It’s Not Easy Being Green

I love Kermit. For the record, I loved Kermit before Miss Piggy loved Kermit. In the early 70’s, Kermit first poignantly croaked out that “it’s not easy being green”. Being green was something he could not help. It simply was.

This song has since been associated with people lamenting their own self-identity, yet coming to terms with “it being what it is”. By the end of the song, Kermit admits it’s OK to be green and that it is how he wants to be.

Am I OK Being This Way?

Something I have struggled with in acceptance of acquired disabilities is “the new me”. You see… I wasn’t born green. I can’t even say the transformation was similar to the beautiful miracle and mystery of a caterpillar changing into a butterfly.

And yet… it’s not like I asked to be late-deafened. It’s not like I asked to have a balance disorder like Meniere’s disease. But just like Kermit being green, it is what it is. There is no changing it.

So if this is me now, am I OK with it? Anyone with acquired disabilities ever struggle with that acquisition? If I asked for a show of hands, you’d first notice my own raised palm. I think you’d also notice a great number of hands. You aren’t alone.

Like many of you, I feel good about who I am much of the time. But I’d be lying if I said it’s always easy to be me. It’s not. So what to do?

Acceptance ≠ Resignation

I’ve never heard a person with acquired disability or chronic illness say, “This is easy”. It’s not. Yet do you know what I have discovered? I have this fuzzy, old memory of “life before disability” and IT STILL WASN’T EASY. My friends? Life is not easy. If you haven’t figured that out yet then you are still very young. Or, perhaps you are a frog.

I am discovering that acceptance of where I am (or even where I may end up), does not mean that I give up. Nor does it mean that I am resigned to an unhappy, unfulfilled life with no chance of ever giving back or having a purpose.

I get some “flack” with some of my readers about using the word “disability”. Rest assured, I welcome ALL opinions and discussion about the posts here at Hearing Elmo, as do the guest writers who participate. Some have suggested that using the term disability lowers one’s expectations and influences self-esteem. I understand the argument and point of view by those who believe this. I use the term because it is the terminology used by the ADA which ultimately protects my rights as a person with disability. It is about my freedom as a person who negotiates life a little differently. You may use disabled, differently-abled, special challenges, etc. In the end though it is green; though some may call it lime, olive, or chartreuse.

So today, August, 20, 2012, I am a person with disabilities. It’s not easy. But it isn’t impossible. Bottom line, because of who I am today, I compromise. I’m going to Hershey Park with a big group of couples from our church. I’m the self-designated pocket book holder. I won’t be riding any rides. I cannot. But I anticipate a day of fun and fellowship with other folks my age. I don’t choose not to go. For me, that would be giving up so it is not an option.

I don’t use the phone well, but I can use captioned phones, assistive technology, and my cochlear implant to make do. I use email a lot – and yes, FaceBook too. I walk like the world is in motion – especially on rainy days. Yes, yes, I know. The world IS in motion, but trust me! My earth’s rotation is faster than YOUR earth’s rotation. So I often walk with a cane. I have an assistance dog who counter-balances, and retrieves things I drop. I say, “Whoa!” a lot.

Don’t Pin a Super Hero Cape on Me!

Before you pin a super hero cape on me, please know that I don’t always have good days. I don’t always wake up and believe I can take on the world. I do not always look in the mirror and like what I see. There are times I worry about where I am in terms of what I can and cannot do. What is important, I believe, is what you do after having those very normal feelings. Worried? Totally normal. Depressed? This can be a very normal reaction. Pissed? Believe it not, being angry is a normal response to acquired disability. When you STAY worried, depressed, or pissed it becomes a problem. Don’t be afraid to talk to others. Perhaps you need to see a counselor. Maybe you need to do something just for YOU to work off some of that negative steam.

You will never hear me say it’s easy being green. It’s not. But acceptance of where we are allows us to then LIVE and even to give back – to be productive and have a life of purpose. Just like Kermit croaks, we may not be sparkly and flashy like others. Within each of us is the desire to discover and acknowledge that our being green – is OK. Perhaps even good.

I welcome your thoughts on this!

Denise Portis

© 2012 Personal Hearing Loss Journal

It’s Not Easy Being Green lyrics

It’s not that easy being green
Having to spend each day the color of the leaves.
When I think it could be nicer
being red or yellow or gold
or something much more colorful like that.

It’s not that easy being green.
It seems you blend in with so many other ordinary things.
And people tend to pass you over
’cause you’re not standing out like flashy sparkles in the water
or stars in the sky.

But green’s the color of Spring.
And green can be cool and friendly-like.
And green can be big
like an ocean
or important like a mountain
or tall like a tree.

When green is all there is to be
It could make you wonder why, but why wonder why?
Wonder, I am green and it’ll do fine
it’s beautiful!
And I think it’s what I want to be.

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Unexpected Perk, or Bother?

Several of the emails I receive through Hearing Elmo each week are questions about assistance dogs. This week is actually “Assistance Dog Awareness Week“, so I wanted to take a few minutes to talk about life with an Assistance Dog.

The first thing I always tell people who have questions is that if you are not prepared for the fact that an assistance dog will draw attention to you, then PREPARE YOURSELF. More importantly? If you are not comfortable with the attention, then an assistance dog is not for you.

Because I have a hearing loss and because I don’t hear well in stores or crowded places, I am oblivious to all the comments my family members DO hear. “Look at the dog!” “Oh look, a working dog!” “Why is that dog in here?” “Mom, why does that lady have a dog in here and why is it wearing a saddle?”

Assistance dogs lend independence to those who chose to mitigate their disability or illness with these special canines. I never worry about missing a phone call. I can do laundry without assistance from a human family member. I no longer burn supper. I always know when someone is at the door. I can shop and go out in public and never worry about not being able to bend and pick something up – important as I constantly drop things.

Some things you may not know that are actually perks of having an assistance dog?

1. Pre-Chloe, a routine doctor’s visit would result in the 3rd degree about why I always have so many bruises. It can be tiresome to field questions about whether or not I’m in an abusive relationship, when I simply fall or run into things a great deal because of Meniere’s disease. Now, Chloe lends legitimacy to those bruises. She reminds doctors why I have bruises because folks don’t go to the doctor with a dog partner if they didn’t need the assistance.

2. I’m rarely bumped into or shoved out of the way now in public. When you don’t hear well in these venues, impatient shoppers who don’t give a “fig” about why you are standing looking at dancing electronic flowers in the garden department, assume I’m being stubborn about moving to let them by. Now they see Chloe and if she doesn’t notice them and cue me, they carefully maneuver around me.

3. I never receive comments like “It’s a little early to be drinking isn’t it?” or “You should be ashamed of yourself” when I’m seen weaving a bit on rainy weather days (comments that have really been made). In the past, if I slammed into an end cap in a store, those around me assumed I was high or drunk. Now people see Chloe and think OR SAY, “Gee, it’s great she has that dog to help her”.

4. I’ve grabbed onto a fellow client’s scooter before (sorry, John) when I almost fell down. He understood. However, when what you grab is a nearby shopping cart, others aren’t as understanding. I once had a grandmotherly person stick her finger in my face and sternly say, “Let… GO”. I mumbled an apology and went my way. Now that I have Chloe, the most anyone will say in a “near swoon” moment is “Are you OK?”

Assistance dogs help people with hearing loss, mobility issues, seizure alert, PTSD, diabetes/blood sugar alerts, vision loss, balance problems, fine motor skill difficulties, and much more. I hope the next time you see someone with an assistance dog in public that you maybe take a minute and tell them that you think their independence with their canine is a great testament to courageous people. Don’t pet the dog or distract it though (grin).

Denise Portis

© 2012 Personal Hearing Loss Journal

Attracting More Flies

Photo by Deborah Marcus, February 22, 2012, North Carolina

I just purchased a book through Amazon, Benjamin Franklin’s “Poor Richard’s Almanack”. I’ve always enjoyed books like these and have seen a number of quotes from this book over the years.

One American proverb from this book that many people have heard has to do with honey.

and vinegar.

and flies.

 Benjamin Franklin, “Tart words make no friends; a spoonful of honey will catch more flies than a gallon of vinegar” (Franklin, 1980).

When I first heard this quote I remember thinking, “Well who in the heck wants to attract FLIES”? Having grown up on a farm in SE Colorado, I can tell you that flies were a problem. The animals hated them, farmers hated them, and children relegated to policing the house with fly swatter and tissue in hand hated them!

However, like many quotes, you have to look past the surface to get at the true meaning. Gee, had I known vinegar would have kept them away I may have started sprinkling it around and dabbing it behind my ears.

Ok. Maybe not.

We don’t need to go raid our friend’s hives for honey, either. This quote has to do with being tactful – on purpose.

You know what I’ve discovered? To be tactful, I DO have to be purposeful about it. It is super simple to be tactless. Especially when angry! I’ve learned that if I’m to be tactful, thereby attracting more attention with my “honey”, I have to set out with very real purpose ahead of time. It seems we were created to have a lot of excess vinegar on hand.

Tart Words

I think a lot of folks do not realize that the quote begins with, “Tart words make no friends”. Last week I received a lot of private responses about the post “A Special Kind of Stupid“. Some things people with disabilities shared with me made me very upset. You just would not believe some of the things that “normal” people say to folks with invisible illnesses or disabilities. Then again, if you follow “Hearing Elmo”, perhaps you would believe it as you likely have some connection to the disability or chronic illness communities.

Though it may be difficult, we really have to remember to put a cap on our – erm – vinegar when responding to some of the stupid things we hear in our day-to-day lives.

No, She Is Really Unhappy

Take an example from last week in “A Day in the Life with a Service Dog”. At Walmart, as per my usual mid-week major errand, Chloe and I ended up attracting some attention. As I outlined in an article for Gale Hannan at “Hearing Health Mattters“, if you don’t like attention then do not mitigate your disability with an assistance dog. You are going to attract attention. It becomes easy to ignore and if you are deaf like I am, you don’t even hear all the exclamations of surprise. However, sometimes I’m stopped. Dog-lovers like Walmart… or so it would seem. Most of the time I am very glad to stop and answer questions. I carry information about hearing dogs and balance-assist dogs with me for opportunities just like these. I’ve discovered, however, that if I stand around TOO LONG, folks begin to unplug their brains before asking questions. There is this “fine line” of how much time is “long enough”, prompting me to move on with my shopping. I evidently have not discovered that important timeframe yet. As I answered this lady’s reasonable questions, a lull occured in our conversation. That should have waved the red flags for me. Heck I’d take explosions in my underclothes if I could learn to pick up these cues.

But nope.

I stuck around too long.

“So does your beautiful service dog ever get to just be a dog? Does she ever get to play?”

Vinegar began pooling under my tongue. Chalk it up to living with a house full of very sarcastic people. I wanted to say, “You know? As a service dog she needs to earn her keep. The vest comes off at night and she is allowed to finally rest. She’s a working dog – not a playing dog. It wouldn’t do me any good for her to go around thinking she could ever play, right?” (said with saccharin sweetness).

Tactful Responses Ultimately Educate

Instead I swallowed the vinegar (grimace) and plastered on my best “WHAT A TERRIFIC QUESTION” face and replied, “Well she is a dog! She is a beloved member of our family. She gets play breaks at work and doesn’t actually wear her vest at home. She still does alerts and helps while at home, but she is off duty more than she is “on”. A healthy service dog is allowed to just be a dog. That is why she loves working for me. I set very realistic boundaries and expectations”.

Being tactful and pleasant is important if I’m to hope that I play even some small part in helping to educate others about hearing loss, balance disorders, and service dogs. If I’m angry and belligerent, I’m not going to “win friends nor influence people”.

And neither will you.

However…

Is It Ever OK to “Let ‘er Rip”?

I have lived with hearing loss and balance issues more than half of my life now. That means I have some experience. That does not mean that I do everything right. Folks ask me from time to time when it is OK to put others in their place.

We can’t exactly take out a megaphone and announce to everyone within earshot, “This person just said something STUPID”.

To demean others is never the right way to go. For one thing, it only makes US look bad. You certainly won’t promote education, compassion, or understanding in others if you deliberately embarrass or fuss at them. Having said that, I do believe that there are times that responding with sweetness and “honey” may not be the right answer. After all, it may be that you no longer WANT to attract that particular person who simply cannot and WILL not treat you like a normal human being. I believe the right time to load your water pistol with vinegar occurs when:

1. You’ve responded the right way over, and OVER again.

Maybe it is a family member that thinks their comments are funny. Maybe it is a co-worker whose remarks border on the unkind. At some point you may discover that the only way to educate someone is to be a little more FRANK – pardon the pun Benjamin Franklin!

Tired of the eye rolls and deliberate condescending response at a dinner table of “I’ll tell you later” after asking for a second repeat of what someone said? Perhaps it is time you gently laid your hand on their arm and said in a normal tone (for they likely do NOT have a hearing loss), “You know? It hurts my feelings when you say that and sigh and roll your eyes. I only want to hear what you said. You never actually remember to tell me later what it was. Don’t blow me off. What was funny? I want to participate in your life. I care about these moments and we will never re-live them or have them as “do overs”. I want to know what you said because I love you”. Others at the table may have grown quiet at this calm announcement. But that can work in your favor too. Sometimes educating others occurs by observing someone else getting educated. You may have let a little vinegar taint what you said. A little “sting” may be necessary to get through to calloused hearts.

2. You respond in defense of others.

Sometimes you may need to put up the honey aside and gear up with vinegar in order to stick up for someone else. I’m much quicker to speak up to a bully when the person being picked on is NOT ME. This has to be done carefully, however, as you do not want to take away an opportunity for someone else to stand up for themselves. When you live with disability, chronic illness, or invisible differences, you need to learn to be as independent as you can. It is healthy. You may need assistance in technology, puppy power, or by swallowing your pride and learning to ask for help.

However, there are times I believe, that we should step up and even figuratively lock arms with another who is being misunderstood to let them know they are not alone, and let a bully know they are being irrational – or STUPID.

We Won’t Always Do it Right

I can be a sour puss. Vinegar is more likely to run through my veins than honey. I’m allergic to bee stings.

Sometimes I blow it. I respond as if I don’t care if someone better understands disability and hearing loss. As a person of faith, I know this dishonors not only me, but also God. I have learned to say “I’m sorry” – and really mean it. Acknowledging that you aren’t feeling well today and mis-spoke or are feeling belligerent and should have kept your mouth shut shows maturity. Did you blow it? Well make it right. You know what to do.

Franklin, B. (2007). “Poor Richard’s Almanack”. Skyhorse Publishing, Inc. New York : New York, p. 44.

Denise Portis

© 2012 Personal Hearing Loss Journal

Sometimes? You Are Going to Have a Bad Week

Chloe was having a pretty good week. At least she was until I told her to get in the bathtub. NOT her favorite thing. If “hound dog” could do forlorn, then honey? She’s gonna do FORLORN in the bathtub covered in suds.

While I scrubbed her and told her what an awesome dog she was, intervening during those “I’m gonna shake” moments, I thought about how quickly things can change.

Chloe was happy and excited to get home from class today. She was rough-housing with her buddy, Tyco, when she heard me call her upstairs. She came running with her tail all a-wag. I told her to get in the tub and proceeded to break her ever-lovin’ heart. She is drying and pouting over in the sun as we speak. If I’m lucky, she’ll have forgiven me by suppertime.

Spring has “sprung”, I’m getting a handle on my new schedule, Terry and I just took 2 days away to re-group ALONE (grin), I’m feeling very connected and supported at my primary “free time” activity (Fidos For Freedom Inc., in Laurel, MD), and then it happens. When you can see change coming you can run like mad… or at least brace for it. But sometimes? Well sometimes change smacks you up side the head like Gibbs smacks DiNozzo. It’s completely by surprise. You lay on the floor, dazed and confused, staring up at the ceiling fan thinking, “What just hit me?”

I’ve even let this unexpected negative “change” suck me into an old habit of depression. I could feel it creepin’ up on me. I’m blessed to have a live-in psychologist and I made sure I changed my “8 hours of sleep a night” to 10 hours immediately. That seemed to help. That in addition to some time since the SMACK DOWN, I’m feeling like I can do this thing called life again, despite the newest challenge. Change can be hard and can create a lot of stress. Heck. I was having such a meltdown (as were other members of the family), hubby announced “Let’s go out to eat for supper!” I begged and pleaded and implored him to allow me to fix supper (yeah, right!), but he insisted we go out to eat. We walked out the door discussing these serious issues that “done smacked me up ‘side the head” and half way to the car my husband stopped dead in his tracks and interrupted me saying, “Um Denise? Where’s Chloe?”

You know the service dog who is with me 24/7? The one on the other end of the leash every waking moment of my life? Poor forgotten Chloe stood inside the locked house door whining and whimpering. So yeah. I am THAT distracted by my smack.

There are various proverbs that remind us that life is not easy. Everything is not always going to go well. Sometimes bad things happen. It doesn’t matter if you have disabilities or not. Life can be very, very good. Yet any of us who have lived enough of it know that it can also be hard. I survive because of my 3 “F’s”: Faith, Family, and Friends who care. Surviving is sometimes one day at a time, one week at a time. This is why people with disabilities should take care not to isolate themselves. It’s so easy to do. Isolation is even easier than having to face interacting with others while learning to live successfully with a disability. But isolation is dangerous. We need others. Others help us do that “surviving” thing!

I for one and very glad to see Monday this week.

Chloe, on the other hand, is just glad her monthly bath can be chalked off.

Denise Portis

©2012 Personal Hearing Loss Journal

Time Off

Chloe's vest comes off and she gets the "beach rules" from Denise. Unaccustomed to being "vestless" in public, she was very attentive and unsure in the beginning

 

As a surprise, my husband reserved a couple of  nights in a motel at Ocean City, MD, while we were on spring break from work. (One of the perks in working for a college). Apparently March is the time to go if you are not a crowd lover – or “sun” lover. Too cool to lay out or play in the surf, but beautiful weather for walking and many opportunities for quiet time.

Chloe is normally “working” when she is in public. Determined to give her some time to just be a dog, I removed her vest for large amounts of time. She was at first a little timid about being without her vest. Once she saw some other canines on leash though, the wag was back in her tail. Even working dogs need down time. People ask me all the time if Chloe gets to relax. I always have to grin. Chloe is almost 8 years old and at home? Well, let’s just say she knows how to relax. She doesn’t wear her vest at home, but she still alerts to timers, my phone, or my name being called. But she naps (and snores), she plays with her buddy, Tyco (our family dog), she has several squeaky toys, she squirrel watches, and eagerly awaits family members coming home.

Chloe enjoys working though. She danced her way on campus just this morning and wagged her way all the way to the elevator. Sometimes I wish some of her “wag” would rub off on me as 7 AM classes on Monday seemed awfully early to me after a week off!

Everyone needs time off. It can be hard to do if you are working to pay bills, save money, or try to get out of debt. But time off can be in small, “mini” vacations. Even an hour or two here and there can be very beneficial in helping a person re-group.

People with DisABILITIES Need R&R too!

I have met a number of people with various disabilities that have confided that they rarely do what others call “fun” things. Think about it for a minute. If people who walk without assistance, hear without assistance, see without assistance, and speak without assistance enjoy things like movies, walking, reading a good book, or hanging out with friends, well? It just may not be that easy for others.

I like going to the movies. I went to see “The Hunger Games” over spring break with my husband and 21-year-old son, Chris. But I don’t get the same level of enjoyment out of movies that they do. Even with Chloe by my side, I am very disoriented in the dark, especially if my cochlear implant is picking up the very loud commercials and previews on the screen. As I make my way to a vacant seat, I am often fighting the effects of vertigo. After I get seated – hopefully in a place where people won’t have to crawl over my assistance dog and I – it takes a number of adjustments to find a good program on my CI to best hear the movie. If I do that, I sometimes find it difficult to converse to the person right next to me too. At times I miss things said in the movie. If I’m with someone I know well, I’m not bashful and will lean over and ask, “What did they say?” There are not any captioned theaters close to my home (although I am glad there are some within an hour’s drive), so most of the time I go to the same movies you would attend. However, not having captions mean I have to really pay attention! Can I just be honest and say that I’m unable to eat popcorn and catch an on-screen conversation at the same time? (BIG GRIN). I have to really focus and concentrate to understand what is going on. So it is still “fun” for me… just not perhaps the same level of “fun” it may be for you because it does take WORK.

For some, sitting down and reading a book may not be “fun”, and it doesn’t mean they don’t enjoy a good book. Some folks have trouble even holding a book, or turning pages easily. Taking a walk may relax YOU, but for someone who has Meniere’s disease it can be difficult to do a simple walk. My world constantly turns counter-clockwise. It is a slow rotation, mind you, but a rotation nonetheless! On high humidity days, the rotation picks up speed – one of the reasons I just don’t try to walk on days like that! So walking on a sidewalk in a straight line takes concentration. I have given up walking with family members. Although I enjoy the conversation, I cannot talk and walk at the same time! I can talk to my walking buddy, Chloe, and she just listens. I don’t have to worry about her end of the conversation and my having to make sense of what she said while still putting one foot down in front of the other. We love to go into the woods on trails and in grassy areas too. This requires even more concentration. I usually shut up at this point as I have to carefully balance each step. So yes… I enjoy walks but probably not on the same level you do.

Despite having to make adjustments and find a new way of doing seemingly mundane things, even folks who are differently-abled need to take breaks. Perhaps even a lot of them! They may be in the form of naps. I am learning that napping or resting is a necessary requirement for many people with certain kinds of invisible illnesses. I require 8-10 hours of sleep a night. (When I tell people that, they FALL OUT, but if it helps you get through a day “hearing well”, you do anything necessary). Others may require a nap – or TWO. They aren’t lazy. They aren’t depressed (although just like anyone, people with disabilities can and do get depressed). They simply require some extra rest in order to continue a day’s work.

Chloe "relaxing" on a mini vacation at the beach. She really knows how to de-stress!

Careful not to judge. You may wonder why someone doesn’t enjoy the same kind of “down time” you do even though you have the same disability. Each person has individual differences in their disability. I have a friend who enjoys running in his spare time. I’m talking about REAL races… the kind where you take off after hearing a starting pistol! He’s an incredible runner and does very well. He is a bi-lateral cochlear implant user. When I first met Sam, I was astonished to hear what he did for fun! Having hearing loss and balance issues, running isn’t something I can enjoy.

I’m not saying we shouldn’t look for others who are struggling with some of the same issues. We can mentor, give advice, and support someone else in a way that will give them the tools they need to live a victorious life. But do be aware that you may share a diagnosis, but have different symptoms, struggles, and issues. We can still be a listening ear and give encouragement. Just be careful about insisting on something that works really well for YOU, because it may not work really well for them.

I’d really love to hear about some of the ways you choose to unwind! What do you do to relax? What is FUN for you? What do you need to do in order to enjoy some of the things others do without accommodation?

Denise Portis

© 2011 Personal Hearing Loss Journal

 

 

 

 

 

I Have Meniere’s Disease – Harsh Reminder

I have Meniere’s Disease. It is easy for folks to forget that as the disease is “invisible”. Amazingly, I sometimes forget I have it myself. So that is just embarrassing! GRIN. Meniere’s disease manifests itself in individuals in a variety of ways. The disease lacks specific symptoms and triggers that are true of everyone. The disease varies person to person. For myself, the weather tends to be a very specific trigger for me. If pressure systems come into the area that include heavy rains or even high humidity, I know that I will have a “bad balance day”. If that day is simply the beginning of a string of similar weather days, I can be so off-balance by day 3 or 4, that I practically have to CRAWL up and down steps. It’s rather embarrassing to crawl when you are 45 – believe me!

Here in Maryland, we have had a significant amount of sunny, low-humidity days. As a result, my balance has been pretty good. Yesterday, I did laundry and actually jogged up and down the steps WITH a laundry basket. Yet I forget sometimes that in spite of my having few visible symptoms, I still HAVE Meniere’s disease even on bright sunny days.

Chloe does a number of things for me, only some of which are hearing alerts (what she was originally trained for at Fidos For Freedom). Chloe has also been trained to help me with a number of “balance assist” tasks which are very helpful on days I am experiencing Meniere’s disease symptoms. As a matter of fact, there are weeks that Chloe actually does more balance work for me than she does hearing alerts. One thing we have taught her to do is to “roll” her own blanket. I carry a blanket that is HERS. The blanket goes to every place I teach. It smells like her and she knows it is her “safe place” to be unless I ask her to do something for me. I usually put it out of the way in the classroom, but where she can easily see me. The blanket and Chloe are usually within 4-5 feet of me at all times. Below is a video of Chloe “rolling” her blanket — she adjusts the carpet square to be high enough that I can easily reach it without having to bend past my limitations.

Harsh Reminders

I get aggravated at family and close friends sometimes when they make suggestions for me to do something or try something that they KNOW I cannot do. It’s easy to forget certain things I cannot do because I don’t walk around with a sign on my shirt that says, “Beware of fall when bending!” You know what? Sometimes the person who forgets what I can and cannot do is – ME. You’d think I’d always be aware of the fact that I cannot bend to get something off the floor without paying the price. For me… bending far enough to retrieve something off the floor means that I lose consciousness for just a few seconds. Everything goes “black” in my vision, and my “hearing” (even with a cochlear implant) turns off. As soon as I stand back up, everything snaps back into focus. If I bend quickly, (for example to try and catch something as it is falling), I usually “join” the item on the floor… only I am sprawled out looking ungainly and mystified as to how I got there.

We’ve had beautiful weather here in Maryland lately. I need to remind myself on days like these that I still HAVE Meniere’s disease. In class this morning, I began gathering my things up to pack into my bag and exit the room. I dropped my roll sheet, so Chloe went over to pick it up and bring it to me (an automatic retrieve). As I was standing next to her pink blanket, I decided to save myself time and reached down to pick up her blanket. I lost my balance and my forehead crashed into the podium. After connecting with a wicked CRACK, the impact popped me back on my caboose. Thankfully, I didn’t lose consciousness. Chloe trotted over to me with the roll sheet and dropped it into my lap. She wagged her tail at me, nose 3 inches from my face.

“Hey Denise! Umm… why are you on the floor?” (Yup. I can read my assistance dog’s mind. Scary, huh?)

“Guess I should have had you roll your blanket, huh Chloe?”

Upon hearing “roll blanket”, she calmly rolled the end of the blanket and then tugged it over closer to where I sat.

I heard a student over my shoulder ask, “Ummm. Mrs. Portis? Are you OK? Was that your HEAD?”

I tried to chirp out in a manner that was convincing, “Oh sure! I’m fine, no problem!”

As I used Chloe in a stand/stay to get off the floor… I thought to myself one word – over and over again.

stupid

Stupid

STUPID!

Harsh reminders are needed from time to time, if not for any other reason than to remind us of the consequences of forgetting our own limitations.

We need to remember our own limitations. As a person with hearing loss, it helps me to remember that I cannot hear well in really noisy, crowded areas. If I need to have a conversation with someone, it is better to ask them to step over to the side out of the “hub-bub” of noise if I need to talk to them. Failure to acknowledge what I cannot do well (hearing in noise) only results in that I will be frustrated and angry at my inability to understand the conversation. If I want to play with my dogs, I need to remember to sit on the floor in order to tug on toys, throw balls, and squeak stuffed animals at them. If I try to “play” standing, I am sure to take an unplanned nosedive.

Have you had some harsh reminders about your own invisible illness or disability? Some lessons are hard to learn!

Denise Portis

© 2011 Personal Hearing Loss Journal

Reflections on National Invisible Illness Awareness Week

According to the Invisible Illness Awareness website, the following statistics are true:

  • Over 100 million people in the U.S. have a chronic illness;
  • 20.6 percent of the population, about 54 million people, have some level of disability;
  • 9.9 percent or 26 million people had a severe disability
  • 1.8 million used a wheelchair
  • 5.2 million used a cane, crutches, or a walker
  • So that is less than 6% who have a visible illness.
  • There are many illnesses that start out being invisible and as the disease progresses it becomes more visible.

Also note that:

  • 26 million persons were considered to have a severe disability;
  • yet, only 7 million persons used a visible device for mobility.
  • Thus, 19 million of the people who were defined as severely disabled, did not use a wheelchair, cane, crutches or walkers.
  • In other words, 73% of Americans with severe disabilities do not use such devices.
  • Therefore, a disability cannot be determined solely on whether or not a person uses visible assistive equipment.

U.S. Department of Commerce (1994). Bureau of the Census, Statistical Brief: Americans With Disabilities. (Publication SB/94-1).U.S. Department of Commerce (1997). Bureau of the Census, Census Brief: Disabilities Affect One-Fifth of All Americans. (Publication CENBR/97-5).

Why Do I “Plug” Invisible Illness Awareness Week?

I have been trying to raise awareness about this week for three years now. This year, a friend noticed my “don’t miss” posting on Facebook and couldn’t resist teasing me about it. After all, I don’t exactly allow my challenges to be INVISIBLE. I wear a bright red ear mold on the hearing aid in my “deaf” ear. I wear sparkly “bling” on the cochlear implant on my “hearing again” ear. I go about my life accompanied by a hearing assistance/balance assist dog 24/7. I learned long ago that it was in my best interests to make an invisible disability – VISIBLE. It kept me from being knocked out of the way, and helped people realize that something about me is different. I can still work, shop, go to movies, hike, and dance… yeah. OK, maybe not that last part…

I just don’t hear well… especially in big, cavernous places, or busy, buzzing atmospheres. Once you get my attention and I know you are talking to me, I can actually hear you great! I may have to ask for a very occasional repeat, but for the most part I do really well. I’m proud of how far I’ve come in my hearing. Despite all my visible reminders and “kissing sidekick”, Chloe, people who know me well (friends, co-workers, and family members) will forget that I may have trouble if you don’t get my attention first and that I can’t move FASTever. Heck… sometimes even *I* forget that I cannot move fast. Nothing reminds me quicker than when I

fall

down

and

go

BOOM!

Through the years I’ve been able to meet some wonderful people. Some examples include:

1) Folks through the training center at Fidos For Freedom.

2) People at Hearing Loss Association of America conventions or conferences

3) “Hearing Again” recipients at Cochlear America conferences

4) Individuals in support groups for tinnitus, Meniere’s disease, hearing loss, and assistance dogs users (both face-to-face and in virtual environments online).

Not every disability can be made visible. Not every person chooses to even try and make something invisible – visible. They have their reasons and it is an individual’s choice how they want to disclose or keep hidden any disabilities they may have. It could influence their work environment, relationships, and even self-esteem. I choose to support ALL individuals who live with chronic illness, invisible illness, or disability. Recognizing these illnesses once a year in a push for national awareness, I hope will eventually dispel erroneous ideas and information about these very populations. This is one of the reasons I “blog”, and invite guest authors to write for “Hearing Elmo” as well. Raising awareness makes a difference… one person at a time.

I read some incredible stories of courage, faith, and perseverance this week at the national website for invisible illnesses. You can check out some of them here. I’m proud to be a part of a community of people who choose to live a victorious life  – “in spite of”.

Take some time this week if you can to recognize the courageous people that you know who live with invisible illness and the choices they have made in order to live life to its fullest!

Denise Portis

© Personal Hearing Loss Journal