Tag: chronic illness

Road Signs

Published on by hearingelmo1 Comment

traffic calming

I’m directionally challenged. When I say that, I mean that I even have trouble following SIRI-instructed GPS instructions. Where I grew up it was really easy to tell North from South and East from West. The grasslands of Colorado will do that for you. However, after I moved to the city after high school I’ve had trouble with direction! I remember being so surprised at all the street names. I mean… I grew up on Road W. (I’m not kidding). I lived 1.5 miles east of my grandparent’s home. I knew this because my hometown was North, and my grandparents lived 15 REA poles adjacent to us on the “sun setting” side. I know you think I’m making this up, but I was truly disoriented when I discovered directions included street names and not landmarks. Then I discovered traffic signs that we never had in Baca County! I mean… “TRAFFIC CALMING”? We hardly had a need for stop signs, let alone traffic calming signs.

Last week on a back road–a short cut, carefully taught by my significant other–I encountered a “Traffic Calming Ahead” sign. Now granted… this sign has likely been there all along. However, I just HAVE become confident enough to notice things like traffic signs as I’ve been too busy looking for that white house with the green shutters (cuz – yeah. I still don’t use street signs so please don’t tell my husband). As I passed the sign, my first thought was, “Whaaaa????”

I’m very eloquent when talking to myself. As I drove a little further there was a big speed bump in the road. Do you know I almost had to pull over to the side of the road to figure on what a speed bump had to do with “Traffic Calming Ahead”? I forced myself to go on, while my thoughts just jumbled together.

After I figured out what it meant, my next thought was, “Heck. What happens when the sign says, ‘TRAFFIC DRAMA AHEAD’ “? I guess I hope I don’t ever have to find out.

I suppose it’s nice that the city thinks so much of drivers to warn them in advance when they are going to force a change in driving attitude. Wouldn’t it be nice if we had road signs as we traversed LIFE?

Road Signs

It took me awhile to figure out, “Bridge Ices Before Road”. Longer still to figure out:

turtle crossing

Someone, somewhere, has been very conscientious about what lies ahead. Why can’t we have that kind of system to navigate life? I suppose in a way we do. As a person of faith, I certainly have prayed enough asking for guidance and clear direction on decisions.

I’ve also “bent the ear” of close friends when I’m trying to make decisions or determine what to do. I don’t know about YOUR life, but in my OWN? I’m often left thinking, “What just hit me?” after I’ve already encountered the hazard. There was no warning. Don’t for a moment think that I’m not paying attention either. I’m probably hyper-aware as I’m prone to some OCD tendencies. So why do I so often hit the speed bump at full speed (or crush the turtle)?

Distractions

I have some folks in my life with some ADHD goin’ on. It kinda makes sense that they would miss signs. So how does someone who pays great attention to details, get distracted? Basically? I lose my focus. I may be driving along still thinking about:

helicopter

That I failed to pay attention to the next warning:

uneven

So when my car dropped off the uneven pavement on one side, I screamed like a girl. Thank goodness I’m a girl.

Not only do I tend to perseverate – causing me to be distracted, I also tend to “worry something to death”. How many times do we worry about things we cannot change? Take a minute and list all the things you really have no control over. I’ll check back with you in a couple of months.

As a person of faith I try to:

faith

I have to tell ya, though, I blow it again and again. I’m a “worrier”. I’m trying to do better because I’ve come to recognize it IS a big distraction for me. I miss warning signs, I become self-centered, I miss cues about other hurting people, and I step in doggie doo-doo (just laying it out there, folks).

The “Here and Now”

I’m having to learn to live in the “here and now”. I’m not very good at this. Don’t get me wrong… I think we should make plans and be prepared. Be an ant instead of a grasshopper. But I get awfully distracted about worrying about something that hasn’t happened yet. Worse? I worry about something that has already happened and can’t be changed.

I’m working hard to take one day at a time. I’m working hard to focus on the here and now. Example:

I’m fixin’ to walk into class and will be there for 50 minutes. How are my students today? Does anyone seem worried, distracted, tired, or ASLEEP? How can I make personality dispositions FUN? I don’t get any second chances. I don’t want to miss that one student looks shell-shocked, another likely high. (Dude? What have you been smokin’?)

I don’t get that 50 minute time segment back. It can be simplified beyond this, too. I’m trying to take more naps. I need them. I don’t know if it is because I’m “almost 50”, or if it is because I am fatigued from having to speech read and pay attention? I just know that I live for naps. If I have an opportunity to have one, I don’t want to lay there for 27 minutes of my hour available worrying about what I need to do. I’m learning to focus on calm – peace – rest – sleep.

My guess is that if you are reader of this blog, you have challenges of your own. You may be differently-abled or live with chronic illness or pain. Perhaps you are struggling with emotional health. Learning to ignore the distractions will help you focus – help you cope. It isn’t a cure-all. Occasionally you will still be taken by surprise. You are going to see and benefit from far more road signs if you are really paying attention. I hope you will work on it and if you have any tips, comment below! I know I take all the advice I can get!

L. Denise Portis

© 2015 Personal Hearing Loss Journal

Why I Rarely Vent (in Person)

Published on by hearingelmo4 Comments
My head is gonna explode. There's a reason I don't vent in person...
My head is gonna explode. There’s a reason I don’t vent in person…

Aren’t I brave to post a picture with no make-up on a “horrible, rotten, no-good day”? I decided last minute to stop in at work on Monday to check my mail box. I forget to do it during the summer when I’m not teaching. Anyway, I ran into a person I know fairly well. I almost ran the other direction because I know her well enough that I didn’t want her to see me with no make-up, flip-flops, and blue jeans. However, since SHE had all that going on too… I decided to let her flag me down instead of pretending I didn’t see her. We exchanged the “how’s your summer going?” questions and visited for a few minutes. We’ve served on various committees together and so when she asked me, “So how are you really doing?” I didn’t hesitate to answer truthfully. Silly me, I thought she wanted to know!

“Well, I have had a bad day. I get super tired of falling on rainy days. Ya know? But the weather for the rest of the week looks great” and I beamed my best smile!

She said (I kid you not), “Yeah, I fell this weekend and broke my friggin’ nail. Just look!” (she sticks her finger in my face for easier viewing). “I just got a manicure too!”

Now the first thing that popped into my head wasn’t nice. So I’m not even going to repeat it on here. My second thought, however, was “this is why I’m not honest to people face-to-face“. Besides… if you don’t live with a chronic illness or disability, you just can’t understand what having a bad day for THAT person really means. (I can’t completely understand YOUR bad day either). It’s not their fault. I chose to believe she was trying to commiserate and help in some way. I “ooo’d and aaaah’d” over her broken, manicured nail, getting madder and madder (but doing a fantastic job of hiding it, I might add!)

After due diligence in bemoaning her broken nail, I turned to leave. Since I had been holding her wrist to get a better look at the nail, I dropped my hand (and her hand) as I turned to walk away. It was then she noticed my arm. “Oh my gosh. What did you do to your arm?”

I turned my arm to look at where she was looking and saw a row of purple and blue bruises. “Oh that,” I said breezily, “yeah, I said I fell, right?” Her eyes got really big, and she whooshed out on an astonished breath, “Well, I’m an ASS, aren’t I?”

I giggled. Not at her.

Ok, yes it was AT her, but her self-condemnation and horrified look were truly priceless. I assured her that all was well, working hard to make sure we went our separate ways with friendship and her self-esteem still intact. After all, I didn’t want her to think that *I* thought she was an a**. Even though I did…

Why We Dodge the “HOW ARE YOU?”

On the short drive home I belly-ached out loud to Milo (new Service Dog). One of the great things about service dogs is their non-judgmental, listening ears. When I’m angry, I tend to cry. Not sad tears either. (Hubby has learned to not “there-there” me when he sees tears because chances are he’s in trouble and not that I’m sad and need a shoulder).

Many people with chronic illness and disabilities lie. Not premeditated lying. It’s more of a self-protective omission of the truth. When your NORMAL is not “normal” for people who do not live with significant health challenges, you do not really have symptom-free days. Instead, you learn to appreciate the good days and try super hard not to dwell on the bad days. You don’t ever answer “how are you?” truthfully. (Unless the person who asks lives it too and really gets it). You don’t want to be a negative Nellie; a sour puss; a stick in the mud; __________________ (fill in the blank).

So you dodge the question, or flat out lie. I had a friend tell me that “stating how my day really is going doesn’t make my day better. It only depresses the other person. Since there isn’t anything they can really DO to make it better, I grab FRIENDSHIP by the collar and don’t let go, insisting my day is going very well if only to talk to a friendly face for a few moments longer”.

Don’t get me wrong… we all need some folks we can be honest with and tell it like it is. For me, it is often God because I figure His shoulders are broad enough. Sometimes I need a flesh-and-blood human face to talk, too. This is why I highly recommend support groups. I rely on the people I have come to know at Fidos For Freedom. We couldn’t be any more different. We struggle with completely different kinds of disabilities and challenges, but each one of us understands why we dread the “how are you?” question. Even virtual support (through the medium of the Internet) can be very therapeutic to people with chronic illness and disabilities.

But… I really want to know! I really want to help!

I have a few people in my life (and I hope that you do, too) who I can be honest with  when I’m overwhelmed with a “horrible, rotten, no-good day”. They may ask, “how are you really doing?” and I TELL them. The obvious next question is, “Well, what can I do to help?” Ya know? I’ve really wanted to take people up on this before. I mean… sometimes it may be that I need someone to go shopping with me. Milo is terrific, but there are some things he cannot pick up and some things I really wish I hadn’t dropped to start with! (like glass). Shopping is exhausting for me but a necessary chore.

My son has a “temporary disability” as he fell through the ceiling while in the attic and broke his arm. (The full story is much longer, but I’m not going there today). He is really struggling with doing “normal” things because he has one hand. So I asked him, “what can I do to help?”

Laundry. My son asked me to do his laundry! And do you know, I was almost hysterical with JOY? I love to do laundry! I am ABLE to do laundry! I love pre-treating stains, choosing settings on the washer, and piling things in evenly. I love putting wet clothes into the dryer. And… (OMGosh I’m trembling with excitement I can hardly get it out…) I love folding warm clothes from the dryer. I’m getting goosebumps thinking about the neatly folded piles of “like” clothing. It’s a very normal (and for most people), boring task. However, “son” couldn’t do it. *I* could help.

If you are in a position to help someone who lives with chronic illness, doing something rather ordinary — is EXTRAORDINARY for them.

Loading/unloading the dishwasher

Washing the bedding and re-making the bed

Mowing the lawn

Deep-cleaning a bathroom

I know people with various disabilities who do things to help out others with disabilities. That’s how it should be, right? People… just helping PEOPLE.

Concluding full circle here – VENTING

I have some high maintenance friends. And you know something? I love them. I knew in advance they were high maintenance and I chose to be their friend anyway. I also have some friends who “hold their hand close to their chest”. Heck, if I’m really going to see their “hand”, I almost have to yank them towards me and demand “a real reveal”. I’ve had to learn how to “read” them. I very well may MISS IT sometimes – the clues that tell me that all is not well.

Sometimes people just need to vent. They KNOW you can’t do anything to improve their situation. They KNOW they will have better days (so please? Don’t tell them, “the sun will come out tomorrow”?) They may just need a few moments to tell you like it really is. You say, “How are you?” and they decide to open the dam. It may pour out of them. It may be a trickle of water that you have to give additional encouragement to in order to really break down that barrier.

Let them VENT.

… and then what? I don’t recommend patting them on the shoulder and asking if they feel better. What’s the next step?

It’s two years old now, but I love — absolutely LOVE this advice. <Click here for full article> The highlights and three follow-up (recommended) questions to a “Vent-or” are:

  1. What bothers you the most about the situation?
  2. What is making you the most _______________?
  3. (My favorite) What worries you about this?

This is listening done right. They vent. You follow-up with questions that let them know you were actually listening. You can brain-storm with them options that may help them with some of the things that are frustrating them. You may discover through dialoguing with them, a way that you can easily help them beyond providing a listening ear.

Folks who live with disabilities or chronic illness like being able to reciprocate, too. I am on CLOUD NINE that my son needs me to do his laundry for him right now. I love dog-sitting for my daughter’s dog when she needs to go out of town. There are some things I can do. Let me do them. 🙂

I hope you will look at venting a little differently after reading this. Especially if the venting you listen to is from someone who has significant health challenges. One of my dear friends has a seizure disorder as well as other significant health challenges. She often lets me hear how things are really going because she knows I care. I tell her I will be praying, and she knows I mean it. She immediately asks, “so how can I pray for YOU?” and I know she means it. A praying friend can be HUGE. Sometimes you can do more. I hope you will look for those opportunities. Lysa TerKeurst does a great job blogging about this. Please allow me to share her great article with you: “Don’t Say You’ll Pray for Me“.

Denise Portis

© 2015 Personal Hearing Loss Journal

Pressure Cookers and “The BIG REVEAL”

Published on by hearingelmo2 Comments

pressure cooker

I can hear my grandmother’s voice saying, “Turn up the heat and see what boils out!” None of us like pressure.

None of us enjoy being stressed.

None of us “sign up for” difficult times.

Yet life is full of difficult times. It’s just the way it is. I use to get so aggravated at my mother for responding to my self-pitying tears and hiccup-sobbing announcement that “It’s not FAIR” with, “Denise… life is NOT fair“.

Life isn’t. Bad things happen to good people. Wonderful people suffer. Terrific human beings have their hearts broken.

Sucks, don’t it?

How a Pressure Cooker Works

I don’t know of very many people who own a pressure cooker. I don’t use one. I had a grandmother who used one fairly frequently, however. Why use a pressure cooker?

Pressure cookers essentially do two things.

  1. Raises the boiling point from about 212° to 250°.
  2. Raises the pressure inside the pot and forces moisture into the food.

Using the pressure cooker as a great analogy for LIFE, it helps us deal with higher temperatures, and keeps us from DRYING OUT. That’s right. When you are forced to deal with stress and pressures, you actually work out your “dealing with it” muscles and make it easier to handle the next burden. This is especially true if you are dealing with it often enough that you’ve developed good habits. New good habits include:

  1. Taking it to God and recognizing that “He’s got this”.
  2. Learning to ask for help from trusted friends.
  3. Learning to pace yourself; taking the time to rest when needed.
  4. Looking for the GOOD in a very BAD DAY.
  5. Burning your “Blame Game” after recognizing it is no one’s FAULT.

  6. Showing off your “BIG REVEAL”

That’s right. After the burner is turned down and the pressure is OFF, we lift the lid and  take our bows. The big reveal.

My former pastor from North Carolina reminded me however, that the “reveal” is often long before we lift that lid.

“The true test of character is not just seen in your actions but your reactions. We often like to excuse our inappropriate behavior by saying, “I’m sorry I was just under a lot of pressure.” But it’s the pressure that often reveals what’s on the inside and what we’re really like!” (Pastor Jake Thornhill)

While we are blowing off steam, we are also revealing to all who watch, who we really are. I have a dear friend who recently lost her young adult daughter in a car accident. As a person of faith, she knows she will see her daughter again one day. Yet, she has been very “real” in blowing off some steam. She is hurting. She misses her daughter. Her faith is strong. She’s dealing with it. However, I repeat: She is hurting. She misses her daughter. It is a poignant reminder to me that the very best people need our love, support, and prayers. Bad things DO happen to good people.

People who live with chronic illness, invisible conditions, or disabilities have good days and bad days. There will be days that you handle “your normal” in a positive, healthy way. There will also be days that you need to go back to bed and zip your lips because everything spewing out is pretty ugly. Not everyone is going to understand that. (Even some folks close to you won’t understand). Want to know some “ol’ sayings” that get on my very last nerve?

“What doesn’t kill you will make you stronger”

“Shine – don’t whine!”

“Be better, not bitter”

“When life hands you lemons, make lemonade!”

If we take these oft-used encouragements too far in our attitude towards OTHERS who are going through tough times, we miss out on one of life’s biggest blessings. One of the quickest ways to alleviate someone else’s stress and pressures are simply to let them know you are there for them. Pray for them. Hug them. Tell them, “I care about you“. If you deliberately look away when life increases the temperature under someone’s pot and assume “this is good for them”, you miss the opportunity to be used in a special way.  Throwing a chirpy little positivism at them will not help them. BEING there for them is what matters.

Love someone with significant challenges? You will learn what to SAY, and what NOT to say, to support your loved one best. Please allow me to mangle one more colloquial expression?

“A watched pot never boils”. Oh yes it does. You can stand there and watch the pressure gauge go up and Up and UP on a friend or loved one’s pressure cooker, and it’s going to boil. There is no escaping the heat. I don’t know about you, but I want to be the kind of friend who is there through the cooking process and present for the big “reveal”, for when the pressure is gone and the lid is lifted. That’s what friends do. That’s what support is.

Denise Portis

©2015 Personal hearing Loss Journal

 

 

Specificity

Published on by hearingelmo4 Comments

specificity

Some posts get a lot of response both publically and privately. Back in March of this year, “When they SHOULD, but They Don’t” posted. In 2015, this post has generated the most “mail”. This tells me that the topic is important. This tells me that this problem exists. This tells me that people with chronic illness, invisible illness or disability, and health challenges struggle with:

  1. Asking for help
  2. Accepting help
  3. Realizing that assistance ≠ diminished independence

My husband and I travelled to see his parents two states away this weekend. I love having Terry all to myself in a car where he can’t get away from my enthusiastic chatter and conversation. Thankfully, the man doesn’t seem to mind that a seatbelt is all that separates him from his talkative wife.

I shared with him how much follow-up email I have received about this post. I know many people who are differently-abled personally. I also “know” many only through “Hearing Elmo”. Why is it so hard for the people in our lives to support us in a healthy, loving way without creating codependency, “IOU mentality”, and decreased self-esteem? I shared with my husband an article I recently read at the Invisible Disabilities Association, on what family members of differently-abled people should know. (You can read it HERE).

My husband, a psychologist who has worked with special populations for 25 years, reminded me of something that I really needed to hear. You see… lately we have not been communicating very well. Yeah, yeah, I know! Hearing loss is a communication disorder, but this isn’t new to us! Once in awhile, our communication breaks down. I get frustrated, he gets defensive, and the dogs choose sides. It’s ugly.

Be Specific or Be Quiet

One of the most common things people say to me about this topic is, “If the shoe were on the other foot, and THEY were differently-abled… I would be supportive and accepting!” In other words, “I’m sure I’d respond to all of this much better because I’m a super hero and they are NOT”.

Now don’t get me wrong! Maybe you WOULD respond more effectively! I believe that circumstances such as dealing with a health challenge can make us more compassionate, empathetic, and helpful to others in the same boat. I tried to point out to a reader that they “could not know how they would respond and support the other person because it isn’t their reality”. They “could not know how hard it is to love and support someone 24/7 that is differently-abled because they are not living that life”. These folks immediately fire back, “Well I LIVE WITH THIS 24/7 so I think I would know how hard it is”. Apples and oranges, my friends! They are both fruits and grow on trees, but are different in every way. Bottom line, if you are differently-abled or live with chronic illness, your perceptions and reality have changed. You cannot know what it would be like to be completely healthy and instead love/support someone who has special challenges.

I can already HEAR picture some of you freaking out about this. Before you send me hate mail though, please remember that I, too, am a person with special challenges, married to someone whose only significant challenge is to lose 20 pounds now that he’s middle-aged. (Hmmm. I may get called out for that comment should hubby read this week’s post).

I’ve already explained that my “captive audience” reminded me of something about good communication because I have slipped into some old habits and was feeling frustrated with him as a result. We need to be specific. Our loved ones are not mind readers. Here are some REAL specifics I have learned in my own communication – all of which we re-visited on this trip since communication has broken down lately.

Instead of:

You need your laundry done? Do it yourself MORON!

You know I love doing laundry. I need you to carry it down the two flights of stairs to the laundry room. Then, when you get home from work, at some point I will need you to carry it all back upstairs.

Instead of:

What? You can’t carry your own plate to the sink? Well I guess I’m making dinner FOR ONE from now on, You MORON! 

I don’t mind cleaning up after meals. My Meniere’s disease does not allow me to carry things to the sink very safely. Could you pile your stuff in the sink please?

(This specific instruction garnered the benefit of his carrying MY dishes to the sink, too!)

Instead of:

I can only walk one dog at night. You think I have excess energy? I guess poor Chloe is going to believe she is unloved and definitely UNWALKED. MORON!

Would you walk Chloe with Milo and I tonight? She needs the exercise.  You don’t need to go as far as I do, and it will mean a lot to her.

Instead of:

You’re tired of the empty cupboards and fridge? Go get your own groceries, MORON!

(Can you tell my unfiltered, “go to” cut-down is moron? Poor Terry) 

I am running on empty this week. Milo is a huge help, but I’m just “done”. Would you go get groceries with me this week? It would really help.

Instead of:

You never help me! (and just to stay consistent… MORON!)

Would you mind helping me with some housework today? My balance is particularly bad. I could dust if you would vacuum?

Specificity helps communication. Generalizations will lead to communication breakdown. It takes practice. You wouldn’t think it would, but it really does. Learn to be specific. You may even have to learn to be specific in how you want your loved ones to back off! A recent example:

Instead of:

Cripes, Terry! I can do this, you know. I’m not totally incapable!

(He was trying to help me get Milo’s leash on and Milo was super excited).

I know Milo is “blowing a gasket” here. But I have to learn to calm him down and give him the proper commands since I’m usually alone with him. He has to learn to settle on MY terms. Thanks for the help, but I’ve got this!

If you need help, be specific. If you can do something yourself, be specific. If you need a listening ear, be specific. If you need a hug, be specific.

Denise Portis

© 2015 Personal Hearing Loss Journal

P.S. I’m hoping to launch a series of blog posts over the next year. See HERE for more information. We need guest authors! 🙂

Self-Talk

Published on by hearingelmo4 Comments

positivethinkingimage11

Self-talk. Chances are you have been using self-talk since you were a child. As a matter of fact, developmental psychologists tells us that self-talk begins in middle childhood, ages 6 to 11-years-old (Arnett, 2013). Perhaps that is why many folks think that simply “talking to yourself” out loud is the same thing as self-talk. Children often “play out loud”, adding sound effects, conversations, and even lengthy monologue within imaginary play. This is not self-talk. Self-talk is really just your inner voice. It often reflects your conscious and unconscious thoughts, beliefs, and assumptions (Psych Central, 2015).

Self-talk CAN be out loud… don’t get me wrong. One of my favorite things to practically shout when I use self-talk, is “Girl? I REJECT THAT!” This is said out loud, with southern accent, hand on hip, and oozing with attitude.  (Are you picturing it? If you know me, you likely have even heard me say it).

Self-talk is also studied in Sport Psychology. As a matter of fact, if you do some searching online, many athletes have often used quotes that incorporate the use of self-talk. We ALL use self-talk, however. Whitbourne (2013), explained “Psychologists have identified one important type of these inner monologues as “self-talk,” in which you provide opinions and evaluations on what you’re doing as you’re doing it. You can think of self-talk as the inner voice equivalent of sports announcers commenting on a player’s successes or failures on the playing field” (para. 1).

This is why sometimes internally and oft-times out loud, we say, “Well. That was stupid”. As a matter of fact, much of our self-talk as adults is negative. Some of us may be parroting things we actually hear others say. However, most of the negative self-talk comes from the heart of pessimism and self-deprecation. Why? Why are we so hard on ourselves?

People who live with chronic illness, or invisible (or visible) disabilities often have negative self-talk. Statistics tell us we don’t really engage in negative self-talk more than adults who do not struggle with these issues, but perhaps the source is different. Frustration tends to be a significant source of negative self-talk for the differently-abled.

self-talk-2

Perhaps you are trying to discover how to do something independently. Maybe your are coming to terms with having to do something differently. Here are some things I have found helpful when I find frustration is spawning negative self-talk:

1. Identify it. Perhaps this is why the first phrase out of mouth is often “Girl? I REJECT THAT”. I identify that I am engaging in negative self-talk. See it (or hear it). Call it what it is. Now that you recognize it:

2. Change your spin on it. See if you can’t put a positive spin on it. Perhaps your self-talk has recognized something that you need to pay attention to but you need to say it like you are talking to your best friend. Be your own best friend. We wouldn’t say, “Geesh, that was dumb”. Try re-phrasing it. “Well I’m smarter than this. How can I make sure this doesn’t happen again?”

A great example of this happened to me just last week. I took a really hard fall between my front door and the grass to “potty the dogs”. It was late, and pretty dark outside. I was in a hurry. My pillow was calling out to me and I wanted to reply face-to-face. I left the house without my cane. I was only walking 10 yards. What could happen?

I have 6 bruises and a small cut on my arm to show how wonderfully intelligent that choice was. So laying there in the grass with “mother earth” in my mouth, ear, and eyes, my first thought was:

“Dang. You are so graceful”.

Yeah. I speak fluent sarcasm.

My second thought was, “Geesh, that was stupid”. I’m a bit of a motor-mouth so I’m pretty sure the conversation went on a little longer, discussing how many brain cells I have, could I be any lazier for not taking 10 seconds to grab the cane?, and competing very hard to convince all living things listening that I deserve my title of Accident Prone Queen.

Because I’ve had so much practice at this, I immediately identified what was happening. Putting a new spin on it meant I could say, “Well this is why you should take 10 seconds to grab the cane!” Folks, I was WRONG to leave the house without my cane. But finding a middle-ground and re-phrasing the self-talk helped me be just a little more kind to myself. We need to take the time to be kind to ourselves.

3. Flexible expectations. No one knows you like YOU know you. If you have lived with invisible illness or disability for any length of time at all, you know what your own limitations are.

Unlike some of my cochlear implant friends, I still do not hear music very well, nor enjoy what I hear. My iTunes account could be deactivated. Does this mean music isn’t a part of my life? Absolutely not. I sing 80’s tunes at the top of my lungs when home alone.

Because of positional vertigo, I cannot use exercise equipment like the cross trainer (my husband’s favorite), stair-climber, or anything that moves my position vertically. Does this mean I cannot exercise? No. I can use a treadmill and I can walk. The latter I do twice a day.

The doctoral program I am in is designed to push you through in two years. I will be done in 3.5 years. And you know what? That is OK. This is the pace I can do successfully and complete my schooling. I can be flexible in my expectations!

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When all else fails, tell yourself to shut up. You may not say, “Girl? I REJECT THAT!”, but don’t be afraid to tell yourself to zip it. It may even be helpful to say it out loud. It works for me! In the end, you can actually work self-talk to your advantage. Learn to cheerlead yourself. Most of us look great with poms-poms.

Arnett, J. (2013). Developmental Psychology: A cultural approach (1st ed.). Upper Saddle River, NJ: Pearson Education, Inc.

Psych Central (2015). Challenging negative self-talk. Retrieved June 15, 2015, from http://psychcentral.com/lib/challenging-negative-self-talk/

Whitbourne, S. K. (2013). Make your self-talk work for you. Psychology Today. Retrieved June 15, 2015, from https://www.psychologytoday.com/blog/fulfillment-any-age/201309/make-your-self-talk-work-you

Denise Portis

© 2015 Personal Hearing Loss Journal

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

Published on by hearingelmo4 Comments
"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

Tree Hugger

Published on by hearingelmo3 Comments

2015-04-11 19.08.33

The weather is finally feeling “Spring like”. The trees are all budding out and blooms galore, decorate my neighborhood. It ain’t all good. *achoooo* – but allergies seem a small price to pay for such pretty walking weather.

A couple of days ago, I ventured out of my immediate neighborhood and down a nearby walking trail. I’ve posted about beavers and bullfrogs in other posts as the path stretches along the perimeter of a small pond. At “the bend in the path” where the trail takes a sharp right turn, a huge tree was cut down. This was supposedly done to insure the path remained semi-straight. When I first saw it last year after this section of the trail was finished, I grieved a little seeing that this huge tree was chopped down and for the apparent reason it was hauled away. I haven’t been down this path in months and months. When I got closer to the remains of this giant, I looked for the scarred stump. I was surprised at what I saw. Every which way, new growth and small branches, sprouted from the stump.

I almost became a “tree hugger“. Not in the traditional “activist” sense, but I was so excited to see that it had persevered! I even took a few steps off the path to see how to approach for a hug. Seeing no great way to latch on and SQUEEZE, I instead reached out and calmly high five’d a small branch closest to me. I stood and silently celebrated the fact that this tree was still alive, determined to continue in spite of being chopped down!

Have You Felt the Woodsman’s Axe?

I turn 49 this year. Honestly, growing older doesn’t bother me in the least. Yet, because I have acquired disabilities, I have to admit that where I am is NOT where I thought I’d be. Don’t get wrong.

I feel good about me. I still have goals. I strive to make a difference. I love what I do. I have good days and bad days. There have been days I have really felt cut down.

AXED.

For many with acquired disability, chronic illness or invisible (or visible) conditions, much energy and focus is geared towards being independent. We don’t want to be a “bother” or put people out. I stopped trying to “fit in” a long time ago. I don’t hear normally. I don’t walk or stand normally. As I have become comfortable in my own skin, others have learned to accept me just the way I am as well.

But sometimes? Well, sometimes someone comes by with a wicked, sharp axe and hacks away at me, chipping away at who I am. Do you know what sucks? Sometimes the woodsman is someone I know well. Do you have people in your life who tell you “for your own good” to suck it up? “If you didn’t go around making a big deal about your disabilities, you would fit in better!” “Well aren’t you the DRAMA QUEEN?” “I’d never know something was wrong with you if you didn’t go around with a service dog!” (As if it never occurred to them I’m independent BECAUSE of the service dog).

There will be times we feel “cut down” because it is JUST ONE THING AFTER ANOTHER. I have some friends (those I call family, really) who have significant challenges. A few of them have really had a tough year. One took a significant fall in a store and is STILL recovering as the injury fall out was compounded by her MS. I have another friend with MS who is a stroke survivor. Her husband is now dealing with significant health issues. A young woman I got to know through Fidos For Freedom (who also writes) has a terminal illness and things seemed to go from bad to worse for her this year. These warriors have been chopped away.

Yet people with disabilities and chronic illness are stubborn. We persevere. If anyone “keeps on keeping’ on” it’s us! There is not any person with ANY challenge that cannot explode with new growth in the Spring. Winter is harsh. Axes are sharp. Bad stuff happens. But friends? Life isn’t over. Good can come from this.

Spring is here. Have you had a tough Winter? Did someone take an axe to you? You still matter. You can still make a difference. You are important. It’s Spring. Time to bust out in blooms or branch out in new growth. Don’t make me come fertilize you. 🙂

You meant evil against me, but God meant it for good in order to bring about this present result. Genesis 50:20 (NASB)

Denise Portis

©2015 Personal Hearing Loss Journal

Cats Get a Bad Rap

Published on by hearingelmo1 Comment

CatAndMirror

I love dogs. However, I do love cats, too! I don’t currently own a cat which is just weird for me. Cats have a bad reputation though, don’t they? Think of the phrases we use about cats:

1. Tom-cattin’ around.

Males (or even females) slinking around at night looking to get some-some. (Jus’ tellin’ it like it is, folks). Apparently the name of said feline is also Tom.

2. Caterwauling

This is usually a female cat screeching and yowling around while in heat. It is used to describe humans at great risk to the idiot males who determine it would be funny to do so.

3. Like herding cats

This is impossible. They don’t run in herds so aren’t we the stupid ones?

4. Let the Cat out of the Bag

This means to tell a secret. Frankly if my cat was ever in a bag it would not be a secret. The whole house would know. If you don’t understand, you’ve never owned a cat. They are either playing in it by choice, or stuck in it due to HUMAN error.

5. Cattin’ around

Similar to “tom-cattin’ around”. To wander aimlessly looking for entertainment – usually resulting in feline delinquent behavior.

6. Fat cat

Evidently this means loaded, or very rich. I do NOT use this phrase this way.  At the time I was talking to an overweight cat.

7. Curiosity killed the cat

Cuz evidently even though it 1) looked dangerous, 2) smelled dangerous, 3) sounded dangerous, they couldn’t help but investigate anyway. Which leads to #8

8. Cats have nine lives

They get killed a lot. Or, at least do really stupid things that almost result in their demise.

9. Cat got your tongue

Ewww. Just ewww. Yet, it means speechless. This happens to me a lot. *rolls eyes*

10. Cat walk

To walk with splendid balance and grace with a sexy little swing of the hips. Evidently models walk on this. Perhaps cat calls came from this practice.

Cats can be pretty special critters though, and even better fur-babies. They sure get a bad rap, however. People seem to either love ’em or hate ’em. I find few who are indifferent. I’ve met some pretty special cats that behaved very un-cat like at times. And frankly? I’ve had some cats climb up in my lap and allow me to pet them while they purred my cares away more than once. They can be extremely intuitive.

People with Disabilities Get a Bad Rap

I don’t like identifying as a person with a disability. It is the language used by the laws that protect my rights as a person with unique challenges, however, so I accept the “label”. Folks with disabilities get a bad rap though.

Here are just a few of the things I have heard:

1. We complain. A lot.

Evidently about anything and everything; but mostly about our disability. I mean… it’s as if we live with it 24/7 or something. Pretty lame, aren’t we?

2. We are lazy.

In the decades I have mentored and worked as an advocate for persons with disabilities, I believe one of the toughest diagnosis is that of CFS (Chronic Fatigue Syndrome). There are some other diagnoses that are closely related in which the primary symptom is extreme and debilitating fatigue and/or pain. It hurts to do anything. So sometimes, complaints just slip out of the mouths of these brave people. Maybe curse words too, but STUFF SLIPS OUT. It is very, very difficult to live with one of these diagnoses and I admire these folks. I do.

3. We are extremely dependent.

Most of the people I know who are differently abled – work very hard at learning to do things DIFFERENTLY so that they can remain as independent as possible. If you knew how hard it is to ask for help you’d never roll your eyes at a request from someone living with chronic illness or disability.

4. We will never contribute to society.

Geesh. This is so, SO wrong. Most of those I know living with a chronic illness or disability are super busy working in their community. They “give back” at times to the point of going to far and doing to much. Everyone has a desire to be needed – to matter. This includes people with disabilities.

5. We are drama queens/kings.

I’m a bit of a drama llama. I prefer this term because I am crown-less yet recognize I, at times, spit for attention. But seriously… most of us HATE attention. We are trying to just “be normal”. We haven’t created our own song and dance in expectation of applause.

6. We are hypochondriacs.

The thing about long-term disability or chronic conditions, is that you become an expert on your diagnosis. As a matter of fact, at times, you know more than your doctor does. You have researched and investigated everything about your diagnosis and in so doing have learned about similar diagnosis or co-morbid diagnosis. We seek to understand it because we are trying to survive.

7. It’s all about us.

There are selfish people with disabilities and selfish people without disability. Many of us (just like you) work hard at making a difference for others. We actually hate the attention and don’t want it to be about us. We love being able to do even small things to help someone else.

8. We will die young.

Many people with disabilities live an average life span. But folks? They do so never ditching the diagnosis. This makes them WARRIORS. This makes them courageous. This means we could take some lessons from these people.

There are also those whose diagnosis mean their life span will be cut short. These people are still warriors. They simply have less time to prove it to you. So make it a little easier for them and stop judging and embrace their uniqueness. None of us are promised tomorrow. Even those without serious and permanent diagnosis could be gone tomorrow. Shouldn’t we all work to make a difference TODAY instead of write people off as if they have no future?

9. We don’t care about our health.

Yes. Some diagnosis make it really difficult to move, to exercise, and to live a healthy lifestyle. Sometimes people who are differently abled gain weight. But added pounds does not mean they don’t care about their health. As a matter of fact, most of us have learned that dietary changes, moderate (doable) exercise, and holistic approaches can improve the quality of our life. Don’t preach at us to become “juicers” or vegan, or organic shoppers. Don’t tell us to just get out and MOVE. Folks who live with a long-term illness or disability are often avid health nuts. They may not look it, but they work to keep things such as blood sugar, cholesterol, and blood pressure in control. Please don’t judge.

10. We are disabled.

Being disabled does not mean not being able. We are very able. We likely just do things differently. We are still more LIKE you, than not like you. We feel. We love. We get pissed. We yearn to connect. We throw our dog’s ball and scratch our purring fur-balls. We are very able. If in doubt, get to know us and discover it for yourself.

Denise Portis

© 2015 Personal Hearing Loss Journal

Folding Fitted Sheets and “Good ‘Nuff”

Published on by hearingelmo5 Comments

fitted sheet2

My newlywed daughter bragged to me recently that her husband can fold a fitted sheet. Pressing for details I found out that he evidently can fold them where they are laying flat.

… like they just came out of the package.

… making Martha Stewart proud.

I think I hate him (just kidding…)

I’ve seen various videos, blog posts, articles and pictures explaining how to fold a fitted sheet. I once saw a 5 step-by-step diagram of how to fold a fitted sheet on a beautifully laminated bookmark.

Because evidently we worry about that while reading…

Evidently a newly laundered fitted sheet can look like this after folding...
Evidently a newly laundered fitted sheet can look like this after folding…

As a student and professor of psychology, it is fun to “look back”. Although I didn’t know it at the time, I definitely had OCD (Obsessive-Compulsive Disorder) as a kid. I’ve given some examples of things I would do to help me feel like I was coping and controlling in class before that made jaws drop. OCD can look different lived out in different people. For me, it meant ordering, organizing, labeling, etc. I had a full-size bed growing up with bright yellow “sunshiny” sheets. I’ve often wondered how that young, OCD Denise dealt with folding fitted sheets. Because you see? I can’t. 

Fold fitted sheets I mean. I must have gotten around that by only having one pair of sheets. When laundered, they went right back on the bed.

I’ve come a long way from that OCD Denise. Now some of you who know me WELL are saying to yourselves, “Honey? You’ve still got a long ways to go!”

But to give you an idea about how far I’ve come, look at the fitted sheet I folded this morning straight out of the dryer. As a matter of fact, I have my very own 5 step-by-step instruction guide:

photo-3

 

1. Remove from dryer and hold up high to avoid pet fur.

2. Shake to allow dryer sheets to fall to the floor.

3. While holding up high, match corner to corner.

4. Fold.

5. Admire work. It ain’t purty. But it’s GOOD ‘NUFF.

Stacked in a linen closet, it does not take up anymore space than one folded perfectly. At least… that’s what I tell myself. You see? I had to learn something. Sometimes you pat yourself on the back, murmur, “Good job!” and go on to something else. It’s “good ’nuff“. The sheets are clean, stacked neatly and await being put in use for the next time I change the sheets out.

Allowing a Fitted Sheet to Rock Your Boat

So when do you determine by reviewing your priorities, when to keep at that “fitted sheet” or when to determine it’s “good ’nuff”? Only YOU can decide.

I’m pursuing a Ph.D. in Psychology. I’m over half-way through and doing well. However, now I’ve reached the detailed statistics phase. And folks? I haven’t had statistics since the 80’s and long before the sophisticated analysis softwares were available. This past week I hit a wall. I mean that both literally and hypothetically. I have been staying up really late reviewing videos and media, reading, Reading and doing more READING, learning SPSS and writing like crazy. As a person who lives with invisible disabilities that include post-concusive syndrome, hearing loss, and Meniere’s disease, I require 8-10 hours of sleep each night just to live a “normal for me” day. I’ve not been getting that. I’m almost cross-eyed with fatigue. So this past week, falling more than usual as a result of that fatigue, I walked into my husband’s home office, showed him a new bruise from hugging a wall with ridiculous and unbridled passion, collapsed on the floor and bawled my eyes out. Do you know what my very wise husband reminded me? “You may not be understanding all of this. Just keep plugging away. By the time your dissertation is complete you will look back on this and realize you are very knowledgeable about your research and understand it well. For now you are doing ‘good enough’ and passing. You don’t need perfection at this stage“. Sometimes we have to “let go” of needing something to be perfect and accept that it is “good ’nuff”.

This past week a lady who has admired Chloe several times sat behind us in church. She leaned up and said something and honestly? I caught about 10% of what she was saying. (In case that doesn’t sink in, I was missing 90% of it <big grin>) I already had my cochlear implant on a special program to utilize the hearing loop in our auditorium. I’m one of the first people to tell folks new to hearing loss, “Don’t fake your way through a conversation“. However, it was obvious she was just saying something about Chloe again. She had a smile on her face, and I was set up to hear through the loop, not someone sitting on my “non CI” side and behind me. So I smiled and nodded my head and turned back to the front. Yup. Poor form on my part. But…

I have learned that if it is important and I responded with a smile inappropriately, someone will respond with a shocked or hurt look, confusion, etc., and I can hasten to explain I wasn’t hearing well. I didn’t see any of that on this lady’s face. She smiled, I smiled, and I determined then and there this “fitted sheet didn’t need to be folded perfectly”. For a few minutes I sat there thinking, “I have no idea what she just said!” I re-analyzed what I saw on her face, her indication of Chloe in a perfect down/stay and sleeping at my feet, a returned smile and decided, “You know? This fitted sheet (conversation) is not folded properly, but it is good ’nuff“! I brought my attention back to the service and felt OK about my decision.

This past Saturday, a fellow client from Fidos For Freedom rolled up to me in her scooter with service dog at her side. She has been with Fidos longer than I have and I consider her a friend and mentor. Another friend of mine and fellow client, Cara, is taking ASL (American Sign Language). She has been practicing her ASL with me during trainings. She is doing great (You rock, girl!). Cara noticed that I was talking to this other client who at times is hard to understand – especially when you have a hearing loss. Cara stopped behind the lady I was talking to and I know she was hesitating to see if she could interpret for me. I wanted this fitted sheet folded perfectly. I said, “I’m not catching what you are saying“. No faking nor presumptions on my part. This fitted sheet needed folded the right way because it was important to me. I love this lady and wanted to “hear” what she was saying. So she got out her little electronic board and began writing. It was what I needed to “hear” too. Cara waited long enough to see if I was “getting it” and then went on her way. I continued to communicate with this lady and left that conversation encouraged and with some great advice. I needed to hear her. I worked to hear her. She worked to communicate with me. Good ’nuff, wasn’t good enough. I needed to communicate 100% effectively with her. So… I did.

Living with invisible disabilities or chronic illness means that YOU have to decide what your priorities are and when to determine a task is “good ’nuff”. Only YOU can determine when you need to make sure something is accomplished to your satisfaction – to your personal standards. There are things you will decide to do that require work. It may mean you use up all of your reserves for the day. If you are into the “spoon theory“, you use every single one of your spoons. There are other things that happen during the day that result in the decision that, “this is good enough”. The worst thing you can do is stubbornly work at folding a fitted sheet that belongs to someone else. Worse, you allow someone else to bully you into re-folding one that you already decided was “good ’nuff”.

Are you one of those (annoying) people who can fold a fitted sheet perfectly? Well:

If-you-can-fold-a-fitted-sheet

 

Denise Portis

© 2014 Personal Hearing Loss Journal

Inclusion

Published on by hearingelmo1 Comment

back up1

A friend of mine from high school works for KIT (Kids Included Together) and I’ve enjoyed following her training schedule on FaceBook as it takes her literally all over the world. KIT, “… specializes in providing best practices training for community–based organizations committed to including children with and without disabilities into their recreational, child development and youth development programs” (KIT, 2014, para. 1). I touched base with her recently to ask if she and I could dialogue about what inclusion looks like on a community college campus. I want to be more involved at my workplace with the Student Services department and Disabilities office to help raise awareness about what disABILITY, chronic illness, and invisible conditions are (and are not), and to help train professors and staff to provide an atmosphere of inclusion, acceptance, and a place to grow for all who are differently-abled.

There seems to be such stigma attached with certain diagnosis or disABILITIES. I cannot stress to fellow professors how important it is to let students know at the very beginning of class:

1. You welcome transparency about any and all invisible illnesses, chronic conditions, or disabilities.

2. You provide assurance of confidentiality.

3. You provide a platform in which students can provide feedback about classroom procedures or policies that make it difficult in light of their diagnosis or condition.

4. You become a “safe person” to any who wish for a faculty advocate to coordinate with Disability Support Services and/or other faculty.

Some unfortunate stigmas attached to living with a disability or chronic condition, include:

1. You are looking for special favors because you are “special”.

2. You are not capable of doing well in class because you have to do things “different than the norm”.

3. You have a persecution complex.

4. You are a drama queen/king.

Some of the strongest people I know are people who live daily with an invisible illness/disability or chronic condition. They not only often have to find “new ways” to do something that to the normal person seems “easy” (for example, washing hair… pretty darn difficult if you have a balance disorder), but they also have to navigate a world that harshly criticizes, misunderstands, or labels folks who struggle with these issues. Some of the most difficult invisible illnesses to positively advocate for are those with mental illness or disorders. Good gravy, talk about your stigmas! They are often considered “crazies” or “fragile”, and people often avoid them after disclosure. This sucks IMHO. Some of my favorite people are those who happen to have mental illness or disorders. Talk about your resilient people! 🙂

Real Responses that HELP

As I have been thinking about inclusion from an adult perspective, I have found that in many arenas, peers, co-workers, and colleagues want to make their event fully accessible to you but do not know where to start. I have learned in the decades I’ve lived with invisible disABILITY, that we should strive to not only point out the problem – but also the solution. So here is where I need your help. I want to put together a document that can be downloaded by readers so that folks can use the collaborated effort of YOUR ideas to assist when they have problems of their own.  So email me your examples, and I will include them! denise.portis@gmail.com  – in the subject line please put: Hearing Elmo Problems and Solutions.

Here are some examples of my own to get your brain working on ideas yourself! Not all are “cut and dry” problems and solutions. Sometimes the solution is simply a candid response. Read on:

1. PROBLEM: It doesn’t help when you yell when I’ve indicated I can’t hear you as added volume distorts your words and draws attention to both of us.

SOLUTION: If I have indicated I didn’t hear you, please make sure you are facing me. It helps me to see your face. Speak in a normal tone and try not to over-enunciate words as this distorts the way it appears on your lips. If I still cannot make it out, consider writing it down, or re-phrasing it.

2. PROBLEM: It’s great to have accessible venues as long as the accessibility options are available.

SOLUTION: Are there elevators available for those who cannot take stairs? Please make sure these are not blocked. (At a recent workshop I attended, when the elevator opened, the registration desk was backed up to the opening, blocking the exit. They were horrified and quickly moved things, saying, “We didn’t know someone was attending who needed this“. It’s actually against the law to block accessible options from use. This includes handicapped parking, bathrooms, ramps, making sure hearing loops are actually switched on and working, and much more. (I once complained that the handicapped stall in the ladies room had been “out of order” for a couple of days and was encouraged to use the other available stalls until it got fixed. WHAT? *grimace*).

3. PROBLEM: People think if I just plan ahead and “rest up”, I will be able to participate in an event.

SOLUTION: When I have to bail even last minute on something I hoped to attend, I try to provide as much notice as possible. You may need to remind organizers or colleagues that how you feel “day to day” is often out of your control and that you regret the late cancellation. Something as uncontrollable as the WEATHER can wreck havoc with my plans. We aren’t trying to be butt-heads and we very likely really wanted to participate. Please do not make it worse by giving us a hard time or insinuating we planned poorly.

4. PROBLEM: The workshop has several small group activities but the room does not allow the groups to separate very far. This may cause difficulties for those with any degree of hearing loss with the “bee hive” effect.

SOLUTION: Go up to the workshop facilitator and request to allow your group to go out in the hallway, or a nearby room so that it is quieter so that you can participate. (If you know in advance the workshop may incorporate these kinds of activities, see if the conference/convention center has assistive listening devices, or invest in your own so that you can carry it with you always. Be a “hearing loop” advocate! http://www.loopamerica.com/?gclid=CjkKEQjwttWcBRCuhYjhouveusIBEiQAwjy8IG2XkFTiQkOxeExJVBKV8kaOwZxqjxKgqTGAMSh4Ktzw_wcB)

I look forward to receiving your own ideas and together presenting a form we can share!

Finally, you may be wondering about the picture I chose for this week’s post. The truth of the matter is, we all have the power to wound or injure another person with words, actions, or lack of action. I want to remind my own community of folks who live with chronic illness, or invisible disability that you are not alone. Yes, people can and will hurt you. But there is strength in numbers and you are not alone. I get knocked down from time to time, but you seriously are going to need “back up” to keep me down. This community is very resilient. We bounce back because we’ve learned there aren’t a lot of other options.

Send me your own ideas of problems and solutions to things that you have perhaps experienced yourself. I leave you with one of my favorite “list graphics”:

my chronic illness

Denise Portis

© 2014 Personal Hearing Loss Journal

Kids Included Together (2014). KIT: About us. Retrieved on June 8, 2014, from http://www.kitonline.org/html/about/kit.html