Monkey See, Monkey Do

I've always been an "expressive mime" and mirror people's facial expressions!
I’ve always been an “expressive mime” and mirror people’s facial expressions!

My kids were the first to ever mention it to me. However, since that revelation a number of people have told me, “Denise? You mimic every facial expression I have!”  Some said so with exasperation, and some with amusement. My daughter, age approximately ten-years-old, interrupted herself describing something funny that happened in a class to exclaim, “Mom! You crack me up! You make the same faces I do when I talk!”

Sort of like “monkey see, monkey do” I suppose… but not because I was learning through observational learning or imitation. Instead, as a person with hearing loss, I carefully watched the facial expressions to better speech read and pick up more than I could by simply hearing pieces of words.

It’s different than being empathetic. I know because I’m one of those folks who will laugh with you and cry with you. Yup. Literal tears and equal sobs and hiccups. Don’t get me wrong! I’m sincere! I just get very emotionally involved in communicating and have been known to laugh, cry, or “blow my top” just in commiseration!

I “hear again” fairly well now. I’m bi-modal – meaning I have one cochlear implant, one hearing aid, but AIDED in both ears to better hear. Ideal environments are one-on-one in quiet places. I hear well with only some necessary clarification even in noisier environments. However, despite hearing better, I still have the habit of mirroring people’s emotions and facial expressions.

I learned ASL long before I lost my own hearing. I had some friends in college who were culturally deaf… and this motor-mouth wanted to talk to them. Most people who are late-deafened never learn ASL. (Why? They were born hearing and likely most of the people they know are verbal communicators). However, ASL is actually made up of three things: sign, facial expression, and body language.

So perhaps that is why I mirror facial expressions. More likely? My best guess is that people with hearing loss have a need to really focus, really TUNE IN when communicating. Sure, we speech read to a degree, but we watch people’s faces too. Are they smiling, scowling, surprised or crying? These facial expressions matched with what we CAN hear, help us to determine the overall content of what a person is communicating. So guess what? If you know someone with hearing loss, it can greatly benefit that person for your face to match your mouth.

Sarcasm is a Problem

How do I know this can be a problem? I have a sarcastic son. As a matter of fact, my daughter has been described as having a dry wit. My husband? KING OF SARCASM. It can be really hard to communicate if their face is saying one thing (or nothing at all…) and their mouths are saying something else. Even “hearing again” as well as I do I was taken aback by a conversation I had on the training floor at Fidos For Freedom recently.

Steve (name changed), a fellow client and new buddy of mine, came up to me in his scooter with this big signature smile on his face. “HEY! (What can I say… I’m exuberant!) How has your week been!?”

With huge smile and sporting numerous dimples he responded, “Hi, Denise. Hi Chloe. I had a really bad week!”

I paused a moment. Then a second moment went by. I was confused. In this big cavernous training room with numerous sounds competing with what was coming out of his mouth, his face did not match what I thought I heard.

“Ummmm.” (Yeah. I’m eloquent).

Thankfully, he took my pause as permission to elaborate. It only took another sentence or two for me to realize – yes. He HAD indeed had a bad week, but ever optimistic, positive-thinking young man that he is, wasn’t going to let that stop him from smiling and enjoying his training and friends at Fidos For Freedom.

Another example of mixed signals:

In class today a student rushed into class a few minutes late, causing me to skitter out of the way before I was knocked flat. Big smile on her face, she stopped with big eyes and eager expression to spout, “Crap. Crap, crap, crap. I could kill myself!”

Again, tempered with years of experience I intelligently responded…

“Ummmm.”

“We have a quiz today, don’t we? Crap! I forgot!”

Thankfully people do tend to continue, helping to CLEAR UP that initial confusion. It is a much tougher situation when you get mixed signals and then they pause waiting for a response. You know that terrifying look? Shoulders turned slightly towards you with eyebrows raised and expectant look? (When I see it the blood rushes right out of my face!) Then I have to ask for clarification, “Could you repeat that?”

Many times mirroring another’s expression can be very helpful. If they look concerned and you mirror that concern, it may clue them in you are taking something they are saying seriously – when perhaps it is NOT. I’ve had friends pat my shoulder and say, “Relax. I’m kidding”

Being willing to ask for clarification is key. People with hearing loss cannot be afraid to admit you did NOT get it. You don’t need to complain. You don’t need to “ticket” repeat offenders. No need to point and loudly exclaim, “Everyone look at this person! They are expressively dyslexic!” (Ok, yeah, I made that phrase up).

Instead, just say, “Oh wow. You know what? I didn’t hear that right because your expression doesn’t match what I thought I heard”. That’s enough! In the end… you just may assist helping others become more expressive, genuine communicators. Hey… we can dream, right?

Denise Portis

© 2013 Personal Hearing Loss Journal

 

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Unplug…

unplug

In today’s world of media overload, with technology and electronics in every household, the word “unplug” usually means when an individual deliberately steps away from these items to recharge.

For many with chronic illness or invisible disability, to unplug might mean something different. Saturday night my small living room was seething with emotions. There were five adults, including myself, parked around a television watching the Ravens beat the Broncos. We had hoped. We had prayed. But all the experts had convinced us the Ravens didn’t stand a chance. To watch the game unfold and the Ravens take the win in double overtime, my senses were in crippling overload. Long ago I conceded using closed captions during a NFL football game. I admire and appreciate the hard work of those who work for the captioning organizations, but the captions really do interfere with watching sports as there is no “perfect” place to put the captions and not cover up a play or stats. So I was watching the game by only utilizing my cochlear implant and hearing aid.

I watched five minutes of the post-game show and quietly headed upstairs. Once in my bedroom, I flipped on the light and opened my Dry ‘n Store in one practiced motion. Off came my “ears”, off came my shoes, and I threw myself onto the bed with all the grace of a wet noodle. Chloe hopped up and snuggled close, perfectly content to escape all that testosterone downstairs. I think I laid there with my eyes closed for an hour – not napping – just coping. I needed the quiet. I love my bionic hearing, but there are times I literally suffer from sensory overload. My eyes, ears, brain, and yes VOICE were worn out. I needed to unplug.

There have been times I have pushed through that feeling of “I need to unplug” and only regretted my choice to do so. I am more prone to fall when worn out. I miss things when communicating. My speech actually deteriorates when I reach the breaking point. Hearing takes work – at least for me it does. You might not be able to tell by looking at me that I need a “senses” break because hearing loss and Meniere’s disease are both invisible. Goodwin and Morgan (2012) explain that, “many chronic illnesses have highly variable symptoms that are largely invisible to others. The symptoms can cause fatigue and pain, affect cognitive function, create sudden emotional shifts, and even impair speech (para. 6). It is in my best interest to know when I need to unplug.

I know many people with hearing loss who unplug in their own way. One bilateral friend takes long walks with just her camera. She has a real knack for connecting with nature and sharing that connection through her camera lens. I suspect it is her way of unplugging. She may have her “ears on” still, but nature’s melody is a distinctly different sound than what one hears in a crowded cafe or work environment. Another friend with bilateral cochlear implants actually takes yearly retreats. She not only unplugs, she truly isolates herself in order to fully rejuvenate and refresh her soul. Many with hearing loss, however, simply go to bed early. It doesn’t bother me at all that my family teases I’m the first one in bed every night. I require a full eight hours of sleep – hard to do in the day and age in which we live!

Use a Calendar

My calendar is very important to me. However, it is not because I forget appointments if I don’t schedule things carefully. My calendar is actually a tool I use to help me know when to unplug! By carefully tracking what I do in addition to just a normal workday, I can avoid serious physical and mental fatigue. Having Meniere’s disease means that I have to be responsible for how tired I allow myself to become. If I’m seriously fatigued and weak, I am more susceptible to falls and injury. With my doctor’s recent warning ringing in my ears about doing everything in my power to avoid anymore head injuries, I carefully plan each and every week. Many people with various disability or invisible illness must do the same. The Multiple Sclerosis Foundation Medical Advisory Board encourages us to be careful planners. “Conduct an energy audit. Ask yourself how much energy do I have? What time of day do I have the most energy? What time of day do I have the least energy? What do I want to do? What must be done? What can wait? Keep a journal and record your daily activities along with the times that you do them. This will enable you to recognize your patterns of fatigue more readily. Monitor these patterns and plan your day accordingly” (MS Foundation, 2009, para. 14).

When I see that a day is as full as I dare allow it to become, I block off any other available times. I know I will need the latitude to unplug if needed. I may even have to turn down opportunities to visit with a good friend, or going to something I would really like to do. My calendar enables me track what I know I’m capable of doing in any given day.

Using a calendar can also help people with invisible disability or chronic illness to determine what is really important. I have become an expert on running errands… making sure to do things all in the same area of town so that I do not have to make any special trips – which are time thieves. Having to do spur-of-the-moment errands may mean I do not get to do things that are really important to my mental, emotional and spiritual health. Morgenstern (2008) is adamant about controlling your schedule, and failure to do so creates a life that not only runs you ragged, but regularly throws you curve balls and prevents you from focusing on the things that matter most. For those of us who live with disability or invisible illness, this may mean we set ourselves up for injury, debilitating fatigue, mistakes, or relapse. Getting control of your schedule can only benefit you.

I hope you have learned to unplug when needed. One doesn’t need to lay in the dark, isolated from all sense-sapping triggers. You can relax on the deck with a cup of coffee. Take a bubble bath! Read a good book. Immerse yourself in a hobby. All of these things can help you unplug and recharge!

Denise Portis

© 2013 Personal Hearing Loss Journal

Goodwin, Stephanie A. and Morgan, Susanne (2012). Chronic Illness and the Academic Career. American Association of University Professors, May-June. Retrieved January 12, 2013 from http://www.aaup.org/article/chronic-illness-and-academic-career#.UPQg_mdyHTo

Morgenstern, Julie (2008). SHED your Stuff, Change Your Life. Fireside Publishers, New York.

Multiple Sclerosis Foundation (2009). Fighting Fatigue. Coping with Multiple Sclerosis, July issue. Retrieved January 14, 2013 from http://www.msfocus.org/article-details.aspx?articleID=48

Cut ‘Em Some Slack

At the October 2012 Stroll 'n Roll Event
At the October 2012 Stroll ‘n Roll Event

Every once in awhile, something happens that really “jerks the rug out from under me” in regards to disability and invisible illness. Hearing Elmo, numerous support and community service groups, and strong connections with others who GET IT, usually keep me cruising along with optimism and a healthy passion for life. However, once in awhile something may happen and I ALLOW it to undermine my confidence and throw me for a loop.

About a month ago I was at church and turned to walk out of a small group study into the foyer. A person I see every single Sunday stuck out their hand and shook mine saying, “Is this your new dog?” Because I have a hearing loss, I default to a specific response when I hear something that I know cannot be right. I’m desperate to clear up what my ears MUST have misunderstood so I am eloquent in my response:

“HUH?” I asked with big eyes.

He repeated, “Is this your new service dog?”

I stammered and was able to eek out, “No, I’ve had Chloe for almost 6 years now” and walked/wobbled away as quickly as I could. I could hear him still talking and looking uncomfortable (I’m sure I looked completely shell-shocked), but I wasn’t going to stand around and “play nice” when I felt truly sucker-punched! I made my way to the car and sat waiting for my husband, trying to make sense of what I’d just heard.

Prior to this I had missed a Sunday. Chloe had been sick one weekend (something that happens as she is in contact with so many things a pet is not) and having been up all night, I skipped church with her. Had this church leader asked this because Terry probably informed him I was gone because of a sick pup and he assumed much more than what was going on? If he sees me each and every Sunday, how do you not recognize the bright, red dog who has been my partner for almost 6 years? How in the world can someone get a specially trained service dog so quickly even if you DID have to suddenly retire another dog? Did he not know it took me 15 months of training to even get matched with Chloe? You don’t slap a vest on a pet dog and call it a service dog. These dogs are tested for temperament, trained for public access, and trained to perform specific tasks. It takes years and thousands of dollars! All these questions whirled through my head.

I’ll be honest with you and admit…

I WAS MAD. After that though I was actually very hurt. A couple of weeks later I finally ‘fessed up to my husband about what happened at church. Small miracle THAT to keep it quiet from him that long – but proof positive how deeply this had affected me.

There are some real perks to being married to a psychologist. Long story – short,  after discussing all the reasons this person must have misunderstood what was going on in my life, we agreed that some people just don’t get it. This doesn’t mean they don’t CARE. They just don’t get it. My response has to be – CUT ‘EM SOME SLACK.

Even though this person is in church leadership and sees me every Sunday, to my knowledge they do not have anyone close to them who lives with disability or invisible/chronic illness. I don’t think they even own a pet dog and I’m probably the only one they know with a service dog. We don’t hang out. I don’t share my life with them. (They don’t read Hearing Elmo – smile).

You are going to have people in your life you simply must, “cut ’em some slack”. Maybe they are a co-worker that you don’t work with very often – maybe only a couple of times a month. Maybe it is a cashier at a grocery store who you occasionally see when you are in her line; or, perhaps a bank teller, physicians assistant at a doctor’s office, or UPS man ringing your doorbell.

Don’t get me wrong. I’m the first one to encourage folks to educate in a proactive and positive way, how best to communicate, or assist (if needed). However, the people you take the time to share how best to interact with you, are folks you have a more intimate relationship with and see frequently. Close co-workers, friends, parents of your KID’S friends, people you see more often and converse with a lot… these are folks you are proactive with and to whom you communicate your needs. They very likely will care enough to ask YOU how best to assist or communicate. This means there are plenty of folks you’ve left out of the loop

on purpose.

They don’t need to know the details. You may have a relationship with them, but it is not a close relationship. I, for example, do not need to let a church leader know how long it took me to get matched with Chloe, nor how often we continue to train at Fidos For Freedom to polish and perfect our skills each month. We make eye contact and smile once a week. We may shake hands one or two times a month. This person does not need to know how badly he erred, nor do I need to take him to task for being clueless about something I’ve not invited him to know about regarding ME.

There are folks at work, church, and whom I interact with often enough that they have learned how best to communicate with me. It may be a friend inviting me over to her very quiet, empty house to catch up! It may be a nurse I see often at my primary care doctor who quickly re-reads the bookmark I asked to be stapled in my chart that reminds her I need her to face me. It reminds her I have Chloe so she helps me make sure Chloe doesn’t have her paws on the scale when I’m weighed (seriously, right?). It may be the lady I see every morning walking her dog who use to act hurt when she struck up a conversation with me and I didn’t hear her at first. Now she stands nearer and faces me and we talk about the weather or our families as we “potty our dogs” before heading out! It may be the friend in small group at church who knows I’m having a really bad balance day. As I sit in the back out of the way, she stops to confirm, “So if you pass out… I keep everyone from calling 9-1-1, and just get Terry, right?” It may be the co-worker I see every day while retrieving my mail from the Arts & Sciences department. Our boxes are next to each other and it stood to reason that I explain I only need her to get my attention first before speaking…

You know who needs to have a more clear idea of “who you are”. But there are plenty of people we need to cut some slack. We just do not see them frequently enough to take the time to give them our life story (smile). You know the difference. I’m not saying it is EASY when misunderstood. I felt mad, then hurt, then filled with righteous indignation, bent on educating someone who really isn’t a part of my life. I had to let it go.

I’m learning a life worth living is all about choosing the battles and knowing when to take a stand. We learn to determine who to take to task and who to cut some slack. We never stop learning!

Denise Portis

© 2013 Personal Hearing Loss Journal