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.

texting

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.

being misunderstood

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

 

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.

Hearing Loss Valentines

hloss valentines

I’m reaching out on behalf of Cochlear Americas. We created Valentine’s Day cards for those in the hearing loss community to share with whomever they HEARt this Valentine’s Day. If you think the Hearing Elmo community would be interested in these cards, please feel free to share them!
How to access the Valentine cards: 
  • We have four Valentine’s Day cards that you can download, print, cut out and distribute directly from our Hearing Connections blog.
  • We will also be sharing the cards on our FacebookTwitter and LinkedIn channels. Keep an eye out for them to appear and share them digitally if you’d like.
Ways your community can use the Valentine cards: 
  • Print and distribute them in person or by mail with friends, family or colleagues.
  • Share them on your social channels.
  • If you have children, print for your child to distribute during their school Valentine’s Day party.

Denise Portis

Hearing Elmo

Does Not Play Well With Others

play

I hesitate to even post about this topic because I’m sure to get a little backlash about this viewpoint. Because of that, you will see interspersed throughout this written confession, links of scholarly evidence and citations to peer-reviewed articles that will lend a little more credence to what I’m about to say. I don’t want it to be just an opinionated article, after all!

Confession: I Don’t Play Well With Others

Now if my mother is reading this, she is likely “nodding her head in agreement” but that is because her clearest memory of me is the bossy older sister, not at all afraid to confront people (they call me Vina Jewell Jr. in my family), and stubbornly opinionated. However, when you grow up in a small farming community and go away to college, there isn’t much chance your mother will be able to get to know the adult you’ve become.

Don’t get me wrong. Mom and I talk weekly. But a FaceTime call is a great deal different than seeing someone day in and day out. However, the fact that I don’t play well with others as an adult has nothing to do with the negative characteristics I hope to have left far behind me in my childhood.

As a 49-year-old woman who readily identifies as being differently-abled, “playing” often means quiet, reflective time, or interactions where I’m present but only “just”–in that I do not have to interact with those around me. For example, my husband and I will watch a movie together once in awhile. I’m a reader. I write. I research (by choice and not because I’m a doctoral student). I love sitting on the deck and staring out into the woods. I love to cuddle with my dogs.

Now some who read that last paragraph may think that I don’t like people.

Wrong.

I love people, and enjoy interacting with others. I believe anyone I work with will tell you that I am an eager team player who throws herself into volunteer work with passion and gusto. You see… I WORK well with others. Outside of class, I proudly advise three different student clubs and participate in a number of faculty/staff committees. I love this work. I love the people I work with, too. However, I’m working – not playing. I’m one of the lucky ones in that as a person who is differently-abled, education is a great career. People with skills, training, and education in other types of careers are not as lucky. Many people with disability or chronic illness find that in their chosen career they face both exclusion and discrimination (National Disability Strategy Consultation Report, 2009). I am extremely grateful to be a part of the education community, for I rarely face these issues.

So what’s the deal with my not “playing well with others”? Well you see? The things I mentioned earlier that are ways I unwind, decompress, relax, and “flourish in my happy place”, very few people are willing to do alongside me. (And that’s ok…) I have a few friends that will “hang out with me” and “play” with no expectations. We do not have to do a whole lot of talking. We just “are” – and are comfortable in silences and quiet places. The problem is that none of these friends live near me.

Hearing Loss and Background Noise

It may be different for folks with other types of challenges. As a person with hearing loss, I can tell you that one of the biggest barriers to living a happy and productive life alongside of others, is background noise. Some folks think that background noise is the same thing as white noise.

It’s not.

White noise is a steady (and unremarkable) buzz of sound. If you are as old as I am, it would be like the “snow” sound on a television channel currently off the air. When I was a kid, my older brother and I would sometimes be allowed to stay up watching TV, and we’d eventually fall asleep. When I awoke, the television screen would have “snow” with a buzzy kind of static-like noise. Background noise, on the other hand, is any extraneous sound that is heard while trying to monitor a specific sound. For folks with hearing loss, that specific sound is SPEECH while trying to screen out other sounds (and perhaps voices) from the environment. If I could burn calories for every minute I communicate with others in the normal world, I would not be 25 pounds overweight.

Background noise is the enemy of people with hearing loss. This noise even diminishes our ability to concentrate and form both short-term and long-term memories (Rugg & Andrews, 2009). Kenneth Henry (Neubert, 2012), postdoctoral researcher at Purdue, uses the analogy of numerous televisions. For folks with normal hearing, it would be like turning on a dozen television sets on different channels and asking the individual to concentrate on one show. It’s hard. It’s not at all enjoyable. It’s not something someone would ever do by choice.

Yet people with hearing loss must consciously make the choice to reach out to others, invest their time, energy, and focus just to communicate! It’s hard to communicate in a world full of background noise. It’s worth it. It keeps us from being isolated. It keeps us connected to others. It may keep us productive and working. There is a price to pay, however. The price tag is limited options for “play time”. In order to completely eliminate the WORK in listening, one needs a quiet environment. Friends tend to text one another with suggestions such as:

“Hey! Want to meet at Ruby Tuesdays after church today and eat together?”

“Let’s go shopping!”

“There’s a meet-up at the local Starbucks for mom’s frustrated with their adult children. You should come!”

“A dozen or so of us are going to go walking at the park with our dogs. You should come along!”

“We are all going to go get a pedicure! We are meeting at 2 PM”. 

This is not my kind of “play time”. Now occasionally (OK… I’m exaggerating – RARELY) I will go out and do some of these things. However, there are very few people I can ask to participate in what I really consider “fun”. Even when I go out with friends from Fidos For Freedom with individuals who have various disabilities it is hard. When you do not hear well, you can be isolated even when amongst folks who really understand disability. Folks with hearing loss “play” differently.

“Hey girl! Come over and sit on my deck and watch the squirrels in the trees with me, will ya?”

“I know this great place in the woods near my home where two streams converge. It’s a great place to sit and read a book. I’ll bring the bug spray!”

“Let’s go sit by the Chesapeake and pet our dogs while we watch the ships go by…”

Having a hearing loss as an adult – even when it is “corrected” by hearing aids and/or cochlear implant, the individual is certain to have a co-morbid  auditory processing disorder. This creates all kinds of communication issues that make it extremely difficult to enjoy communicating. According to Whitelaw (2015) “These types of communication issues may include difficulty hearing in less than optimal listening situations, reliance on visual information to augment auditory information, a reduced appreciation of listening to music, and difficulty understanding speech when the speaker is unfamiliar” (para. 1).

I have special programs on my cochlear implant that reduce background noise and allow me to zero in on the person right in front of me. I rely on these programs. (There have actually been times in extremely noisy environments, that I swear I hear better than my normal hearing counterparts). Even with this wonderful technology, I still have to concentrate. It’s not fun. It’s not “play”. It requires recovery time later. Is it worth it? 

Well if it wasn’t, I would never leave home… and I leave home a great deal and for a variety of reasons. Just because I CAN doesn’t mean it is easy. I’ve been alive long enough to know that important things are not always easy.

How to “Play” with Someone with Hearing Loss

If you know someone with hearing loss, please allow me to provide some “playing pointers”. You will note that these activities often revolve around just being in the presence of each other. They are activities that do not require dialogue every second of your chosen “together time”.

  1. Board games: It’s OK, to laugh and “chit chat” over a great board game. But… turn off the TV. Don’t have background music going. If there are more than two people playing the board game, don’t have individual conversations. Every spoken word is meant for everyone present. This keeps the person with hearing loss from having to deliberately ignore the sound of a conversation not meant for them. Please don’t think that people with hearing loss can enjoy “game night” with a big crowd. The folks in my small group at church had a “game night” (with all in the family invited) one night and my first thought was, “just shoot me now“.

2. Books, reading, and discussion: Book clubs are great! That is… if the discussion group is meeting in a quiet setting while discussing the chapters that week. Sitting in the food court of the mall and discussing what you read that week = NOT A GOOD IDEA. If you like to read, ask to spend some reading time with a person with hearing loss. You read; you don’t talk. It is difficult to express how meaningful it is to simply be in the presence of another.

3. Walks, hiking, boating, and other “outdoorsy” stuff: These activities can be great for folks with hearing loss. However, many trails and parks and lakes have become very populated. This means that the person with hearing loss may have trouble hearing you if they cannot see your face. Imagine kayaking with a person with hearing loss. If the kayaks are facing each other they will do great. This also means you won’t get anywhere because two kayaks facing each other cannot move. So enjoy the time together but don’t try to tell them all about the problems you’ve been having at work. Enjoy the hike. Enjoy the quiet of the walk. Enjoy the sound of the paddles hitting the water – and the far distant sounds of other folks out on the water.

4. Movies: I’m a “hearing again” person. This means that I can go to a movie, watch it, understand it, and give it a Siskel and Ebert “thumbs up” or “thumbs down” vote — just like everyone else. This doesn’t mean I can converse about the movie as we exit with the crowd. This doesn’t mean I can walk all the way to the parking deck and discuss everything we loved about the movie. Give me a safe place to stop moving. Allow me to concentrate on the conversation.

5. Gardening, Fishing, or ART: I love gardening, though do precious little of it I’m afraid. I had a great little “deck veggie garden” this year but wondered why I didn’t feel the thrill of it like I experienced it years ago. I concluded it was because I wasn’t pulling weeds alongside my father. I realized I wasn’t thinning plants while with my grandmother just three plants over. Be willing to spend some quality quiet time gardening with a person who doesn’t hear well but enjoys getting down in the dirt.

Fishing can be a great activity.

Art, too, can be a great opportunity to spend some time with an artsy hard-of-hearing person.

Some great resources: LISTENING IS EXHAUSTING.

SOCIALIZING WITH HEARING LOSS.

Not Hearing Loss – but “OTHER”

What if your challenges are not hearing loss. People who live with disability, chronic illness, and visible or invisible health problems may still “play” differently.

As a person with a balance disorder, I cannot go to the fair at the county fairgrounds and “play”.

I cannot walk to the park and “swing” on the swing set while discussing heart-to-heart issues.

If you want to spend time with someone who has specific challenges, ask them what they like to do and meet them where they are – within the parameters of what is “fun” for them. They may have a really hard time meeting you for some “play time” when it will be WORK for them. Ask how to accommodate them. I promise you that they really do enjoy being with you.

L. Denise Portis

© 2015 Personal Hearing Loss Journal

Through the Eyes of a Newbie

Milo Cade - Fidos For Freedom, Inc., Service Dog.
Milo Cade – Fidos For Freedom, Inc., Service Dog.

Many of Hearing Elmo’s readers know that I retired my service dog, Chloe, this year. Since May 1st, she is enjoying retirement and still does some hearing alerts at home. She is happy, spoiled, and we believe well-deserving of all the naps and belly rubs she is currently receiving. I was recently matched with Milo, from Fidos For Freedom, Inc. Milo is a shepherd/lab mix and I am enjoying the process of being partnered with a mobility/balance service dog versus a hearing/balance assistance dog. We determined my primary needs are mitigating issues with Meniere’s disease and not hearing alerts. I love my cochlear implant, and feel like I have adjusted to the world of “hearing again” very well. My balance is, and will continue to be, a major issue. I suppose in a way, this is an introduction of my new partner, Milo.

One thing I have enjoyed is experiencing MY world (work, church, walks, etc.) through the eyes of a newbie. For Milo, everything in MY world is new. He looks at everything in awe. If he isn’t looking in awe, he is sometimes in “investigation mode”.

Is it scary?

Is it freaky?

Is it edible?

Is it alive?

What does Denise think?

At a training session with my trainer a week or so ago, I brought Milo to one of my classes. I had allowed enough time to exit the service dog safely from my car. I had allowed time for a short potty break. (Honestly, Chloe hasn’t been at home long enough for me to get out of the habit of some of these things. I found myself at a potty area recently and realized I didn’t have a dog by my side!). I allowed enough time. Not.

I did not allow time for all the new things my newbie partner was seeing. The grassy area was new. The trees and picnic bench were new. The ramp into the building was new. The automatic door push-button was new. At least… it was new to MILO. For just a brief second, I was mildly annoyed. I had not allowed time for appraising all of these new environments. That was MY bad, not Milo’s. I want my dog to be confident and aware of his surroundings. I was almost late to class, but the time I took “extra” was time worth taking. Newbies need some extra patience from those of us who are veterans to the schedule and environment. We owe it to them. But you know something?

Blowing It BIG!

I really know how to blow it. I mean, I don’t do anything half-way. This isn’t always a good thing. I recently became extremely exasperated with someone relatively new to “hearing again”. I try hard to be a positive advocate for people with disabilities, and chronic and/or invisible illnesses. This blog is, in part, a way that I try to raise awareness and encourage people to talk about tough subjects.

I see this lady about 3 times a month at the grocery store. Over a year ago she saw my CI, asked about it, and eventually had surgery herself. This individual was relatively new to hearing loss. She was still struggling to help the people important to her understand that the CI did not “FIX” her hearing. Instead it was restored to a type of hearing (bionically) and  she would still be in environments occasionally where she would need others to understand that she needed to 1) see their face, 2) slow them down, and 3) find a quieter spot. After listening to her for about ten minutes – really distraught about not feeling accepted –  I felt myself becoming impatient. We had this conversation before and I felt as if we were “beating a dead horse”. Remorse and shame immediately washed over me. I stuck my finger in my own face and preached, “Really, Denise? Really?” (Y’all are trying to figure out how you stick your own finger in your face, aren’t you?)

As I had (thankfully) kept my mouth shut, I continued to listen and realized she was now apologizing… “I’m sorry I keep bringing this up. I just can’t seem to help them understand that the CI was not a CURE. I’m so frustrated!”

I realized then and there that I needed to put myself in newbie shoes more often and remember how difficult those early years were. Advocating and educating take time. Families and friends do not just wake up overnight and suddenly “get it”.

I told her that I often forget how hard those early years were, and that she had to keep at it… eventually some of it would start to sink in for her family members.

As a person of faith, I believe everything happens for a reason. We may not always like the purpose behind God allowing something to happen, but there is always a reason. I’m also (gulp) old enough now to know that we may not EVER completely understand why something happened this side of Heaven. I have ALWAYS felt like that the acquired disabilities I have were allowed so that I could help others… or at least try to do so. I blow it. I blow it BIG. However, I think those of us that have lived the life a few years, owe it to the newbies in our lives, to lovingly coach, encourage, cheerlead, advise, and HUG often.

You are going to have newbies in YOUR life. Unless you are isolating yourself, you will have folks new to whatever “ails ya”. People will look to you for understanding and advice. You will be able to empathize much better than their doctor, their families, and their co-workers. Of all people – YOU get it.

Are you looking for a way to invest your life in someone with similar challenges? There are opportunities everywhere. You simply need to know where to look. Urban areas often have face-to-face support groups for various illnesses and disabilities. There are numerous online support networks, discussion forums, and peer supports. Many doctor’s offices and rehabilitation specialists have contacts to support personnel. Invest yourself in the life of a newbie. Remind yourself while investing how difficult those first years were! It shouldn’t surprise you to discover, sometimes by accident, the student becomes the teacher. Always, always be teachable.

Denise Portis

© 2015 Personal Hearing Loss Journal

The Two Sides of Me

happy-sad

I work as an adjunct professor at a local community college. This year I was thrilled to participate on the “Year of Social Justice” committee and to head up one of the major activities for the year – “disABILITY for a Day”. The students were given 5 disabilities to choose from, and were to experience a day of class rotation with the chosen disability. We limited the options because we did not want students (for example) choosing a mental illness and inadvertently feeding the stigma of various diagnosis. The students were to then answer 10 response questions and write an essay about the experience; or, create a video segment on their experience. If a student had a disability or invisible illness, they could do the activity “as their norm” or choose something different.

I received a number of finished products from some of my own students, some of whom I had no idea had a disability or invisible illness, and a few that I did. With permission, I am sharing part of that response (and leaving out names and identifiable descriptions).

An Invisible Influence

While I consider myself a person with invisible disabilities (profound hearing loss/hearing again bionically, and Meniere’s disease), I have worked very hard to make the invisible – VISIBLE. I learned in my late 20’s, that it served in my favor for people to recognize that I did not hear normally nor move normally. I do this by “BLINGing up” my cochlear implant, using a brightly-colored cane, and going about my daily life with a service dog by my side.

Although I have “been out of the closet” for years, there are more subtle things that I do not even realize are an influence for others who are struggling. I’m open about my challenges and actually have to work hard at not using too many personal illustrations throughout my lectures. (It’s one thing to educate your students about the disability community, and another to overwhelm them with details).

When I stumble, I usually say, “Woah!” and then grin super big and ask “would you like to see the rest of the dance?” I giggle at myself. Genuine, embarrassing/snorting giggles. If I turn too quickly towards the white board and slam into it, cheek first, I would have a spiffy comeback sometimes such as “ouch… up close and personal”. At times I would simply say, “Crap. It’s gonna be one of those days”. My students knew when I was having a particularly bad day because I would sit during most of the class, or simply announce that I was going to limit motion today (so please come to ME-smile).

One day in class, I reached to pick up a paper clip that I did NOT want Chloe to retrieve and fell on my face to the floor. Several students were there in seconds lending me a hand to resume my vertical stance. After hearing a couple of times, “Geez, professor. Ask for help”, I learned that I could ask for assistance when my service dog could not do so safely, and no one minded at all! I work hard at being transparent. I simply didn’t realize how well students with disabilities could see right through some of the “stuff” I used to advocate in a positive way.

I had a student this semester with visible disabilities, hidden and covered up to make them as invisible as possible. The student sat on the front row and wore a hoodie the first couple of weeks of class. It hid her face and her torso. I saw a transformation in this student in only four months. It wasn’t until the “disABILITY for a Day” assignments were turned in that I understood the why behind the change.

By the end of the semester, the hoodie was gone, she sported sparkly jewelry that actually drew attention to some of her challenges. She smiled (and golly did she have the most beautiful smile). She talked to everyone in her vicinity in the classroom. I saw students come up and hug her at the end of the semester and exchange phone numbers. The following is part of what she shared:

The Two Sides of Me

I always tried to hide my disability. In public I would cover up as much of me as possible. My face could be seen and I’d smile when someone looked at me. I would never allow them to look to long. In reality, I was broken, scared and even scarred. I have a professor who embraces all that she is, disabilities and all. I’ve seen her put other people’s unease at rest. She cracks up at herself. When she is having a bad day, she says so but continues to do her thing and teach. She never makes us feel sorry for her on her bad days. I’m not sure how she does it because one thing I hate is pity. Maybe it is because she is real when she is having a good day or bad day. I’ve heard her use the words “differently-abled”. She says she borrows it from a lady she knows with incredible courage and strength who lives with significant challenges. I don’t know why I’m 19 and only now figuring out that I’m differently-abled and not disabled. I have now learned to tell my family or close friends that I’m in pain or having a bad day. I don’t let it drag me down though. I have really good days, too. I’ve even learned how to put on make-up with one hand. Yay, me! There are two sides of me, and I like both sides.

I Get it Wrong – So Will You

I don’t share any of this to “toot my own horn”. As a matter of fact, I’ve made so many mistakes. For example, I had a student ask me this last semester, “Are you OK, today?” “Sure,” I replied with false sincerity. “Bull****”, they replied.

Busted.

I share this post today for one reason only. You often aren’t aware of your own influence.

Do you have a tough life? Be genuine, but live as if you are being watched. Be real, be transparent, but remember that someone somewhere is taking notes.

good example

“Denise, you have no freaking idea what it is like. You have plenty of support. You have a job. You have friends”.

Yes. I hear from disgruntled readers from time to time that I cannot understand what it is like to experience the hardships they face. They are right. Their challenges are not my own. I know that I do NOT always have good support and feel alone. I have a job, but it is really hard to go to work some days. I have friends, but only a few that I could actually say, “please help me”. I don’t want anyone to ever think that I do it right all the time. If I was perfectly at ease with who I am and comfortable in my own skin, I wouldn’t be seeing a counselor twice a month. I have major depressive disorder and it is very closely linked with my disabilities. I do not want anyone to think I do not struggle – for I do. My motto is “I have disabilities; my disabilities do not have me”.

Quotation-Scott-Adams-life-influence-people-Meetville-Quotes-125021

Live your life – that’s right, the one that is often TOUGH – as if someone was watching.

Someone is.

Denise Portis

©2015 Personal Hearing Loss Journal

NOT “The End” – Turning the Page on a New Chapter

"Hanging it Up"
“Hanging it Up”

I’m a reader. Perhaps it has something to do with having a mother who was an English teacher. Maybe it is because both my parents are readers. All I know, is that I can’t remember not having books. I lived in a rural, farming community and as it was before the “age of the Internet”, much of what we did in our free time was reading. Thanks to my mom, I have read all the “great classics”. I also grew up reading series such as “Trixie Belden”, “The Bobbsey Twins”, “Nancy Drew”, “Hardy Boys”, “Sugar-Creek Gang”, “Agatha Christie”, and “Little House on the Prairie”. I remember being SO BORED one summer that I started reading my dad’s favorite series, “Louis L’Amour” and discovered they were actually OK too!

I always felt a little melancholy when coming to the end of a good book. If it was a series, I fretfully waited for the sequel to come out. It was especially hard when the author ended a book with a “cliff-hanger”. I think that is when I started biting my nails.

I’ve had an emotional roller-coaster kind of 2015. I have been slowly easing my service dog, Chloe, into part-time work. I have already started training for a successor dog at Fidos For Freedom, Inc. In the past week, Chloe has gone from part-time working dog to “when hound dog feels like it”. I always ask her if she wants to “get dressed” and more often than not she flops her tail at me and gives me a sweet hound-dog look. “See you later, mom! I’ll be here when you get back!” 

Her vest is more often hanging on its hook, than it is being worn by faithful service dog. It has been a harder transition on me than it has been on her, and frankly? That’s the way I want it.

People notice that Chloe isn’t with me now. I suppose when you are thought of as a team, when the “cute red head” is missing, people notice. I’ve answered these questions dozens of times:

“You get to keep her, don’t you?”

“What will she do all day?”

“How will a new partner and Chloe get along?”

At first, it made me really sad to see her vest hanging on it’s hook as I walked out the door. I had an overwhelming feeling of finality. I know I’m making the right decision, but for awhile I felt like I was facing the end of a book–“The End“.

However, I realized that just like in OUR lives, finishing one chapter in life doesn’t mean the book is over. We plan to ease Chloe into therapy dog work if it is something both my husband and I can work into our schedules. If she doesn’t transition that direction, she will continue to be a beloved furry member of our family.

When the Life You Had Is Over…

One of the most disconcerting things about acquired disabilities or invisible, chronic illnesses, is that at some point you may not be able to do everything that you once were able to do. I’ve heard some people say, “Don’t ever say you CAN’T. Just find a new way of doing it!” But friends? That isn’t always realistic.

Take roller-skating for example. I love to roller-skate. I was actually pretty good at it, too. I could skate backwards, do a single axle, speed race, limbo on skates, and much more. Post balance/vestibular disorder, I can no longer skate. Sure, I could probably find various devices to prop myself up, or skate with a walker on wheels. But, I won’t be skating like I was. This doesn’t mean that I stop doing ALL extra-curricular activities. There ARE some things I can still do and do so safely. I simply started a new chapter in my book, “This is My Life“.

Some people find that after acquired disability or diagnosis, they can no longer work. Their “new normal” includes chronic pain, debilitating fatigue, or other symptoms that make it impossible for them to work “9 to 5”. However, they may find they there are some things they can do to continue earning a paycheck. There are a variety of things one can do to earn money while working at home.

Some people become volunteers and do a number of things that yield personal satisfaction and allow them to “give back”; however, the activities are not dependent on a set schedule. I know some people who no longer work due to a diagnosis, and likely do TOO MUCH as volunteers. There are so many opportunities! There are so many ways people of various abilities can do to benefit others.

If your life took an unexpected turn after a diagnosis or acquired disability, your book isn’t finished. You are just starting a new chapter.

BUT… YOU DON’T UNDERSTAND. Everything in my life has changed! I cannot successfully reach goals I made a long time ago before this diagnosis. My friends have changed. My relationship status has changed. My book really is approaching “The End”. 

Perhaps your life really did experience a 180 change in direction. Some of my favorite books are part of a SERIES. The book may have ended, but there is a sequel. Set new goals. Make new friends. Do new things. I have found that some of the most rewarding experiences I have had were the direct result of my embracing my own “new normal”. I stopped trying to be the Denise I was before hearing loss and Meniere’s disease. The people I have met, the job that I have, and the organizations in which I am involved would have never been a part of my life if I hadn’t been forced to start a new chapter, or even a new book in a part of a series.

Hanging your vest up? Have major changes happened in your life? Your story isn’t finished. The chapter may be done. The book may even be finished. Your story is NOT complete.

Writer’s block? Network with others who have similar diagnosis as you do. See what they do to volunteer, serve, or even jobs and careers they may have. It’s never too late to go back to school! Many older adults sit in my classrooms taking classes to earn a degree and prepare them for something new. Gone are the days where all my students were 18 and 19 years old.

From an editorial review of “The Story of My Life” by Helen Keller: “Many of her later works were largely autobiographical, but there was always an emphasis on the inherent power of the individual to journey through life with hope. The Story of My Life is the first chapter in such a journey.”

If your life has significantly changed, it is simply the end of a chapter. Your story – your journey continues.

Denise Portis

© 2015 Personal Hearing Loss Journal

How Can I Redefine Me?

redefine

I stopped looking at myself as “disabled” a long time ago. I am, however, quite comfortable with being a person with disabilities. A friend, fellow-client at Fidos For Freedom, Inc., and blogger, was the first person I ever heard use the words, “differently abled”.

I have to tell you that sometimes I’m really feeling my disabilities. It can make me discouraged and frustrated. So many of us who live with disabilities or chronic illnesses often gripe, “I’d like just ONE DAY of feeling normal”. 

I’ve become very comfortable with being a “hearing again”, cochlear implant recipient and “late-deafened” (without my technology). I’ve even grown accustomed to having a vestibular disorder (Meniere’s disease). I use a cane, have a service dog, and bedazzle my cochlear implant with some amount of pride and transparency.

One thing I’m not OK with is concussions. I’ve had a lot. I was even told I had “post-concussive syndrome” after a moderate concussion in 2013. “You know… like football players have.” But…

I don’t play football.

My neurologist had me do ten weeks of vestibular rehab. This was actually a fantastic experience and I learned all kinds of tricks, most importantly how to fall safely – cuz I’m going to fall. Sure, I learned all the great things to minimize the possibility of falling, but I will take some tumbles. So I learned how to unlock my knees and SIT (albeit without any grace) to avoid falls. In spite of this, stuff just happens. And you know what? I get mad.

March 8

Take March 8th for example. There was some ice and lingering snow everywhere. I prepared to walk – which means I had my no-slip boots on, my tripod cane, and service dog (who is off vest but heels like the pro she is). I bundled up and made sure my charged cell phone is in a buttoned down pocket. I don’t use my cell phone while walking. No ear buds or attachments either – No listening to music. I pay attention when I walk. (Well, I also talk to my dog but that was the topic of another post).

So when I crossed a street and fell backwards on the ice I actually felt MAD on the way down. I had taken all these precautions! The back of my head actually BOUNCED on the road. Right before I blacked out I thought…

THIS SUCKS. 

I wasn’t out very long (I rarely am). I suffered with a headache for 4 days and made an appointment with my neurologist. (Follow up in May)

I remember thinking after texting my husband and making my way the rest of the way home, that I do not like being this person. I don’t like being the fall guy (get it?). By the time I walked the 2 blocks towards home, Terry met me and I sat on the porch for a good cry. After eliminating some of that tension (and freaking my husband out), I sat there to think (and yes, hold ice on my head). I kept thinking, “This isn’t who I am. I am not the walking, talking concussion waiting to happen. I have GOT to get a handle on this.” I needed to redefine myself. I’m NOT a fall guy. I’m a very careful person who sometimes sits quickly. I sit when I’m lucky… and when I’m not that’s OK. I have plan for that, too. I’m thinking a hockey helmet when the roads and walks are bad. Imagine how I can bedazzle THAT.

Your Thoughts Matter

Two hours before my fall, the pastor of my church (Weem’s Creek) spoke about courageous faith. Do you know that people with disabilities and chronic illness are some of the most courageous people I know? Here are some of his main points. If you aren’t a person of faith, read on anyway. This can easily pertain to anyone. If you are a person of faith you may be like me and think, “Well why have I never seen this before?”

1. To live a courageous faith, we must cultivate a habit of thinking thoughts that are from God. Instead of focusing on not thinking wrong thoughts, we need to focus on thinking right thoughts.

2. We can’t always control the thoughts we have, but we can control the thoughts we hold. We need to learn to hold the thoughts that are true, noble and excellent… those from God.

3. Meditate on God’s Word, not on our misery.

I think ATTITUDE is the real disability. If you can change your attitude, you will never feel disabled. Change your attitude – and that new attitude will CHANGE YOU.

I think of it as redefining me – redefining what having a disability means. My focus is on what I can do. I pour energy into discovering how to do things that I want to do – perhaps differently (using canine, technology, or assistance). This keeps our disabilities from defining US.

Be careful to acknowledge that everyone has a personal “definition”. Just because you may have a hearing loss too, doesn’t mean we define who we are the same. Being in control of our own definition (even if we need a necessary “redefine”), also helps others see us how we see ourselves.

It may take some work. I have a colleague at work who constantly tries to “help”. I finally told her one day, “watch how I do things WITHOUT your assistance”. That shut her up, made her watch… and don’t you know she learned so much? She told me later she just assumed I needed help. Having a disability does not mean you are “not able”. Most of us find very unique ways to be VERY abled.

Are you at a point in your life where you need a little redefining? Perhaps you have believed some of the “hype” about what you cannot do because of your diagnosis. Redefine yourself and hopefully change both your attitude and how others see you.

redefine4

 

L. Denise Portis

© 2015 Personal Hearing Loss Journal

 

As You Wish…

blog as you wish

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

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

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

When People with Disabilities Keep the Peace

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

Trust me.

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

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

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

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

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

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

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

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

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

I apologized (profusely).

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

“Shove it up your… “

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

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

It seems we had an audience.

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

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

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

Is that nicotine or weed you are smoking?

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

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

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

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

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

So Where is the HAPPY MEDIUM?

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

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

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

Denise Portis

© 2014 Personal Hearing Loss Journal

Time Lapse

One of my first photos, 1966 with my mother and older brother, Lee.
One of my first photos, 1966 with my mother and older brother, Lee.
My life today...
My life today…

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

So consider yourself bound by a spell!

Erm…

Moving on…

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

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

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

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

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

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

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

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

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

Denise Portis

© 2014 Personal Hearing Loss Journal