Comparisons Are Rarely Healthy

This summer I traveled to North Carolina to attend my nephew’s wedding. Although we didn’t get to spend very much time while there, it was great to see all my extended family. My parents and 2 brothers both live there, and my sister traveled from Texas with her boys to attend.

Seth and Megan Burhenn
Aren’t they cute?

I can’t remember what started the conversation, but one evening we started talking about Q-tips. The discussion included snippets of all of us understanding that Q-tips were not to be used to clean ears (at least not down into the ear canal), yet we all used them for exactly that.

My mother chimed in and said, “Well that’s better than Bobby Pins! We use to grab a Bobby Pin to clean our ears!

I admitted that I could remember my grandmother carefully cleaning her ear with the rounded side of a Bobby Pin.

Essentially we sat around talking about the stupid things we know we shouldn’t do yet do them anyway. Ahem.

One Up

Later while I giggled to myself and thought about that conversation, I had to admit how silly it was to try to “one up” each other on STUPID THINGS WE DO.

All of us play the “one up” game.

We shouldn’t.

One day last week I jot down some notes to prepare for this post. It hit me that at the age of 51, I have now lived more of my life as a differently-abled person than I have as an able-bodied person. I was left scratching my head wondering why it is still so HARD?

Side note: One of the suck things about progressive illnesses is that the person finds themselves in a near constant state of adapting. You’d think it would get easier the more you live it, but it doesn’t. At least… it hasn’t for me. 

I’m trying to learn to stop comparing myself to others. It’s taken a lifetime to just be better about ignoring the temptation of the “one up” game. I’m still guilty of it occasionally.

I’ve been in a bad place. (Part of the reason I haven’t posted like I should).

I hate to write when I’m in a bad place, but I am going to try to just continue to be real, vulnerable, and honest. Life is hard and we tend to try to pretend it isn’t so that others will not be discouraged. *Cue “The Good, the Bad, and the Ugly” soundtrack*

When I start feeling sorry for myself, two things happen:

  1. I hear my mother’s voice in my head, “No one said life is fair, Denise“.

AND

2. I start trying to dig myself out of the self-pity pit by reminding myself that “so-   and-so”  has to live with this issue, or that one, and I don’t. “So suck it up, Denise!”

Deb is one of my best friends. She gets me. I can bellyache to her and not have to worry that she will think I’m a wuss, a coward, or whiner. She and I have some similar challenges, yet shoulder different ones as well. For example, I do not deal with chronic pain. I’ve always admired people who persevere and live a victorious life and yet deal with chronic pain. Deb is always quick to remind me that we shouldn’t try to improve our outlook by comparing our challenges with others. Our challenges are our challenges, period. (Pretty profound, huh?) It only undermines our own value to fall into the habit of thinking we should suck it up because we aren’t as bad off as someone else. By whose measurement is bad — bad? Our struggles are just as real as the next person’s. It’s OK to acknowledge a bad day. It’s OK to say, “I’m struggling. I’m discouraged. I need help”.

This kind of “comparison thinking” is especially harmful to those with invisible illnesses and disabilities. You don’t have to have an adaptive device on your person to prove you are a person who has been forced to ADAPT.

Service dog bookends. Milo (left), Chloe (right)

I am currently partnered with my second service dog from Fidos For Freedom. My first service dog, Chloe, entered my life in 2006. At the time, hearing loss was my biggest challenge. New to the cochlear implant and in the early stages of a Meniere’s disease diagnosis, I had more than one encounter in public where people thought I was Chloe’s trainer. Looking at me, it didn’t appear that I needed a service dog. I had not yet “blinged-up” my cochlear implant and hearing aide, and was not yet a wobbly weeble. When I explained she was actually trained to assist ME, people were surprised. Now that my balance is so significantly impaired, no one asks if my current service dog, Milo, is my partner. We should never judge someone on appearances alone.

One of my favorite extra-curricular activities is my involvement in SODA. A co-advisor of one of the college’s student clubs, SODA (Students Out to Destroy Assumptions), currently has just as many active members with invisible conditions as we do members with visible ones. Yet all these fantastic young adults adapt. They struggle. They are all samfferent (same + different… did you just roll your eyes?)

I don’t know if it is young adults in general, or THESE young adults specifically, but I believe they are really adept at valuing each individual person and not comparing themselves with others. My co-advisor and I may use the word “super hero” too often within this fantastic group, but truly each one is a super hero in their own right and might.

And so are you.

Denise Portis

©2017 Personal Hearing Loss Journal

 

Mitochondrial Disease in the News

Ruth and Gary Fox

I love having guest writers at Hearing Elmo because it helps all my readers understand and stay informed about various disabilities that, frankly? I have very little information and certainly a lack of firsthand knowledge. Ruth has written for Hearing Elmo before and I always welcome her contributions. For this post her husband, Gary, contributed as well. 


Mitochondrial Disease is in the news again, because of the battle between the parents and the English justice system over the treatment of little Charlie Gard. The form of Mitochondrial Disease that Charlie Gard has is extremely severe and very rare. It has damaged everything in his body to the extent that he requires medical life support to survive.

The core of mitochondrial disorders is energy.  Mitochondria is in every body cell (minus red blood cells) and is responsible for converting food to energy. When this does not work properly, it is call Mitochondrial Disease (or Mito for short). Mito affects everyone differently, depending on where and how the person’s mitochondria are affected.  Any body system that has defective mitochondria will malfunction and possibly progress to complete failure.

As a person with Mito, people have asked me what the effect of mitochondrial disease is.  For me, it means working with multiple medical specialist to maintain the function of weakened organs. Because the degree of energy and fatigue determines the rate at which my organs deteriorate, managing that energy level is my greatest challenge.

Some people use the spoon theory to explain life with Mito fatigue. However, my husband and I wrote another narrative that makes more sense to us. Instead of spoons, we picture a zero balance bank account.  Just about, everyone knows what it means to have a bank account and how the balance of that account affects his or her activities. They also know the pain of an overdraft charge.

A healthy person makes energy deposits into their account from food, rest and exercise and has energy left in their account at the end of the day to pass over to the next day.   People with Mito do exactly the same thing, but because their energy output is very low, their account drops to zero at the end of the day with nothing to share with the next day.

People with Mito know that all of their body’s involuntary organs like their brain, heart, lungs, ears, eyes, and digestive system need a huge portion of the limited energy they are able to put into their account.  The average healthy person is typically unaware of the energy use by their involuntary body systems.

After meeting the energy needs of their involuntary functions, using energy for self-care activities is next.   This includes things like bathing, brushing teeth, dressing, or eating.  Some people with Mito do not have enough energy in their account to do these things independently, and some can do them independently, but often need to rest to build up their energy account between tasks.

After basic self-care comes necessary health related appointments to the dentist, the primary care doctor, the endless specialists, therapy appointments, etc.   The person with Mito has to anticipate ahead of time how much extra energy these appointments will demand.  To avoid having their energy balance slip into the red, which means a Mito crash where involuntary body systems are short of energy and struggling to function, they spend days ahead resting more, and building up their account to cover that extra expenditure of energy.

Everyone gets health benefit from exercise.  People with Mito have difficulty with repetitive movement, as their energy accounts are often too low to replenish the energy used by their muscles fast enough.   Yet getting some exercise, even passive exercise provided by therapists, results in strengthening.  It takes considerable effort for people with Mito to balance their energy account with exercise.

Like every other functioning human being, a people with Mito, have the same desire to live independent lives as healthy people do.  This can mean parenting children, holding down a job, keeping up their home and yard, shopping, preparing meals, participating in religious activities, attending educational classes, enjoying leisure activities, and keeping up with friends and family.  Participation in these ordinary things are difficult, or even impossible, for people with Mito because their energy account balance is too low.

People with Mito can increase the balance in their account by careful budgeting of their energy.  They can chose to sit to perform their self-care routines, instead of standing as most people do.  They can use a mobility device to save the energy they would use to walk, to do something else.  They take advantage of seating that tilts to avoid using the extra energy that it takes to sit upright against gravity.  They can chose the timing of their activities to avoid extremes of temperatures, which will drain much energy from their account.

Finally, there are those unexpected life events that may totally empty a Mito person’s energy account:  mental and emotional stress (both positive and negative), illness and surgery.  A simple cold can be life threatening for a person with Mito, depending the amount of energy left in their account to fight it.  It can take days and even weeks for the person with Mito to replenish their energy accounts.

Though I cannot do everything, I want to do, and have struggles with my limitations; life is good, because I have learned by years of practice how to budget my energy. My husband helps too by taking on the more energy consuming activities, while I do the less energy consuming things in our household.  This way we can enjoy more of what life has to offer, together.

Ruth and Gary Fox


L. Denise Portis

© 2017 Personal Hearing Loss Journal

When You Want to Smack ‘Em With Your Cane

handicapped-restroom

When you are differently-abled, going to the bathroom can be a pain in the… well?

… BUTT.

If you are partnered with a service dog, it can make the process even trickier until you get a nice routine down. Likely, one of the biggest issues for all of us is ACCESS.

In the United States, public restrooms are required to be handicap accessible. For restrooms that have multiple stalls, the number of required handicap accessible stalls depends on the total number of stalls in that location. All must have at least one, according to the ADA.

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Milo, my current service dog from Fidos For Freedom, Inc., is a very big boy. A German sheprador, Milo is 80 lbs. of helpful tail wags. Between my wobbles, cane, and big boy helper, I require some room to use the bathroom safely. I will be honest with you, I use to get aggravated if waiting for a handicap stall, only for the person to exit and they looked perfectly fine to ME.

A student leader in the Anne Arundel Community College‘s SODA club (Students Out to Destroy Assumptions), reminded me during a particular scathing belly-ache rant, that not all disabilities are visible. I think it is great when student leaders can challenge long-time advocates, don’t you? Kudos.

So yesterday, I stopped in at the women’s bathroom prior to my Diversity Institute workshop, to find the bathroom empty with the exception of…

… yeah, you guessed it,

the handicap stall. I stood there (with legs crossed) and waited for the person to exit. I even took out my phone to appear less desperate. Milo’s ears perked up (indicating a toilet was being flushed), and I stepped to the side about a foot so that the person could exit safely. I didn’t bat an eye when the person who came out “appeared perfectly abled”. It is no longer my default judgment to assume the person didn’t need the larger size, rails, and access to the stall.

I was surprised, then, when the young woman, said, “Oh gosh. Sorry, I use this so I have more room for my book bag and didn’t think someone who actually needed it would be waiting!

I’m pretty sure my mouth dropped open.

I counted to ten and purposefully and deliberately maintained the position of my cane on the floor where it belonged, and said, “Yeah, there’s always a chance someone will need it who is waiting for the accessible stall!” I smiled (honestly! I did!) and scooted around her with Milo, closed and locked the door.

I was so mad I couldn’t pee. (Just bein’ honest folks!)

I have never had proof staring me in the face before. 24 hours later I am still processing it. My new default is a good one though. We cannot judge who uses a handicap stall even if there are other stalls empty.

Before you assume, remember:

  1. The handicap stall might be the only one empty when they came into the bathroom.
  2. Perhaps the other toilets are “nasty” or out of order.
  3. Perhaps it is a parent with a small child to assist.
  4. The person may have a genuine need for the stall. Some common invisible disabilities include:                                                                                                                  A) Anxiety disorders (especially phobias such as mysophobia, claustrophobia, and OCD) 

    B) Early stages of progressive diseases (MS, Rheumatoid arthritis, Parkinson’s, cancer, etc.)

    C) Digestive disorders (IBS, Colitis, etc.)

         D) Pain disorders (Fibromyalgia, Mitochondrial, and joint diseases)

         E) Chronic fatigue and related illnesses

F) Age related conditions

So… put the cane down; no clobbering innocent folks relieving their own needs.

BUTT… But —

For those of you who use the handicap stall even when there are others available and you prefer “more space”,

well… shame on you.

That wasn’t nearly as satisfying as busting someone up ‘side the head. I remind myself that I can be an unfeeling jerk and clueless twit about things I don’t understand. If we all learn to put ourselves in someone else’s shoes, the world would be more respectful and kind.

Denise Portis

©2017 Personal Hearing Loss Journal

This is My Fight Song

On “match day”, 2015.

The first time I heard Rachel Platten’s “Fight Song“, it was actually sung by a different  young woman who had faced a life threatening illness and “won”. You can find Calysta Bevier’s audition for “America’s Got Talent” HERE.

Yesterday, Fidos For Freedom, Inc. held its annual certification day. Service dog and hearing dog teams re-certify their skills and clients take a written exam. Milo and I passed with flying colors. While there, I was able to catch up with other teams. I overheard various teams refer to their service dog as their “partner in crime”, “wing man”, “partner”, “side kick”, “best friend”, and “best buddy”.

I’m a believer in the power of the human spirit. I have also seen many people who are differently-abled, dig deep and find the wherewithal to “just keep swimming” (as our friend Dory from Disney’s “Finding Nemo” taught us). At certification day, there is understandably some waiting in line. In an “all volunteer” organization, it takes a village of caring and committed volunteers to make certification day happen. However, clients do have to spend some time waiting for the next station to open up so that they can be tested on those skills. While waiting, I people watch. I’m easily caught up in emotion and found myself getting choked up looking around at various teams performing like super heroes. Can these individuals FIGHT without a service dog at their sides? Yes. I have no doubt. However, having a service dog makes each and every day a little easier.

It’s more than the skilled tasks they do, y’all! Milo retrieves dozen of items I drop each day. He is my alarm clock. He opens and closes the dishwasher, refrigerator, and gets clothes out of the dryer for me. He braces when I stand from a sitting position. He walks along side me and is only a touch away. Yet, the biggest benefit Milo brings to my life is psychological and emotional strength. Can I fight alone? Yes.

But I don’t have to do so.

Milo is with me 24/7. If I’m having a bad balance day, I go to work anyway knowing he’s got my back. If I’m dreading a large meeting, knowing in advance I will have trouble hearing, he provides the courage I need to do what needs to be done. I consider myself an advocate and “assumption destroyer”. However, Milo makes me a super hero. I think service dog partners forget those “under the radar” strengths our service dogs provide for us. On annual certification days, I am often reminded. Observing these teams and the trainers who coach/love them, brings these hidden benefits into startling clarity for me. We can count on other caring human beings to help and support us as needed. However, it is only a service dog partner that can be there ALWAYS.

I want to leave you with the lyrics and original video of “Fight Song”. I also am not ashamed to acknowledge that I found my own fight song with the support of a service dog. For me… it made the difference.

Like a small boat
On the ocean
Sending big waves
Into motion
Like how a single word
Can make a heart open
I might only have one match
But I can make an explosion
And all those things I didn’t say
Wrecking balls inside my brain
I will scream them loud tonight
Can you hear my voice this time?
This is my fight song
Take back my life song
Prove I’m alright song
My power’s turned on
Starting right now I’ll be strong
I’ll play my fight song
And I don’t really care if nobody else believes
‘Cause I’ve still got a lot of fight left in me
Losing friends and I’m chasing sleep
Everybody’s worried about me
In too deep
Say I’m in too deep (in too deep)
And it’s been two years I miss my home
But there’s a fire burning in my bones
Still believe
Yeah, I still believe
And all those things I didn’t say
Wrecking balls inside my brain
I will scream them loud tonight
Can you hear my voice this time?
This is my fight song
Take back my life song
Prove I’m alright song
My power’s turned on
Starting right now I’ll be strong
I’ll play my fight song
And I don’t really care if nobody else believes
‘Cause I’ve still got a lot of fight left in me
A lot of fight left in me

ORIGINAL VIDEO

L. Denise Portis

© 2017 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

Pretzels Baby…

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

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

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

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

Christina Ricci in Addams Family Values

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

My poor husband has a perpetual eyebrow grimace.

IMG_2843 IMG_2835

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

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

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

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

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

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

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

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

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

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

Denise Portis

© 2016 Personal Hearing Loss Journal

 

Polygamy and Practice

polygamy and practice

Do you know how many times polygamy has cropped up in my conversations? It’s super easy for me to hazard a guess because I have NEVER had a conversation about polygamy. I don’t watch “Sister Wives”, and know very few Mormons (and those I do – do not practice polygamy). So why… WHY would I bring the word up in a chance encounter? *shaking my head at myself*

I’m a creature of habit. I go to the same stores and the same restaurants. I’m super scheduled and my electronic calendar is near and dear to my heart. I’m color-coded. I’m organized.

Therefore, it’s no surprise that I tend to run into the same people at the places I frequent. I have shopped at the same grocery store for almost four years. You tend to run into some of the same people when you frequent a store. When you go everyplace with a service dog, it makes you rather unforgettable, especially with children. It’s no surprise that I see some of the same children in stores who have been curious about and thrilled with Chloe as I shop.

It shouldn’t have surprised me that a little boy I have seen a half a dozen times or more stopped me to ask about my dog. My new partner is Milo, a black shepherd/lab whose appearance is completely different than that of Chloe. Here is a recent photo of both Chloe (retired) and Milo (current). The picture isn’t that great which reminds me I need to work on getting some more “3 musketeers” shots!

Service Dog Bookends
Service Dog Bookends

This little boy that I see occasionally (whose name I DO NOT know – which embarrasses me as he knows my service dog’s name), looked at me with big eyes and said, “Where is Chloe and WHO IS THAT?” (Ya gotta love kids)

I replied, “Oh, this is my new service dog, Milo. Chloe is retired now and is at home sleeping on the couch”.

He looked very solemn and said, “So she still lives with you?

Oh yes“, I said. “She will always live with me. It’s just that Milo is my new partner!

He was quiet for a second or two and said, “So it’s like you are divorced and Milo is your new service dog?

I was so astonished by the seemingly change in topic I stuttered out, “Well… ummm…. no, not at all. Chloe and I aren’t divorced. I guess it’s more like polygamy and both dogs live with me now!

The little guy look TOTALLY CONFUSED, and I glanced up to see the HORRIFIED LOOK on his mother’s face. Ever want to just slap your hand over your mouth? I knew as soon as I said it that it was 1) totally inappropriate, 2) would take the mother all day to explain to her son, and 3) completely “off the wall”.

I made a mess of trying to back peddle (for people with balance disorders can do precious little BACKWARDS), and hurriedly made my way down the next aisle.

I stood in the international food section fussin’ at myself and nearly in tears for using such a poor analogy around a 6-year-old. I determined then and there I needed to PrAcTiCe PrAcTiCe PRACTICE what to say in response to “where’s Chloe and who is THIS?

Part of Good Advocacy is Practiced Responses

Being a good advocate and representative of “whatever ails ya” means you have good responses when someone asks questions. I have learned the HARD WAY, that these responses need to be rehearsed. When you are taken by surprise by either well-meaning, curious people or rude, snarky trouble-makers, you want to have a measured, helpful reply so that you advocate in a positive and helpful manner. I have found that if I don’t have a “canned response”, I tend to match the tone and demeanor of the person asking. This means that sometimes I am pleasant and in “teacher mode”, with great responses that educate and advocate on behalf of the disability community. However, other times I’m waving my cane in a curmudgeon’s face and informing them in no-uncertain terms how horrible they are.

At Fidos For Freedom, Inc., (where I trained for now – TWO – service dogs), we practice how to respond when encountering access issues. If you have a service dog, it is not a matter of IF you have access issues, rather WHEN you have access issues. It is easy to get flustered. It is easy to get mad. It is easy to say the wrong thing. Practice makes it much easier to respond with something that will actually help you and others like yourself.

Doesn’t it Suck that Many of the Rude Ones are “Kin”?

What is even harder is when the person acting incredulous and skeptical is someone you know well or are even family. I’m lucky that I have a very supportive spouse and adult children. Even so… it is hard to love someone with a chronic condition. Once in awhile, my husband (or kids) do not filter what they are saying, because they, too, are sick and tired of Meniere’s disease. I’m 100% certain my husband has rehearsed responses to commiserate appropriately so that he doesn’t spend the night on the couch.

(Holding an ice pack on my cheek, or head), “I’m so tired of falling and staggering around! What I wouldn’t give for just one day of no vertigo!

It must suck, honey!” is the rehearsed response so that “Yeah, I’m getting tired of taking off work to take you to the E.R.” doesn’t slip out.

It can really hurt when someone who knows you better than others “opens their mouth and inserts foot”. I recommend that even support people practice and learn how to deliver sympathy and encouragement.

You Will Still Blow It

Even if you practice measured, helpful responses to personal questions, you are still going to blow it from time to time. A couple of Sundays ago I was ticked off at myself for not responding kindly to someone and was thinking, “Denise! You’ve had this diagnosis for 2 decades! Exactly WHEN is it gonna become HABIT?

I sit during the worship service. It isn’t because I cannot stand. Folks are surprised when they learn that at work, I stay standing for very long periods of time. I actually MOVE very easily and with very little wobble. It’s standing still that is the problem. My world turns… counter-clockwise when I’m standing still. I love my church. They are very supportive of people who are differently-abled. We have a loop system in the auditorium for people with hearing loss. We have fully accessible bathrooms and classrooms. We have an elevator and a lift for people with mobility issues. In spite of this, I’m forced to sit during the worship service. My church puts the words to the songs on the wall using a projector. We have a beautiful stage and lights as well. The song lyrics are in a multi-media slide show with patterns, colors, movement and lights. Everything is color-coordinated and changes song to song. The freaky OCD person in me is in awe every Sunday. It’s gorgeous! But… I can’t stand. If I do, I’m fighting consciousness. It isn’t a problem, for I don’t mind sitting. I’m comfortable and SAFE. I learned that not everyone understands why I’m sitting, however.

An elderly person came up to me at the beginning of the service and asked me how to access the hearing loop in the auditorium. I removed my cochlear implant and hearing aid and demonstrated how to switch to t-coil. I get this question about once a month and I’m always glad to educate. I love the hearing loop and it has dramatically transformed church for me. I love answering questions to help others access this wonderful technology. So wasn’t I surprised by the encounter, but totally floored by the follow-up question:

So why are you seated during the music? I’m way older than you and even I can stand!

I don’t know if it was the environment, the timing, or the unexpectedness of the question, but can I tell you … I really took it wrong? I could FEEL the tension creep up my spine and I was mentally counting to ten and trying to diffuse the explosion about to spew out of my mouth. THIS ONE I hadn’t practiced for. I hadn’t run any scenarios through my head and out through my heart filter to answer a question like this appropriately. So I didn’t.

Wow. That was really, really mean. We’re done,” I said. The person looked startled, then uncomfortable and walked away. I think the last action was because I’m certain my look was murderous. I mean… I was MAD. (I later apologized).

Folks are gonna take you by surprise once in awhile. You will hear an insensitive comment from someone you weren’t expecting it from and it will just shock you into silence (if you are lucky) or cause you to say something you regret. It is best to be prepared.

Ummm… WHY SHOULD I?

Maybe you are thinking that if people are going to be insensitive and inconsiderate, that “why should I temper what I say in response?

Since we are on the subject… here are some “canned responses”:

1. You don’t want to sink to their level.

2. You need to be the mature one.

3. Kill ’em with kindness.

4. In the end, you advocate for all of us.

5. Honey attracts more bees than vinegar.

Well.

I happen to love vinegar. I mean… don’t get me started on pickles. There are few things I love more. Let’s be honest though… from someone who is differently-abled to someone who may also live with acquired disability, chronic illness, or invisible issues, “WHY should we be careful in our response?

(sigh)

Because it’s the RIGHT thing to do. Sucks, don’t it? I can tell you from experience though that it is much better to answer correctly and watch someone else squirm, than to have to apologize for “going off” on someone. Go practice, my friends! You’ll be glad you did!

Denise Portis

© 2015 Personal Hearing Loss Journal