deafness – Page 4 – Hearing Elmo

Through the Eyes of a Newbie

Published on June 29, 2015June 29, 2015 by hearingelmo5 Comments

Milo Cade - Fidos For Freedom, Inc., Service Dog. — Milo Cade – Fidos For Freedom, Inc., Service Dog.

Many of Hearing Elmo’s readers know that I retired my service dog, Chloe, this year. Since May 1st, she is enjoying retirement and still does some hearing alerts at home. She is happy, spoiled, and we believe well-deserving of all the naps and belly rubs she is currently receiving. I was recently matched with Milo, from Fidos For Freedom, Inc. Milo is a shepherd/lab mix and I am enjoying the process of being partnered with a mobility/balance service dog versus a hearing/balance assistance dog. We determined my primary needs are mitigating issues with Meniere’s disease and not hearing alerts. I love my cochlear implant, and feel like I have adjusted to the world of “hearing again” very well. My balance is, and will continue to be, a major issue. I suppose in a way, this is an introduction of my new partner, Milo.

One thing I have enjoyed is experiencing MY world (work, church, walks, etc.) through the eyes of a newbie. For Milo, everything in MY world is new. He looks at everything in awe. If he isn’t looking in awe, he is sometimes in “investigation mode”.

Is it scary?

Is it freaky?

Is it edible?

Is it alive?

What does Denise think?

At a training session with my trainer a week or so ago, I brought Milo to one of my classes. I had allowed enough time to exit the service dog safely from my car. I had allowed time for a short potty break. (Honestly, Chloe hasn’t been at home long enough for me to get out of the habit of some of these things. I found myself at a potty area recently and realized I didn’t have a dog by my side!). I allowed enough time. Not.

I did not allow time for all the new things my newbie partner was seeing. The grassy area was new. The trees and picnic bench were new. The ramp into the building was new. The automatic door push-button was new. At least… it was new to MILO. For just a brief second, I was mildly annoyed. I had not allowed time for appraising all of these new environments. That was MY bad, not Milo’s. I want my dog to be confident and aware of his surroundings. I was almost late to class, but the time I took “extra” was time worth taking. Newbies need some extra patience from those of us who are veterans to the schedule and environment. We owe it to them. But you know something?

Blowing It BIG!

I really know how to blow it. I mean, I don’t do anything half-way. This isn’t always a good thing. I recently became extremely exasperated with someone relatively new to “hearing again”. I try hard to be a positive advocate for people with disabilities, and chronic and/or invisible illnesses. This blog is, in part, a way that I try to raise awareness and encourage people to talk about tough subjects.

I see this lady about 3 times a month at the grocery store. Over a year ago she saw my CI, asked about it, and eventually had surgery herself. This individual was relatively new to hearing loss. She was still struggling to help the people important to her understand that the CI did not “FIX” her hearing. Instead it was restored to a type of hearing (bionically) and she would still be in environments occasionally where she would need others to understand that she needed to 1) see their face, 2) slow them down, and 3) find a quieter spot. After listening to her for about ten minutes – really distraught about not feeling accepted – I felt myself becoming impatient. We had this conversation before and I felt as if we were “beating a dead horse”. Remorse and shame immediately washed over me. I stuck my finger in my own face and preached, “Really, Denise? Really?” (Y’all are trying to figure out how you stick your own finger in your face, aren’t you?)

As I had (thankfully) kept my mouth shut, I continued to listen and realized she was now apologizing… “I’m sorry I keep bringing this up. I just can’t seem to help them understand that the CI was not a CURE. I’m so frustrated!”

I realized then and there that I needed to put myself in newbie shoes more often and remember how difficult those early years were. Advocating and educating take time. Families and friends do not just wake up overnight and suddenly “get it”.

I told her that I often forget how hard those early years were, and that she had to keep at it… eventually some of it would start to sink in for her family members.

As a person of faith, I believe everything happens for a reason. We may not always like the purpose behind God allowing something to happen, but there is always a reason. I’m also (gulp) old enough now to know that we may not EVER completely understand why something happened this side of Heaven. I have ALWAYS felt like that the acquired disabilities I have were allowed so that I could help others… or at least try to do so. I blow it. I blow it BIG. However, I think those of us that have lived the life a few years, owe it to the newbies in our lives, to lovingly coach, encourage, cheerlead, advise, and HUG often.

You are going to have newbies in YOUR life. Unless you are isolating yourself, you will have folks new to whatever “ails ya”. People will look to you for understanding and advice. You will be able to empathize much better than their doctor, their families, and their co-workers. Of all people – YOU get it.

Are you looking for a way to invest your life in someone with similar challenges? There are opportunities everywhere. You simply need to know where to look. Urban areas often have face-to-face support groups for various illnesses and disabilities. There are numerous online support networks, discussion forums, and peer supports. Many doctor’s offices and rehabilitation specialists have contacts to support personnel. Invest yourself in the life of a newbie. Remind yourself while investing how difficult those first years were! It shouldn’t surprise you to discover, sometimes by accident, the student becomes the teacher. Always, always be teachable.

Denise Portis

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

Published on April 30, 2015 by hearingelmo4 Comments

I’m a reader. Perhaps it has something to do with having a mother who was an English teacher. Maybe it is because both my parents are readers. All I know, is that I can’t remember not having books. I lived in a rural, farming community and as it was before the “age of the Internet”, much of what we did in our free time was reading. Thanks to my mom, I have read all the “great classics”. I also grew up reading series such as “Trixie Belden”, “The Bobbsey Twins”, “Nancy Drew”, “Hardy Boys”, “Sugar-Creek Gang”, “Agatha Christie”, and “Little House on the Prairie”. I remember being SO BORED one summer that I started reading my dad’s favorite series, “Louis L’Amour” and discovered they were actually OK too!

I always felt a little melancholy when coming to the end of a good book. If it was a series, I fretfully waited for the sequel to come out. It was especially hard when the author ended a book with a “cliff-hanger”. I think that is when I started biting my nails.

I’ve had an emotional roller-coaster kind of 2015. I have been slowly easing my service dog, Chloe, into part-time work. I have already started training for a successor dog at Fidos For Freedom, Inc. In the past week, Chloe has gone from part-time working dog to “when hound dog feels like it”. I always ask her if she wants to “get dressed” and more often than not she flops her tail at me and gives me a sweet hound-dog look. “See you later, mom! I’ll be here when you get back!”

Her vest is more often hanging on its hook, than it is being worn by faithful service dog. It has been a harder transition on me than it has been on her, and frankly? That’s the way I want it.

People notice that Chloe isn’t with me now. I suppose when you are thought of as a team, when the “cute red head” is missing, people notice. I’ve answered these questions dozens of times:

“You get to keep her, don’t you?”

“What will she do all day?”

“How will a new partner and Chloe get along?”

At first, it made me really sad to see her vest hanging on it’s hook as I walked out the door. I had an overwhelming feeling of finality. I know I’m making the right decision, but for awhile I felt like I was facing the end of a book–“The End“.

However, I realized that just like in OUR lives, finishing one chapter in life doesn’t mean the book is over. We plan to ease Chloe into therapy dog work if it is something both my husband and I can work into our schedules. If she doesn’t transition that direction, she will continue to be a beloved furry member of our family.

When the Life You Had Is Over…

One of the most disconcerting things about acquired disabilities or invisible, chronic illnesses, is that at some point you may not be able to do everything that you once were able to do. I’ve heard some people say, “Don’t ever say you CAN’T. Just find a new way of doing it!” But friends? That isn’t always realistic.

Take roller-skating for example. I love to roller-skate. I was actually pretty good at it, too. I could skate backwards, do a single axle, speed race, limbo on skates, and much more. Post balance/vestibular disorder, I can no longer skate. Sure, I could probably find various devices to prop myself up, or skate with a walker on wheels. But, I won’t be skating like I was. This doesn’t mean that I stop doing ALL extra-curricular activities. There ARE some things I can still do and do so safely. I simply started a new chapter in my book, “This is My Life“.

Some people find that after acquired disability or diagnosis, they can no longer work. Their “new normal” includes chronic pain, debilitating fatigue, or other symptoms that make it impossible for them to work “9 to 5”. However, they may find they there are some things they can do to continue earning a paycheck. There are a variety of things one can do to earn money while working at home.

Some people become volunteers and do a number of things that yield personal satisfaction and allow them to “give back”; however, the activities are not dependent on a set schedule. I know some people who no longer work due to a diagnosis, and likely do TOO MUCH as volunteers. There are so many opportunities! There are so many ways people of various abilities can do to benefit others.

If your life took an unexpected turn after a diagnosis or acquired disability, your book isn’t finished. You are just starting a new chapter.

BUT… YOU DON’T UNDERSTAND. Everything in my life has changed! I cannot successfully reach goals I made a long time ago before this diagnosis. My friends have changed. My relationship status has changed. My book really is approaching “The End”.

Perhaps your life really did experience a 180 change in direction. Some of my favorite books are part of a SERIES. The book may have ended, but there is a sequel. Set new goals. Make new friends. Do new things. I have found that some of the most rewarding experiences I have had were the direct result of my embracing my own “new normal”. I stopped trying to be the Denise I was before hearing loss and Meniere’s disease. The people I have met, the job that I have, and the organizations in which I am involved would have never been a part of my life if I hadn’t been forced to start a new chapter, or even a new book in a part of a series.

Hanging your vest up? Have major changes happened in your life? Your story isn’t finished. The chapter may be done. The book may even be finished. Your story is NOT complete.

Writer’s block? Network with others who have similar diagnosis as you do. See what they do to volunteer, serve, or even jobs and careers they may have. It’s never too late to go back to school! Many older adults sit in my classrooms taking classes to earn a degree and prepare them for something new. Gone are the days where all my students were 18 and 19 years old.

From an editorial review of “The Story of My Life” by Helen Keller: “Many of her later works were largely autobiographical, but there was always an emphasis on the inherent power of the individual to journey through life with hope. The Story of My Life is the first chapter in such a journey.”

If your life has significantly changed, it is simply the end of a chapter. Your story – your journey continues.

Denise Portis

How Can I Redefine Me?

Published on March 25, 2015March 25, 2015 by hearingelmo8 Comments

I stopped looking at myself as “disabled” a long time ago. I am, however, quite comfortable with being a person with disabilities. A friend, fellow-client at Fidos For Freedom, Inc., and blogger, was the first person I ever heard use the words, “differently abled”.

I have to tell you that sometimes I’m really feeling my disabilities. It can make me discouraged and frustrated. So many of us who live with disabilities or chronic illnesses often gripe, “I’d like just ONE DAY of feeling normal”.

I’ve become very comfortable with being a “hearing again”, cochlear implant recipient and “late-deafened” (without my technology). I’ve even grown accustomed to having a vestibular disorder (Meniere’s disease). I use a cane, have a service dog, and bedazzle my cochlear implant with some amount of pride and transparency.

One thing I’m not OK with is concussions. I’ve had a lot. I was even told I had “post-concussive syndrome” after a moderate concussion in 2013. “You know… like football players have.” But…

I don’t play football.

My neurologist had me do ten weeks of vestibular rehab. This was actually a fantastic experience and I learned all kinds of tricks, most importantly how to fall safely – cuz I’m going to fall. Sure, I learned all the great things to minimize the possibility of falling, but I will take some tumbles. So I learned how to unlock my knees and SIT (albeit without any grace) to avoid falls. In spite of this, stuff just happens. And you know what? I get mad.

March 8

Take March 8th for example. There was some ice and lingering snow everywhere. I prepared to walk – which means I had my no-slip boots on, my tripod cane, and service dog (who is off vest but heels like the pro she is). I bundled up and made sure my charged cell phone is in a buttoned down pocket. I don’t use my cell phone while walking. No ear buds or attachments either – No listening to music. I pay attention when I walk. (Well, I also talk to my dog but that was the topic of another post).

So when I crossed a street and fell backwards on the ice I actually felt MAD on the way down. I had taken all these precautions! The back of my head actually BOUNCED on the road. Right before I blacked out I thought…

THIS SUCKS.

I wasn’t out very long (I rarely am). I suffered with a headache for 4 days and made an appointment with my neurologist. (Follow up in May)

I remember thinking after texting my husband and making my way the rest of the way home, that I do not like being this person. I don’t like being the fall guy (get it?). By the time I walked the 2 blocks towards home, Terry met me and I sat on the porch for a good cry. After eliminating some of that tension (and freaking my husband out), I sat there to think (and yes, hold ice on my head). I kept thinking, “This isn’t who I am. I am not the walking, talking concussion waiting to happen. I have GOT to get a handle on this.” I needed to redefine myself. I’m NOT a fall guy. I’m a very careful person who sometimes sits quickly. I sit when I’m lucky… and when I’m not that’s OK. I have plan for that, too. I’m thinking a hockey helmet when the roads and walks are bad. Imagine how I can bedazzle THAT.

Your Thoughts Matter

Two hours before my fall, the pastor of my church (Weem’s Creek) spoke about courageous faith. Do you know that people with disabilities and chronic illness are some of the most courageous people I know? Here are some of his main points. If you aren’t a person of faith, read on anyway. This can easily pertain to anyone. If you are a person of faith you may be like me and think, “Well why have I never seen this before?”

1. To live a courageous faith, we must cultivate a habit of thinking thoughts that are from God. Instead of focusing on not thinking wrong thoughts, we need to focus on thinking right thoughts.

2. We can’t always control the thoughts we have, but we can control the thoughts we hold. We need to learn to hold the thoughts that are true, noble and excellent… those from God.

3. Meditate on God’s Word, not on our misery.

I think ATTITUDE is the real disability. If you can change your attitude, you will never feel disabled. Change your attitude – and that new attitude will CHANGE YOU.

I think of it as redefining me – redefining what having a disability means. My focus is on what I can do. I pour energy into discovering how to do things that I want to do – perhaps differently (using canine, technology, or assistance). This keeps our disabilities from defining US.

Be careful to acknowledge that everyone has a personal “definition”. Just because you may have a hearing loss too, doesn’t mean we define who we are the same. Being in control of our own definition (even if we need a necessary “redefine”), also helps others see us how we see ourselves.

It may take some work. I have a colleague at work who constantly tries to “help”. I finally told her one day, “watch how I do things WITHOUT your assistance”. That shut her up, made her watch… and don’t you know she learned so much? She told me later she just assumed I needed help. Having a disability does not mean you are “not able”. Most of us find very unique ways to be VERY abled.

Are you at a point in your life where you need a little redefining? Perhaps you have believed some of the “hype” about what you cannot do because of your diagnosis. Redefine yourself and hopefully change both your attitude and how others see you.

L. Denise Portis

Change and Control

Published on February 22, 2015February 22, 2015 by hearingelmo2 Comments

I’m not a big fan of change. So when faced with a year that is sure to be chock-full of change, I can feel a little overwhelmed. Ok. That’s actually not true.

I can feel freaking terrified, sick to my stomach, near panic attack, bite my nails to the quick, SOMEONE LET ME OFF THIS MERRY-GO-ROUND called life screaming, “abandon ship! abandon ship!”

I’m not even a spontaneous person. My family knows not to ever throw me a “surprise” party. To me ordinary is extraordinary. I just hate change. For me, it’s all about control. That’s right. I’m a bit of a control freak. There is an upside to being a control freak. I am very organized. I’m punctual and responsible. There are, however, all kinds of negative things that come from being a control freak and refusing to accept change too.

I had fairly significant OCD tendencies throughout my childhood and into my early 20’s. As a teen, I developed bulimia nervosa after facing my first big change moving away from home to go to college. Emotionally, I drove some people bananas with my need to control and drove some people AWAY as a young adult.

If you believe everything happens for a REASON and that there is a life lesson to be learned in everything that occurs, one could hypothesize that my developing acquired disabilities was the best (worst) thing to ever happen to me! My hearing loss began at the age of 25 and was a progressive loss. I wasn’t completely deaf until the age of 32 so I had a long time to adjust and cope. Meniere’s disease was diagnosed at the age of 35, though I suspect I had it from my early 20’s. It, too, became progressively worse over time; in part, because of multiple mild concussions. My health issues forced me to change. To remain independent (something I discovered was extremely important to me), I found that I had to work hard at adapting. I had to embrace change instead of shy away from it or pretend it wasn’t happening.

Living with acquired disabilities means something CHANGED. You have to adjust. You have to make choices about how you will cope and how you will treat the diagnosis or disorder. You have to determine how you enlist others to assist – if at all. What adaptive equipment or technologies are available to mitigate the disability? How are you going to mentally and emotionally adjust? (For acquired disability or illness never occurs without having an impact in other areas of WHO you are…)

At the age of 48, I have lived more of my life adjusting to my new limitations than I did to living in a relatively “worry free” life. Here are some things about change that I have learned.

1. Take notice of changes.

This means you have to really get to know yourself. Habitually take your own “pulse” and see how you are doing. Make note of the readings on your “tension thermometer”. How are you sleeping? How are your relationships?

You don’t want change to take you by surprise. One must deliberately brace and expect changes. Be on the look out. Identify health (or mental health) changes.

2. Accept change with a positive attitude.

You cannot stop change, nor control it, but you can change how you react to change. We’ve all see the serenity prayer before. For those of us with acquired disability or illness, however, following these words of wisdom can be very freeing.

God … grant me the serenity
to accept the things I cannot change,
courage to change the things I can,
and wisdom to know the difference.

3. Learn to relax.

Even up-tight control freaks can learn to relax. One of the most important things I learned in vestibular rehab was how to relax when falling. We naturally stiffen up and become tense when we are “on our way down”. I learned to relax my leg muscles so that I immediately dropped to my caboose instead of falling like a tree cut off at the base.

I have also learned to take “me time” every single day and refuse to feel guilty for taking the time to do so. It may be something as simple as looking through a friend’s collection of photographs. It may mean some personal journal time. I might choose to read a good book – that has nothing to do with psychology or my dissertation. I may burn my favorite candle while cuddling with my assistance dog on the floor in the dark.

4. Ask for help.

It took me so long to learn that it didn’t make me weak to ask for help. I chose to be partnered with an assistance dog so that I didn’t have to ask for as MUCH help from other people. In spite of this life-changing decision, I still occasionally have to ask for help. When I do, I don’t apologize first.

“I’m sorry to have to ask you this, but could you help me? I’m so sorry. I hate asking for help, but do need your assistance. I’m sorry I’m bothering you!”

Please don’t ask for help like this. It’s rather pathetic, isn’t it? Yet, we tend to react to even THINKING about help as if asking is something to apologize for when doing the asking. Honestly, most people are glad to help.

If you really have problems asking for assistance, at least learn to ask others “how can I do this task independently?” Brain storm with OTHERS what you can do to remain independent. I have run completely out of ideas about how to do something safely, only to discover through someone ELSE a “brilliant” work-around.

5. You are changing, but you are still You.

Frankly, all of us change as we grow older. The changes may occur physically, emotionally, or mentally. Yes, change may seem more difficult when it occurs as the result of acquired disability or chronic illness, but ya know something? You are actually stronger for it. You had to adjust and perhaps been forced to make changes. The core of who you are does not change. We tend to fear that being “disabled” becomes our new identity. No one signs up for that, and it is never chosen. So when it happens… know that who you are hasn’t changed. If anything you become a better version of you.

One of my favorite quotes about change was written by John Eliot. “As soon as anyone starts telling you to be “realistic,” cross that person off your invitation list.” We can’t avoid negative people. They will cross our path. They will see our being differently-abled as license to give-up and quit. They’ll tell us to be realistic and stop aspiring for “more”. You may not be able to avoid these ~~morons~~ people, but you don’t have to hang out with them on purpose.

So I gear up for a big year of changes for me. I’ll be finishing up my coursework in school, retiring my assistance dog, and face some possible surgery. Those all seem so darn negative, but there’s always two sides to every “coin”. My dissertation awaits – and geesh, but do I love to write or don’t I? I’m retiring Chloe, but I have my close-knit Fidos For Freedom family and friends supporting me with a successor dog eventually entering my life. I hate surgery, but really look forward to getting to the bottom of some of the neurological issues I’ve been having. I can identify and sense these impending changes with a weird sort of relief. I have discovered that change can be good. Relinquishing control can be freeing.

Denise Portis

Cognoscente, Aficionado, and Cutting the Crap

Published on January 7, 2015 by hearingelmo1 Comment

The bunny is currently resting... — The bunny is currently resting…

It may or may not be news to you that I am in grad school. Part of the program I am in requires academic residencies. I just completed another one on Dec. 27-30th and there are few things I despise more.

It isn’t because I don’t enjoy the workshops and expert speakers. I do.

It isn’t because I hate the schedule. It’s hard, but I can do it.

It isn’t because I am not learning anything. I am.

Academic residencies are very tough for me because a lot of blow-hards attend and I consider myself lucky to exit the residencies having met one or two people who ARE NOT.

I’ll admit it. I am a bit of a loner. It isn’t that I don’t LIKE people. I do. As a matter of fact, I love people. However, if I have 30 minutes to eat lunch, I’m not going to go to a crowded restaurant, nor stand in line for a turkey sandwich that costs $11.00 plus tax. I’m going to pack my own lunch, sit in a nearly deserted room at the next location of a required workshop, and work on my homework while I regenerate. (Did I explain I was part Borg?)

On Sunday, a longer residency day for me, I was holed up in a large room eating my lunch and tossing Chloe’s pink bunny while completing an essay on boolean phrases (aren’t I talented?) Unfortunately, by day two, other people are also figuring out these empty workshop rooms are great places to eat lunch. Some of these people are talkers. *grimace*

I suppose an “off vest” service dog playing with her toy, wagging her tail like crazy, and huffing quietly to me so I’ll throw it again, invites spectators and conversationalists. Sometimes I really want to PLAY DEAF. I cannot, however, for I feel a certain responsibility to be a good testimony and example of a “hearing again” person. So darn it. I am pulled into conversations.

“Oh this is great that you allow your service dog an opportunity to unwind. That is a great stress diversion instrument!” said a very well-meaning (I’m sure) observer.

I know I looked at her funny. I’m pretty sure an eyebrow went up. Unfortunately, funny looks and raised eyebrows invite further conversation.

“Will your dissertation be about the place of service animals in the lives of persons with disabilities since you are a cognoscente in this area? I know many of us who are scholar-practitioners are aficionados in our area of interest”, said the now expectant observer.

I may love people, but sometimes? Sometimes I’m not very good with people.

I snorted.

That’s right. It’s a good thing my sinus were clear because lord knows what would have flown out.

I pointed to Chloe who was currently rolling around “scenting” her pink bunny and said, “You know that is a slobbery toy? It’s not an INSTRUMENT. I am doing my dissertation on something I believe in and yes, know well because I live it. But let’s cut the crap on the big talk. It’s lunchtime and I’m relaxing so you don’t have to impress me. Heck. I hardly even know what you are saying!”

Are you as horrified as I was? I wanted to slap my hand over my mouth and then immediately apologize. What happened next had me exchanging emails and finding a new friend.

“Oh thank God. My partner tells me to cut the crap all the time. Don’t you hate feeling like you have to ‘play doctoral program’ when you are here? I mean we are all just trying to get done, doing our best to reach goals. Holy realist, Batman. Can I eat lunch with you tomorrow?”

(In case you are wondering if that is her quote, I can’t make this stuff up. I even emailed her later and asked to “quote her” in an upcoming post).

I howled with laughter. I mean, I had tears rolling out of the corners of my eyes. Chloe was a bit concerned but continued to take advantage of her off-vest playtime.

Stop Trying So Hard

In the years I have chosen to identify as a person who is “differently abled”, I have met two kinds of kin.

One group of folks I feel a certain amount of kinship with since they, too, live with a chronic condition, disability, or invisible illness, are commitment-aholics. They choose to be involved in everything – just to prove they can. (A friend wrote an excellent post about this – click here to read it). They work so hard at making sure they are independent, they smack the back of the helping hand reaching towards them.

They work so hard at proving themselves at work, they are over-committed to volunteer committees and focus groups. They strive so hard to show the world (and themselves) that they CAN, they do very little well. They bust their butts to impress us. The reality is they walk around with – erm… – busted butts.

My other “cousins” are people who refuse to participate in much of anything for fear of letting others down. Instead of learning what their own physical, emotional, and mental limitations are and living an abundant life within those boundaries, they isolate themselves and refuse to put themselves in a position that they may blow it. They get around making poor choices by choosing not to make any choices at all. Their souls are withering and they don’t even know it.

Use Your Talents and Skills. Just STAY REAL

We all have talents. These are gifts we are born with while a skill, on the other hand, is something we are good at because we’ve worked hard at being good at it. We can even take natural born talents, work hard, become skilled, and use these abilities in our personal and professional lives.

It is very important to use what is available (talents) and work hard (become skilled) so that each of us can make a difference (with our abilities). Yet, too many times we get side-tracked by making sure folks recognize what we are good at doing. Cut the crap. Be real, but be nice. Be who you are – which means at times you are wearing a cape, and other times you are asking for assistance. Share who you are (why keep abilities to yourself?) but be a humble expert in who you are. Don’t be an over-achiever. Don’t be an under-achiever. Just be real!

Denise Portis

Accepting Help ≠ Dependence

Published on January 1, 2015 by hearingelmo3 Comments

This service dog took full advantage of a holiday vacation in Florida.

My Christmas holiday was a blur. They can be that way sometimes. I flew to Florida with my husband to be with my parents for Christmas, but I had a TON of homework. Chloe, faithful service dog, at least got the opportunity to really chill out. When I got home, I headed to an academic residency for 4 days.

Even being super busy, I still learned a few things. I learned some things about myself, about other people, and about acceptance. I began to lose my hearing and balance at the age of 25. Now that I am 48-years-old, you would think I have learned all that one can learn after living with hearing loss and a vestibular disorder for 2+ decades!

Ungracious Acceptance

Acceptance of my life as it is, seems to be an ever-evolving concept. Sometimes I take things in stride. Progression of the toll my diagnoses have, a new “timber – down goes Denise – fall”, having to switch out cochlear implant batteries mid-conversation, taking the elevator instead of escalator or stairs, and having to wait for an empty handicap stall in public bathrooms so that my dog and I BOTH fit, is really second nature for me now.

But sometimes? Sometimes I am WITCHY about it. (Feel free to put another first letter there as it probably fits from time to time). Maybe it’s hormones? Perhaps it is a lack of sleep? It may be I just had an unpleasant encounter with someone who was condescending towards me when my being differently-abled became apparent. For whatever reason, at times when someone asks if they can assist I must look…

S c A r Y

I assume this because their eyes get big, they throw up their hands in an “I surrender!” pose, and they take two full steps back. I don’t MEAN to put off that vibe, but I know there are times I must do so. I work SO hard at being independent. I love the color purple, but that isn’t why I carry a bright purple cane. I love dogs, but that isn’t why my 24/7 partner is a service dog from Fidos For Freedom, Inc. I love dangly earrings, but I don’t wear “bling-bling” on my cochlear implant because I’m a drama queen.

(OK, OKAY! I’m a drama queen, but in THIS instance it is not why I have bling-bling on my cochlear implant! Yeesh!)

I do all of these things to be independent. I yearn for independence and inner strength. I forget sometimes that the latter is the result of a “thinker” and “feeler” in sync in the body of a person who is differently-abled. Part of it, I actually HAVE caught the exasperated looks on faces when I do ask for help with something. It can be fleeting, but it’s there. I’m deaf, not blind. (We can debate if differently-abled people are far too sensitive about this and see things that are not there later).

Yeah, so? Let’s Go!

While in Florida, amidst homework and research, I did insist on going out to eat every day. I did a little bit of shopping at a place we don’t have in Maryland. Bealls was a very cool place! We also do not have a Belk. So yup. I did a little shopping.

When we went out on the town to do these things, we had to borrow my parent’s car. It is a big ol’ SUV and Chloe had to sit in the back compartment. It gave her plenty of room to stretch out and seemed like a great option for four people plus one service dog. The problem was that my parent’s SUV sits very high. Chloe is 10+ years old. She is retiring in May of 2015 (unless she lets me know it needs to be before then). The first couple of times I gave the “Chloe… OUT” command, she jumped from the back, only to have her front legs collapse and do a hound face plant in the parking lot. The first time it happened, I gasped. The second time it happened, I’m pretty sure I yelled. OK, yeah. I don’t yell. I have a hearing loss. I SCREECH. Ask me to demonstrate sometime, but bring the ear plugs.

Because my husband, Terry, didn’t want to see what a third time would trigger, he suggested, “Let me lift her out of the back and set her on the ground!”

I said, “Ok, but do it in a way you don’t embarrass her. Make it quick and don’t make a big deal about it.”

Perhaps I should explain that I disagree with those who say that dogs don’t exhibit or feel some of the same things humans do. I have seen dogs excited. I have seen them pissed. I have seen dogs pouting (do I have some stories about my grand-dog, Pegasus, or what?). I have seen dogs embarrassed. Point & laugh and dogs will duck their heads in shame/embarrassment.

Chloe’s weight ranges from 59-62 pounds. Needless to say, we don’t carry her around. I wasn’t sure how she would respond to being lifted from the back and set on all fours on the pavement; nor, did I know how she would respond to being lifted up into the back of the SUV.

The first time we opted to lift the service hound out, I held my breath. Terry reached into the back, hooked his arms under her and locked his hands over her spine, and carefully picked her up and set her on all fours.

PUH.

I exhaled rather noisily, and watched as she wagged her tail and moved to heel position, looking up at me as if, “Yeah, so? Let’s go!”

I was stunned. I had a treat in my hand to cajole her back into a good mood. Instead I went into the store as if nothing out of the ordinary had happened. I watched Chloe from the corner of my eye. (Ummm… explain to me how oval shaped things like eyeballs have corners?) I digress…

I fully expected Chloe to act, I don’t know… WEIRD for awhile. However, she took it all in stride. She needed the help, being rather fond of her own face, and didn’t even miss a step in going on about her job after accepting assistance.

Do you know where I’m going with this?

WHY???????

Why do we act so weird when we need help? Maybe it is just a little help.

… like picking up the dropped blue tooth device I spotted in a hallway that I could not bend to get, and didn’t want Chloe to destroy by enthusiastic fetching.

Maybe it was a lot of help.

… like helping me dislodge my wedged rolling briefcase from the elevator door as it was stuck solid. I struggled with my butt holding the door, cane braced, and dog freaking out as I tugged on a very STUCK wheel.

Sometimes? Sometimes, we just need a little help to continue doing our thing. We need a helping hand. We aren’t signing an I.O.U. If we truly want the world to be a kinder place, then why are we prickly when someone asks if they can help? By accepting help we are not sticking a “I’m WEAK” note on our forehead. We can accept help and still be independent. We aren’t waving all rights to an independent life should we accept help once in awhile. For most people, helping another is done so with no strings attached. They don’t even think twice about it. They may never think about it again, while WE sit there perseverating on it and making a huge deal about it. Why can’t we just say, “thank you!” and our attitude be, “Yeah, so? Let’s go!”

PRIDE.

Pride can be a good thing. There are good types of pride, and crippling types of pride. Learn the difference. Learn to accept help. It doesn’t mean you are signing on to a life of dependence. It means that you are SMART. You know your limitations and are making wise choices to do what is best for YOU. Face plants on the pavement aren’t fun. All you will have for that type of stubbornness is a skinned chin. (Ask Chloe…)

Denise Portis

As You Wish…

Published on December 12, 2014 by hearingelmo1 Comment

I’m a HUGE “Princess Bride” fan. Perhaps I’m even classified as being an “annoying Princess Bride fan“. I know so many of the lines by heart and they tend to slip out in both opportune and inopportune moments. If you’ve never seen the movie – for shame. Seriously, it is one of those ridiculous movies that everyone needs to see at least once. You will be talking about it for the rest of your life. I promise.

One of the best known (and faithfully repeated) lines of the movie is that of our hero, Westley. He says, “As you wish…” to his beloved, Buttercup, (hey… I can’t make this up) to genteelly and sweetly acquiescence to her every request. Yup. This makes him a bit of a sap. But he does become the “Dread Pirate Roberts” later and reveals to Buttercup, that he is still her “Westley” in this dramatic (and hysterical scene):

In the end, we learn that “trewww lub” (true love) is worth fighting for and that we should be careful about agreeing for the sake of keeping the peace. Well… at least that is ONE “moral of the story” I got out of this favorite! 🙂

When People with Disabilities Keep the Peace

We’ve all heard how important it is to have the right attitude when you are advocating for your own rights or needs, or on behalf of another. “You can catch more flies with honey than vinegar“.

Trust me.

I know how hard this can be at times. Having had it drilled into my head, I am fully aware that how the public interacts with ME, may influence how they interact with another who has hearing loss, balance disorders, or a service dog in the future. That “burden” keeps my mouth shut when I strive to bite my tongue. But ya know something?

Sometimes when my attitude says, “As you wish…“, I’m really only hurting myself AND others.

About a month ago, I was walking with a colleague to a meeting in another building. We had to walk through the Student Union bldg., and then go to the second floor. We were talking as we walked. My colleague turned to go up a 20-step flight of stairs… still talking.

I hesitated and said, “the elevator is up the hallway…” and my friend interrupted and said, “Come on! We need the exercise!” She continued up the stairs and was still talking.

I put Chloe is a close heel, looped my cane over my wrist, grabbed the handrail and took one careful step at a time, all the while with a death grip on Chloe’s handle attached to her vest. By silently agreeing, I practically shouted, “As you wish…”

I can’t talk and climb stairs, so I quietly made my way up the stairs one careful step at a time. When I got to the top of the stairs, I exhaled heavily (for it seems I was holding my breath), and looked up with a triumphant grin. My smile immediately faded because my friend stood there with big tears in her eyes. My brain started processing sound again (for it had been wholly fixed on arriving ALIVE at the top of the stairs), and I belatedly picked up some of her words…

“For heaven’s sake, why didn’t you remind me you can’t do stairs? All you had to do was remind me!”

I was struck dumb (silent – not mentally – grin) for a second and said, “Well I was just keeping the peace!”

She said, “You keep the peace by reminding me what your needs are. That’s not keeping the peace, that’s being a martyr. Just tell me!”

I apologized (profusely).

We can remind people what we can, and cannot do safely without sounding as if we are complaining. We need to learn to be pro-active in a positive, upbeat way. Don’t apologize for who you are or for what your needs are. However, be careful not to agree to something foolhardy like climbing a set of stairs when there is an elevator right up the hallway. My attitude of “As you wish…” could have set the scene for a disaster that day. Thankfully, it did not.

“Shove it up your… “

There are times when people with disabilities need to actually be a little more firm when they are educating or advocating. I don’t always do this well. I try to even interrupt my rising temper by reminding myself that I represent “Fidos For Freedom, Inc.“, and “Anne Arundel County’s Commission on Disabilities“. I chant in my head, “Bite your tongue, bite your tongue”. It doesn’t always work. The phrase, “shove it up your… NOSE” (scared ya a minute, didn’t I – wink), reverberates in my head.

Monday, I stopped at the U.S. Post Office to purchase some stamps for Christmas cards. (Yes, I’m aware I’m late to this “party”). I saw a man leaning against the building, smoking. I sort of register this in order to use the door farthest from him because I cannot stand the smell of cigarette smoke. As I exited my car, I reached in and got my cane, closed the door… opened the back door to unload Chloe, adjusted her vest and leash, closed HER door and then turned to walk into the building.

It seems we had an audience.

The man leaning against the building said, “What a beautiful guide dog! My mother is almost blind now. Where did you get your dog?”

I was so startled I stutter-stepped and screeched to a stop. I know my mouth was hanging open. I looked over my shoulder at my car. I pointedly looked at the car keys in my hands. I looked at Chloe and her visible vest that said “Service Dog” with tags that said, “Hearing Dog. Do not Distract”.

Then I made a mistake. I blurted. Nothing ever goes well when I blurt.

“Is that nicotine or weed you are smoking?”

His eyes got big. He stomped out his cigarette and stomped into the building. Then this little convo/prayer went through my head:

“Ok God. I blew that. If I find that man in the building please give me the opportunity to apologize and make that right. But… please don’t let me find him because I swear he’s stupid and higher than a kite!”

Yeah. It seems I can’t pray with the right attitude right after a ridiculous encounter either.

But ya know something? There ARE times when it is ok to put someone in their place. Especially if someone repeatedly makes the same comment or observation about you or people with disabilities. You can be firm and be kind.

I didn’t tell the “smoker”, “As you wish…” with an attitude that what he said made perfect sense. However, I could have reminded him that a person with vision loss would not have just pulled into the parking lot and got out of the vehicle. I could have educated him quickly and politely that there are numerous types of service dogs and canes. Instead, I was a smart aleck. Justified? Perhaps. However, in the end, I didn’t promote any “cause” or advocate in a positive way.

So Where is the HAPPY MEDIUM?

If you have lived with invisible illness or disability long enough, you DO eventually learn how to balance all of this. You learn how to remind those who have known you long enough that they may have forgotten some of your limitations. You speak up for yourself. You also learn when to firmly, but kindly, put someone in their place. There is a time for that as well.

You are going to make mistakes. Your attitude will scream, “As you wish…” at times when you simply need to say, “I can’t and won’t attempt that“. You are also going to learn to not label someone a pothead, and instead take 60 seconds to educated them in a positive way. It’s a balance we all eventually learn.

If you haven’t seen, “Princess Bride” – you are missing a treat. 🙂 I hope all of us who are differently-abled, learn to balance how to advocate and educate others.

Denise Portis

But, Butt, Buttocks and Butte

Published on November 1, 2014November 1, 2014 by hearingelmo1 Comment

Isn’t the English language crazy sometimes? Did you know that it is actually one of the hardest languages to learn? (Oxford Royal Academy, 2014). Since most who are reading this likely know and use English as their first language, that may come as a surprise to you. We bellyache about how difficult it is to learn Spanish, French, German, etc., because most of us were born into English speaking households. Yet, many scholars argue that English is quite difficult to learn.

Take homophones for example. “Butt” can mean to “be adjacent to” or it can be your hiney, your buttocks, your butt, your behind, your gluteus maximus, your CABOOSE. Talk about confusing! You have to look at words in context to figure out the meaning. Then… we have acceptable shortened versions of words. For example BUTT is an acceptable, widely used word in the place of BUTTOCKS. However, BUT is not short for BUTocks. As a matter of fact, that isn’t a word! Add an “e” to BUTT and it even changes the pronunciation of the word. Now it is BUTTE (pronounced \ˈbyüt\). However, you don’t ever add an “e” to BUT. The word BUTE is not a word (unless you mean the derivative of the medical word phenylbutazone). You just ran screaming from the room, didn’t you?

Get it Right

But ya know something? Sometimes we use words and think we know what they mean when we do not. It is my opinion, that those of us who live with disability, chronic illness, or invisible diagnosis, should know our own SELF very well. I have Meniere’s disease and am late-deafened. I sought to learn everything I could about both conditions. When I later developed extremity peripheral neuropathy, I learned all I could about this condition as well. However…

I cannot expect everyone I meet to be experts on what is wrong with ME.

Aren’t we guilty of that sometimes? Heck, even with our loved ones we really can expect too much from them. So we have to be careful about our expectations. If I tell a colleague that I’m late-deafened and they respond with, “Oh… OH! I know some sign language!” (and they start to slowly and painfully finger spell their name)… don’t have a COW. (Besides… that is just MESSY!) Not everyone knows that the vast majority of people with hearing loss are late-deafened and do not use ASL. Try gently educating instead.

I told a student who was walking down the hallway and then into an elevator with me, all the things Chloe does for me. She asked about my condition, so I tried to explain Meniere’s disease in layman’s terms. When we exited the elevator, she helpfully took my elbow, and said, “Here… let me help you“. I stopped (after making sure hound dog and my bags were on the right side of the closing elevator door) and dug in my heels. I looked at her in astonishment. I had just walked down a hallway with her, wheeling my bags behind me and juggling leash of faithful service dog not five minutes before! After helpfully disclosing and explaining Meniere’s disease now I’m incapable of walking on my own? Because I knew she meant well, I didn’t scream, spit, or throw a hissy fit (*pats self on back for rhyming so nicely right there*).

I said, “I can walk on my own. Chloe helps me“. She stared and then said, “But… But you are WOBBLING“.

I cheerfully retorted, “Yup. Welcome to my life!” and walked off.

Everyone’s an Expert!

Another problem you may encounter if you have a long-term or permanent diagnosis, is that helpful folks sometimes act “the expert”. I’ve tried to explain that I am late-deafened and hear again with a cochlear implant, only to be interrupted by the person exclaiming, “Oh yeah. I have to turn the volume up now that I’m in my 40’s!” (I’m like… whaaaaaa…?)

I told an employee of my favorite grocery store a little bit about Meniere’s disease. Chloe and I always meet him stocking bread in the same aisle almost every week. After hearing my brief explanation of Meniere’s, he said, “Oh yeah, I walk into things after I’ve been drinking even just one beer!” I stood there trying to determine if my brain heard what I thought it heard. Ever been taken by surprise before and your mouth just blurted out what you were thinking before you had a chance to filter it through your state-of-the-art “Maturity Meter”?

I said, “That’s the dumbest thing I have ever heard“. He stared and then stomped off. We only see the tail end of him leaving the bread aisle when we go to the store now.

All my buddies who are late-deafened joke about this response after telling someone that they are late-deafened: “Oh yeah, I have an aunt who is death“.

Rest in peace, auntie.

Cut ‘EM Some Slack

Just as our English language can be confusing, so can your explanations of who you are to others. Even invisible conditions such as mental illness are so misunderstood. Many folks who try to explain a mental illness diagnosis are then treated like:

1. Fragile porcelain that may break under pressure

2. They are suddenly contagious

3. They are more dangerous than Freddy Krueger

All we can do, is do our BEST. In the end, we need to work hard at trying to understand that others – even those who may care about us the most – may not completely understand your new normal. That’s OK. A healthy acceptance and ability to BE GOOD TO OURSELVES is not dependent on the understanding of others.

Denise Portis

Oxford Royale Academy (2014). Why is English so hard to learn? Retrieved on October 27, 2014, from http://www.oxford-royale.co.uk/articles/learning-english-hard.html

Turn On Date

Published on August 4, 2014October 25, 2014 by hearingelmo3 Comments

One of my favorite discussions to have with people who have chronic illness, invisible or visible disabilities, or living a “new normal”, is sharing stories of how their adopted vernacular throws others they communicate with for a loop. We probably all have stories to tell. If your life is different because of a surgery, technology, or diagnosis, you may be using words and phrases that confuse and irritate folks who don’t live a similar life. I try to be careful and take a quick look around at WHO I’m talking to when having a conversation, but that is after really screwing up a lot in the early years. Here are some of my more memorable screw ups:

Your Turn On Date

Johns Hopkins sends folks my way when they are considering a cochlear implant, especially if they have Meniere’s disease as well. I have learned that when talking to someone new to the idea of cochlear implants, you cannot talk to them like someone who has already had the surgery. Cochlear implant peeps throw around terms that make perfect sense to US, but not so much to others. Case in point: I met with a lady with Meniere’s at a library who was investigating cochlear implants. At some point in the conversation I said, “Now the date you are turned on, you need to have a designated driver if possible. Everything will be so strange and you may not be able to drive safely if you don’t have someone to drive for you after you are turned on“.

Her eyes got big and she paled. She stuttered out, “Wha…wha… WHAT!?!?” I’m savvy enough to figure out by the way she answered that she didn’t understand my terminology. I thought I’d clear it up but succeeded in only making it worse…

“Yes, when you go to the audiologist and they turn you on…” I stopped. Seeing her dropped jaw will silence me. I backed up and tried again, using “activation date” instead of “turn on date”. Do you know something? Unlike others who meet with me, she never followed up with post-surgery emails or meetings! <BIG GRIN>

I Lost My Ears

I had only been activated 8 months when I lost my ears. Now for CI folks, they get that when we talk about our “ears” we are talking about the external technology… not about our “listening appendages”. I was in a super Walmart, looking for a very specific jar of dill pickles (because yes… I’m that picky), when my cochlear implant – which has a magnetic coil to keep it on my head – flew off my ear and into the pickles.

Had I stayed still and searched the immediate jars I would have found it right off. As it was, being new to “hearing again”, I immediately stood up and screeched because my world had suddenly and completely gone SILENT. An older lady shopping amongst the same shelved pickles looked at me strange. I nervously picked up jars of pickles looking for my “ear”. The lady came closer and joked, “Are you pregnant?“. I turned to her with big tears in my eyes which made her come closer and immediately quit teasing me.

“Are you OK?” she asked kindly. I looked at her and wailed, “I lost my ear! I can’t find it!”

She looked at me bug-eyed and walked away. Quickly.

Thankfully I found my CI attached to the metal lid of some nearby olives. No wonder I couldn’t find it amongst the pickles.

I’m Not Turned On

When we lived in another part of Maryland, we use to have to drive a long way to go to church on Sunday. We actually went into another county to do so. Normally my family doesn’t listen to the car radio because they know that I’m totally incapable of tuning out the radio and hearing just the conversation. However, on longer trips, I often say, “I’m turning my ears off” so that they can listen to the radio and they know if they need me they only need to tap my shoulder. In truth, it is nice being able to sit in “total silence” from time to time. It is certainly conducive to “deep thinking”.

So one Sunday on our way to church, I gave the family heads up that I was going silent on purpose. I must have moved from “deep thinking” to day dreaming. We got to church, got our stuff out of the car, and Terry and I waved goodbye to the kids as we headed over to the building where we had small group Bible study. I’m still deaf at this point and I couldn’t tell ya if Terry was talking to me. I know my mind was somewhere else – that’s for sure! We went into the classroom and sat down at the big table. Some other couples were already there. One of the ladies leaned up so that she could see around Terry and said something. It was then I realized I still hadn’t turned my cochlear implant back on. “Oh! Wait, I’m not turned on!”

I reached up and punched the correct button and looked around at a bunch of stunned faces. Terry was actually embarrassed. (If you know Terry, you know he rarely gets flustered). A few who caught on a little late began to snicker. Me? Well I thought it was just HYSTERICAL. So I managed to get out in between laughs, “Oooops. I need to find a better way to say I don’t have my CI on“. Terry quickly said, “Yes Denise. Yes you do!“. It took a number of months for me to live that one down.

Remember Your Audience

Do you live with a chronic condition or acquired disability? Have you become an expert in navigating your “new normal”? Can you “talk shop” with the rest of your population?

It’s hard to remember that just because WE understand what we mean, others may not. We tend to use words and phrases that become a part of our vocabulary. Try to pay attention to your audience. A good advocate learns to do that. You may have to deliberately choose to use a different word or phrase if no one really connects with it but you. For example, I had to stop referring to my bright purple cane as “my third leg”. I’m fairly naive and had no idea the shocked looks were from folks who had heard that phrase in a completely different context.

In order to really educate and advocate, you need to use terminology that the general public will understand. You may think a word or phrase is very obvious, but others may not ever hear that word in conversation. I was trained at Fidos For Freedom, Inc., to know how to advocate for accessibility with my service dog. The trainers didn’t tell us, however, that not everyone in the general public knows what the ADA is! (Thankfully, they also equipped us with great little brochures and handouts with the law explained on them).

“Fibro fog” may only mean something to other folks with fibromyalgia. “CFS zombie” may only be a phrase others with chronic fatigue syndrome use. HoHearies can be figured out by most of the population, but is only self-identified by those who are hard of hearing. The general public may even make incorrect associations just because they don’t understand your chosen words. I had no idea anyone would ever think “tinnitus” was something caused by a cut from a dirty tin can.

You are a more effective advocate when you “consider your audience” and appropriately explain symptoms, treatment, and diagnosis. The goal is to educate after all. If you only succeed in confusing those around you, you haven’t really helped to educate.

What’s REALLY fun is when those closest to you start to confuse others as well. Terry often asks if I “have my ears on” now.

Denise Portis

False Coping Skills and Elephants

Published on July 21, 2014July 23, 2014 by hearingelmo1 Comment

Ever wake up just feeling completely whipped?

I feel like I’ve developed GREAT coping skills. After all, you either learn to cope or you’re “done”. So the options are pretty clear cut IMHO. Two coping skills I learned early on in adjusting to my “new normal” as a person who is “differently abled”, include:

1. Start each day new. Yesterday is gone. Tomorrow will come without my worrying about it now. Handle today and today only.

2. Stay busy. Staying busy helps to keep your mind off your troubles and focus on the here and now. It can be busy-ness towards important things, or even the mundane.

The second one I use a great deal, but I’ll be honest. It isn’t exactly a HEALTHY coping mechanism. I don’t do well with a lot of down time. A perfect day for me is getting up (safely – believe me, it can be hard when you have a balance disorder and go VERTICAL for the first time that day), taking my dog for a walk while planning my day, re-enter the house in high gear without stopping until bedtime.

Yeah. Not always healthy. The problem with staying BUSY in order to cope is that it is a false kind of coping. This type of coping skill isn’t actually a coping skill at all. It is called avoidance. And friends? I do this really well. Some of you do too. (You know who you are…)

Staying Busy to Avoid

Do you “do busy” really well? It may be time to stop to discover WHY you stay so busy. Do you strive to remain busy to avoid unpleasant thoughts, actions, environments, even people? Don’t confuse healthy boundaries with avoidance. One is – well… HEALTHY. The other? Not so much. As a matter of fact, avoidance can lead to a number of physical and emotional problems. Psychologists have recognized avoidance for what it is for decades now. Yes, in the right context it can be healthy. But it is easy to AVOID to the point of harm. Spira, Zvolensky, Eifer, and Feldner (2004) explain that being busy to avoid our problems is actually a predictor of panic disorders. You see? The problem with staying busy to avoid something is that eventually you really will run out of things to do. Worse? Your body physically screams, “ENOUGH ALREADY!” and shuts down.

I am finishing up the last of numerous classes in my doctoral work and have already begun the very long process of dissertation study. This work keeps me really busy and it is work I actually enjoy because psychology is what I “do”. I work part-time as an adjunct professor and this helps to keep me busy. I love my work, love my students, and love to teach. The problem with working as part-time faculty at a community college is that it is impossible to predict how many courses you will be teaching semester to semester. For example, I taught the first summer school section, but not the second. I used the extra time in the beginning to catch up on some of my own school work and to do some “Spring cleaning” that had been long delayed… seeing as how it is SUMMER. These past few days though I’ve found I have had some down time. *grimace*

Forced Mindfulness

When I am forced to the point of literally running out of things to do… even for just a day or so, I find it debilitating.

Whoosh.

(Hear that? That was the air being sucked out of my lungs when the elephant in the room finally sat. On. My. Chest.)

I don’t do “mindfulness” well. I’m learning though.

Brown and Ryan (2003) explain mindfulness as being AWARE and ATTENTIVE. Let me explain on a more personal level and maybe you can “see” yourself somewhere in this:

Avoidance:

My new normal of hearing with a cochlear implant and living with a balance disorder is not easy. I’ve adjusted. Only to have to re-adjust. That’s OK. I’m flexible. Most of the time.

I work at a job I love and navigate life safely with a service dog. Most of the time.

I am optimistic, cheerful, can poke fun at myself and enjoy busting my butt to help others. Most of the time.

I’m very busy and drop exhausted into bed each night and sleep well. Most of the time.

I have taken control of chronic depression and don’t let it control me. Most of the time.

I don’t feel sorry for myself. I like me. I recognize that I am doing well. Most of the time.

Truthfulness:

My new normal of hearing with a cochlear implant and living with a balance disorder is not easy. I’ve adjusted. Only to have to re-adjust. That’s OK. I’m flexible. Most of the time.

Some days having a CI and Meniere’s disease sucks. I don’t hear perfectly. I feel left out. I’m tired of falling. I’m tired of running into things. I hate long-sleeves and high collars since they only hide bruises. I’m tired of adjusting. I’m going to cry. I’m going to scream. I may swear.

I work at a job I love and navigate life safely with a service dog. Most of the time.

I love my job but it is really hard when the hallways are crowded. It can be overwhelming to have to rush from one side of campus to another. Crap. It’s raining? Really? *waves white flag*

I am optimistic, cheerful, can poke fun at myself and enjoy busting my butt to help others. Most of the time.

Sometimes I want to change my “… I’m fine, how are you?” to “I’m having a sucky day. And frankly? I don’t care how you are doing if you want to know the truth!!!!”. I’m going to have to ask for help. After all, Chloe cannot 1) retrieve a bag of dropped potatoes in the grocery store, 2) pick up that tiny paperclip without risk of swallowing it, 3) get the umbrella I dropped in a puddle without getting really muddy, 4) tell me EVERYTHING WILL BE OK.

I’m very busy and drop exhausted into bed each night and sleep well. Most of the time.

I can lay in bed and worry.

I have taken control of chronic depression and don’t let it control me. Most of the time.

It’s hard when I have to “own” the knowledge that I will always “deal” with depression.

I don’t feel sorry for myself. I like me. I recognize that I am doing well. Most of the time.

uh-huh. Ri -i -i -i -i -i…ght.

So yeah, sometimes I’m forced to pay attention and be aware. How is that helpful? Well, for starters attentive awareness facilitates choices of behaviors that are consistent with my needs, values, and interests (Brown & Ryan, 2003). It is healthy to really navigate personal feelings, thoughts, and even pain. David Cain wrote about mindfulness in a way that really “stuck” with me. It changed the way I view “forced attentive awareness”. Check out this great article, “How to Make Mindfulness a Habit With Only a Tiny Commitment“.

For me, mindfulness means being truthful with ME. I am learning to be mindful even when I am super busy. I do this because there will be days I am NOT busy and I want mindfulness to be an invited friend instead of unexpected guest. As a person of faith, it is also super helpful to be frank with God. In doing so, I am actually able to recognize false coping skills that in the long run are not healthy for me.

I’ve heard some folks say, “Oh golly. I can’t go there and allow myself to FEEL. You don’t know what I’ve been through“.

No. No I don’t. But I do know that pretending those feelings don’t exist do not change the fact that the elephant is THERE. At some point in time it’s gonna sit. On your chest. You won’t be able to breathe.

Be Mindful of Your Pachyderm

It is healthy to habitually and mindfully pay attention and be aware of what and who you really are. What are your struggles and successes? Where have you been, where are you now, and where are you going? Who is helping you get there?

What is really hard for you? What have you learned to do well? What do you need to change?

WHO ARE YOU?

Don’t pretend that being mindful is the same thing as having your mind full. The latter is just another form of busy-ness on the cognitive level. Be attentive. Be aware. Do this with enough frequency that you can be mindful each and every day – for even just a few moments. I make it a priority to be mindful for a longer period of time – like a whole DAY, at least once a year.

But the elephant “sat” without invitation for me this past week. It took me by surprise. That is going to happen. However, if you’ve practiced mindfulness, you are going to discover…

YOU CAN BENCH PRESS AN ELEPHANT.

Denise Portis

Brown, K., & Ryan, R. M. (2003). The benefits of being present: Mindfulness and its role in psychological well-being. Journal Of Personality And Social Psychology, 84(4), 822-848. doi:10.1037/0022-3514.84.4.822

Cain, D. (2013). How to make mindfulness a habit with only a tiny commitment. Rapitude.com. Retrieved July 20, 2014, from http://www.raptitude.com/2010/03/how-to-make-mindfulness-a-habit-with-only-a-tiny-commitment/

Spira, A. P., Zvolensky, M. J., Eifert, G. H., & Feldner, M. T. (2004). Avoidance-oriented coping as a predictor of panic-related distress. Journal of Anxiety Disorders, 18(3), 309-323. dii: 10.1016/S0887-6185(02)00249-9