Meniere’s disease – Page 5

TONS of Demerits = Life Turning Point

Published on July 7, 2014July 7, 2014 by hearingelmo3 Comments

I went to a Christian University right out of high school. I lived in a small rural farming community with no Christian colleges nearby so I thought that I may as well go to the one my parents attended … 5 states away. What I didn’t realize, is that little had changed in the 25 years since my parents went there. Rules, regulations, and unequal criteria for males/females were still early 1960’s. If I had it to do over again, I would have transferred out after I met my husband-to-be my Freshman year. He was smart and he did that. I’m stubborn though and wanted to finish where I started. I remember the first week when I received my first demerit. I still have every demerit I ever received. Back to that in a minute…

Some Background

You see? In high school I was “the weird one”. I had some close friends, which coupled with my dream of “leaving forever”, was part of the reason I survived high school. I grew up in a legalistic, religious background. It was a loving home… and most of what I experienced I wouldn’t change because I’m sure it is a part of who I am today (and I happen to like who I am today). However, in high school I was not allowed to do anything OUTSIDE OF SCHOOL. No “dragging main” on Friday and Saturday nights. I wasn’t allowed to date until I was 16 years old, and by the time I hit that milestone everyone thought I was “weird”. I didn’t get to go to movies or dances. I got really tired of people thinking I felt as if I was better than everyone else, when the boundaries put in place were not of my choosing. I was bullied. I’ve never really talked about it to many people. Classmates would probably be shocked if they knew some of the things that happened to me when I was caught in the gym alone, or in the hallway on the way to Study Hall. One of my bullies (a second cousin one year older) would actually follow me into the bathroom (he was male) and shove me around just for kicks. Another bully, also one year older, not only shoved me around and called me names, but he pinched private parts, threatened me with horrible death threats, and basically made my life hell. I would just see him coming and start to have a panic attack. I learned to duck into safe places like the office, or favorite teacher’s rooms “just to say hi” to escape an encounter with him. One of the things he constantly pounded (quite literally) into me was that I thought I was better than everyone else because I was so “holy”. This is the baggage I took into college with me <smile>!

Yay! A Demerit!

By the time I was 18 and started getting written up (for really ridiculous things), I began to really excel at breaking stupid rules. Sure, I got a LOT of demerits but I did plenty of things I never got caught for either. I don’t say that in a bragging way. My point is that I really was proud of having proof on paper what a “rebel” I was. I even sat through some “sermons” from hall monitors and dorm mothers because of what my last name was. My family name was known at this university and they couldn’t believe I wasn’t behaving “perfectly”. I got married young and tease my husband that it was “just to get out of the dorm”. I even received some demerits after I said “I do“… for sitting to close to my husband in chapel. *rolls eyes* But ya know something? I hung on to every single one of those demerits because they were important to me. They represented a turning point in my life. I finally realized as a young adult that I could make decisions about what I would – and wouldn’t do – by myself. I really filled my lungs deeply with the freedom of that feeling! Demerits were received for not meeting someone else’s expectations. Now I could determine what my own boundaries were, what my expectations were for my own life.

I’m a person of faith (and haven’t tried to hide that on here), but I like to think I really live my faith and am a REAL person. Life isn’t about rules and regulations. Nothing wrong with some of those as they keep us on track, help us reach goals, and provide security. However, these rules and boundaries are only good when they set us free, not when they cripple us. Trying to follow someone else’s rules will only get you a box full of demerits. You have to believe what you live and live what you believe.

Life Turning Point

My college experiences and changes set the stage for how I handle life today. It was a turning point for me. I stopped apologizing for who I was, and felt comfortable in my own skin because *I* had made decisions and set standards for myself that I approved of and felt comfortable with as well. If someone didn’t like what I did, I gently (OK, sometimes it wasn’t gentle) argued that I respected their choices, so they should respect mine. I learned to be responsible for ME. I wanted to live a transparent, REAL kind of life, and wanted to make a difference because of that “realness”.

I had single-sided deafness from a car accident at the age of 6-years-old. I had my last ear surgery at the age of 18. I STILL think it took us all by surprise when I developed rather rapid, bi-lateral, progressive, sensorineural hearing loss after the birth of my kiddos. At the same time, I developed Meniere’s disease (although I didn’t know what it was at the time). I determined early on what kind of “person with disabilities” I wanted to be. I would be responsible for who I am and how I cope. My top TEN decisions that turned my life around:

1. It is OK to grieve. It is OK to scream.

I learned how important it is to give yourself permission to FEEL. Bottling up those feelings only leads to physical and emotional problems.

2. Discover your “safe people”.

I’ve blogged about this before. However, find who is “safe”; cherish and nurture these relationships. (Some of those posts are HERE, HERE, and HERE.)

3. I can “be deaf and have a balance disorder” however I want!

Disability and invisible illnesses are often unique and you may not share exactly the same symptoms as another. Own who you are. Do what makes you comfortable with your “new normal”. For me this means bling-bling on the cochlear implant, bright canes and assistance dog. I am far better served to make the invisible, visible.

4. When necessary, get professional help.

There is no shame in seeking help. Finding a trusted, objective professional can be very beneficial for a variety of reasons. If you aren’t happy with who you are seeing, find someone else.

5. When necessary, ASK for help from others.

There is no shame in asking for help when you need assistance. I have never had anyone turn me down if I ask for help getting to my car, or to help me identify what sound Chloe is zeroed in on. In spite of the negative headlines, most people are nice. Most are glad to help when asked and feel good about offering assistance. (There is a trick to this though – you DO have to ASK. If you are an independent peep like me, folks have learned to wait to see if I ask for help).

6. Believe you can make a difference.

I don’t care what your limitations are. I have never met ANYONE that didn’t have a way to make a difference – to be a catalyst for positive change. Our disabilities don’t limit us – WE limit ourselves.

7. Avoid negative people.

We all have these folks in our lives. But you can limit your interaction. Set boundaries. Protect yourself.

8. Dream big. Have goals.

Just because special challenges “rocked your world” doesn’t mean you can’t have short-term and long-term goals. Your attitude is the only barrier to achieving these.

9. Write. Share. Take photos.

Thinking is great. I recommend THINKING. However, the single most powerful tool I have is my writing. I know others who draw, take pictures, or attend support groups and share. Make sure your “new normal” is something tangible, something you can look back on and identify and recognize change.

10. Don’t work at meeting someone else’s expectations.

If you haven’t learned this already, here’s a news flash. You can’t please everyone. It is healthy to have expectations for yourself, but those alone are all you should work towards.

Have you ever received “grief” for not following someone else’s directions about how to live your life? As a kid, this is OK because we need older (and sometimes wiser) folks to give us direction and instill good habits. But as an adult, you are responsible for you. Don’t apologize for choices you have made. If you deal with your challenges a certain way and it works for you, pat yourself on the back. Be careful though. Like ALL people, we can become focused on self. That isn’t what I’m trying to encourage here. We need other people. Don’t isolate yourself and say, “to heck with the rest of the world”.

Denise Portis

Beaver – Destructive or Discerning?

Published on May 16, 2014May 16, 2014 by hearingelmo2 Comments

We have beaver. Actually, we’ve had beaver for about 16 months now, however this summer it is really evident WE HAVE BEAVER.

Our townhouse community sits up at the top of a hill. It is a closed cul-de-sac community, so it is great that “through traffic” is not an issue here. A brand-new walking path is now within footsteps of my front door. It will eventually connect to other walking paths, but for now it is about 1.5 miles round trip. At the bottom of our “hill” the path takes us by both a busy road, and what was once a small creek. In the Spring, I use to get a kick out of “hearing” the water sounds, especially after heavy rains. Last Spring those water sounds disappeared. However, I spotted this:

… and then this:

The creek quickly turned into a pond. And this year? Well let’s just say there is a new ecosystem near my house.

I came across a huddled group of homeowners about 3 weeks ago, whispering and gesturing towards the pond with banks now within 60 feet of our back doors. I stopped to see what was going on, and because it was early enough in the morning with few traffic sounds, I could actually hear their whispers.

“Will the water level rise much more?”

“What do you think they are up to?”

“Do they bite?”

Now my first thought was, “FOLKS. Beaver do not understand human language and to my knowledge they don’t have bionic hearing like I do. Why the HECK are you whispering?”

I didn’t voice those thoughts. Instead I said, “Ummm” (I’m ever so eloquent…)

“Yeah, but have y’all been down to the pond area where the walking path is? Have y’all seen what has happened down there?”

Blank looks. I discovered they don’t comprehend SOUTHERN. I tried to speak a little more cultured…

“Yes, you should walk down there. There are 2 HUGE culverts about 8 feet in diameter. That water level will never get any higher unless those culverts become dammed up as well. If that happens, the city will just unplug them. After all, that road will flood before our homes will“.

Blank looks. See what a lack of exercise will do? Go walking folks, go walking. Check out what the beaver have done up close. Geesh. I think they were miffed I was talking in a normal tone of voice. After all… *sneaky whisper* … the beaver probably HEARD ME.

Beaver have made a comeback in Maryland. I pulled this from a neighboring county’s website:

“Beaver can be among the most beneficial of the county’s wildlife. They create favorable habitat for a variety of wildlife species including fish, birds, amphibians, reptiles, and mammals. This variety of wildlife is in turn valued for recreational, scientific, educational and aesthetic purposes. Beaver activity is also helpful in retaining storm water runoff and improves water quality by trapping sediment, nutrients, and pollutants. Beaver activity can also cause flooding of roads, trails, forest land. They also consume trees and shrubs. Their impacts often occur suddenly and dramatically.

These benefits and detriments often occur simultaneously at a single location. Because of the varying degrees of tolerance levels among people to beaver activity, there are bound to be disagreements on how best to “deal” with beaver conflicts.” (Howard County Parks and Recreation, 2014).

Living side-by-side with these amazing creatures is fairly simple. I’ve been thinking a lot about this family of beaver.

They migrated to this area near the bay bridge and did what came naturally to them. Not with destruction in mind… but cunning and incredibly discerning architects, this family of beaver have created a whole new ecosystem. We’ve always had tree frogs (although it took Chloe’s trainer to clue me in to what I was hearing each year). But now we have:

… bullfrogs. You should have seen Chloe’s head and ears the first time she heard THEM! These fellas stretch about two feet, nose to tip of hind legs. I know this, because I’m the crazy neighbor lady screeching to the neighborhood boys who have caught them and held them up to “Return them to the pond when you are done!” There are also numerous plants I have never seen before in this area when all we once had was a creek…

and the trees are flourishing…

I counted 4 different families of mallard duck one evening, with little ones thriving in this secluded and protected environment. Turtles are sunbathing on any log or rock that breaches the surface of the water. The fox are back (having been gone for at least two summers). There are enough deer in our area now to make my poor hound dogs hoarse for all the barking alerts they insist on for me.

I cannot help but be amazed. The beaver strengthened and created a home just right for them, and in the process created a place to thrive for other species. Folks? I want to be a beaver.

I didn’t ask for disabilities. I never once thought, “When I grow up… I want to be DEAF and have a significant BALANCE DISORDER”. However, in my own process of adapting and making my environment safe and liveable for ME (cochlear implant surgery, service dog from Fidos For Freedom, be-dazzled canes, no-slip shoes, discovering where all the elevators are on campus, practicing all I learned in vestibular rehab.), I have created a new ecosystem.

I want MY WORLD to intersect with the REAL WORLD and help folks recognize the importance of inclusion. I work to make sure that my new life, teaches and advocates in accepting differences. I want others to recognize abilities rather than disabilities. I want my invisible disabilities to be visible and “pond-like“. I want my life to inspire others to choose to live equally purposeful lives. In my own small way I do this by working with my campus disability office. I openly talk about being “differently-abled” in class. I “plug” what I know whenever I can to whomever will listen… cochlear implants and service dogs, depression and coping skills. I have discovered my environment changing. People are coming out of the woodwork… or umm… newly created POND, and sharing with me that they have a mental illness, invisible challenge or diagnosis such as fibromyalgia, chronic fatigue syndrome, or Lyme’s disease.

Yes. Having an attitude of gratitude and focus on education and advocacy, has me walking by concerned citizens from time to time, whispering about a beaver conspiracy. But just as I’ve learned that being transparent is contagious, these folks will eventually HEAR and go walking to discover other new ecosystems. At least… I hope they will.

Do you live with disability? Are you struggling with an invisible illness? Do you have a chronic condition that folks do not seem to understand, nor comprehend how it affects you? Hearing Elmo is not just a place to “hear”. My desire is that numerous authors, both named and anonymous, begin to disseminate the kind of information that changes our environments. In the end, the beaver aren’t the sole beneficiaries. We all benefit. Would you like to write for Hearing Elmo? Contact me at denise.portis@gmail.com and type “Hearing Elmo” in the subject line. Building dams is pretty fun. It is unexpected. It is worthwhile. We can all make a difference!

Denise Portis

Howard County Parks and Recreation. (2014). Beavers. Retrieved May 16, 2014, from http://howardcountymd.us/DisplayPrimary.aspx?id=2396

Fundamental Attribution Error

Published on April 21, 2014April 22, 2014 by hearingelmo5 Comments

I drive my family crazy sometimes. I have psychology on “the brain”. Things I’m studying, things I’m teaching, things I’m thinking about (the dreaded dissertation looms after all), I tend to talk about. I mean a lot. Even when you don’t want me to.

Spring is a busy month for Hearing Elmo. For some reason, lots of folks tune in and contact me. I love to write (even email responses) so I don’t mind at all. To me? This is what Hearing Elmo is all about. I’m glad to be a small part in helping to raise awareness about invisible disAbilities and chronic illnesses. I learn SO MUCH from so many of you who write. So thanks! 🙂

Lately, I’ve had a lot of conversations both email and face-to-face with folks who are struggling with bad thoughts. Thoughts about strangling someone.

Even though it’s deserved.

People with disAbilities or chronic illness are often judged. Sometimes it’s a first impression. Sometimes it is by someone who knows better. I want to cover both today. In psychology we call this the “Fundamental Attribution Error”. Lilienfeld, Lynn, Namy, and Woolf (2013), explain that the fundamental attribution error “refers to the tendency to overestimate the impact of dispositional influences on other’s behavior. By dispositional influences, we mean enduring characteristics, such as personality traits, attitudes and intelligence. Because of the fundamental attribution error, we also tend to underestimate the impact of situational influences on other’s behavior” (p. 501). It’s that last part I want to talk about in this post.

People with Disability or Chronic Illness are Misunderstood

If you are reading this post you likely have some connection to invisible illness or disAbility. Perhaps your condition is not invisible at all. You may live with personal challenges.

Easter Sunday I came home from church with husband and hound dog and went downstairs to work. After about 20 minutes I came to the realization many of you do each and every day. I was wiped out. I knew I would get far more work done if I went upstairs to take a nap. Some folks call these “power naps”. Me? I’m not going to sugarcoat it. I need naps sometimes because I have Meniere’s disease and hear with a cochlear implant. I’m 47-years-old. I get tired. I get tired a lot! So trudging upstairs I passed my husband in the family room and said, “I’m going upstairs to take a nap“. I stood there a second to see if that elicited any reaction.

Now Terry has been married to me long enough to know that if I actually say I need a nap, you better let me take a nap. No smart remarks. He only said, “Be sure to close the blinds or Chloe will bark at every little thing“. I’ve “trained him well“, yes?

But it isn’t easy being the significant other of someone who has a invisible illness or disAbility. When Terry first married me I was only unilaterally deaf and no balance disorder to speak of. Fast forward 28 years and I am now at a point where I can still do a lot. I have dreams, goals, work hard, am a wife, mother, mentor, teacher, student and writer… and I take naps.

I have been out and about before running errands or just shopping with my best friend – Terry Portis. I have out of the blue said, “Ok. You need to take me home.” The last time this happened we were going to a super Target. We had just parked in the parking garage and Terry started to get out. “Ok“, I said. “You need to take me home“.

He stopped and looked at me. After a long pause he asked incredulously, “You mean… now?”

I looked at him eyeball to eyeball (which can be uncomfortable with the risk of losing your contacts – but I needed him to know I meant business). “Now” I responded.

So we went home. Sometimes when I “run out of gas” I do so very suddenly. There can be little warning. You could make me push it and we’ll both risk the reality of a major nosedive in “Lawn and Garden” with mild concussion and concerned gathered crowd to show for it. (Clean-up on aisle twelve…)

None of us ask to develop acquired disAbilities. No one prays for a chronic illness. People we know and love may get peeved at us that we require more rest than we use to need. Part of it may be that they miss doing things with you that they use to be able to do. My husband loves Target. But sometimes? Well sometimes you need to take me home and do it NOW. That can be hard.

So those of us who have the chronic illness or disAbility need to be understanding too. But… don’t be afraid to talk about it. One of my favorite “opening statements” for a heart-to-heart conversation begins like this:

“When you say (or do) _________________ it makes me feel like _______________.”

It lets the people I care about know that it DOES bother me when they say or do something – not seeing the whole picture. They don’t understand the situation well enough to get why I behaved a certain way or responded a certain way. So I need to remind them. That’s OK.

If you are the “significant other” – try to put yourself in the other person’s shoes. You don’t want to really know what they are going through for that would mean you’d have to share the disAbility or diagnosis to really get it. What they are going through is really… REALLY…

HARD.

But you know what? They can get through it because you are there to help them, encourage them, and cheer them on! (So don’t forget how influential you can be, OK?)

For Those Who Don’t Know me

Several times a year someone who doesn’t even know me will say something that I almost come unglued about. I have one of those moments where I want to strangle someone. But in most states that is still against the law…

Costco, October 2013: I was in the meat section trying to decide how many crock-pot size meals I wanted to make in the next couple of weeks when I heard a woman about 3 feet away say, “Oh MY GOD!!!!!!!!!!! A dog, in the meat section. I’m going to complain to the manager“.

I turned around and saw this woman standing there with hands on hips and an embarrassed husband standing next to her. Well my friends? Sometimes good sense just rushes right out of my head. I pointed my finger in her face and said, “This is a service dog. I am late-deafened and have a balance disorder. This dog has picked up dozens of things for me since I’ve been in this store for the last 20 minutes. You shouldn’t judge what you don’t know. I’d rather have disAbilities than be stupid. You can’t fix stupid“. And I walked away.

Amidst applause. For it seems we had drawn a crowd.

Yet I will be honest with you. More times than not I do NOT get to say something pithy and intelligent. Sometimes my heart is broken. Sometimes I walk away crushed. Sometimes I strangle people. (Ok, maybe not but I may FEEL like it).

It can be really hard when people judge what they don’t know. After stumbling into an end cap at a store I had a person jest, “Little early to be drinking, isn’t it?” I could get mad and “let it rip”. Or strangle. Cuz yeah I’m a little sidetracked by how satisfying that would be right now. But folks don’t know me. They don’t know my reality, or my day-to-day situational influences that have me moving, responding, and requesting naps. Then I have to make a decision.

A) Strangle them

B) Scream at them

C) Walk away. It isn’t worth it.

“C” is the best response most of the time.

———

Do you get tired easily? Does fatigue trigger headaches, body aches, and brain fog? Do you sometimes just need a NAP? People may not understand that. They may think you are being lazy. They may think you should try harder. They may need strangled…

… with the truth. So tell them!

Denise Portis

Lilienfeld, S. O., Lynn, S. J., Namy, L. L., Woolf, N. J. (2013). Psychology: From inquiry to understanding (3rd ed.). Boston: Pearson Publishing.

Make a Difference

Published on April 7, 2014April 7, 2014 by hearingelmo1 Comment

My paternal grandmother passed away unexpectedly on March 28th. She was instrumental in my becoming, well – ME. I told her the FIRST time how important she was to me at Silver State Youth Camp in the Rocky Mountains when I was 13-years-old. I made it a point to tell her at least once a year, and to my knowledge never missed a year of telling her how important she was to me.

We have people we care about, and then there are usually a smaller group of people who influenced who you are. I’m convinced we do not have a whole lot of opportunities in life to invest ourselves THAT WAY in the life of another.

Searching for Significance

One of my favorite books is by Robert McGee. Searching for Significance is something all of us long for I believe. Something it took me years to learn, however, is that “significant” is what you deem important. What I think is significant and life-changing, may not mean a hill of beans to you. And that’s OK. We can’t find significance by asking others how they measure that. Significant things are as unique as people are. This is why so many of us are invested in causes, hobbies, and community service. For US, these things add significance to our lives. We want to make a difference by being involved.

One of my favorite quotes is by Joseph Campbell. “Life has no meaning. Each of us has meaning and we bring it to life. It is a waste to be asking the question when you are the answer.” I find this rather profound. WE bring meaning TO life.

Life is hard. Living with disabilities is hard. Living with adult children at home is hard (not really but I had to throw that in there). If I expect my life – with all it’s trials and successes, joys and sorrows, to provide meaning, I’ve missed the whole point of living.

Some folks think they are not in a position to make a difference. You don’t have to have money or advanced degrees to make a difference. Everyone has some kind of talent. I have friends whose disabilities are severe enough they are really home-bound. Yet they have made such a difference in my life through the short emails or messages they send me – right when I need encouragement the most. I have had people I don’t even know make a difference.

I will never forget the homeless man I met at the inner harbor in Baltimore. My “quick diagnosis” was schizophrenia. He was a beggar, entertainer, and to many a nuisance. He stopped me to ask about my service dog. He asked if he could have her and promised to take good care of her. When I explained what she does for me I actually got choked up. He listened attentively and then squatted down and held her head for a moment. He muttered something to her and I couldn’t make it out. (It hadn’t registered with him that I said I was late-deafened). He looked up and said a little louder, “I was jus’ tellin’ her to be the best dog for you she could be because life is short. She makes a difference so she has to count now, not tomorrow”. I was like, “Woah.” That has stuck to me like super glue for 6 years now. It has inspired me to make a difference TODAY. We aren’t promised tomorrow to make a difference. Count now.

Just Remember to TELL THEM

If someone else does something that makes a difference to you, won’t you tell them so? It doesn’t have to be a huge announcement. It doesn’t have to be a flamboyant gesture. No need for helium balloons and streamers. Just tell them, “You made a difference”.

My grandparents... together again. — My grandparents… together again.

We need to let others know when they influence us or inspire us. Who am I because of my grandmother? Those who knew us both tell me I get my stubbornness from her. They also tell me my love of dogs, singing voice, hair color, and ability to confront people with courage all come from her. The reality is that even when my life began to change as the result of Meniere’s disease and deafness, her letters made a difference. She is a writer, and encourager, a cheerleader, an advocate, a teacher, and a legacy-builder. When she wrote, a common theme included near constant reminders that *I* could still make a difference. She encouraged me to be an advocate.

I am.

She encouraged me to write.

I do.

She told me I should not be afraid to speak and present to others.

I’m not and I do.

Her legacy of “making a difference” spans generations.

Very likely I do not know you personally. However, I do know that you *POINTS THROUGH YOUR COMPUTER SCREEN* can make a difference. It doesn’t have to be big. Betcha it is big to someone else though! That is what making a difference is all about.

Denise Portis

Your Thinker and the Trickle Down Effect

Published on March 21, 2014March 21, 2014 by hearingelmo2 Comments

Wednesday, March 19th

I had a “pep in my step”. I had a whistle on my lips. My heart was glad. I was walking my service dog and most of the snow was gone from the ground.

“What beautiful weather for a walk!” I thought to myself.

But then a squirrel scampered down off a tree trunk merely inches in front of my well-trained service dog’s nose. It all happened so fast.

The first jerk on the leash put my body in motion. You can’t fight the laws of science. I was going to be in motion until something stopped my motion since my brain went on instant vacay. Let me tell you I stuck the landing. Nearby Olympic judges all held up “10” placards. Cheers all around (or at least in my imagination).

I lay there on the pine-needle strewn ground for a minute trying to determine if anything was broken. The world was still spinning. I closed my eyes for a minute and choked back the nausea. Flipping to my back I felt a hound dog kiss on my face.

“Whew. Chloe is still here”, I thought.

I forced my brain to verify the leash was actually still in my hand. YUP! I opened my eyes and focused for a second. Chloe went into a down/stay on her own and rested her head on my shoulder. The weight of my ding-a-ling service dog’s head was a comfort.

I heard something! Another good sign. My cochlear implant was still attached to my head. I focused on the sound and looked up – Up – UP into the tree boughs above me and spotted that rascal squirrel.

Oh.

My.

Gosh.

He had the impudence to sit up there fussing – at US. I couldn’t help but laugh. He was ticked! I laughed all the way up until he skipped away… jerking the branch he was on and dumping snow on my face and chest from twenty feet up. My laughter stopped immediately. I was choking after all…

I sat up and brushed the snow off and started to giggle again. Chloe wagged her tail in delight. It seems she wasn’t going to get a “Denise sermon” after all. Within 10-15 seconds though I was overcome with a different emotion. I sat there crying. Not just silent tears – nooooooo. This was unladylike, deep sobs with intermittent hiccups!

I sat there bawling my eyes out for five or six minutes, comforted by a hound dog most certainly sorry her instincts caused another “Timber…” moment for me.

Yes. I could see the funny. But fast on the heels of the laughter and positive attitude came an emotion near the surface most days. Self-pity. Sorrow. I hate my life.

Is Happiness a Choice?

One of my favorite books is “Happiness is a Choice” by Minirth and Meier. The premise of the book is that especially for those of us living with depression, happiness is a choice. The book’s number one principle is: “Change the way you talk to yourself”.

I’m on board with that. Really!

I am!

“You can change some of the negative aspects of your thinking by challenging the irrational parts and replacing them with more reasonable thoughts” (Martin, 2010, para. 4). Whitbourne (2013) explained these, “inner monologues as “self-talk,” in which you provide opinions and evaluations on what you’re doing as you’re doing it. You can think of self-talk as the inner voice equivalent of sports announcers commenting on a player’s successes or failures on the playing field” (para. 1). I believe in the power of self-talk. I believe our “thinker” really can influence our behavior. My husband is a cognitive psychologist. He and I have a lot of discussions as I work on my own Ph.D. about the best ways to change behavior. He – and other professionals like him – believe that if you can simply change what your thinker is thinking, there will be a trickle down effect. It will influence and possibly change behaviors you wish to change. There is a lot of scholarly research and science to support this.

I believe this! I do! But I will be honest for a moment. There are times I want to just say…

SCREW SCIENCE

That’s right. Just in case you even needed MY – or ANYONE’s permission…

It is OK to be upset about the reality of your life.

Living with acquired disability sucks. Hearing loss sucks. Meniere’s disease sucks. How about you? Fill in the blank:

_____________________ SUCKS.

*Deep Cleansing Breath*

I’ve tried to explain to folks who ask, that living with a chronic condition or acquired disability is – on the best of days – HARD.

I still get the flu.

I have still lost people I love and miss them.

I have lost beloved pets.

I get headaches, body aches, and am growing older.

I get mad at my family sometimes.

I experience car problems.

I hate traffic.

I have unexpected bills.

I still have a period (hey! Jus’ layin’ it all out there! <BIG GRIN>)

All of these things happen to me just like they happen to you. Only folks with chronic illness or acquired disability have those things happen on top of what – for them, is the norm… living with challenges daily.

Yeah, yeah. I know!

~~I still get the flu~~ I can be thankful I have medicine to help and a hound dog to cuddle with. See? I can see the positive!

~~I have still lost people I love and miss them~~ I can be thankful I will see them again someday based on my personal faith beliefs and worldview.

~~I have lost beloved pets~~ I have other furry family members and that makes me happy.

~~I get headaches, body aches, and am growing older~~ Beats the alternative. Right?

~~I get mad at my family sometimes~~ But I have a family…

~~I experience car problems.~~ But I have a car and this time we could afford the “fix”.

~~I hate traffic.~~ I have a job to go to.

~~I have unexpected bills.~~ But I’m smart enough to figure out how to pay that bill or arrange payments.

~~I still have a period~~ Yeah. I got nuthin… (LOL)

So can my forced “change thinking” have a trickle down effect and influence my behavior, feelings, and perceptions? Yes.

And no.

Confused? I don’t mean to be the cause of a “What the heck you talkin’ about, Denise?” thoughts.

However, it is important – at least I think it is – to allow yourself to have moments of self-pity. Feel the sorrow. Rail at God. Write “My Life Can Suck” really big and pin it to a wall and throw darts at it. If it makes you feel better, do it. I think it is healthy to “own your feelings” about the reality of your life. It’s hard. You may feel alone. You may want to give up. It’s OK to feel that way.

But then? (Brace yourself…)

Change your thinker. Allow it to do what studies have shown actually works. The “Trickle Down Effect”. I’m here to tell you though that it isn’t a long-term fix. You may have to “adjust the knobs on your thinker” daily. Maybe on REEEEEALLY bad days – hourly!

Do you know what thoughts help me the most?

Keep on keeping on.

I can make a difference in the life of another.

Tomorrow is a new day.

Mean People Suck. (Sorry. That’s my favorite bumper sticker and I *had* to throw it in there).

Yup. They are platitudes. “Feel good self-talk”. But ya know something? It works for me because I also allow myself the freedom to sit in the pine-needles with snow covering my shoulders and bawl my eyes out.

So strive to improve your self-talk. But feel free to wail.

{{{{{{{{{CYBER HUG}}}}}}}}}}}} from me to you!

Denise Portis

©2014 Personal Hearing Loss Journal

Martin, B. (2010). Challenging Negative Self-Talk. Psych Central. Retrieved on March 21, 2014, from http://psychcentral.com/lib/challenging-negative-self-talk/0003196

Whitbourne, S. K. (2013). Make Your Self-Talk Work for You. Psychology Today. Retrieved on March 21, 2014, from http://www.psychologytoday.com/blog/fulfillment-any-age/201309/make-your-self-talk-work-you

Twinkle Lights that Don’t Twinkle

Published on November 29, 2013November 29, 2013 by hearingelmo1 Comment

I discovered something by accident last year. I don’t like for twinkle lights to twinkle. I mean… I want the lights to be ON and to actually light up, but I don’t want them to blink. Part of living with an acquired disability is learning to make adjustments. Having Meniere’s disease may mean that you learn what may be specific triggers for you and do what you can to avoid those triggers. I have problems with lights. This is part of the reason I don’t drive at night anymore. I don’t have night blindness, but oncoming traffic light triggers extreme vertigo. So I don’t drive at night. It’s a pain, but a necessary change in my life.

Other kinds of lights bother me. I discovered that Christmas tree twinkle lights make me feel as if the room is rotating. Quickly. So I am making adjustments that include a delay in decorating the family Christmas tree until I can get to the store to buy more twinkle lights – ones that don’t twinkle. So – picture with me plugging in our Christmas tree every evening and BAM. LIGHT everywhere. But it won’t twinkle… which means I can hang out in the same room as the tree is in without heaving all over the nearest family member.

Making Adjustments

One of the wonderful things about having a blog with numerous guest authors is that I have learned a bunch of things about other disabilities. Being a client at Fidos For Freedom, Inc., has also helped because I have been able to personally get to know people who live with other kinds of disabilities and chronic illnesses. Through the years I have learned about some of the adjustments that folks use to navigate life:

1. Get more rest

According to the National Sleep Foundation, average, healthy adults need 7-9 hours of sleep every night (National Sleep Foundation, 2011). While most of us very likely receive far less than that, the experts agree that this is the amount we should strive for every night. However, people who live with disability or invisible illness may actually require more. At the very least, these folks should make the 7-9 suggested hours a priority.

I now know that people with MS, fibromyalgia, chronic fatigue syndrome, and various neurological disorders may not only need a good night’s rest, they may also need a daily nap. Doing so may mean that they can continue their day performing at their best. Not taking one may mean they are more at risk for an accident, “brain fog”, etc. One of my friends actually said her doctor told her, “If I need to write you a prescription to take a nap everyday so that you can get the rest you need, I’ll write you one!” That’s what I need. A prescription for a nap! 🙂

2. Leave Home Prepared

People with acquired disability likely learned the hard way to leave home prepared. That may mean making sure you have extra cochlear implant batteries. It may mean that you have an extra cane in the car. Maybe it means that you make sure you have an extra meal or snack if you are diabetic. You may have a medical pack that holds injections, emergency contact information, medicines, etc. If you have a service dog it requires that you walk out the door with water, an extra meal (in case caught away from home during mealtimes), clean up bags, vest and I.D. Spontaneously running out the door while only grabbing your keys is something you just can’t do anymore. But that’s OK. Learning to leave home prepared really takes very little time and in the long run can only help you.

3. Medic Alert Identification

Whether you wear a medic alert necklace, bracelet, or carry a card, you probably have some way of letting emergency response personnel know about special medical information that may just save your life. My own bracelet was so old, the engraving was barely discernible after years of scratches and wear-and-tear. For less than $30 I replaced it. When I told my husband he’d see a charge for it on the credit card bill he said, “You know? I don’t even know where mine is. I probably should replace mine as well”. I sat there stunned for a minute – looking at my significant other who happens to only have one kidney and gave him a “Denise sermon” that was probably not only LOUD, but unforgettable. Did you know…

More than 95 percent of respondents look for a medical ID during emergencies.
More than 75 percent look for a medical ID immediately upon assessing a patient.
95 percent look at the patient’s wrist to find a medical ID, and 68 percent look for an ID on the patient’s neck.

Some of the stuff out there is very attractive for those who turn up their noses at traditional looking medical alert jewelry. However, I must caution you that there has been an alarming trend suggesting these new options may not be identified during an emergency. Yes, the sterling silver band around my wrist may not be the prettiest thing in the world, but I’m confident that in the event of an emergency it will be recognized for what it is. I’m perfectly happy being “smart” if not fashionable.

4. Check the forecast

Meteorology is NOT an exact science. I always check the forecast. I may not be able to call in sick to work when it is raining and a Meniere’s flare kicks my butt, but just knowing in advance the weather is going to be bad can at least help me mentally prepare. I can make sure I grab that cane in the car and remember to hold Chloe’s vest handle instead of just her leash. People who have mobility challenges may have to make schedule adjustments if they cannot easily or safely navigate away from home if the weather is bad.

5. Charge your cell phone

Even though I have a hearing loss, with today’s technology advances I can use and carry a cell phone with t-coil settings, text, access the Internet, and much more from a mobile phone. The only problem I ever run into is when I carry around a phone that doesn’t have a charged battery. I’ve done this enough that I think I’ve finally instilled a good habit of always charging my phone at night, and making sure each vehicle has a charger that can be used with the cigarette lighter. I even carry a small charger that I can plug into a computer at work if needed.

6. Other:

Honestly? One could write a book on the number of adjustments one makes when living with a disability or chronic illness. Some of the things YOU do may not even be things someone who shares your diagnosis must do. Don’t fret about Christmas tree lights that don’t twinkle. Even people without disability make adjustments as they go through life. Folks get reading glasses, stop eating spicy food, and walk instead of run for exercise. We do this because we are smart (grin) and malleable. We do what we must. My Christmas tree may not twinkle from now on, but it is still BEAUTIFUL.

Denise Portis

National Sleep Foundation. (2011). How much sleep do we really need? Retrieved October 22, 2012 from http://www.sleepfoundation.org/article/how-sleep-works/how-much-sleep-do-we-really-need

♫♪ Gloom, DESPAIR, and Agony on Me… ♫♪

Published on November 4, 2013November 5, 2013 by hearingelmo3 Comments

I dunno... maybe it was the hound dog I fell in love with? — I dunno… maybe it was the hound dog I fell in love with?

I have a confession to make. I loved CBS’s “Hee Haw”. Growing up I had three television channels. Thank goodness CBS was one of them. I’d list everything I loved about “Hee Haw”, but frankly I loved EVERYTHING about “Hee Haw”. I’d be listing instead of posting! Some folks hated it – even some of my siblings. But I was a true fan. I loved all things musical, even the “Lawrence Welk Show” and the “Donnie and Marie Osmond Show”. Go figure.

One of the weekly skits was done by a quartet (sometimes trio) of regulars singing “Gloom, Despair” written by Roy Clark and Buck Owens. It is a “right cheerful song” – <BIG GRIN>. Here are the lyrics:

Gloom, despair, and agony on me Deep, dark depression, excessive misery… If it weren’t for bad luck, I’d have no luck at all Gloom, despair, and agony on me…

If you’d like to listen to the lively tune, CLICK HERE.

Now that I’m in my late 40’s and have some “life” tucked under my experience belt, I hum or burst out in song far more “Hee Haw” songs than Lawrence Welk or Donnie and Marie tunes.

If It Weren’t for Bad Luck

Have you ever felt that “if it weren’t for bad luck, I’d have no luck at all”? Have you ever felt as if you were facing “deep, dark depression”? I suppose if I had to pick ONE constant theme in various emails that I receive each week from readers, it would be that people with disabilities, folks living with chronic illness, souls who live with invisible illness… deal with depression. It can be mild forms and only a sporadic nuisance. Maybe it is something you deal with on a daily basis, however, and a more chronic and constant issue for you.

I’m big on citing scholarly research about various topics. However, depression is so closely linked with various disabilities and illnesses, that there are simply to many studies to choose from for this post! I, too, struggle with depression. Gloom, despair, and agony… well OK, maybe not that last one – grin!

Something I’m having to learn to deal with is that I also cannot take many medications available to some who struggle with mild, moderate, or major depression. Dizziness and vertigo are the #1 side effect listed by most – if not all. Having Meniere’s disease can complicate things. You already know I fall a lot. However, I also lose consciousness a great deal from the fact that my head makes contact with something else on the way “down”. Seven mild concussions in five years means that I have to traverse my life carefully and methodically. I have to make decisions to lesson my chances of getting dizzy and falling. What’s a person to do if medications increase your risk of other problems – like falling?

Medications are not the only way to treat depression. As a matter of fact, I believe research shows that best results occur when medications are coupled with cognitive-behavioral therapy. But if taking medications are not an option for you, what can you do? You do all you CAN.

1. Therapy

Talk with someone. If insurance or finances do not make this a great option for you, reach out to folks who may have training in various faith-based arenas like churches or community centers.

Unload on a trusted friend. But do it. Reach out.

2. Self-help books

You can’t go into a bookstore without finding that “self help” books evidently are big sellers. Some of them are actually written by people with real expertise, however. Do some research… find out what is good (not necessarily popular).

3. Join a support group

In a digital age, there are even support groups online. This can be great for people with schedule concerns or privacy issues. There is something pretty special about discussing topics of concern with people who live what you are living. Do you prefer meeting face-to-face? Check out your local library and see what groups might be meeting there. Check with a county commission on disabilities to see if there are area support groups. Consider starting one yourself!

4. Try an “alternative” option

Complimentary and alternative medicines have brought us to a place where meditation, chiropractic medicine, acupuncture, and biofeedback are options for some people. Even herbal remedies for things like mood and depression help some folks. Do your research. Talk to your doctor. There is evidence these avenues have helped people!

Not sure if your feelings of depression are something that actually needs to be addressed? Few problems just go away on their own. When you live with disability or chronic illness, depression can creep into the picture. Psychologists will tell you that it is a co-morbid diagnosis for many who have some OTHER diagnosis. Deal with it. Find something that works for you.

Comments and feedback are welcome! You are not alone.

Denise Portis

A Pocketknife to Clean Your Nails

Published on September 22, 2013September 22, 2013 by hearingelmo2 Comments

ABOVE… My dad in 2011 when he visited Gettysburg with us.

Do you know every time I retrieve a nail file to smooth, clean, or file my nails I think of my dad? Isn’t it funny the kinds of things that will recall a memory for us? Not the kind of recall that triggers our sympathetic nervous system and launches a flashback in folks who suffer from PTSD. Instead, the kind of recall that knocks on the door of our heart with a “feel good” memory. The memory replays a specific conversation or event. For me, when I use a nail file I vividly recall how my dad would clean his nails with a pocketknife.

I couldn’t have been more than 7 or 8-years-old, for we had not yet returned to the family farm. My dad still worked for International Harvester at the time. One day I sat watching him clean his nails with a pocketknife.

“Why do you use your knife to clean your nails?”

Dad continued to clean his nails and thought about his reply. The man never just “spoke off the cuff”. He responded after a bit, “It does the job”.

“Well, will you clean MY nails?”

With less thought he replied, “I can’t. I can’t tell where your nail stops and your finger starts”. He scooted closer to allow me to see from a different angle how he was using his knife to clean up under the nail. I may have been young, but I immediately grasped why he couldn’t clean MY nails with this unconventional method.

Although I never could bring myself to clean my own nails with a pocketknife, I learned over the years that one can do things just as well by means of unconventional tools and methods. I would not have understood if someone had tried to tell me that I would eventually become deaf and develop Meniere’s disease – a balance disorder, and that by doing so I would have to adopt some new means to navigate my world safely.

Works For Me – But Maybe Not for you

I suppose one of my biggest pet peeves is when folks start dictating to someone who shares a diagnosis how they MUST go about treating that disease or disorder. Just because something works well for YOU, does not mean it will work well for someone else. This doesn’t mean we shouldn’t be willing to tell our story and share what works for us. Peer networks and support groups are invaluable in my opinion. However if I chose to use a nail file to clean my nails, and you choose a pocketknife, all that should be celebrated is that the end result yields positive benefits for us both. Clean nails are clean nails no matter how they got that way.

That doesn’t mean the process to clean nails is always easy. I have to sit to brush my teeth. That toothbrush swishing around in my head will make me pass out if I do not do so from a seated position. I never could sit on the lid of the commode to brush my TEETH. So I step into the bedroom and sit on the hope chest to brush my teeth. I have to be sure to keep my mouth closed so that there is no splatter. Ewww, right? This last week as I was sitting there brushing my teeth, it just hit me wrong. Here I was 47 years old and unable to brush my freakin’ teeth over a freakin’ sink like a normal – erm – FREAK! So…

I started crying.

My husband stepped into the bedroom. I can’t imagine what he saw. Here is the wife sitting and brushing her teeth, sobbing her eyeballs out, toothpaste now EVERYWHERE, including dribbling down her quivering chin. He calmly said, “You OK?”

Did I look OK? Alright, yuppers… I didn’t actually WANT his help. I just wanted to finish brushing my teeth. Those FREAKIN’ ones…

When a person with disability or chronic illness finds a way that works for THEM, it doesn’t mean it is easy. But this is why we are not disABLED. We are differently-abled. It is quite a cognitive and emotional boost to discover you can still enjoy something you did before – only in a new way. It may look strange, novel, or genius… but the reality is “it gets it done”. Yet what I find works for me, may not work for someone else with Meniere’s disease. I cannot safely clean their nails with my pocketknife.

Celebrate the Day

Gee, we live in a wonderful age of technology! When I think about the miracle in that I’m hearing again bionically, and all the cool tools available to me through simple apps on my iPhone, or special assistive technology, I get goosebumps! I live in a country where service dogs OTHER THAN guide dogs are fairly common. Email and texting – two communication devices I utilize frequently, are favored among the NORMAL hearing population. This makes my life so much easier!

Folks with mobility issues, learning challenges, hearing loss, chronic illness, and various disorders have options available here in the U.S. that we did not have 30 years ago – or even 10 years ago! Yet some of the things we learn to do are through our own ingenuity! I have quite literally patted myself on the back and mentally “high 5’d” myself when I discover a new way of doing things. To you being able to do the laundry without actually having to change the altitude of your head is not very impressive. But to me? This is a “WOO-HOO” discovery. But the proper lean formation, use of step-stool and service dog work for me. They may not work for you if you, too, have Meniere’s disease. But be willing to share ideas with each other without dictating proper protocol. The end goal is clean nails after all.

Denise Portis

You’re So Vain…

Published on September 14, 2013September 14, 2013 by hearingelmo8 Comments

I love my local grocery store. Not so much that I was pleased I had to go twice this week after forgetting a few items, but the aisles are spacious, the employees know me (and Chloe) by name, and I save a lot of money in both sale items and even gas points. My unexpected impromptu second visit this week was disastrous, at least from an emotional standpoint. I came down the aisle looking for those elusive cotton balls that I failed to remember on my first trip and met a lady only slightly older than me with two canes. We stopped to chat for a minute and thought I had met another who understood when she surprised me by saying, “I just couldn’t work with a dog. It seems so vain because so much attention is brought on by being with one“.

I could feel the heat creep up in my face and I blinked back tears as I stuttered out, “Well different strokes for different folks I suppose“. (I’m always so proud of how eloquent I am in a pinch *rolls eyes*).

I really had very little left to say so quickly cut it short and moved on to find those STUPID cotton balls. Because ya know? Now I was MAD after that initial “kick in the gut” feeling so I determined then and there those cotton balls were stupid. Made me feel better anyway.

My husband and I kid around about how vain Chloe is. Her biggest fault as a service dog is that she is too friendly. She’s a flirt. She gets gently reprimanded on days my balance is really off if I put her in a sit/stay while talking, but then she wags and flirts and stretches for a kiss. Heaven forbid someone actually switch their attention to HER! Then she is like, “You love me. Denise loves me. We all love me. I love me.” She’s so vain! (♫♪ Chloe, you probably think this post is about you! Don’t you? Don’t you?♪♫)

Many people with invisible disabilities are not in favor of mitigating their disabilities with a service dog because it DOES bring attention to you. As a matter of fact, I know of cases where folks drop out of training programs when they discover that this service dog will bring unwanted attention to them. That isn’t worth it in their opinion. And… that’s OK. I have Meniere’s disease (a balance disorder) and am hearing again with cochlear implant technology. I HAVE chosen to mitigate those invisible disabilities with a service dog. I wear bling-bling on my cochlear implant processor. On days my balance is REALLY bad, I use a bright purple, metallic cane. This works for ME. It doesn’t mean it will work for YOU.

could’ve should’ve would’ve

If I could’ve… if I shoud’ve.. or if I would’ve – I suppose if I hadn’t been on the verge of tears I would have told this woman:

“Do you know that before Chloe, I spent 20-30 minutes before work each day changing outfits trying to find one that hid all the bruises from my falls?”

“Do you know that when the elevator was temporarily out of service this week I didn’t have to cancel class because Chloe was able to counter-balance for me on the stairs?”

“Do you know this cochlear implant bling-bling helps people remember to face me when they speak if it is obvious I’m not hearing well?”

“Do you know all these patches and certification tags on Chloe’s vest legitimize her role as a service dog so that I have less access issues?”

“Do you know it takes me 45 minutes to get groceries each week now because Chloe picks up the things I accidentally drop compared to the 2 1/2 hour trips I use to have?”

“Do you know I never have to ask a stranger to pick up something for me now?”

“Do you know I’m working again because I don’t have to worry about putting students out to pick up pens, erasers, markers, or papers for me in the classroom?”

“Do you know I never have to worry about missing a phone call now?”

“Do you know I have the sweetest, “kiss me awake” alarm clock in the whole, wide world?”

“DO YOU KNOW I THINK YOU NEED A DOG BECAUSE YOU OBVIOUSLY DON’T HAVE ENOUGH LOVE IN YOUR LIFE?”

Ok… maybe that last one is unnecessary.

But the reality?

People with invisible disabilities or chronic illness are more likely to deal with VANES instead of vanity each and every day. We have things we pay attention to so that we stay SAFE, red flags that remind us we are pushing our limits. Boundaries in place to keep us from over-doing things. I know my body better than anyone… even my doctors. This past week we had torrential rains on Thursday. On Wednesday, I was in “full disability regalia“. Chloe, cane, and fresh batteries in the “ears” and still I wobbled and fumbled my way through the day because there was a system coming into our area! A student said, “Wow your balance is really off today!”

I replied, “Yes! I’m a human barometer and much more accurate than the Weather Channel!”

A thoughtful pause and then, “Is there an app for that?” (snicker… I love my students).

Like a weather vane that helps farmers or meteorologists know which way the wind is blowing, people with disabilities have things in place that allow them to “take their pulse” each day to see how to safely navigate the world around them.

I’ve met a good number of people who have a service dog. I’ve never met anyone that I suspected of choosing to do so because they wanted the attention. And so please understand that the only one who is vain in my partnership is CHLOE.

♫ You’re so vain
You probably think this POST is about you
You’re so vain
I’ll bet you think this POST is about you
Don’t you? Don’t you? ♫

That’s OK. If Chloe’s weakness is that she is warm and friendly… I can live with that.

Denise Portis

Permission to SLOSH

Published on September 5, 2013 by hearingelmo1 Comment

“I didn’t give you permission to slosh!”

Tuesday was NOT a great day. When it is rainy out and the barometer matches my internal “tilt-a-whirl” meter, I expect to have a bad day. When it is sunny though, I get aggravated when I’m having balance problems. Tuesday was a beautiful, sunny morning! I’m beginning to think that fatigue may have something to do with it because I know I didn’t sleep well Monday night.

I headed downstairs with my morning coffee, a whole day ahead of me to work from my basement, home office, only to slosh the coffee right out of my cup on the first step. I paused. I took another two steps down. More sloshed out. I paused. Aggravated I was going to have come back with cleaner, I took one more step. Coffee sloshed out. I…

(paused? WRONG)

I screamed. “I didn’t give you permission to slosh!”

Hound dog, (a.k.a. Chloe the wonder dog) sat at the bottom of the stairs safely out of the way and quirked an eyebrow at me. ♥♥ Talking to your coffee again, Denise? ♥♥

I’d do anything to be in CONTROL

One thing that I hear people with disabilities complain about is that they really would love to control their lives better. They may even make feeble attempts (or aggravating ones) to do so.

People with hearing loss may monopolize conversations. If they are the only one talking, they don’t have to deal with the frustrating inability to hear well.

A friend of mine with Meniere’s disease admitted to me that she actually acts cold and disinterested around people because she found it keeps them at a distance. If they approach and try to talk or even hug her hello, she is overwhelmed with vertigo and nausea.

I think it is natural to want to control our environment – even our lives to a certain degree. It can help us feel safe, even secure! But let’s face it… there is much in our lives that we cannot control.

We can eat right, not smoke, and exercise and still develop high blood pressure if it is in your genes. (Yes, it can improve your health and maybe delay the onset, but according to experts you are still at risk).

We can do our best to live a healthy lifestyle and still get cancer. We can be a safe driver, never going over the speed limit and still get in a car accident. We can avoid high-crime areas and still be the victim of a crime. There is much in life that is NOT in the scope of our control.

Control or Management?

I feel very frustrated when I’ve carefully watched the weather and still get caught away from home when it starts to rain. I didn’t give the skies permission to SLOSH! I can wear tennis shoes and have my head up and eyes open on a walk, and still stumble and trip over a crack in a sidewalk. I feel – erm – sloshy.

However, people with disabilities or invisible illness don’t have to give up hope of controlling their symptoms. You may not be able to control your life, but you can manage it. Symptoms cannot be controlled but they can be managed. One of my favorite psychologists is Albert Bandura. He was one of the first to define and promote self-efficacy. Bandura said that self-efficacy is, “the belief in one’s capabilities to organize and execute the courses of action required to manage prospective situations” (Bandura, p. 72, 1994). It makes us feel better to MANAGE our lives.

With my hearing loss, I can always make sure I carry extra batteries, clean and dry my cochlear implant and hearing aid, watch my service dog for cues, ask people to email instead of call, and request moving to a quieter area to have a face-to-face talk with someone. With Meniere’s, I can avoid sodium, limit caffeine, be prepared for bad weather, and keep my service dog’s vest in tip-top shape so she can help me. I’m “managing” my life as a person with disabilities. This gives me confidence and helps me feel less – SLOSHY.

You’ve done all you can

In spite of what I’ve learned, sometimes life still sloshes. You’ve done everything in your power to navigate life and “hope for the best and plan for the worst”. Life ends up sloshing anyway. I’ve wanted to put my coffee in a sippy cup before. Or one of those cups that can be used in a moving vehicle. You know… those “slosh-less” ones? But I want my coffee in a beautiful, ceramic mug. The kind I can wrap my hands around and feel the warmth while inhaling the pleasant and comforting aroma of slow-brewed coffee! The risk of “sloshing” is worth it.

I hope that even when you’ve done all you can to manage your life, you can pick yourself up and wipe off the sloshed coffee when life …

T I L T S.

Because it will… be ready for it! 🙂

Denise Portis

Bandura, A. (1994). Self-efficacy. In V. S. Ramachaudran (Ed.), Encyclopedia of human behavior,4. New York: Academic Press, pp. 71-81.