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

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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).

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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.

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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

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When Rules Don’t Apply to YOU

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*tongue in cheek*  It ROCKS when a guest writer chooses to post here at Hearing Elmo. I welcome guest writers and if you ever feel the “itch” to write, email me at denise.portis@gmail.com  Today’s post comes from Milo-bear, my second service dog.  Let’s welcome newbie writer, Milo, to the blogosphere and trust that what he has to say can be echoed by many service dog teams.

I have working clothes. Don’t laugh… you have them too. I pretty much have a great time side-by-side with my human partner 24/7. However, when my working clothes go on — my vest — I am having fun WORKING. Oh… I also happen to be GQ handsome.

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Denise has had a lot of people come up to me that she does not know asking to pet me. When we know the person already, Denise actually likes for us all to say hello because I can be kinda aloof and she doesn’t really want that being a teacher and all. She draws the line at sniffing butts though so I have learned to lean, wag, and keep my nose to myself.

Sometimes though, a total stranger comes up and starts talking to me. One day last week at the craft store, someone came up and leaned down to talk to me totally ignoring Denise. If they had been paying attention, they would have seen Denise desperately gripping the shelves and trying to keep from wobbling as this person invaded our space. The stranger said, “Oh I just love working dogs. I have always wanted to see if that was something I could do… train working dogs. Oh my, you have a very cool vest pretty boy. Don’t you look handsome!?” Now – mind you – I couldn’t argue with the handsome part, but this gal was missing two important clues:

  1. My vest says “Do not Pet” and “Do Not Distract
  2. I neither speak NOR interact with strangers. They are STRANGE.

I was so proud of Denise! She hates to make people feel badly, and at times she puts herself at risk by not standing up for herself. Perhaps it was because she was wobbling SO MUCH, that she immediately chimed in on the tail end of this stranger’s gushing intrusion to say, “Yes, isn’t it a nice vest? Complete with patches asking you not to pet or distract him”. 

I would have high5-paw’d Denise, but hey… she was wobbling enough and I didn’t want her to do a face plant. The stranger kind of sputtered and backed away. Then with a huff, she turned on her heel and walked away. I yawned really big trying to relax and Denise scratched me behind the ears and talked quietly to me. I didn’t understand everything she said, but it was something along the lines of just wanting to shop without the drama.

Denise doesn’t partner with me to create drama. I’m her helper to reduce the drama. She wobbles less when I’m by her side. If she drops something I get it for her. And ya know something? My gal pal drops things A LOT. I’m ok with that because – heck. I get paid to just pick it up and give it back to her. I have the world’s best job. I do things that are super easy for me and get treats and affection for my efforts! If Denise  reaches for dropped items, she tends to end up on her butt – which I have to tell you is OK with me too because I can easily kiss her whole face when she is eye-level.

When I know someone, the whole scenario is different. For one thing, I don’t stiffen up. I usually start to wag like crazy. I just can’t help it. When I see a friend my tail just wags and wags. Denise releases the tension some on my leash and I can say a quick hello. When it is a stranger though, I’m nervous and she is nervous. I’m thinking, “WHY are they talking to me? Who IS this strange person staring at me and in my space?”

A couple of weeks ago, Denise and I had a break after a class. This was before the pant-’til-you-drop heat hit our area. We were sitting outside on a bench enjoying the sunshine. I was double-daring a butterfly to come a little closer, and Denise was checking her email on her phone. Some students came pushing and shoving their way around the corner and then stood right in front of us. Denise was a little startled, but continued to sit and check her email. I was SERIOUSLY uptight. I mean… they chased off my butterfly! Boy was I peeved. And then you know what they did? They all had their phones out and were jostling each other and pointing their phones at us. Here I was surrounding by all these noisy and rowdy strangers, and all of them were pointing their phones at us. My hair stood up and I made sure Denise could feel my tension all the way up through the leash. She looked down at me, looked up at the students and said, “Ummm. Let me guess. Pokemon GO?” They completely ignored her. Thank goodness they didn’t hang around long. I was starting to get really antsy. After they left Denise reached down to scratch my ears again.

“People can be clueless sometimes, Milo. Don’t let them bother you. I would have moved but DARN IT. We were here FIRST”. 

I sighed really loud and pouted about not getting that butterfly. I tell ya what, I just don’t get people sometimes. I worked my butt off all morning, showing Denise where sounds were coming from, picking up things she dropped, and standing behind her while she wobbled at the board. She calls this command “WRAP”. I just call it smart, because it only takes my touching her on the back of the legs to keep her from wobbling so much. Anyway, I worked my tail off this particular morning. Well ahem, not literally of course. I just wanted to rest a bit – and yeah ok. I wanted to eat that butterfly, too. Instead, rude strangers caused me to get my hackles up. SMH.

Some people don’t think the rules apply to them. It’s just common decency to not invade someone’s space, make a lot of noise, and point your phone at them. That’s a rule even dogs understand. When my pack mates put their butt in the air and wag their tails at me, I will come over and say hello. If they are laying still and have their face pointed away from me though, I figure they are staring down a butterfly. This body language and lack of eye contact means that I know to stay clear. Especially my older sister, Chloe. That girl can be Grrr-ummmm-py! She still does the kitchen timer alert for Denise, and let me tell ya… you better get out of that girl’s way when the kitchen timer goes off. I watch her body language. I know when Tyco wants to play and I also know when his legs hurt and he wants me to leave him alone. People need to just pay attention to my body language when I’m trying to help Denise. Better yet, they need to know the patches on my vest are rules to be followed. Not because I’m snooty. I have a job to do and can’t do it if you come into my space and act like we are best buds.

I know what strangers are. When Denise’s classes start, everyone is a stranger. However, the students that sit in the front are students I start to recognize. After a few weeks of class, sometimes when Denise is talking I will lean over and put my head on a student’s desk and make goo-goo eyes at them. They aren’t a stranger anymore. At this point though, WE KNOW EACH OTHER. They may laugh and tell me I’m a silly boy, but it doesn’t distract me because I know them. Even knowing me they don’t take advantage. They know the rules. Towards the end of the semester, Denise will take off my vest right after class. OH BOY! I get to say hello to all the front-row students. Naked=Right to Visit. I take advantage of any naked time I can get.

So I guess what I am trying to say is that I know seeing me where you shop, eat, or work grabs your attention. I thought I gathered folk’s attention because I am so incredibly handsome. I’m sure that’s part of it, but it is also because some people just love dogs. Let me tell you a secret though. One of the things I’m most proud of is that Denise shops, eats out, and works because I make that possible. She told me that before Chloe she was almost house-bound. She was scared to do anything because people would jostle her when she didn’t hear them and knock her down. After Fidos For Freedom, Inc., came into her life — first with Chloe and now with me — she went back to school, went back to work, and shops alone. Listen up though… if you are a stranger and invade our space and make a grab for me? Well Denise goes back to being in danger of falling really fast. That makes her nervous again. If we know you, it’s different. Think about it this way: Would you go up to a stranger and only talk to their kiddo, and reach out to touch them without asking? Sometimes I sigh and wish I could say, “AHEM. The eyes that matter are up HERE“, and swing to point at Denise’s face. Denise said, “eyes up here” is kind of kinky and doesn’t mean what I think it means. So I haven’t tried to correct anyone with that yet.

Rules are rules. If you see a service dog with a partner in public, it may be obvious at first glance why that dog is with that person. A lot of times, though, it may not be obvious at all. Just trust that a working dog is WORKING. If you do not know them, let them shop. If you do not know them, let them eat in peace. If you do not know them, let them work and do their job. Service dogs are like a piece of adaptive equipment. You wouldn’t pet Denise’s cane would you?

A specific exception for just Denise, is that if we know you it’s great to say hello to me and scratch my ears for a minute. Denise wants me to know that there are friends in the world and to recognize them. If I don’t know you though, how about you just let me do my job? That way Denise is safe and I can focus on why I am with her. If you have to take a picture of me, cuz seriously I’m drool-worthy, just be sly about it and don’t make a scene.

Milo-bear Portis

Successor dog extraordinaire

 

 

Misinterpreting

Misinterpreting

I haven’t had a chance to talk about Chloe, my retired service dog, much lately. The sweet ol’ lady has been retired full-time since May 2015. Chloe has not had a good year. Being together 9 1/2 years, means she was pretty set in her ways as to being with Denise 24/7. So if you take a loyal, hard-working hound dog who has done the same thing for almost a decade, retire her, bring a new dog into the pack who is now Denise’s partner, move to a new house, and have only a few things to do around the house for hearing alerts, a dog can just go a little nuts… which is what Chloe has done. Chloe is on arthritis medicine, which helps her arthritis a great deal. Being able to get around more comfortably means she is looking for stuff to do around the house. Chloe has developed an anxiety disorder, which could be the result of a number of things including age. She obsesses over things she decides is her job and continues until collapse.

We moved into a wonderful, older home, with NO STEPS! I fall once a week now instead of 2-3 times a day. Even for our two older dogs, Chloe and family dog, Tyco, the fact that we have no stairs is a plus as well! Our older home makes noises that our other home did not. We have an older HVAC system, gas heat and stove, a wood-pellet stove, and older wood floors. Chloe, retired hearing dog, believes every new sound she hears now is her JOB. So she will stand over heating vents and guard because there are strange noises coming from them. (We have checked for critter invasion, had the home inspected, etc., and this is truly just mechanical noises. The other dogs ignore the sounds completely). Chloe will stand “working” until her legs shake and she collapses. We were having trouble getting her to eat. A major vet appointment that included blood-work, scans, and over-all senior check-up, revealed nothing that would make us worry that this is anything other than an anxiety disorder. Chloe is OCD. She misinterprets what she is hearing and together with her other keen senses (like smell), seeks out the origin of the strange sound and does a perfect hunting dog “point”,  standing guard until she collapses.

Chloe is on meds and is doing better. She still guards shadows and obsesses over household noises. We are making it a priority for her to get out of the house more and “do things for mom and dad”. My husband and I discuss hound dog a great deal. She really means a lot to both of us. We know and understand the difficult changes she has had to shoulder, but also understand that she is hearing things well (she is a DOG and was trained as a hearing assistance dog)… only Chloe is misinterpreting what she hears.

The sounds are not important – but Chloe is escalating the sounds as a priority.

The sounds are harmless – but Chloe considers some of them a threat.

The sounds are minor “blips on the radar” – but Chloe equates them with cardiac arrest.

Misinterpreting

Have you ever completely misunderstood what someone said or misunderstood the behavior of someone?

WHAT? You mean you always assume correctly? Ok. Well you can quit reading. The rest of you feel free to continue…

As a person with hearing loss, I often misunderstand what people say. I work hard to consider the context, facial expression, and body language of someone speaking and I still BLOW IT sometimes.

Someone can yawn and cover their mouth and I will completely lose track of what they were saying.

My cochlear implant can pick up some random, ambient noise and I will miss what someone said.

I’ve even stood in the sunshine with someone while they squinted and wrinkled their eyebrows at the bright light, and missed that they were being sarcastic about something because their face looked MEAN.

I use email a great deal. If I have my phone out, it is to TEXT, not to talk earlobe to earlobe with someone. Because I do a great deal of writing, when I am misunderstood or misinterpreted in an email, it really hurts. I work hard at making what I write sound like what I SAY. That’s why y’all have to muddle through my exclamations and grammatical errors that emphasize how I would SPEAK something. (So thanks for that – <wink>).

Basically in misinterpreting… there are two scenarios. Either WE are being misinterpreted, or we are the one over-reacting and obsessing over unimportant cues. So what’s a person to do?

  1. You are being misinterpreted.

If you are being constantly misinterpreted, is it your problem or their problem? Really the responsibility goes both ways. If you are constantly being misunderstood, however, take a good hard look at the who, what, when and where.

Who: Do the same people always misunderstand? Maybe they are extra sensitive. Maybe they haven’t learned to see past the obvious to what you really meant. Are you sarcastic? Do you know some people just don’t GET sarcasm? They don’t appreciate it, don’t use it, and are constantly hurt by it.

My husband, son, and daughter speak fluent sarcasm. As a person with hearing loss, I had come to count on what I SAW when communicating. I finally had to explain, “Look y’all! Give me a smirk, eye roll, or something! If you don’t, you are gonna get smacked up ‘side the head!” I just don’t connect with sarcasm.

What is being misunderstood? Is it a subject others are passionate about? Is it a subject that is highly debated? (Is it an election year? <groan>) Are you being clear?

When are you being misunderstood? Is everyone tired? Are you being misinterpreted when everyone is rushed? Late?

Where are you being misunderstood? A friend told me once that she has learned not to talk about serious things during happy hour at a local bar. <grin>

Figuring these things out can be helpful and allow you to determine how you can be misinterpreted LESS.

2. You misinterpret others.

Especially because one of my “differently-abled” quirks is hearing loss, if I misunderstand someone I become rude. Not rude-rude, but interrupting rude. I stop whomever is speaking and ask for clarification. I may say:

A) I’m sorry, could you repeat that?

B) Excuse me… I thought I heard you say…     …  could you repeat that part?

These “rude” but necessary interruptions help me misunderstand and misinterpret LESS. If I wait to ask for clarification I may forget (but stay mad), or the person themselves may forget what they said.

What about if you are angered or hurt by something that someone WROTE? I still ask for clarification. Maybe even though I am searching the context or doing my best to “read between the lines”, I’m still missing something. There is nothing wrong with responding (better done in a private manner and not in a public venue) and asking for clarification. I don’t know about you, but I’ve written things before that were taken wrong and it wasn’t until someone asked for clarification that I realized how harsh something I wrote seemed to the people who were reading it.

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Sometimes? Sometimes people are just going to try really hard to misunderstand what you wrote too. It happens. I’ve learned to pick my battles. You cannot always expect someone to look for the best in you. Some folks look for the bad. Just drop it and go on.

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Change really isn’t hard

One of my offspring is a debater. The kid can argue the paint off a wall. It use to really bother me, but I never wanted to say “shut up, already”! I never wanted to act as if their opinion held no merit. I had to learn to LISTEN. Do you know my kid actually has a lot of really wonderful ideas, points, and opinions about the world? I drove him to lunch the other day and because we were each other’s “captive audience”, I got him all to myself for 20 minutes. My kid is more informed about politics than I am. If I LISTEN I have discovered he has a lot to say.

I use to misinterpret what he said all the time. I had to change. I couldn’t take sound bite snippets and judge him for being a ninny-hammer based on one comment. I had to learn to listen “in context” and wait until he had finished speaking before agreeing, or agreeing to disagree.

Some of you may be thinking… “why should *I* have to change the way I communicate?” Communication is the glue that holds all relationships together. No one communicates perfectly. We can all brush up on better communication skills.

Last week I was asking some questions about a video we watched and trying to get the students to “think like a scientist”. I saw a student grimace and shake their head. I stopped and said, “It’s fine if you don’t agree! I welcome everyone’s opinion and think it is important to express various views! Do you have another opinion about what we saw?”

They looked startled for a minute and sheepishly admitted, “No. I was making a face because someone farted”.

Oh.

You aren’t always going to understand perfectly. You are going to misunderstand facial expressions and other nonverbal cues. You, yourself, are going to contradict what you are saying by how you look or how you are saying it once in awhile.

My encouragement to all of us is simply to work harder. We can all learn to communicate clearly, hopefully creating less chance of being misunderstood. Communication matters because people matter. If you are a person with a disability or chronic illness, work hard at communicating your needs – and what you don’t need. It is much easier to “do your part” and then walk away in the face of persistent misunderstanding, than it is to share the blame for not having tried at all.

Denise Portis

© 2016 Personal Hearing Loss Journal

 

See — Look — Watch

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Last week I was in a different building with Milo, my new service dog. Early on, he was not a big fan of elevators. When you are a service dog trained to help mitigate mobility and balance issues, this is a serious thing. His trainer worked very hard with him to get him over his fear of “the moving box”. He now enters elevators with a tail wag and is confident and alert. Unless…

… he enters a new elevator. I forget to take things a little slower when we get into a brand new elevator. To Milo, “different” is not good, and should be approached with extreme caution. I suppose that is why when I entered the library elevator on campus, and Milo immediately dropped to the floor trembling, I was taken by surprise. I spoke to him with confidence and calm tones, and he was eventually standing by the time we reached the correct floor. Some students on the elevator with me said, “You are doing such a good job training him! I could never do that though… train a dog only to have to give it up after training”.

The elevator door was opening and everyone was filing out. I didn’t take the time to set the students straight because it wasn’t really important. However, as I walked around trying to find the study room my students were meeting in, I was thinking, “Didn’t they see my cane? Can my bling be any more noticeable? There isn’t any way I can make my invisible conditions any more visible. AAARGH!”

… and yeah. I think in pirate-speak at times.

I have to remind myself that we are all guilty of only SEEING sometimes. We forget to LOOK instead. Worse, we often do not take the time to WATCH.

See — Look — Watch

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So often we go throughout our day only SEEING. I’m guilty of this. I believe SEEING people is the equivalent of saying, “How are you today?” with the expectation of hearing the response, “I’m fine, how are you?” SEEING is going through the motions with our eyes. SEEING is inactive. We SEE, but we are not doing so with deliberation. We are not concentrating. The students in the elevator were seeing me, but they were not looking. Well… that isn’t altogether fair as they were likely LOOKING at Milo, but only seeing me.

LOOKING means you deliberately concentrate… you notice. LOOKING is active. I suppose it is a little bit like being in “search mode”. When we are LOOKING, we ignore distractions, and recognize more than the superficial “window dressing”. My friends Deb and Ruth are photographers. I’m trying to learn to LOOK when taking pictures and not just seeing something pretty.

I love teaching. However, everything I really love about teaching has little to do with the subject I teach. I love teaching because I really feel like I’m making a difference. Somewhere along the line I learned to LOOK at my students instead of SEEING my students. Perhaps I had good role models. Perhaps it is because I have felt invisible myself. Do you know in my head I say, “Here’s LOOKING at you, kid”… with my best Bogart impression? I don’t just SEE you. I’m LOOKING at you.

I remember reading Blume’s book, “Are You There God? It’s Me, Margaret” as a kid. I can’t tell you the number of times I have asked God this same thing… only I insert Denise. There have been times I have been angry and added some things like, “Do You even CARE? Do you really see me?” I don’t always deal with my “new normal” in a positive way. I struggle with depression. I get angry–even at God. I need constant reminders that He looks at me. He is watching me; that He does care.

My husband hasn’t been looking at me lately. I don’t mean this as a slam, and I’m not telling you something that I haven’t shared with him. He signed me up to go to a banquet/game night/workshop for Valentine’s day at our church. Many couples and singles will be there. I don’t go to things like this… at least not with people who do not understand disabilities. Three weeks ago I told him I wasn’t going… that he shouldn’t have signed me up. He asked me (nicely) to go… “I rarely ask you step outside your comfort zone“. We argued. I pleaded. Two weeks ago we repeated the conversation. One week ago we practiced redundancy. Yesterday, I said I would go, but I told him, “You aren’t looking at me. You see me, but you aren’t looking at me. If you were, you’d know that I’m suffering from panic attacks. If you were, you’d recognize the sleep walking I’ve been doing as anxiety“. Sometimes we see right through the people we love the most. We aren’t looking at them. (Because I recognize that being a chicken can isolate me from others, I’m trying to find my courage…)

Please know that I understand we cannot have our LOOKING eyes on all the time. That level of concentration is impossible to do during every waking hour. However, I do believe that we can do more LOOKING than SEEING.

Yes. It takes a little more time and perhaps more effort.

No. We don’t burn calories for our trouble (darn it!)

Do you ever WATCH others? It goes beyond looking and does take the sacrifice of time. In a world of “time is money”, few people perceive that they can afford to take the time to WATCH. I believe we cannot afford not to take the time to do some WATCHING. Our very soul depends on it.

WATCHING changes you. WATCHING often changes the world. It is only that level of concentration and taking precious, valuable moments to study what your eyes see, that any connection is made to your heart–where all change is born.

See — Look — Watch

Be deliberate in how you exercise your eye muscles.

Denise Portis

© 2016 Personal Hearing Loss Journal

Cowlicks and Compromise

cowlick

Cowlicks and Compromise

I have a cowlick. I remember the first time I noticed the little tuft of hair—likely no more than 20 hairs total, in my bangs. I was at my grandmother’s house who lived on the farm 1.5 miles west of our own farm. I was washing my hands at the sink, and could just barely see my face and head in the mirror above the sink.

<SIGH> “Lookit this hair! It won’t lay down! It points the wrong direction”.

My grandmother informed me that it was a cowlick. Astonished and more than a little bit worried, I gnawed on my lower lip as I contemplated this new information. Demanding to know the “when and where”, Grandma calmly informed that it happened when I was a baby. I remember thinking, “Who would let a cow lick their baby’s head?” Either Grandma was tired of my questions, or she could see that this greatly concerned me. “It’s like a blessing. Even the cows knew you had great potential. You can do ANYTHING!”

I know she thought she was encouraging me, and later it actually WAS the source of encouragement when I recalled her words. However, she likely would have cracked up if she’d known how often I struggled to wash the cow saliva off my head after that.

Dreams, Goals, and Aspirations

I was a lucky little kid. I grew up in a small town, surrounded by really good people and warm, supportive family members. I was always told that I was really going to be something one day… I was going to make a difference. Whether it was the school counselor assisting me with college applications, or individuals in my church, each time it was said I thought, “This cowlick is coming in handy!”

Obviously, I grew to realize the cowlick had nothing to do with my “can do” attitude, but that seed planted as a youngster, certainly added to my determination. I already had a hearing loss in my left ear as I headed off to college. I would have one more surgery during Christmas break of my Freshman year. I never considered my hearing loss an issue as I had perfect hearing in my right ear.

Compromise

I know that I am a little bit stubborn. It’s not just because I’ve been told that I am, I recognize that it is hard for me to compromise. I’ve learned to compromise, which has only helped my relationships and even my marriage. I think in the beginning I saw compromise as “caving”. Because I was raised to be a strong, independent woman, I didn’t see how compromise could be a valued characteristic. I think compromise is actually misunderstood a great deal; perhaps even, considered a weakness.

My favorite definition of compromise (because there are a lot of them out there depending on the context in which the word is used), is from Chen (2004), when “a person has to give up something less feasible and achievable in order to accomplish career goals and projects that are more practical and obtainable” (p. 17).

After losing the rest of my hearing (ages 25-30), and discovering that what I thought was a natural “clumsiness”, earning the nickname of “Accident Prone Portis”, was actually Meniere’s disease, I learned to compromise simply because I was forced to do so. I learned to use adaptive devices, technology, and even learned to ask for help. I learned that to be realistic, I needed to cross some things off my my “to do” list. There are some things I just cannot do. That’s ok. It doesn’t mean I’m giving up or “settling”. I do get tickled at folks sometimes when they email me to say, “You are so inspirational!”

I’m not.

Huffingpost Post did a terrific piece on this topic. “When we think about inspiration, what inspires us most are ordinary people who have done extraordinary things. We appreciate when someone has the ability and willingness to be selfless, creative, innovative, or just dares to be different” (Green, 2013, para. 1). I’m not this person. I have no more talent, will power—or even COWLICK POWER—than anyone else. I have really good days. I have really bad days. Just this last week I found myself doing a little “soul cleansing” in the shower (the only safe place to bawl my eyes when you have service dogs in the house who cue off your mood).

I was crying because I was mad. Mad, that I’m forced to change the way I do my make-up. (I know… right?). I’ve always thought my best “feature” was my big, brown eyes and dark eye lashes. When my Daddy finally allowed me to wear make-up I learned early on how to highlight what I thought was one of my best features. My husband told me when we were dating that he just loved my eyes and wrote poetry about my peepers.

With progressive illnesses, one discovers that it is just that.

Progressive.

It sucks. Between my poor balance, shaky hands, and neuropathy in my fingers, it is impossible for me to use eye make-up now. I’ve had to change—to compromise HOW to wear and apply make-up of any kind. This… THIS is what reduced me to tears for a solid week! Some of the folks who write me and tell me that I’m “inspirational” also say, “I find that I spend too much time feeling sorry for myself!” Y’all? I’m crying in the shower because I can’t wear eye make-up!

I’m not very hospitable, but one of the great parties I know how to give is a PITY PARTY. I think most people who live with special challenges and illnesses find that they spend an inordinate amount of time feeling sorry for themselves. One quickly learns not to whine out loud because others frown on that. Both God and my husband know that I’m a whiney-baby. Trust me – I get feeling sorry for yourself. If your “differently-abledness” has you feeling sorry for yourself, you aren’t alone.

Weiner, Graham, and Chandler (1982) did some fascinating research on pity, anger, and guilt. Anger and guilt are associated causes perceived as controllable, while uncontrollable causes of negative events trigger self-pity (Weiner, Graham, & Chandler, 1982). I didn’t choose any of the challenges I deal with on a daily basis. You likely didn’t “sign up for” the challenges you face as well! When things happen outside of our control, it is natural to have feelings of self-pity. Charmaz (1983) explains that the medical field tends to “… minimize the broader significance of the suffering experienced by debilitated, chronically ill adults. A fundamental form of that suffering is the loss of self in chronically ill persons who observe their former self-images crumbling away without the simultaneous development of equally valued new ones” (p. 168).

All of us grew up with dreams and aspirations. Some of us read books about having one year goals, five year goals, and ten year goals… working hard to lay the groundwork to make sure the goals were attainable. Instead, life happens. You may feel as if your life has been de-railed as you struggle to stay on track on a journey you had all mapped out.

The key is to compromise – but not give up. You may have to change the way you do things. I threw away all my eye shadow and purchased a magnified mirror and set up a means to steady my hand so that I can at least wear mascara. Other compromises are more worthy of being called “growth”.

Finishing school through distance education instead of doing so through a brick-and-mortar institution.

Using a cane and service dog to avoid running into quite so many walls each and every day.

Asking a student to follow-up with an email because I cannot hear them over the “buzz of sound” after class, and the acknowledgment that if they speak loud enough for me to hear them, everyone will hear.

Letting someone with normal hearing take the minutes of a committee meeting, even though my desire is to take notes.

Sitting on my caboose during the music in church because I cannot stand when the words are on a screen with lights, movement, and flashes. (Remember the good ol’ days when we used hymnals?)

 

Asking a family member to chauffer me around if I have to be out after dark (oncoming headlights trigger vertigo).

Using a cutting board ALWAYS, since not being able to feel your fingertips is dangerous when wielding a sharp knife.

Asking my service dog to fetch clothes out of the dryer so that I can fold them, even though I occasionally have to wipe doggie drool off of clean, dry clothing.

The KICKER compromise that many of us have to learn as a result of our new normal?

Asking for help to do something when we once did it all by ourselves.

When Do You Choose Not to Compromise?

A tough lesson in living a differently-abled life, is learning how to compromise by your own volition and to accept your own reality, and learning when NOT to compromise for others. Having a long-term blog on disability issues, invisible illness and chronic conditions, I have received one type of letter more than any other.

“My _______ (family, spouse, friends, co-workers) want me to stop using ________ (a cane, walker, service dog, assistive listening devices, medication) because it _________ (embarrasses them, makes them uncomfortable, makes me look bad).”

I wish I could reach out and SMACK UP ‘SIDE the HEAD, the folks who are saying this to you. They don’t realize all the compromises you’ve already made in order to successfully navigate your life and accommodate your new normal. (That’s right… you’ve resorted to mascara ONLY).

My friends? Don’t ever compromise… on chosen means of compensating just to make someone else feel better about your challenges. That isn’t compromise. That’s caving to a bully. Compromising by doing something differently in order to continue DOING means you are in control. Buckling to the pressure of someone who doesn’t live what you are living, will only yield bitterness, brokenness, and an unhealthy dependence. Do we need to ask for help sometimes?

Yes.

However, having a means of independence and being asked to give it up to help someone else deal with your issues is detrimental to your mental health and relationships. There are plenty of people who care about me that I have learned to not “talk out loud” around. They misunderstand the reason I’m belly-aching and offer selfish advice.

“You get so mad when people interact with your service dog. Why don’t you stop using one and find some other means to cope with your disabilities?”

This from a peripheral family member who:

  1. Is never around for me to ask THEM for help because they are in absentia nor have any meaningful intersection in my life.
  2. Is able-bodied (though mean spirited)
  3. Hates dogs

If using a service dog has enabled you to be more independent, then:

  1. Be more careful of whom you belly-ache too. Contact a fellow SD partner or a trainer.
  2. Find a way for the “drive by petting” interactions to become a positive advocacy channel.
  3. Join some face-to-face or virtual support groups with individuals who mitigate their disabilities with the partnership of a service dog.

I was recently contacted by the wife of a guy I graduated high school with in 1984. He’s coming up on the BIG 5-0, and she was looking for pictures “from way back” that we had so that she could use them at his birthday party and celebration. I took out some old yearbooks and began flipping through them. My senior yearbook had some great pictures of “all those from the class of ‘84”. In one section, the class voted on and selected one male and one female for specific “categories”. I was selected as “friendliest” and also “most likely to succeed”. (Don’t get any grand ideas… my graduating class boasted of 22 students). I sat there a couple of minutes wondering…

“Am I successful?”

“Did I waste my cowlick?”  

What I find valuable is making a difference, even if in only in one person. I have good days and bad days, but ALL days are lived where I look for and try to make a difference in at least one. It’s an adopted attitude that has really helped me adjust to being a person with invisible disabilities.

never-worry-about-numbers-help-one-person-at-a-time-2

Denise Portis

2016 Personal Hearing Loss Journal

Charmaz, K. (1983). Loss of self: a fundamental form of suffering in the chronically ill. Sociology Of Health & Illness, 5(2), 168-195. doi:10.1111/1467-9566.ep10491512

Chen, C. P. (2004). Positive compromise: A new perspective for Career Psychology. Australian Journal of Career Development. 13(2), 17-28.

Greene, R. K. (2013). What is the true meaning of inspiration? Retrieved February 1, 2016, from http://www.huffingtonpost.com/r-kay-green/giving-back_b_3298691.html

Weiner, B., Graham, S., & Chandler, C. (1982). Pity, anger, and guilt: An attributional analysis. Personality and Social Psychology Bulletin.  8(2), 226-232.

Where the People Aren’t

"I Wanna Be Where the People Aren't"
“I Wanna Be Where the People Aren’t”

I recently saw the above picture on FaceBook, and since I love “The Little Mermaid”, (and because I know cats can be SO “offended”), I found this VERY funny.

As an Introvert, I often want to be where the people AREN’T. I, and most Introverts, love people. However, folks misunderstand what an introvert, and extrovert are.

Heck.

There is even a newly labeled “blend” for those who exhibit both introvert and extrovert tendencies (lest others think we have multiple personalities, or Dissociative Disorder). Evidently an Ambivert, is one who has both characteristics, often in dependence on their role in that specific environment.

The difference between an Introvert and Extrovert, however, is simply how a person prefers to RECHARGE. It has nothing to do with whether or not they like people. Extroverts recharge by being around others. Introverts recharge by being alone.

All this thinking about “versions” had me contemplating how each dimension is effected by acquiring a disability. As a person who is differently-abled, my mind just “goes there” automatically when I think about personality characteristics. Who copes “better” with acquired disability? An Introvert or Extrovert (or Ambivert)?

“Version” affect

Interestingly, research shows that people who are extroverted are more likely to acquire a disability that limits mobility or results in chronic pain (Malec, 1985). Evidently extroversion can be equated with higher risk behavior and decisions that may result in injuries associated with motor loss/coordination or chronic pain. Introverts, too, are diagnosed with acquired disability, but often with diagnoses that are “non-traumatic” (Malec, 1985). This doesn’t mean Introverts are not involved in motor-vehicle accidents, or risky behavior that results in injury. The research simply shows that extroverts are more likely to choose activities that could result in these types of disability. Frustrated in my search for information regarding “version” types and acquired disabilities more like my own — those that are the result of genetics and/or “unspecified contributors” for deafness and Meniere’s disease, I continued searching the research databases.

I came across an interesting study by Noonan et al., (2004), called, “A Qualitative Study of the Career Development of Highly Achieving Women with Physical and Sensory Disabilities”.

BINGO.

I figured I hit the jackpot with this search and find! What I discovered, however, has nothing to do with a connection between “version” types and successful coping with acquired disability. According to Noonan et al., (2004), successful coping includes  “developmental opportunities (education, peer influences), family influences (background and current), disability impact (ableism, stress and coping, health issues), social support (disabled and nondisabled communities, role models and mentors), career attitudes and behaviors (work attitudes, success strategies, leadership/pioneering), and sociopolitical context (social movements, advocacy)” (p. 68). The difference between those who successfully cope and are extroverted and those who successfully cope and are introverted, centers around social support. An extrovert is more likely to identify and ask for help from any peers or individuals within their environment and in so doing actively engage in demonstrative advocacy. Introverts are more choosy about who they enlist support from, but are often “background” advocates. This is supported by research from Ellis (2003) in findings that include the difference in how extroverts and introverts enlist support, openly or privately – respectively.

“Version” Types and Assistive Technology

Having lived with special challenges for more than 31 years, I have had the (privileged) opportunity to meet hundreds of individuals who are differently-abled. Networking through organizations such as Fidos For Freedom, Inc., Assistance Dogs International (ADI), the Hearing Loss Association of America (HLAA), the American Association of People with Disabilities (AAPD), and numerous other organizations, I have met both extroverts and introverts who cope well — and some not so well — with acquired disability.

Some discouraging research does suggest that extroverts are more likely to use assistive technology and devices (Johnson, 1999).

This sucks.

I struggled for so many years with invisible disabilities and challenges, that my “epiphany” moment of changing that… making the invisible very visible, still gives me psychological goosebumps. My introverted life changed when I determined that I would embrace technology and assistive devices. I use bright canes, an assistance dog, bling up my cochlear implant and have informative brochures with me wherever I go. You’ll notice I didn’t say my introverted self became extroverted. I’m aware of and fully accept who I am – an introvert. Yet, using assistive technology and devices (and canine) has dramatically improved mitigating my own disabilities. Extroverts are more likely to seek “tools” early on in a diagnosis that incorporates an acquired disability (Wressle, Samuelsson, 2004; Kintsch & DePaula, 2015). Once introverts determine that the benefit of using assistive technology and devices improves quality of life, they, too, are able to embrace tools that improve life with the downside of making them (perhaps) more noticeable.

In closing, can I just say, “I LOVE PEOPLE”? We are different yet, are alike. We react to things differently and yet similarly. We all love dogs. 

Cuz… well, that just makes sense.

Denise Portis

© 2015 Personal Hearing Loss Journal

Ellis, A. E. (2003). Personality Type and Participation in Networked Learning Environments. Educational Media International40(1/2), 101.

Johnson, D. (1999). Why is assistive technology underused? Library Hi Tech News, (163), 15-17. Retrieved from http://search.proquest.com/docview/201534320?accountid=14872

Kintsch, A., & DePaula, R. (2015). A framework for the adoption of assistive technology. Retrieved on November 24, 2015, from http://citeseerx.ist.psu.edu/viewdoc/download?doi=10.1.1.124.3726&rep=rep1&type=pdf

Malec, J. (1985). Personality factors associated with severe traumatic disability. Rehabilitation Psychology30(3), 165-172. doi:10.1037/h0091027

Noonan, B. M., Gallor, S. M., Hensler-McGinnis, N. F., Fassinger, R. E., Wang, S., & Goodman, J. (2004). Challenge and Success: A Qualitative Study of the Career Development of Highly Achieving Women With Physical and Sensory Disabilities. Journal Of Counseling Psychology51(1), 68-80. doi:10.1037/0022-0167.51.1.68

Wressle, E., & Samuelsson, K. (2004). User satisfaction with mobility assistive devices. Scandinavian Journal Of Occupational Therapy11(3), 143-150 8p.

Cognoscente, Aficionado, and Cutting the Crap

The bunny is currently resting...
The bunny is currently resting…

It may or may not be news to you that I am in grad school. Part of the program I am in requires academic residencies. I just completed another one on Dec. 27-30th and there are few things I despise more.

It isn’t because I don’t enjoy the workshops and expert speakers. I do.

It isn’t because I hate the schedule. It’s hard, but I can do it.

It isn’t because I am not learning anything. I am.

Academic residencies are very tough for me because a lot of blow-hards attend and I consider myself lucky to exit the residencies having met one or two people who ARE NOT.

I’ll admit it. I am a bit of a loner. It isn’t that I don’t LIKE people. I do. As a matter of fact, I love people. However, if I have 30 minutes to eat lunch, I’m not going to go to a crowded restaurant, nor stand in line for a turkey sandwich that costs $11.00 plus tax. I’m going to pack my own lunch, sit in a nearly deserted room at the next location of a required workshop, and work on my homework while I regenerate. (Did I explain I was part Borg?)

On Sunday, a longer residency day for me, I was holed up in a large room eating my lunch and tossing Chloe’s pink bunny while completing an essay on boolean phrases (aren’t I talented?) Unfortunately, by day two, other people are also figuring out these empty workshop rooms are great places to eat lunch. Some of these people are talkers. *grimace*

I suppose an “off vest” service dog playing with her toy, wagging her tail like crazy,  and huffing quietly to me so I’ll throw it again, invites spectators and conversationalists. Sometimes I really want to PLAY DEAF. I cannot, however, for I feel a certain responsibility to be a good testimony and example of a “hearing again” person. So darn it. I am pulled into conversations.

“Oh this is great that you allow your service dog an opportunity to unwind. That is a great stress diversion instrument!” said a very well-meaning (I’m sure) observer.

I know I looked at her funny. I’m pretty sure an eyebrow went up. Unfortunately, funny looks and raised eyebrows invite further conversation.

“Will your dissertation be about the place of service animals in the lives of persons with disabilities since you are a cognoscente in this area? I know many of us who are scholar-practitioners are aficionados in our area of interest”, said the now expectant observer.

I may love people, but sometimes? Sometimes I’m not very good with people.

I snorted.

That’s right. It’s a good thing my sinus were clear because lord knows what would have flown out.

I pointed to Chloe who was currently rolling around “scenting” her pink bunny and said, “You know that is a slobbery toy? It’s not an INSTRUMENT. I am doing my dissertation on something I believe in and yes, know well because I live it. But let’s cut the crap on the big talk. It’s lunchtime and I’m relaxing so you don’t have to impress me. Heck. I hardly even know what you are saying!”

Are you as horrified as I was? I wanted to slap my hand over my mouth and then immediately apologize. What happened next had me exchanging emails and finding a new friend.

“Oh thank God. My partner tells me to cut the crap all the time. Don’t you hate feeling like you have to ‘play doctoral program’ when you are here? I mean we are all just trying to get done, doing our best to reach goals. Holy realist, Batman. Can I eat lunch with you tomorrow?”

(In case you are wondering if that is her quote, I can’t make this stuff up. I even emailed her later and asked to “quote her” in an upcoming post).

I howled with laughter. I mean, I had tears rolling out of the corners of my eyes. Chloe was a bit concerned but continued to take advantage of her off-vest playtime.

Stop Trying So Hard

In the years I have chosen to identify as a person who is “differently abled”, I have met two kinds of kin.

One group of folks I feel a certain amount of kinship with since they, too, live with a chronic condition, disability, or invisible illness, are commitment-aholics. They choose to be involved in everything – just to prove they can. (A friend wrote an excellent post about this – click here to read it). They work so hard at making sure they are independent, they smack the back of the helping hand reaching towards them.

They work so hard at proving themselves at work, they are over-committed to volunteer committees and focus groups. They strive so hard to show the world (and themselves) that they CAN, they do very little well. They bust their butts to impress us. The reality is they walk around with – erm… – busted butts.

My other “cousins” are people who refuse to participate in much of anything for fear of letting others down. Instead of learning what their own physical, emotional, and mental limitations are and living an abundant life within those boundaries, they isolate themselves and refuse to put themselves in a position that they may blow it. They get around making poor choices by choosing not to make any choices at all. Their souls are withering and they don’t even know it.

Use Your Talents and Skills. Just STAY REAL

We all have talents. These are gifts we are born with while a skill, on the other hand, is something we are good at because we’ve worked hard at being good at it. We can even take natural born talents, work hard, become skilled, and use these abilities in our personal and professional lives.

It is very important to use what is available (talents) and work hard (become skilled) so that each of us can make a difference (with our abilities). Yet, too many times we get side-tracked by making sure folks recognize what we are good at doing. Cut the crap. Be real, but be nice. Be who you are – which means at times you are wearing a cape, and other times you are asking for assistance. Share who you are (why keep abilities to yourself?) but be a humble expert in who you are. Don’t be an over-achiever. Don’t be an under-achiever. Just be real!

Denise Portis

© 2015 Personal Hearing Loss Journal