hearing loss – Page 7

They May Not Get It

Published on August 27, 2012August 27, 2012 by hearingelmo7 Comments

(Hey… I’m not an artist! But have you ever felt this way?)

One of the questions I am asked the most by folks who contact Hearing Elmo, is “Why doesn’t my family accept and understand who I am NOW?”

Before I even begin writing, let me express my hope that many of you will respond and share as I am very aware I do not have all the answers.

Why It Hurts

1. It hurts because the transition from “normal” to where you are was painful.

The school of hard knocks is – well – hard. Acquired disabilities and invisible/chronic illness are not easy to get use to when they first change a person. The journey from diagnosis to acceptance is a hard one. It hopefully has made us “better” and not “bitter”. I can attest to feeling stronger, more confident, and much more in tune with who I really am post-disability. Some of us have progressive symptoms and illnesses. We may adjust, only to have to do so again in a year or so. This too can grow us. But honey? It isn’t easy.

However, BECAUSE it was hard, it is hurtful when folks who knew us WHEN (back before our diagnosis), don’t accept or try to understand who we are NOW. We are still the same people. Our personalities have not changed. Our strengths and weaknesses are all still present – although you may have developed some new strengths because of your life path. So it is difficult when family members may sometimes be the hardest to teach how to talk to us now that we have a hearing loss. Or perhaps you are frustrated because a family reunion at a theme park is not ideal for you because you cannot ride any of the rides. Maybe you are utilizing a wheelchair, walker, or cane. A picnic and hike may not be a good way for you and your siblings to catch up – even if it has been a year since you’ve seen each other.

It’s not like we want recognition for the pain we’ve experienced. We aren’t looking for a medal. However, seeing any eye rolls or hearing frustrated sighs serve only to remind us our family

STILL

DOESN’T

GET

IT.

2. You expect your family members to care enough to accept you.

It’s not wedding vows. “In sickness and in health, for richer or for poorer…” But we have a reasonable expectation that our family members are going to love us and be there for us regardless. It doesn’t matter if we acquire a disability. We are still the same person. If Lymes disease has you aching and feverish a week out of every month, we expect compassion, not disdain. If CFS or MS has you weary, tired, and feeling as energetic as a centenarian, you expect understanding and maybe an offer to run an errand for you. If your eyesight is worsening due to various illness or disorders, you never expect frustrated outbursts when you explain you don’t have a ride to go to your nephew’s graduation.

But friends? Family members can need educating. Advocacy may begin at home. We wish it wasn’t necessary, but it may be very necessary. My kids grew up with me at best, hard-of-hearing. My husband, however, knew me before hearing loss. So I have to be willing to tell (nicely) him what works and what doesn’t. Don’t be surprised if it takes numerous lessons. Some heads are thicker than others.

What to Do

Talk to them. I’d elaborate, but honestly? You need to talk to them. Explain how you feel. Be willing to be vulnerable. Start with phrases that explain specifics and not general accusations. Example:

“When you sigh as I wobble into a shelf at the store it really hurts my feelings. I can’t help it when my world ‘twirls’. It’s hard enough to face the stares and hear the whispered remarks from strangers. I expect better from you. I expect your support.”

They May Never Get it

We can choose our friends, but we don’t choose our family. Blood is blood and it simply cannot be changed. However, you do not have to put up with people who ridicule you or try to injure you with words. You do not have to deliberately spend time with people who only make you feel worse. Sometimes? Sometimes those toxic people are family members. I hate it for you. I hate it for me. But it can be the painful truth.

Sometimes those friends that we choose? They become family. Maybe not by blood. Perhaps not by legal adoption. But folks who encourage us, lift us up, make us better people, understand, lend compassion and energy? They can become like family members. My heart’s desire is that you will find some folks like this if you haven’t already.

I welcome your thoughts on this. Knowing family members may grieve the person they once knew, or have trouble adjusting to the fact you are “differently abled” is important. Be patient. But also put healthy boundaries in place to keep unhealthy people from de-railing your progress with your own adjustments.

Denise Portis

It’s Not Easy Being Green

Published on August 20, 2012 by hearingelmo5 Comments

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

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.

Unexpected Perk, or Bother?

Published on August 7, 2012September 20, 2012 by hearingelmo4 Comments

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

Round and Round She Goes, Where She Stops…

Published on July 30, 2012September 20, 2012 by hearingelmo6 Comments

… 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

How Important is it to Prepare?

Published on July 10, 2012July 10, 2012 by hearingelmoLeave a comment

With family in Colorado dealing with the fires, and our own area’s recent experience with widespread power outages after a “land hurricane”, disaster preparedness has been on my mind lately.

Isn’t it crazy that we don’t think to plan for something until it actually happens? Then we get some things together for the next time, only for a decade to go by before it repeats itself. By that time batteries are dead, water is stale and evaporated, and extra dog food has turned to powder.

Preparing can be expensive too; something most of us have difficulty budgeting for should a disaster occur. Yet, little by little we CAN get together some essentials. Purchased over time, these items may be less of a punch to our weekly budget for food and other essentials. If you dislike gathering things together for a price, disaster preparedness kits can be purchased at stores or online.

What to Put in a “Kit”

You can find numerous resources online with information about what to put in a disaster preparedness kit. You may have to prepare with numerous people in mind, or even numerous pets. According to the experts it is best to have a kit on hand that can be picked up and taken with you in the event of an emergency – fire, hurricane, or flooding… things that can be predicted to some degree as the result of early warning systems in the area.

With power outages, however, you may need a bigger “kit” for numerous days. Power outages can be planned as the result of city construction or tree removal. Most of the time though? Power outages are an unpleasant surprise. Causes can range from results of mother nature at work, or a hubby at work with a shovel and a poor attention span.

72Hours.org has some terrific ideas in what to put in a disaster kit. You can access the site HERE. FEMA and Ready.Gov has some additional plans and ideas at their site. These include how to let friends and loved ones know where you are and how you are doing. You can access these plans HERE. The ASPCA has some wonderful ideas and plans for those of us who may have service animals and other family pets. You can access that information HERE. The Red Cross has some additional ideas for pet owners HERE.

The key is to BE PREPARED. When my family and I experienced 36 hours of no power in 95 degree heat, it isn’t something we decided to do for FUN. It was an unexpected and unpleasant surprise. We had plenty of water and gas in our cars, but could not even leave the house at night in sweltering heat because of numerous pets that needed attention, supervision, and assurance. We holed up in the basement and did our best to keep everyone calm and as cool as possible. Because I shop at Costco, when I buy batteries, I buy A LOT. But I wasn’t keeping close tabs on what sizes we had, and our flashlights and lanterns were scattered all over the place. (The power outage began late at night after the sun had gone down). I discovered after doing a little investigating after the power returned, that generators are expensive. They can also be dangerous to operate if you do not know what you are doing. Yet after our experience, I started a “generator piggy bank”. It may take us YEARS to have enough to actually buy one, but imagine being able to run some fans and keep the refrigerator running during a long-term power outage?

I welcome additional ideas our websites that may help folks prepare.

Disabilities or Health Issues?

As a person with disabilities I was prepared BY ACCIDENT. I purchase cochlear implant batteries in bulk once or twice a year. Thankfully, my cochlear implant is NOT the type that uses rechargeable batteries or I may have been deaf as well as sweaty! I noticed that because of the excessive heat, my balance was worse than usual. I was unprepared for a SUNNY day to be staggering around as if it were a rainy, overcast day. My husband who only has one kidney, was especially fatigued and weak because of the heat. I had friends that were unable to power their scooters that they use for mobility purposes, but their manual wheelchairs were in storage! These kinds of things can make a difficult situation much worse.

If you have special needs of ANY kind, be sure to take these into consideration when you do your planning. Because we are all aware of how important that planning is, right? (GRIN)

Denise Portis

Dissension in the Ranks?

Published on June 18, 2012June 18, 2012 by hearingelmo2 Comments

One of the big arenas in which I connect with others struggling with some of the same issues as I do, is Facebook. It never ceases to amaze me some of the criticisms I read among not only the hearing loss community, but the disability community as a whole.

Take the word “disability” itself. Some people have a good ol’ fashioned hissy fit if someone uses the “D” word.

Others may get uptight if someone brags on the brand of hearing aid or cochlear implant they use. Some folks may get up in arms about who did the right thing by whether or not they owner trained an assistance dog, or trained for a “program” service dog. I actually saw a conversation about whether or not people who lose their hearing should – or should not – use ASL (American Sign Language).

At times I just want to throw up my hands and whine loudly, “Can’t we all just get along?”

Nothing Wrong with Being Proud

Pride is often vilified. The phrase “Pride goeth before a fall” is used frequently to remind us that a prideful (almost disdainful) attitude not only turns others off, but ultimately may cause a person to fail or not achieve their goals. Pride is often categorized as a negative trait. However, pride may also be a GOOD thing. We can be proud of our kids, our skills/talents, or of our affiliation with a group or organization. It may instill a sense of identity. Zia and Katzenbach (2010), suggest that a healthy sense of pride can potentially motivate an individual to doing good work for others; to serve, inspire, and ignite a passion to do your very best.

Sometimes I “rag on” my husband about being prideful. It is usually with an eye roll while inferring “we all know how you can be”. Men are often accused of being susceptible to a negative kind of pride and ego. But ya know something? One of the things I love most about my husband is his healthy sense of pride. He knows what he is good at and in that knowledge comes a sense of urgency to share those things. He recognizes his gifts, talents, and skills, and uses them to assist others. I’m reminded when I choose to give him a hard time about being cocky occasionally, that many of the things I love about him actually stem from his sense of pride.

Part of embracing who you are “now” may mean you begin to associate with a group or community of people. Chandler (2009) believes that people with chronic illness or visible and invisible disabilities should use disability pride to their advantage. This doesn’t mean we become our disability, but rather we embrace who we are despite our disability. “Fundamentally, Disability Pride represents a rejection of the notion that our difference from the non-disabled community is wrong or bad in any way and is a statement of our self-acceptance, dignity and pride. It signifies that we are coming out of the closet and are claiming our legitimate identity. It’s a public expression of our belief that our disability and identity are normal, healthy and right for us and is a validation of our experience” (Triano, 2009).

So Why Do We Criticize Others?

If you follow Hearing Elmo, you know that I get really excited about guest authors. (If you are interested in writing for Hearing Elmo, shoot me an email at denise.portis@gmail.com). I know there are experiences within the community that I do not understand because I do not live it. It is good to get other’s perspectives and thoughts about issues that relate to our community.

Being diagnosed with hearing loss can frustrate patient, family, audiologist, and doctors. It is not “one size fits all”. Causes, degrees, implications, and symptoms may be extremely varied. Having balance problems does not mean that we have similar experiences, or erm… all FALL THE SAME WAY. My life with hearing loss and the balance problems I have, may be completely different from someone who shares the same diagnosis. We are still individuals.

So why do people within our community argue, posture, and belittle someone else who chooses a different path? Through the Hearing Loss Association of America, I have heard the motto “whatever works”. This means that whatever a person chooses to mitigate their own challenges is supported by the community as a whole. Have a hearing loss but do not want to learn ASL? No problem. But don’t blast those who chose to embrace the Deaf community and use ASL as their primary means to communicate. Don’t criticize those who choose to use the language (or variations of) when batteries die, or environments are not conducive to communication. Love your hearing aid? I’m happy for you! But if someone else chooses not to use them or horror of horrors… chooses another brand, don’t verbally bash them!

The picture at the top of this post is a photo of some of my dear friends who I met as a result of my own hearing loss. Our hearing loss is as different as our appearances – and ACCENTS (grin). We struggle with different things and may have chosen various coping skills by which to live a victorious life despite our challenges. Yet, we celebrate our SAMENESS. (Hey! That is a word – – look it up!). Is it not hard enough to keep a positive attitude and strive to make a difference without cutting down those who have challenges of their own?

Does this mean we aren’t entitled to our own opinion? Of course not. However, there is a big difference between having an opinion and expressing your opinion. To do so and deliberately criticize or demean another is never the right thing to do. As a matter of fact, to insist “it is my way or the highway” makes you disabled instead of a person who happens to have a disability. ‘Course… that is just my opinion as well!

Denise Portis

Chandler, E. (2009). Pride and shame: Orienting towards a temporality of disability pride. Radical Psychology: A Journal Of Psychology, Politics & Radicalism, 8(1), 2.

Triano, S. (2009). What is disability pride? Retrieved June 30, 2009, from https://www.disabledandproud.com/power.htm

Zia, K., & Katzenbach, J. (2010). Getting back on the fast track with pride. Leader To Leader, 2010(58), 33-38.

Attracting More Flies

Published on June 5, 2012June 6, 2012 by hearingelmo1 Comment

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

A Special Kind of “Stupid”

Published on May 27, 2012September 21, 2012 by hearingelmo7 Comments

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

It is Easier to Act Your Way into Feeling…

Published on May 8, 2012 by hearingelmo4 Comments

Our pastor at Weem’s Creek has been going through the story of Elijah. Interesting guy, this old testament prophet, Elijah. Through him, God shut off the rain for a long period of time. He put the false prophets of Baal to shame by having his own sacrifice (soaked in water) eaten up by fire called down from Heaven. But… Elijah could be a whiner.

Not only could the man whine, but he could exaggerate as well. After a particularly spectacular display of God’s might – working through Elijah – he claimed to be all alone and the last of his kind (a prophet). Neither were true. Elijah became depressed. God decided to force him into action, and it eventually changed his outlook.

Pastor Orr used a quote, “It is easier to act your way into a feeling, than to feel your way into an action”. I looked all over the Internet for who actually said that. Although I found plenty of examples of people USING the quote, I was unable to actually find who said it “first”.

This quote really hit home for me. I was contacted this last week by a man who follows my blog. I asked his permission to share part of that email.

“I can know that I need to change my attitude about my disability, but knowing and doing are two different things. How do you get to where you know your life is not over after acquiring a disability when you are stuck on thinking your life is over?”

I’ve been very open about my own struggles with depression. Would I have struggled with depression had I not begun to lose my hearing at the age of 25-years-old? Very possibly. But I do know know that there is a correlation between depression and disability. Research has shown that the degree of depression in people with disabilities is directly connected to their own personal acceptance of their disability (Townend, Tinson, Kwan, Sharpe, 2010). You need to accept your “new normal”. I DO realize it is easy to say, but there really IS life after disability.

I realize we all struggle with different things. Some chronic illnesses and disabilities impact important life functions such as mobility, independence, and quality of life. Being late-deafened is minor to having Meniere’s disease in my own life. As a matter of fact, my husband noted recently that Chloe does just as many balance-related tasks as she does hearing alerts (if not more) – and she is a certified hearing assistance dog. When we have a major weather system stall out over the top of us (my main vertigo trigger) I can really struggle to even get up the nerve to leave the bed in the morning. And let me tell you… it can require nerves. A recent fall left me black and blue from shoulder to hip, with an anxious husband trying to decide whether or not to call 9-1-1 as I kept losing consciousness. (Life with Denise can be exciting – grin). However, when the sun shines, my balance related symptoms are minor. I’m very aware there are courageous (and inspiring) people who do not get “sunny days”. They do not have a break in the degree of disability that directly influences the quality of their lives. Acceptance for them is different and I acknowledge may be more difficult. Regardless, one does have to accept where they are in terms of a “new normal”.

Did you know that acceptance of your “new normal” can not only influence depression, but being depressed can actually worsen your disability? I have personal experience with worsening hearing, balance and vertigo when I happen to also be in a downward spiral in depression. Karp, Skidmore, Lotz, Lenze, Dew, and Reynolds (2009), found that symptoms of specific disabilities actually worsen when the individual is also depressed, stressing that depression needs to be taken seriously and treated. I have a number of red flags that I have set up to determine if I am becoming depressed. I know and have experienced the dangers of depression. Having a “blue” day or two is different than depression. Having lived with it, I know what it “looks” like and stay on the look out for specific clues that tell me I need to seek help.

Living with “It”

One really CAN live within a “new normal”. This may mean a acceptance of a change in your health. Perhaps you are single when you thought it would be “til death do us part”. Death may have indeed parted you from someone you counted on emotionally and physically. So how do you accept where you ARE, and move on to living a victorious life? I truly believe we have to simply take action. Our “feelers” cannot really be trusted. Don’t get me wrong. I believe compassion, mercy, and love are important. But our hearts – our “feeler” – cannot provide a new, healthier way of acceptance.

What kind of actions can we take? Many of us become involved in organizations that provide support for a specific disability we may have. Within these types of organizations, there are numerous ways to get involved. The Internet makes this connection simple. There are a number of community service projects that can use the help of volunteers. Even small communities have opportunities for service. Some people with disabilities prefer to be involved in areas of service that are not directly related to their disability. If you want to take action and get involved in helping others – LOOK. The opportunities are there. Giving back to others is a primary way in which people feel valued and useful. Getting active in giving back to our communities may actually change the way you FEEL about your own disability. We need a purpose.

“I think the purpose of life is to be useful, to be responsible, to be honorable, to be compassionate. It is, after all, to matter: to count, to stand for something, to have made some difference that you lived at all.” —Leo C. Rosten

Denise Portis

Karp, J., Skidmore, E., Lotz, M., Lenze, E., Dew, M., & Reynolds, C. (2009). Use of the Late-Life Function and Disability Instrument to assess disability in major depression. Journal Of The American Geriatrics Society, 57(9), 1612-1619. doi:10.1111/j.1532-5415.2009.02398.x

Townend, E., Tinson, D., Kwan, J., & Sharpe, M. (2010). ‘Feeling sad and useless’: an investigation into personal acceptance of disability and its association with depression following stroke. Clinical Rehabilitation, 24(6), 555-564.

It Ain’t All Good

Published on April 17, 2012May 9, 2012 by hearingelmo2 Comments

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