with post-surgery emails or meetings! <BIG GRIN>

I Lost My Ears

I had only been activated 8 months when I lost my ears. Now for CI folks, they get that when we talk about our “ears” we are talking about the external technology… not about our “listening appendages”. I was in a super Walmart, looking for a very specific jar of dill pickles (because yes… I’m that picky), when my cochlear implant – which has a magnetic coil to keep it on my head – flew off my ear and into the pickles.

Had I stayed still and searched the immediate jars I would have found it right off. As it was, being new to “hearing again”, I immediately stood up and screeched because my world had suddenly and completely gone SILENT. An older lady shopping amongst the same shelved pickles looked at me strange. I nervously picked up jars of pickles looking for my “ear”. The lady came closer and joked, “Are you pregnant?“. I turned to her with big tears in my eyes which made her come closer and immediately quit teasing me.

“Are you OK?” she asked kindly. I looked at her and wailed, “I lost my ear! I can’t find it!”

She looked at me bug-eyed and walked away. Quickly.

Thankfully I found my CI attached to the metal lid of some nearby olives. No wonder I couldn’t find it amongst the pickles.

I’m Not Turned On

When we lived in another part of Maryland, we use to have to drive a long way to go to church on Sunday. We actually went into another county to do so. Normally my family doesn’t listen to the car radio because they know that I’m totally incapable of tuning out the radio and hearing just the conversation. However, on longer trips, I often say, “I’m turning my ears off” so that they can listen to the radio and they know if they need me they only need to tap my shoulder. In truth, it is nice being able to sit in “total silence” from time to time. It is certainly conducive to “deep thinking”.

So one Sunday on our way to church, I gave the family heads up that I was going silent on purpose. I must have moved from “deep thinking” to day dreaming. We got to church, got our stuff out of the car, and Terry and I waved goodbye to the kids as we headed over to the building where we had small group Bible study. I’m still deaf at this point and I couldn’t tell ya if Terry was talking to me. I know my mind was somewhere else – that’s for sure! We went into the classroom and sat down at the big table. Some other couples were already there. One of the ladies leaned up so that she could see around Terry and said something. It was then I realized I still hadn’t turned my cochlear implant back on. “Oh! Wait, I’m not turned on!”

I reached up and punched the correct button and looked around at a bunch of stunned faces. Terry was actually embarrassed. (If you know Terry, you know he rarely gets flustered). A few who caught on a little late began to snicker. Me? Well I thought it was just HYSTERICAL. So I managed to get out in between laughs, “Oooops. I need to find a better way to say I don’t have my CI on“. Terry quickly said, “Yes Denise. Yes you do!“. It took a number of months for me to live that one down.

Remember Your Audience

Do you live with a chronic condition or acquired disability? Have you become an expert in navigating your “new normal”? Can you “talk shop” with the rest of your population?

It’s hard to remember that just because WE understand what we mean, others may not. We tend to use words and phrases that become a part of our vocabulary. Try to pay attention to your audience. A good advocate learns to do that. You may have to deliberately choose to use a different word or phrase if no one really connects with it but you. For example, I had to stop referring to my bright purple cane as “my third leg”. I’m fairly naive and had no idea the shocked looks were from folks who had heard that phrase in a completely different context.

In order to really educate and advocate, you need to use terminology that the general public will understand. You may think a word or phrase is very obvious, but others may not ever hear that word in conversation. I was trained at Fidos For Freedom, Inc., to know how to advocate for accessibility with my service dog. The trainers didn’t tell us, however, that not everyone in the general public knows what the ADA is! (Thankfully, they also equipped us with great little brochures and handouts with the law explained on them).

“Fibro fog” may only mean something to other folks with fibromyalgia. “CFS zombie” may only be a phrase others with chronic fatigue syndrome use. HoHearies can be figured out by most of the population, but is only self-identified by those who are hard of hearing. The general public may even make incorrect associations just because they don’t understand your chosen words. I had no idea anyone would ever think “tinnitus” was something caused by a cut from a dirty tin can.

You are a more effective advocate when you “consider your audience” and appropriately explain symptoms, treatment, and diagnosis. The goal is to educate after all. If you only succeed in confusing those around you, you haven’t really helped to educate.

What’s REALLY fun is when those closest to you start to confuse others as well. Terry often asks if I “have my ears on” now.

Denise Portis