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

Round and Round She Goes, Where She Stops…

… is USUALLY on her nose.

If you live with invisible disabilities or chronic illness, have you ever stopped and tried to make sense of it all? More often should I choose to do this, I find it simply doesn’t make sense. What can be more difficult, however, is trying to help someone ELSE understand what it is like to be a little “different”.

The words disability is a like a nasty tasting curse word to many. Personally? I’m not afraid of the word because it does currently define my rights under the ADA – something I wish wasn’t necessary but is in order to make sure that those who navigate life differently have the same access and rights as everyone else. I’m not here to today to discuss the WORD, however. I am here to bellyache.

A friend of mine posted a link to a terrific article currently taking up space at Invisible Illness Awareness Week. It detailed why it is important to just LISTEN sometimes. You can access the article HERE.

I belong to a number of online support groups for people with Meniere’s disease. I’ve never met anyone with symptoms exactly like mine. As a matter of fact, Meniere’s disease often frustrates perplexed physicians who are trying to help treat the disease. However, because there is no cure, one can only learn to manage and treat the symptoms. What may help one person, does not help another at all.

My assistance dog, Chloe, from Fidos For Freedom Inc., is a big blessing. Originally trained to be a hearing dog, she still performs all her hearing alerts with finesse and enthusiasm. As a matter of fact, 7 AM came WAY to early yesterday morning when my alarm went off. I tried to tell her to go back to bed and stop kissing my hand, elbow, and right ear. My husband rolled over and said, “Hello? Your alarm is going off!” Oh.

But Chloe actually helps me with far more balance related tasks each day than she does hearing alerts. I tried to “track it” one day and she performed 17 hearing alerts (alarm, kitchen timer, automatic retrieve of items I’d dropped and hadn’t heard, door knock, and cell phone ringing) and over 40 “other” tasks. (I quit counting after 40). These usually consist of directed retrieves. I drop things. I drop things a lot. Picking them up myself takes time as a bend all the way to the floor often precedes a fall. To avoid that, I simply let her get them for me. She also acts as a steady brace when I stand, sit, or go up/down stairs. She also acts as a brace if I begin to weave in a large cavernous place. The picture I chose for this post reminds me how bad my visual field was on Saturday. I ran into the mall with my husband to pick up something at a favorite store. When sound echoes, I tilt. (Picture Denise, aka Leaning Tower of Portis). Chloe has a large handle on the top of her vest that works perfectly. On my lower left is a solid helper that keeps my world from being quite so off center. I’ve been in JCPenney before and let go of her handle to look at some clothing on a sales rack. I immediately felt “swishy” because of the tall ceilings and lights. I grabbed out to keep from falling and clutched the breast of a nearby mannequin. I don’t make these things up. Thank goodness she/it wasn’t real, right?

Yet there are things Chloe cannot help me with, too. Here are some things about Meniere’s disease that surprise some folks:

1. Scrolling words or moving backgrounds on PowerPoints make me sick.

Our church places the words to songs and notes for the message on the walls in the sanctuary. This is very helpful for anyone with hearing problems… or ADHD (smile). However, sometimes there are moving points of light or star bursts that move behind the words or notes. I’m fine as long as I’M SITTING.

2. I have to sit to brush my teeth.

Yeah. I know, I know! Strange! But there is something about moving a toothbrush around in my mouth while in a standing position. I have to sit, and there are days I actually have to close my eyes on top of that!

3. Stepping down can be problematic.

This one really bugs me. On sunny days (weather is a trigger for me), I love to hike and climb around. I love rocks. Big rocks. I love heights (believe it or not). However, stepping down more than 6 inches is enough change in my altitude that I black out. It may only be for a few seconds, but if both feet are not on the ground, I’ll be picking blades of grass out of my nose hair. Chloe has learned that a “Whoa!” from me means

Move.

NOW.

4. Must… AVOID… looking… at ROTATING things (gasp)

Ceiling fans are not my friend. Neither are signs hung from ceilings when the air conditioner vents blow on them to make them twirl. For me this means heave, deep breath, heave again. I’m serious. 🙂

5. I shower while looking at my feet.

I didn’t realize how difficult it can be to get clean when you can’t look up at the shower head. Raise your eyes to reach up for shampoo or your razor? Honey? Do you want to get up close and personal to the DRAIN? Heaven help the family member who moves my shampoo or washrag from their designated place. I count on where they are so that I can shower safely… while looking at my chipped toenail polish.

6. Watching the effect of the wind can topple me too!

We’ve had some terrific storms lately. Since it has brought much needed rain, I’ve been loathe to complain. I love standing on the deck and watching the wind blowing the towering pines behind our home. Clarification: I like hanging on to the rail of our deck and watching the wind blow the towering pine trees behind our home.

7. Gingery’s Baby Pegasus can be mesmerizing to my detriment.

My daughter’s 12 pound hairless Chinese Crested likes to spin. For fun. Imagine that. It is quite captivating, but it only means CAPSIZING for me. “Look away, Denise, Look AWAY!”

8. I fuss at my son’s stomach.

My son… you know the one who was 7 weeks premature? He is 6 foot 3 inches tall. He’s a terrific kid. However, even at 21-years-old, he still needs the occasional “mama sermon”. I dare not look up, Up, UP into his eyes. One isn’t able to reiterate needed reminders when flat on the floor. Instead I point my finger and give his belly and chest “what for”. The kid laughs at me. LAUGHS. (sigh)

9. Glass elevators have speckled carpet.

I know this because I only see the carpet in glass elevators. Why not solids? Stripes? Only speckles. This confuses me.

10. I remind my doctor that I will NOT hold my breath while he’s listening to my ticker.

Because… well otherwise I’m waking up with nurses, hound dog, and doctor crowded around. (Why crowd someone who has swooned? Can I just ask that?)

Like many people who get up every morning and “manage” their symptoms, I hope perhaps I’ve helped you understand balance disorders a little better. Feel free to share your own “management techniques”.

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

A Special Kind of “Stupid”

 

On Monday evening, May 14th, David Walters of Bel Air, MD, pulled a fire alarm in  a crowded theater. He was issued a criminal summons the following day and faces a $5,000 fine and up to 5 years in jail. You can read about the story HERE. More on the story HERE.

It seems David was upset that the movie was open captioned for patrons who are deaf or hard-of-hearing. Specific movies (identified at the ticketing counter) allow people with hearing loss to enjoy newly released movies on the big screen. It allows equal access. Sure… we can purchase the movie later after it goes to DVD and watch it at home. But who wants to miss out on the buttery popcorn, movie candy, cherry Icee‘s and being with friends and family at the theater? Nothing beats the big screen! David marches out and complains – evidently loudly. He is offered a refund which he refuses. He goes back in to finish the movie. When finished he comes out again and loudly complains – now demanding a refund. When denied (because he went back into the movie), he gets angry and pulls the fire alarm. This shuts down all the theater’s screens and panics movie goers.

This is a special kind of S.T.U.P.I.D. When I first read about this story, I have to admit. I had some “AVENGER” feelings going on in my own heart and mind for this idiot. I thought, “Wow. If he could live one day in my shoes. It would be poetic justice for him to lose his hearing someday!”

Deaf For A Day

Because I live with both deafness and a balance disorder, I can tell you honestly that really? I wouldn’t wish deafness on anyone. Yeah. This jerk probably deserves it, but hopefully what he’ll get is justice. I hope because he endangered so many people that they make an example of him. I hope everything was done correctly in his arrest so that he doesn’t get off on some kind of technicality.

Each year I ask my students in my ASL1 class to voluntarily participate in a “Deaf For a Day” assignment. Later, they write about it. Most “get it”. They understand what the assignment was about and why they are asked to participate. Each year, however, I have either a student or two, or a parent or two, very disgruntled about the assignment. In the follow-up writing assignment, some disclose how poor of attitudes family members had because they were unable to communicate with their student in a “normal” way.

Yes.

I like to think that should something happen to their child and they lost their hearing, these parents would do all that they could do to be supportive and loving in the transition to a new way of communicating. They may not use ASL even, but technology is not a 100% fix. Even cochlear implant surgery is not 100%. I’m bi-modal (both cochlear implant and hearing aid) and although I hear really well, I still am considered a person with hearing loss. There are times I have to ask for a repeat, or ask someone to follow me to a quieter location.

Put Yourself in Their Shoes

Before you think to yourself that you would never be this “special kind of stupid”, consider this.

Have you ever parked in a handicapped space to save time because you were only running into the Post Office for 5 minutes?

Have you ever sat at a table clearly marked for handicapped patrons at a local fast food place because there were no free tables, and then failed to keep a look-out for anyone coming into the establishment that may need that table?

Have you ever reached to pet a service dog without requesting permission of it’s owner?

Ever felt exasperated (and let it show) while waiting in line behind a mom with a child with autism or other special needs who was having a meltdown?

Have you ever felt impatient as someone with mobility issues that fumbles and drops items while you are waiting in line at the cashier?

Ever see someone stumble or walk funny and immediately think they’ve been drinking instead of thinking they may have a balance disorder?

Ever honked your horn and grimaced at an elderly driver who cautiously entered a very busy intersection during peak rush hour?

Not understanding what chronic fatigue syndrome, fibromyalgia, or Lyme disease actually are, have you inwardly cringed and rolled your eyes while listening to a seemingly endless list of complaints about pain from a co-worker, fellow church member, or acquaintance?

Ever see someone mistreating a homeless person or person with mental illness and not intervened?

Ever stepped into a handicapped stall in a public restroom because the others were full? Exactly how are you going to know someone is there who needs it when you are actually in there doing “business”?

You may not be pulling fire alarms and endangering hundreds of people, but you are still choosing to be a part of this special kind of stupid group. I’ll admit that I’ve made some of these mistakes myself. We all have.

I’m asking that all of us take a minute, however, to think about how we can do better. I don’t know about you, but I don’t want to be a special kind of stupid.

Ever.

Let’s love our fellow man, offer a helping hand when we can, and smile at someone just because it’s Monday. Buy a cup of coffee for the next person in line. Hold the door for someone.

Maybe.

Just maybe…

it will be contagious.

Denise Portis

© 2012 Personal Hearing Loss Journal

If Fish Aren’t Stupid…

I love it when I learn something new. Even when that learnin’ means that it contradicts something I previously thought was true. I grew up on a farm/ranch in SE Colorado. The families I knew, including our own, had all kinds of animals. Common critters included horses, cows, pig, sheep, chickens, turkeys, peacocks, ducks, geese, and even a llama or two! Something you didn’t see a lot of in the family rooms of various ranch houses were aquariums. We had some big ol’ goldfish that grew to an astonishing size in the cow tank near our house. What was even more astonishing than their size is that they survived the frozen tank winter after winter. I can’t remember who first told me that fish are stupid. This was long before “Finding Nemo” even came out in theaters, with Dory convincing us all once and for all that

fish.

are.

stupid.

After I went away to college and married a city boy, I actually lived in town big enough to have cable television. I found that I had a lot of years of catching up to do on Animal Planet, the Discovery Channel, and many other educational animal shows. However it wasn’t until my daughter’s boyfriend – the one who happens to know all there is to know about owning a freshwater tank – put up a couple of aquariums in our home on behalf of beloved daughter, that I began to see freshwater fish up close and personal. As a matter of fact a big 30 gallon tank sits behind my desk, so it is pretty hard to miss the freshwater angelfish swimming around the tank. I very soon discovered that my preconceived notion about the stupidity of fish was – well – WRONG. They really do NOT have 30 second memories. They are affectionate, can remember the easiest “trail” through the freshwater plants to circumnavigate the tank, will follow a person around the tank to “beg” for food, they can be aggressive and yet can be tame enough to actually take blood worms from your fingers. They will live in harmony with other types of fish (but not all), and seem to actually play with each other occasionally. Don’t get me wrong. I’m not ready to whip out an IQ test to see how they fare, but I really no longer believe that fish are stupid.

Other Wrongs – Now Corrected

I just turned 46-years-old this week. That is really hard for me to wrap my mind around. I remember when my mother turned 46-years-old, I was a very young and immature 23-years-old. I remember filling out her birthday card to send from my little apartment in Chattanooga to her “home on the ranch” in Colorado and thinking… “Wow. Mom is O.L.D. She is definitely entering her “senior” years now.” I’ve got to tell you now that I’m 46-years-old myself? Well, let’s just say I want to open mouth – insert foot.

I also grew up with very limited experience with any person with chronic illness or invisible disabilities. I did not have very much experience with people with even visible disabilities. Growing up in a small farming community limits one in that way I guess. It wasn’t until I became deaf and developed Meniere’s disease that I first really began meeting people of all kinds who are “differently abled”. Having an acquired disability today is much different than it use to be simply because we have the Internet that connects us to each other and to a wealth of information as well. I grew up believing that people with disabilities were to be pitied. Knowing what I know now about a community of which I am proud to be a part of, pity is the last thing any of us want. I’m constantly amazed by the perseverance and strength that I see in people with all kinds of various “differences”. I hate to even use the word disability, but it is the language present in our current laws that protect the rights of those who have them. A fellow client from Fidos For Freedom, Inc., first introduced me to the term “differently abled”. I find that this phrase much more accurately describes those who live a victorious life despite any physical, mental or emotional differences they may have. Through networks such as the Hearing Loss Association of America, Cochlear Americas, Invisible Disabilities Community and Invisible Illness Awareness Week I have learned that having invisible issues also creates incredible strength and depth to the human soul. I’ve met some wonderful people who have taught me how to navigate life with grace and a “can do” attitude.

I’ve learned that all of us should “check our preconceived notions” at the door. Assumptions are a discriminatory lot. I do have to admit to also enjoying lessons learned from erroneous stereotypes. After all, that means I’m still learning. You can teach an old dog new tricks! After all, I’ve learned that fish aren’t stupid…

Denise Portis

© 2012 Personal Hearing Loss Journal

It Ain’t All Good

George Dawson, “People forget that a picture ain’t made from just one color. Life ain’t all good or all bad. It’s full of everything.”

I didn’t write last Monday. I almost let yesterday (Monday) go without writing as well. My reasoning was “why write when I feel so awful”? Sometimes I feel like I owe my readers and peers the truth… but only if it is pleasant and encouraging. When things are not going so good? Well… I’m less certain about how healthy it is for ME to write about it, and risk losing YOU as “compatriots in the ranks”. Right now, “life ain’t all good”. But because it is also “not all bad” I decided to write anyway.

Some things are changing for me. Not good changes. There are things going on that involve other people, so I cannot discuss it. But there are things going on with “just me” that I DO have the liberty to discuss. So I will. If you tuned in to get a dose of the warm fuzzies – this isn’t the post you want to read.

Tell Tale Signs

I have an incredibly bad habit of ignoring the obvious. Perhaps it is a defense mechanism or a form of denial. When something is scary or unpleasant I will push it down and pretend “it” doesn’t exist. I tell myself what my mother always tells me, “Don’t make a mountain out of a mole hill”. Problem is… sometimes it IS a mountain and not a mole hill.

Life can be hard. I have friends who have lost loved ones recently. I have friends who have been diagnosed with scary-sounding diagnosis, some having a good prognosis and some a dire one. I have friends who have close family members battling major health problems. I have friends who are having financial crisis that will change the course of their life and the life of their families. I have friends with children in trouble. I have friends who have been told to plan their funeral. I have friends who have been betrayed and used.

Makes it sound like I have a lot of friends, doesn’t it? (GRIN) One tremendous PLUS of my now, 9-year-old blog, is that I have met a great number of people “virtually”, and literally as a result of my going public with what it is like to live with hearing loss, invisible disabilities, and an incredible canine partner. I have been blessed with guest writers and friendships that have developed as a result of “Hearing Elmo”. You, the reader, have been a source of encouragement to me, a source of advice, and even a source of constructive criticism when I desperately needed it. I am thankful for the sense of “community” the Internet and blogs have given those with disability and invisible illnesses.

Sometimes I ignore tell tale signs in order to “deal with it”. Yes, I know that isn’t healthy but I’m just tellin’ it like it is. Folks who do not have disabilities still live in a body that ages, changes, and may face both minor and catastrophic health problems. However, people with disabilities, those who have learned to be “differently abled”, also sometimes face these same health problems. I’ve often wondered that if certain disabilities make one more prone to health related problems. For example, if you have arthritis, fibromyalgia, or chronic fatigue syndrome, perhaps you’ve put on some weight because you cannot easily exercise or lack the strength and energy to do so. As a result, diabetes or heart disease are now knocking at your door. If you have paralysis or problems with mobility, perhaps you have also developed circulatory problems. I am late-deafened and have Meniere’s disease. I actually hear voices really well in “prime” listening environments, and even do fairly well in really noisy environments with poor acoustics. I fall a lot though. When I do, I normally hit my head. Usually it is just an “ouch” moment where I rub the sore spot and go on about my business.

However, in the last year I have woken up a couple of times now – sprawled out in a heap with my dogs curled up asleep next to me. One time, a matter of hours had to have passed because it was much darker outside by the time I came to. I discuss these things with my husband and um – sort of with my doctor. I have a feeling that I’ve bumped my noggin’ often enough in my adult life, that there may be consequences to that. Thankfully, I’ve learned what a lot of my triggers are and can identify 95% of the time when I need to sit down,

NOW

no matter where I’m at

or who may be watching

or what I may be sitting in.

My eye prescription has changed 3 times in the last 11 months. Most mornings I wake up and my extremities are numb. On really bad days, I still cannot hardly feel my fingers well enough to type by my afternoon classes. I’m having all kinds of “female issues”. My balance is worse than it ever has been. Much worse. I have tried to tell myself that I am stumbling more because I’m older. I turn 46-years-old this month. I’m very good at justifying things! Don’t we tend to do that when something is “off”? My doctor is working with me. When classes are over in May I will be busy getting a lot of tests. Fun, fun (rolls eyes).

But Gee… It’s Not Fair

I don’t care who you are. The old adage, “when it rains, it pours” is only positive to a farmer. No one likes change. Nobody likes problems. No one embraces tragedy. We may have a “Bad News Not Welcome” here sign on our house door. Heck… it may be tattooed on your forearm. That doesn’t mean that bad things are not going to happen.

Life is just not fair, is it? I mean… we don’t get what we deserve when we’ve done something right. And dang, if we don’t get what we deserve when we do something WRONG.

Oscar Wilde: “Life is never fair, and perhaps it is a good thing for most of us that it is not.”

Bill Gates: “Life is not fair. Get use to it”.

(Unknown): “Expecting the world to be fair to you because you are a good person is like expecting the bull not to charge because you are a vegetarian.”

Matthew 5:45b: “For he makes his sun rise on the evil and on the good, and sends rain on the just and on the unjust.”

Most of you have already learned that life isn’t fair. We deal with it. We have to do so. There are no real alternatives.

We adjust.

We learn.

We fight.

We will lose and we will win. Regardless we DO deal with it. That can mean we do so successfully and with pizzazz. It may mean we do so poorly and like a drowning victim, struggle and pull others down with us. We always have choices. Maybe not about what we get to handle, but HOW we will handle it.

Recently while shopping at the mall with my husband, he said, “Do you realize that in 2007 you trained for a hearing dog because you needed one. Now Chloe performs more balance-related tasks for you than she does hearing alerts. What does that mean?”

Well it means that I’m changing. Thankfully, dogs are smart and so are the trainers at Fidos For Freedom. You really can teach an old dog “new tricks” – or skilled tasks.

More Than You Can Handle

Don’t you hate it when you are going through something hard and someone tells you, “God won’t give you more than you can handle”? Seriously? I mean… for most of us determination, will-power, and a fighting attitude gets us through. For those like myself who consider themselves a person of faith, we rest in the knowledge that He’s got this… and He’s with us. That doesn’t mean He’s gonna bail us out and smooth the way.

My cousin, a breast cancer survivor, blogs a great deal. I always look forward to reading her posts when “Google Reader” lets me know something new has been uploaded. Recently, she wrote “A Hard Place”. She quoted from a book called, “Kisses From Katie” by Katie Davis. I wanted to share that excerpt with you:

“Remember, God will never give you more than you can handle.” People repeat this frequently; I heard it when I was growing up and I hear it now. It is meant to be a source of encouragement, and it would be if I believed it were true. But I don’t. I believe that God totally, absolutely, intentionally gives us more than we can handle. Because this is when we surrender to Him and He takes over, proving Himself by doing the impossible in our lives. I have learned to accept it, even ask for it, this “more than I can handle.” Because in these times, God shows Himself victorious. He reminds me that all of this life requires more of Him and less of me. God does give us more than we can handle. Not maliciously, but intentionally, in love, that His glory may be displayed, that we may have no doubt of who is in control, that people may see His grace and faithfulness shining through our lives. And as I surrender these situations to Him, watch Him take over and do the impossible, I am filled with joy and peace–so much more than I can handle.”

I’m not a brave person. I’m not going to ask God to give me more than I can handle.

I’m a chicken.

a wuss.

a weakling.

You don’t have to ask God for ANYTHING though, and you still are going to get a dose of LIFE. And so I’m back around where I started. Life ain’t all good.

But it is not all bad.

And so we carry on…

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

Commencement

This past Sunday, my pastor spoke on discipleship. In discussion of what discipleship actually is (growth), he discussed how some people may get confused that at the end of twelve years of high school they graduate and participate in commencement. Commencement is not the end of something; rather, commencement is the beginning of the rest of your life. However, for some that may be the defining moment of their life – the culmination of all they will accomplish.

According to dictionary.com, commencement is a beginning, or a start. Merriam-Webster defines it as a point in time in which one “enters upon the next”. In just a few months, commencement will take place at a number of schools. At the community college where I work, reminders are going out to students reminding them to petition to graduate by a certain date. At Fidos For Freedom, a service dog and therapy dog organization, commencement takes place at the banquet that takes place each May. Clients who are “graduating” this year are already gearing up for speeches, festivities, and recognition of a completion of training.

Yet these exercises are not an ending to anything. Rather, they are a beginning. For college students they may be transferring to a four year college to obtain a higher degree. It may mean looking for that ideal career. For clients at Fidos For Freedom, it is the start of a new life of independence – with trainers and “family” in the wings should any further assistance be needed.

Safe People

The topic of my favorite book, “Safe People”, has been a recurring theme in many of my discussions with family and friends lately. I actually dug my copy out to read it again, because I found myself recommending it to several different people. Learning to identify and avoid unsafe people and relationships can be a hard-learned lesson. I think the truths that have permanently etched themselves on my heart and mind from this book, are how to be a safe person MYSELF. For me, it was reaching a point in time when I could turn my back on the past and boldly face my future. Sure! I took lessons learned from the past – in my relationships, problems, and successes – but armed myself with those lessons to be better equipped for my future.

It has been a commencement for me. Like Merriam-Webster explains… it is a period of time where I chose to “enter upon the next” chapter of my life.

Progressive Illness/Disability

I think one of the frustrating things about having progressive hearing loss, or chronic illness/disability, is that one may commence living life with a new charge for life , equipped to be as independent as possible, only for changes in our health to take us back to square one. Prior to my cochlear implant, I remember learning to cope with the telephone, conversations in crowded places, and learning to speak with people with poor communication habits. However, in a matter of months my hearing would take a dive and I would discover that what worked last month, didn’t work at all now! Like most families with small children at home, we lived paycheck to paycheck. We pinched pennies and scrimped and saved to purchase an amplified telephone for me. For five or six months I was in telephone heaven! I used the phone every single day with confidence and enthusiasm. It didn’t take long, however, before I was struggling to even use that new gadget. I earned a little extra time by using it when the kids were outside and the house was relatively quiet. What was once easy became increasingly difficult. Eventually, the frustration of what I wasn’t hearing, despite hearing aids set to t-coil and begging people on the other end to speak clearly into the phone, had the phone collecting dust from lack of use. I’d talk to other HoHearies and get some new ideas. At some point though? The phone became a thing of my past. I had to come up with ways to contact people other than the phone. For the late-deafened community, the emergence of email, texting, and even FaceBook became very real “life-savers” in terms of being able to freely communicate with others. Although I hear well enough on the phone now that I have a cochlear implant, these other forms of communication are still my own first choice.

Resilience is a Special Kind of Strength

Many readers of Hearing Elmo have various disabilities, invisible illnesses or chronic health problems. For some, those difficulties are progressive and force them into a constant state of evolution. This can actually be healthy. (I see some of you grimacing out there!) Yet progressive illness can produce resilience – the likes of which create a strong and capable individual who can face life’s problems with the confidence earned through experience. Resilience is a special kind of strength. These individuals know that living successfully with progressive health problems is simply adopting an attitude of commencement.

Some people never graduate. They never enter that next stage of life. Even though the past may be painful, they cling to it with a tenacity that may stun family and friends. If they have progressive health problems, they may be stuck in the grief process. The grief process is a PROCESS. In a healthy situation, one moves from one stage to the next, eventually reaching acceptance and a new normal. Even psychologically we can get stuck in the past. Everyone else has moved on, but we have super-glued ourselves to unresolved situations instead of letting go and moving on with our lives (like everyone else has). Living this way yields toxicity to both ourselves and to others. We become “unsafe people”. It can have a negative influence on our relationships, self-esteem, and emotional/mental health. Dr. Seavey addresses how to face the future in a terrific article that can be accessed HERE.

Can you look back and see different points in your own life where commencement took place? Using all you learned in a specific period of your life, you chose to begin the next chapter of your life. May we all view commencement as springboard to usher in a successful, victorious future and not as a monument that designates an END!

Denise Portis

© 2012 Personal Hearing Loss Journal

Walk a Mile in My Shoes

Gonna change directions here today as the death of Whitney Houston coincides with something I am seeing more and more in the disability community.

It doesn’t matter whether or not you like Whitney Houston. What I am disappointed to see is some of the comments and “hatin’ on” this artist since her death. I actually saw on one person’s Facebook that drug addicts and alcoholics get what they deserve. “Someone with so much talent shouldn’t have wasted it”

Wow. I mean REALLY?

Unless you were thrust into fame and fortune at a relatively young age…

Unless you had to deal with the media on a daily basis, giving up any hope of privacy…

Unless you married for love and were crushed by disappointment…

Unless you raised a child as best you could in the backdrop of an industry that can be unforgiving…

Unless you developed an addiction because of life’s crushing problems and entered rehab while the whole world knew it…

Unless you made mistakes and fell back into bad habits – all while the whole world watched…

… then keep your mouth shut about Whitney Houston.

Why Does This Upset Me? Why Should it Upset YOU?

Anytime people begin to criticize and judge someone else a change takes place. Amnesia.

I rarely hear someone criticize and judge someone who is just like THEM. It usually happens when someone is different than you are. Criticizing is easy when we don’t walk in that person’s shoes. Judging is a simple task when we cannot hope to understand what really caused someone to do something when they are different than we are. We forget all the times we have been hurt for being judged and criticized by people who do not understand our own choices in life.

Wanna get me ticked off? Criticize and judge someone who chose to mitigate their disability with a service dog when you don’t live with a disability. Sometimes even others within the disability community may scratch their head and wonder why a person would choose a service dog when “they have the same disability you do”. What they may not know is that there ARE various differences between your disabilities. Your lives may be different. They may have 24/7 help that you do not have access to in your own life. Why don’t we celebrate “whatever works”?

In the hearing loss community, I know people who criticize people who don’t allow “nature to take its course” and embrace their deafness. To some, if you do not learn ASL then you are shunning a community that could be your family. For others who have accepted technology and/or surgery to stay connected to the hearing world, they may criticize those who have learned ASL for various reasons – personal reasons! I know people who criticize other people’s choices about hearing aids or cochlear implants. Why are we prone to criticize anyone who makes a different choice than what we have made for ourselves?

I think perhaps it is a form of self-protection. We may somehow feel that if someone who is very similar to us chose another path, that their choice may mean that our own path was a wrong one. It may be a form of defensiveness. If we see someone successful at living life with a disability, we may feel the need to criticize because we still have some problems with our own disability. If we see someone floundering at living life with a disability – and they chose another path? Many point and say, “I told you so”.

We could all learn to be more compassionate. We could all learn to listen more and keep our mouths shut.

When you judge another, you do not define them, you define yourself.” –
Wayne Dyer

If you judge people, you have no time to love them.” –
Mother Teresa

What May Happen if You Reserve Judgment

If you can keep your opinions to yourself, you may just make some discoveries:

You didn’t understand why they did what they did until you got to know them better.

You misunderstood their choice

After learning more about the person, you actually agree with their choice.

After time you find that you still would have done it differently yourself, but it seems to work for them.

If you can keep your negative opinions to yourself and instead pray for and encourage that person, you may discover a…

FRIEND who has the same taste in shoes!

Denise Portis

© 2012 Personal Hearing Loss Journal

My Goals? Stop Apologizing…

At City Dock in downtown Annapolis near the U.S. Naval Academy

I find it a little hard to believe it is 2012. Normally, the New Year doesn’t sneak up on me. However, this year it certainly did just that. In the past, I’m almost obsessive-compulsive about planning and organizing my resolutions for the New Year. I suppose that I haven’t allowed myself to obsess about it this year, points to the fact that I continue to change and evolve as I age. I think change is important and hope that I will always grow, mature, and change from one year to the next.

Sometimes though? Sometimes I see things in myself that I need to change because they are negative. In my reflection of 2011, I discovered a real negative that I really want to work on in 2012. Introspection did not really help me discover WHY I have developed this bad habit, but I can make some educated guesses.

I apologize. I apologize a great deal. I apologize for things that are not my fault. Some reasons I may do this?

1. I feel as if it will keep others from feeling the blame or reacting in a defensive way.

2. I default to shouldering the blame for most things.

3. I hope to diffuse any uncomfortable thoughts or reactions by others.

4. I hope to garner apologies and acceptance of responsibility by others by my own example.

5. HABIT

Please don’t misunderstand me. I believe that people should accept responsibility and offer apologies when they are warranted. However, I have developed a habit of apologizing for things that are not my responsibility. Sometimes when I say “I’m sorry”, it is simply a matter of miscommunication. I need to say something… but do so in a way it more accurately communicates my real meaning.

An example: “I’m sorry you misunderstood me”.

A better response would be, “I believe I have been misunderstood. May I clarify my meaning and intent?”

As a person with hearing loss I even respond with a “sorry” when I missed something. Example: “I’m sorry. I didn’t catch that”. It may very well be that it is no one’s FAULT that I missed it. After all… I am a late-deafened adult. Yes, sometimes folks may cover their mouth with their hand, or mumble. When that happens it is better to say, “I didn’t catch that. Could you repeat it please?” – or – “You were covering your mouth and I didn’t catch that. Will you repeat it please?” I’m going to try to stop myself before I respond with a habitual “I’m sorry. I didn’t catch that”.

It’s My Choice to Mitigate My Disabilities with a Service Dog

Recently, I “replied all” to an email in which a group of employees were nailing down details about when to meet for a book group. We are reading “Storm” by George R. Stewart. I actually typed out, “I apologize in advance that I will have my service dog with me as she is with me 24/7”. I sat and looked at that sentence for a minute and thought to myself, “WHAT IN THE WORLD?”

I deleted that sentence and re-typed, “Just a heads up so that no one is startled, I will have my service dog with me as she is with me 24/7”. I re-read and re-thought that sentence for several minutes. I like to give people I’ve never met before heads-up about Chloe, but it isn’t required. However, some people ARE afraid of dogs or have allergies. I like to let people know in advance when I can.

When I interviewed at the local community college, before hanging up the phone I let the person know that I would have my service dog with me at the interview. When I arrived to meet with the panel of people interviewing that day, the director let me know that he was glad I told him about Chloe. He normally has his dog with him at work during the summer, and he didn’t want his dog to interfere with my working dog.

Sometimes it cannot be helped. I arrive and people are surprised (or dismayed) that I have a service dog with me. In the past, I have intercepted looks and stepped forward to apologize that I have Chloe with me. I’m not sure why I felt compelled to do this. I’m NOT sorry I have Chloe. She has given me the independence and confidence I needed to follow my dreams! Yet, I often felt as if I needed to apologize for her presence.

When someone asks if they can pet Chloe, I would automatically say, “I’m sorry. She’s a working dog and cannot be pet while she is in vest”. A better response that I’m trying to remember to say is, “She’s a working dog and cannot be distracted right now. Thank you for asking permission though!”

I realize that many people use the “I’m sorry” phrase without thinking about the ramifications of the meaning. To many it is simply a way to break the ice, or begin communicating a difficult idea. For me, I believe that the overuse of the phrase has only served to weaken my own self-esteem and even development as a confident adult with a disability. Please understand that I am talking about ME – and how being overly zealous with apologizing has inadvertently affected ME in a negative way. You will never hear me correct YOU if you choose to use this phrase.

I believe in giving heartfelt apologies when they are needed. In the right circumstances, it conveys the desire to make right a wrong and to restore a good relationship with another person. One of my favorite books is “The Five Languages of Apology” by Chapman and Thomas. I believe in caring about our fellow man and to learn to apologize in such a way it restores good communication and healthy relationships.

It’s no one’s fault I do not hear well. There is no one to blame that I stumble around on rainy days nor am able to retrieve things from the floor. You may be surprised to learn that I wouldn’t change anything about me. Sure… it’s taken a long time for me to accept who I am and to “like me” just the way I am! I do want to correctly communicate my heart, mind, and intent to others. I believe I apologize in far too many circumstances. I want to accurately relay information without demeaning or demoralizing myself.

You may be thinking “poTAtoes” – “po-TAH-toes”. What is the difference? For me… this is something I choose to work on this year. I want to better communicate with others without taking the blame for things that cannot be helped.

In October I was at a training class at Fidos For Freedom in Laurel, Maryland. One of my least favorite exercises is the “Meet and Greet”. I hate it, yet know it is one of those necessary (evil) tasks that I must learn to accomplish with an assistance dog along side of me. Reality check? I will have to communicate with others in a group when there is background noise. It is very difficult for those of us with hearing loss to do this exercise. I have to remember to turn my t-coil off on both cochlear implant and hearing aid. Thankfully, our training room is looped and I hear the trainer very well when commands are given. However, I have to turn these OFF in order to hear a group of people in the “Meet and Greet”. We introduce ourselves and give a little information about our dogs to new people. To folks we know well we simply “catch up”. Our dogs are suppose to remain in a safe place (sit or stay) and we learn to communicate while also keeping an eye on our partners. When you also speech read, it can be very difficult to watch faces while also keeping an eye on your dog. At this particular training, Chloe was in a down/stay for the inevitable “Meet and Greet”. Some of these dogs Chloe has known for a long time. Some of them are newer puppies recently introduced to the training floor to eventually be matched with a client. I spotted Chloe stretching in her down/stay with tail all a-wag and kisses galore for another dog in a down/stay. I corrected her and then realized I missed what the fellow client said.

“I’m sorry. I missed that”, I said with exasperation.

The other client didn’t hesitate and said, “Don’t be sorry. I don’t apologize for weaving around with both a cane and a dog!”

It hit me that I was implying my inability to hear well in this environment could be changed. It is what it is. I do NOT hear well in “Meet and Greets”. It is not anyone’s fault that I do not. No apologies are necessary. I’m learning to ask for repeats without apologizing.

I wish you success in planning your own New Year’s resolutions and goals. I’m keeping it simple this year. Happy New Year and welcome 2012!

Denise Portis

© 2012 Personal Hearing Loss Journal