What Came First?

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The Chicken or the Egg?

What came first, the chicken or the egg?  That phrase brings a smile to my face every time I come across it.  It has been the cause of many a debate from both my childhood and my present.  I suppose I’ve always been surrounded by people who love to argue a point.  Everyone knows the chicken came first.  If you disagree with that… well, you’ll need to write your own post!

In life there are many cause and effect changes.  These are either passionately discussed because of more serious consequences that can occur, or worse – not discussed at all due to what many may view as a “taboo” subject.

I’ve always been a “worrier”.  I can remember hearing from my mother at a very young age, “Denise… don’t make mountains out of mole hills”. I was also told that if I didn’t have something to worry about, I’d work hard until I had found something to worry over.  As an adult, I prefer to look at my “worryin’ over things” as my way of preparing, planning, and anticipating outcomes.  Believe it or not, “worrying” calms me down.

But I am not misguided in believing that worry is the same thing as anxiety.  I don’t remember being an anxious kid.  “Worrier” – yes, anxious – no.  I do know that I have had anxious periods in my life.  I have a new “friend” who is a phenomenal writer.  I’ve been pushing Lisa to investigate writing a book and hope I have finally twisted her arm in doing so.  Having benefited from her wisdom and straight-forward speculations, I’ll be one of the first in line to buy several copies.   She has been blogging about “anxiety” quite a bit lately. (If you have had problems with anxiety, I encourage you to begin reading her posts beginning here).

I have met many people with different types of disabilities.  I have also met many “anxious” people.  Often, those people are “one and the same”.  What came first?  The disability or the anxiety?

We Can Make Ourselves Sick

One doesn’t have to “google” stress and anxiety very long before they begin to find out these feelings can affect our physical health.  Our body’s immune systems can even be weakened when exposed to stress for prolonged periods of time.  Although “thinking happy thoughts” does not necessarily cure every ailment, being stressed, worried, anxious and pessimistic can certainly hinder our getting well.

Many physicians who specialize in critical care fields have long been taught how important it is to treat the patient’s mental and emotional state as well as their bodies.  Even a patient’s spiritual beliefs can aid in recovery.  Discovering (or re-discovering) hope and belief in God, can greatly benefit a patient who has experienced an injury or life-changing illness.  My husband wrote his dissertation along these lines.  His book is NOT easy reading – smile. Effects of Religiosity on Life Satisfaction Among Survivors of Brain Injury, was written after having seen the direct results of faith on patients with a TBI over a number of years. Terry researched whether or not people with brain injury have higher life satisfaction if they are involved in religious practices. People with brain injury traditionally have one of the lowest life satisfaction scores of any population. They have similar scores to people in prison!  In contrast, if someone with a TBI has no faith – no belief system, they tend to have very low expectations and life satisfaction.

Disability or Anxiety?

So… which came first?  Anxiety can certainly be triggered by “life events”, but it can also be a chemical imbalance in an individual.  Anxiety disorders are serious.  Feeling anxiety – an “anxiousness” – from time to time is not uncommon and even expected in this thing we live called LIFE.  Can a disability, especially an acquired disability, cause us to feel anxious?  Can that anxiety, ignored and untreated, lead to a disorder? Yes… and yes.  However, one can have a disability and learn to “cope”.  Learning to cope, and developing new interests, skills and networks, makes a disability more of a discovery!  One learns how to acquire new ABILITIES.

Being disabled does not mean one is not “able”.  Certainly being deaf and having Meniere’s disease, places me in a disability group, or category.  I don’t consider myself disabled as long as I work hard at being “able”.  A cochlear implant, support group, a service dog and advocating in a positive way, have allowed me to create a way to cope… to live in a normal way.  I’m living a “new normal”. These activities keep me from feeling anxious.

Does that mean I never worry?  Heck no!  But worrying is not anxiety.  If I begin to see a set pattern of anxiousness, I treat that very seriously.  Why am I anxious?  Has something triggered it?  Am I eating right, sleeping well, and taking care of myself?  However, WORRY is different than anxiety.  I have plenty of daily worries that actually allow me to process things and plan my day.

Am I worried when I stand at the top of a stairwell with Chloe in heel, people milling all around me, and the room spinning counter-clockwise as I desperately try to adjust my eyes to the depth of the stairs below?  Well YES!  But that worry has allowed me to take steps (pardon the pun) in making it possible for me to traverse stairs safely. Chloe acts as a counter-balance, I instruct students around me that I’m not listening or talking until I get to the bottom… so don’t bother me, I breathe evenly and fix my eyes on no more than two steps at a time, and before I know it… I’m kissing the floor in relief at the bottom!  (OK, that’s an exaggeration, but I certainly do feel euphoric!)

Do I feel anxious when my cochlear implant batteries go dead?  (DUH)  Of course I do!  But my worrying about it happening at an inopportune moment, has led to a very real plan of action.  I have batteries EVERYWHERE.  They are in Chloe’s working vest, my pocketbook, the van, at home, and in my office. My CI is set up to give me a 20 minute warning beep.  When I hear it, I continue with what I’m doing but I include a few moments to secure new batteries.  I’m an expert at slipping out the battery compartment, punching out the three #675 batteries, and replacing them with finesse and speed.  I’m never “deaf” for very long.

I plan in advance to get 8 to 10 hours of sleep each night.  (Yes, you read that right).  My sleeping a great deal is not a warning sign that I am depressed.  I plan to sleep 8 to 10 hours a night!  I make it a priority, and I’m often the first Portis in bed each night.  I get a great deal of sleep because I’ve discovered that I “hear better” when I do.  It takes a lot out of a person to hear through a cochlear implant.  Lip reading is not easy.  Making sense of the noise in my world takes concentration.  I need sleep to function well.

Because of my Meniere’s disease, I consume less salt and caffeine. I take Manganese and working hard at trying to exercise regularly.  (My sister and I have a New Year’s challenge to each other to do better at this!)

At the beginning of this school year, I worried like crazy about some of the things I’m required to go to as a teacher that are at night.  Meniere’s has made driving at night difficult, as headlights from oncoming traffic trigger vertigo and make it difficult to see.  The light acts as a “beacon” if you will, and my eyes are drawn to the counter-clockwise beams around me instead of the road ahead. I worried about how to tell my director that I couldn’t do things at night. But that “worrying” allowed me to plan how I would present my reasons and requests. She listened, and approved my request to not attend meetings after dark.

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To some people, all the things I do each day to be safe, hear well, and live a full and productive life may seem tedious and strange.  But these things are “my normal”. These plans and daily preparations are not tedious and strange for ME.  Santa Kyersten (my daughter) gave me a cane for Christmas.  It was something on my wish list and for me, a necessary tool to live “my normal” on rainy days when my Meniere’s disease makes my balance much worse.

Disability, not Inability

Being disabled means one must find a way to do the things you want to do in a new way.  My deaf/blind friends enjoy communicating with friends and relatives by utilizing both cochlear implants and JAWS (a screen reader program for those with visual challenges and impairments). My friends who have mobility challenges, use service dogs, walkers, canes or power scooters. Late-deafened people learn to speech read, use hearing aids, cochlear implants and assistive listening devices.  I have chosen to have a partner to help of the canine variety!  Chloe gives me independence and confidence.

I’m not trying to suggest that there are not things that every disability group are simply not able to do. I’m deaf.  I’m not able to have a job that relies heavily on communication by phone. There are jobs I could never do that require being able to hear well.  I’m afraid I’ll never be an Air Traffic Controller!  However, the most empowering thing an individual with a disability can do is learn what they CAN do.  We live in a wonderful day of technology and gadgets.  I can do many things that I would not have been able to do had I become deaf even 20 years ago. When new people come to our local hearing loss support group, we work hard at helping them find ways to continue doing what they want to do at both work and home.  There are times an impasse is reached, and we encourage finding NEW things that bring just as much joy and satisfaction as a past job or hobby.

One is only truly no longer “able”, when they give up and resign themselves to isolation and feelings of worthlessness. Yes… there are things I can no longer do that I once enjoyed. But people who cared “booted me in the backside” and encouraged me to find new things I could do!  I have a disability, but I live a rich and full life.  I feel productive and satisfied with my life.

I’m sure that being a person of faith, has made this transition to a “new normal” easier for me. My life can change, and my abilities may “morph”. God never changes, nor deviates from being my Anchor that HOLDS.  The reality is… HE came “first“, and I work hard at keeping Him there in my life.

Denise Portis

© 2009 Hearing Loss Journal

Helping to Change a Fearful Heart

Kyersten and Tyco at Gambrill State Park, hiking near our home.

The Fearful Heart of a Dog

My family and I recently adopted a beautiful Norwegian Elkhound named Tyco.  Tyco is a year old male and came from a local rescue .  The rescue had picked him up from a shelter in Pennsylvania.  We have a form that his previous family filled out when they took Tyco to the pound to give him up.  All the problems they claimed Tyco had, we have never seen… but then again we don’t have him chained in the yard like they did.

My trainer (and friend) actually “found” Tyco for us, and they as a rescue always do some preliminary testing with a dog they take in for fostering.  She had told us that he was not aggressive nor mean at all.  However, although she didn’t think Tyco had been abused, it was obvious he had been hit.  When we first brought Tyco home, he was very timid around my husband and 17-year-old son.  It may be that he was not treated kindly by the men in his previous home.

Therapy that Works!

Tyco, like most puppies, chews.  When he’d pick up an iPod to chew on, (something my teens have now learned to not leave lying around), I’d say in an authoritative tone, “Tyco…. DROP IT!”  He’d drop it and sit apologetically with his ears down.  I’d come towards him to pick it up and say, “Good boy!  Good ‘drop it!’ “, and he’d cower and look away.

If we were all in the back yard “playing hard” with our canine family members, he’d cower in fear if we ran up to him to tussle over a ball… dropping it and cringing away.  So, I did what any good dog owner would do with a dog with a problem when people ran up to him in play.  I began running at him all the time in the back yard… throwing my arms around his neck and cooing, and praising him like crazy.  I gave instructions for the rest of the family to do the same.  He quickly realized that these boisterous “Tyco interceptions”, only meant lots of belly rubs and scratches behind the ears!

We’ve had Tyco for 6 weeks now, and he is still a little timid when verbally disciplined, but has really come a long way.  We taught him that we can be loud and even authoritative, but that we’d never ever hit him.  When he stops doing what we are fussing at him for, we immediately change our tone and praise him like crazy.  He’s “getting it”.  He wags his tail and “grins” at any family member loudly headed his way in a full sprint!

Denise with Chloe (who is off duty), brave enough to hike miles from home

The Fearful Heart of Someone New to Hearing Loss

Whether you lose your hearing suddenly, or have a progressive loss, it is not easy to go from hearing “fine” – to hearing poorly.  Every individual has their own issues.  These vary from person to person, due to factors which include: gender, age, relationship status, self-esteem, and even “faith history”.

My first reaction to hearing loss?  I dropped out of life. I holed up in my home and “waved a white flag of surrender”.  I felt powerless to fight the self-imposed isolation, and my self-esteem plummeted.  I was a stay-at-home mom at the time, and I’ve always been grateful I wasn’t working outside the home.  I’m sure I would have quit work unprofessionally and with a chip on my shoulder, certain that the hearing people I worked with were out to get me.  As it was my marriage and friendships imploded, and activities in my kid’s school and our church came screeching to a halt!

Therapy that Works!

Patiently and stubbornly my husband helped me see all that I still had to live for… in spite of not hearing well.  Even my audiologist handed me a flier about a support group that met in her offices one Saturday a month.  (Don’t you wish all audiologists cared enough about their patients to give them support information that will help them when they are not an an appointment WITH THEM?)

At the time HLAA (Hearing Loss Association of America) was SHHH (Self-help for Hard of Hearing People).  Self help?  My first reaction was that I wanted someone ELSE to help me… I didn’t want to help myself.  I was a whiny, bitter, angry, young woman.  Finally, a friend at church who happened to be the leader of the support group, talked me into attending.  Part of going to a support group is the satisfaction and “growth” one experiences when you reach out to help someone who needs it more than you.  I needed plenty of help… AND FOUND IT.

No organization is perfect, and HLAA has it’s faults as well as benefits.  (On the side-bar of my blog, you will see the links to numerous organizations that help people with hearing loss.  All provide great resources, and serve a purpose).  In a support group, I was able to find people just like me… those who had lost their hearing later in life.  This meant the WORLD to me.

Now I am part of a hearing loss support group in Maryland.  I look for people with a fearful heart.  They are easy to spot!  They look like what I saw in my own mirror every day for a long time.  Sometimes that person needs somebody to catch their eye and then sprint towards them with open arms and praise them like crazy!  Sometimes a “fearful heart person”, needs another peer to quietly listen and empathize.  I’ve even met people that I could tell needed me to gently scold “DROP IT”.  Their fear and pain were destroying who they were meant to be.  They needed help to recognize that.

I see some of those changed people every month at support group meetings.  They don’t wag their tails like crazy, but their smile of welcome is like a beam of sunshine shot straight from what was once a fearful heart.  They hug my neck, but only briefly… someone has just walked into the building with a fearful heart that they recognize needs THEM.

The thing I love about HLAA, is that even if you do not have access to a local chapter that meets physically as a group, they offer support, networking, friends and advice through their online chapter and message boards as well.  You can live ANYWHERE, and find the help your late-deafened fearful heart needs!

Denise Portis

© 2008 Hearing Loss Journal

Djembe and Elmo Live

Djembe Drums

Isn’t it funny the things that get my attention?  I’m a late-deafened adult, and only hear through the miracle of a cochlear implant.  And yet… things that get my attention are things that make SOUND.

This past Sunday I discovered that a newer drum being used in our band at church had a different sound.  Its sound was SO different than that of the other drums in the band, I ended up cornering the young man who plays it in order to ask him what it was.  Do you know how hard it is to hear a word like “Djembe“?  Grin!  I ended up asking him to spell it for me… he was very patient.  Wouldn’t ya know, I came home and googled it!  I want one for Christmas.

Elmo Live

Did you know that Elmo also has a new release this Christmas?  (You can watch him HERE)  I am so excited!  I have already thrown out a “hint” to my family.  (A “Denise hint” means an email copied to everyone in the family with a link and picture embedded was sent!)  Elmo is also a noise-maker!  You’d think I’d choose things that would involve my other senses.  Although if you think about it… Elmo and a djembe drum DO use the other senses as well.  But I find it interesting that I am mostly excited about “hearing” both of them.

Things That Make Me Go “Hmm”

I suppose the primary reason I like “noise-makers” for gifts is because I was born with normal hearing and struggle on a daily basis to STAY a “hearing person”.  I think that is what sets adults with hearing loss who choose to be “oral” apart from those who incorporate themselves into the culturally Deaf population, employing the use of American Sign Language to communicate.  I first heard (pardon the pun) the acronym OHL from Larry Sivertson.  He is someone I’ve been able to get to know through online correspondence and hearing loss conventions.  To my knowledge he was the first to coin the phrase, but i could be wrong about that.  He has a terrific site called Hearing Loss Web.  It’s a terrific website and tool for those with hearing loss… especially those who choose to remain oral.  His wife, Char, just had her own cochlear implant activated recently.  Larry and Char would likely understand better than most why non-essentials that make “noise” are such a grand gift for someone like myself.

My family doesn’t mind my “hint” list.  On the contrary, they really love seeing the UNADULTERATED JOY I receive in “hearing something” out of the ordinary.  It has helped them to not take their own hearing for granted I suspect!  I’m sure that everyone who has a cochlear implant, has a number of “noise-makers” that just bring a smile to their face to even recall hearing them for the first time.

I take their OWN “hint” list just as seriously.  (Who’d have thought iPod could continue to come up with new “must have” gadgets just in time for Christmas!)  Prior to my hearing loss in 1991, I use to only ask for things I “needed”.  I think it’s much nicer to have a “wish list” that includes things you’d never get for yourself because you don’t NEED them!  Sure we all tend to get things we NEED as well, but isn’t it fun to get some totally nonsense things too?

Denise Portis

© 2008 Hearing Loss Journal

Reader’s Digest and Thyme

OK!  I admit it!  I’m a fan of Reader’s Digest.  I grew up on a farm in Baca County, Colorado, and my only friends were tumbleweeds, newborn calves and my cousins up the road!  Because we had a “party line” for a telephone, I never dared to talk on the phone to school friends who lived several sections of land south on other ranches. (1 section of land = 640 acres) Needless to say, when the Reader’s Digest arrived each month my siblings and I fought over who had earned the right to disappear with it as a result of chores already completed in anticipation of the mail.

Since that time, Reader’s Digest has changed it’s look a little bit, and it’s index and page numbers are easier to navigate.  It comes in “large print”, and you can even access it online!  I’m still an avid fan of Reader’s Digest, although I’m the one who pays the subscription now.

This month’s RD came in the mail this past week, and I finally had the chance to sit down with it yesterday as it had been in “hiding” with my own kids who chose to disappear with it on it’s arrival.

I had to laugh at a “humor” story about a Simon and Garfunkel song.  Yes, yes I know!  Just knowing the song, and knowing the duet means I’ve tragically aged myself.  Perhaps this will finally put to rest that rumor that I’m Terry’s 2nd wife!  I really DID grow up in the late 60’s and 70’s!

It seems a little girl had been listening to the song, “Scarborough Fair”.  She looked up at her parent and asked, “So did Parsley save Rosemary in time?”  I can’t really explain why I got the giggles over this.  I was actually laughing so hard that I had to wipe the tears of mirth from my eyes.  Chloe sat and looked at me with her very serious hound-dog look.  She was a little apprehensive, as she had been given no training about how to deal with Denise if she’d lost her mind!

As a person with hearing loss, I often misunderstand things that people say.  I’ve learned to repeat what I THOUGHT I heard when something doesn’t “fit” in the conversation.  This allows me to be proactive about the way I hear, and helps others “hear” what things may sound like to a person with hearing loss should they “rush” or “mumble”.  (See?  All those workshops at hearing loss conventions have paid off!  I really HAVE learned something!)

I love that even people with normal hearing sometimes mistake what they hear.  I also believe it’s very important for people with hearing loss to communicate what they hear when something doesn’t make sense.  It helps EVERYONE to speak up and ask for clarification.

I’ve only encountered one problem with this practice.  It doesn’t work in reverse.  If you’ve men in your life (husbands and teenage sons in particular) you can relate.  You repeat what you thought you heard and are RIGHT.  Aforementioned subjects try desperately to find an “life raft” from their “ship that is quickly sinking“!  An example:

me: “Honey?  Will you let the dogs out and get one of the kids to set the table?”

“honey”: “I’m reading the paper, and have worked all day.  Give me a minute!”

(I poke my head around the corner with eyes wide and point to my CI which clues the other person in that I heard “something” just fine!)

me: “Did you say, ‘I’m reading the paper and have worked ALL DAY?’ ”

(The paper comes down, the color washes from his face and all of 60 seconds rushes by as if time is being SUCKED OUT OF THE ROOM)

“honey”: “Umm… I said ‘I can’t REACH the paper to THROW IT AWAY’ ”

(I look at the paper in “honey’s” lap and raise one eyebrow with the practice and finesse of a true “Mr. Spock”/Star Trek fan… )

“Honey” gets up to let the dogs out…

Denise Portis

© 2008 Hearing Loss Journal

Prepare Your Feet

As she is a service/assistance dog, I work hard at keeping Chloe in great shape.  I maintain her weight, bathe her, brush her teeth, groom her, and take care of her feet.  Chloe is usually fast asleep when I give her a pedicure.  I guess she only gets pedicures!  She can’t have a manicure being she doesn’t have hands… only feet!  Chloe gets her nails clipped and then dremeled, and the hair on her feet is trimmed away to keep debris from getting in her footpad hair, and to allow maximum traction.  I “prepare her feet“, because she has an important job.

As a person with hearing loss, I have to “prepare my feet“. I can’t just get up every day, with little to no preparation and expect to function at my best.

Physically:

I “prepare my feet” by making sure I get a good night’s rest.  Fatigue can be a real enemy of a person with hearing loss.  It takes extra effort to read lips, “listen”, and communicate.  I try to eat right, and eliminate salt and caffeine as much as I can to help me manage Meniere’s symptoms.

Mentally:

I always reflect on communication disasters in order to better prepare for the next problem.  To “prepare my feet” mentally, I dissect failed communication situations and attempt to discover what I did RIGHT, and what I did WRONG.  I have even role-played with my family members or HLAA chapter members in order to better discover situational communication strategies that work better for different personalities.

Emotionally:

Preparing my feet” emotionally is difficult.  I am an emotional person.  A true “melancholy”, I have all the strengths and WEAKNESSES of this personality.  I remember that by responding positively and with grace, it will normally yield patience and understanding from those hearing folks I’m in contact with each day.  I try very hard not to take things personally, and to not live in a defensive and paranoid manner.  I remind myself that those closest to me are impacted by my hearing loss as well.  I should extend the same grace that I desire from them.

Spiritually:

As a person of faith, I am very conscious of how important it is to “prepare my feet” spiritually.

First and foremost, I recognize that God is truly the only one that can meet the needs of this many times self-centered, pessimistic child.  I rest in the fact that He alone communicates with me perfectly.  I can even remove my CI, “climb up in His lap” and pour my heart out.  I “hear” Him just fine and acknowledge that I should read His word daily.

Secondly, I know that just as His Son washed the feet of His followers to show what true servant hood is, I need to “prepare others’ feet” to show that my own spiritual feet are prepared.  I want to help people… especially those with hearing loss.

I openly and frankly admit that I often do not know how to do that at this stage in my life.  I have a tiny, “baby” HLAA chapter that is struggling due to lack of volunteers.  I no longer have speaking opportunities and venues in which to speak to those with hearing loss.  And yet…

… doors are opened to me almost daily to reach out in some way.  This past week, I’ve talked to a television station reporter about hearing loss, touched base with Walk4Hearing contacts, heard from numerous readers from a “hearing loss blog” network, and while running errands meet individuals who notice my CI bling and ask questions.  Being a servant simply means being available.  To be available… “prepare your feet“.  You will be surprised at the number of doors opened in which you can make a difference in someone’s life.

Denise Portis

© Hearing Loss Journal

True Belongings

There is very little in our lives that we can control. We can make plans and be incredibly organized. In the end, however, this only guarantees the likelihood that we will be prepared for things we’ve predetermined may or may not happen. Planning does not illuminate nor prepare us for things that are impossible to imagine. Robert Burns wrote “To a Mouse”, from which we know the familiar line, “The best-laid plans of mice and men often go awry“.

We do not plan nor prepare for accidents, illnesses, or disabilities. We don’t plan for things to go “awry”. Even when trying to prepare for confrontation with an individual, we cannot fully prepare for every scenario as we cannot accurately anticipate how someone may respond. We do not plan to “get fired from a job we love”, and we do not plan to lose a parent in death, or a child to poor decisions and sin. (I do not plan in advance for Chloe to drop a wet, slobbery duck in the middle of my keyboard attempting to get me to play with her on this wet, rainy day! Play breaks are important to my intelligent assistance dog! If I’m at home working all day, she needs some form of stimulation. I embrace play breaks with wet, slobbery ducks with… umm… enthusiasm?)

I’m a “planner” and someone who happens to be “big on details”. It means that I have developed great organizational skills, having honed some God-given talents to the point that I basically drive my entire family crazy. Someone who has great organizational skills often struggles with control issues as well. I can openly admit that I have “control issues”. I don’t like surprises. Heaven help the person that ever throws a “surprise party” for me. I don’t like them. I’m a planner, and one can’t plan for surprises. Planning for things, and preparing for activities are important to me. The one thing that can suck the air out of my lungs and leave me struggling for breath is a surprise. Have I mentioned yet that I hate surprises?

I never planned to have a hearing loss. I didn’t sit down at the age of twenty-five with a babe on each knee and daydream about being deaf. “I think… in ten years I’ll lose all of my hearing and rely solely on advanced technologies in order to hear and communicate!” We don’t ever plan for loss of any kind. Sure! We all know we WILL experience loss. It’s not a question of “if” we will, rather “when” we will. All types of losses, although expected, cannot be fully anticipated. At some point in time we are going to be sitting in the dirt on our caboose wondering… “What just hit me?”

I am in the process of reading for the third time the book entitled: When the Game is Over It All Goes Back in the Box by John Ortberg. God has used this author in my life a great number of times, and I highly recommend his books. He quotes from Thich Nhat Hanh,’s “I am of the nature” in chapter six.

I am of the nature to grow old. There is no way to escape growing old.

I am of the nature to have ill health. There is no way to escape ill health.

I am of the nature to die. There is no way to escape death.

All that is dear to me and everyone I love are of the nature to change. There is no way to escape being separated from them.

My actions are my only true belongings. I cannot escape the consequences of my actions. My actions are the ground upon which I stand.

The only thing we will ever really own are our actions triggered by personal choices. I have to smile when I hear someone say, “I made an intelligent, informed choice!” We cannot ever truly be completely informed of all of the facts. Life is unkind in that regard. We can make decisions based on things we know, but what we do not know is far more likely to affect us. What we fail to anticipate tends to be the driving force behind change. Who I am today was shaped by what I was not prepared for; I am the result of a Master’s plan and not my own. I am the consequence of my actions, which are my only true belongings.

I try to begin each day by waving a white flag of surrender. I do not have access to the Master Plan. I am not able to even peek over His shoulder to see what my day holds. But I do, however, have access to the “Master”. My daily surrender is to self… I do not have control over my life. But I can actively choose to trust the “Master” and His plan for me. (One of my earliest posts was about having a blueprint for my life).

It gives me a great deal of satisfaction to know I have true belongings. I own my choices and am responsible for my actions. To find true peace, we must trust the Master to the “plan”.

At the request of my husband, I watched the movie “Master and Commander”, starring Russel Crowe. He had to twist my arm to see it as “war films” are not what I normally choose to watch in order to unwind! I actually learned a lot from the movie, but likely not the historical war highlights my husband had hoped. One particularly “educating” moment was when Captain Jack Aubrey, said, “England is under threat of invasion, and though we be on the far side of the world, this ship is our home. This ship *is* England.

I had one of those incredible moments in time where everything about my life sort of “snapped” into focus. My testimony is a reflection of my Savior… my Master. It gives me great comfort to know that Heaven – “on the far side of the world” – is my Home. But for now, this life… this “ship” is my home. I live each day faced with decisions about how I will live with my disability. Reacting” is subconscious, but it births the conscious decision to “act”. Those actions are my true belongings.

We all have true belongings. Those of us who have “control issues”, need to learn to relinquish our “plan” and focus on our actions TODAY.

Denise Portis
©2008 Hearing Loss Diary

What HLAA Means to Me… “Now”

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Many of my regular “readers” have asked me to post my thoughts on the Hearing Loss Association of America, and how I “feel” about the organization now that a bit of the heartache is in my “past”.

It has been difficult to sort through my personal feelings, in order to look at things objectively. Frankly, I’ve given up trying to seek an objective viewpoint as the way the Board of Trustees behaved this past Fall, DID affect me personally. I realize that I cannot pretend it did not hurt me, when in reality it did.

So as I write, I hope you’ll allow me some leeway to sort through how I feel personally as well.

I’ll never forget what HLAA’s founder, Rocky Stone, told me at the Atlanta convention in 2003. “Terry’s biggest obstacle will be the board. It has always been the biggest obstacle to any of the Executive Directors… including myself!” The last convention I saw him at was the Omaha convention. He always cared about how I felt, and how Terry was dealing with the board. Rocky is in Heaven now, and I miss seeing him at the conventions!

Many local chapter leaders of HLAA have discussed and analyzed why it is that HLAA does not grow. I have always believed that part of the reason it does not grow, is that hearing loss is an invisible disability. Those whose seek support and information, are usually those whose hearing loss has reached the level that it directly affects their communication and therefore, their lives. The disability has reached the point that it is really no longer invisible. It is difficult to hide. I had always hoped that HLAA would begin to steer it’s efforts towards “hearing conservation” and in doing so garner the interest and attention of the nation and it’s professionals.

HLAA’s median age is not that of a younger generation. Even though there are record numbers of young people with hearing loss as a result of iPods and music concerts, even though thousands of young soldiers are returning from Iraq with hearing loss, HLAA’s membership still consists of those who are older. I do not believe for a moment that those past the age of 50 cannot recruit, mobilize and educate the press, professionals, and politicians about hearing loss. I believe they can… and yet it is not happening.

Terry “inherited” a great number of problems when he became the Exec. Dir. of HLAA. Many were problems that he and I should have investigated prior to uprooting our family and heading to DC. In MANY ways, I’m glad we did not know what we know now. Our home is now in DC, and we have made a life here with our family. As the Executive Director, Terry knew that he would serve at the “pleasure of the board”. He also knew that even if escalating problems were the result of past failures and mistakes, the “buck stopped” with him as he was the current Executive Director.

I think Terry stuck it out as long as he did because bottom line, there is not a group of people he cares about more than those with hearing loss. He began to love folks with hearing loss because of me… his love grew and his determination to continue trying to make a difference happened because he met many of YOU.

Being asked to resign, is not uncommon for Executive Directors… especially those who work for a non-profit organization. As Terry had been living under a great deal of stress due to dishonest accusations for over a year, he and I had already discussed that he needed to seek a new position as the stress was no longer worth the satisfaction of working for HLAA.

The board “encouraged” him to give his resignation and told him to “take care of his family”… take his time looking for another job, etc. Warm fuzzy feelings, ya-da, ya-da. (grin) Within two weeks the president had called Terry and retracted all that the board had told him during the November meeting… a meeting where he could have had the opportunity to speak the truth about what was really going on with documented proof to back him up. He was told that his last day needed to be mid-January. As we already knew Terry’s health would not survive staying in non-profit leadership, we did our best to encourage our kids (as they were scared to death) and begin looking for “something new” for Terry’s career.

Do I still love HLAA? Of course I do! HLAA is the ONLY national consumer organization whose mission is to serve those with hearing loss through information, education, advocacy and support. The fact that HLAA’s board is “dangerous” and does indeed effect the overall health of the organization, does not change the fact that “good” is still being done across the country through local chapters and state organizations. However, board members are the key to successful development efforts. They use their circles of influence to connect development staff with funding sources.

Why do changes need to be made on the board of HLAA? If you read and research, non-profits who are really making an impact have boards whose members are experienced and influential. A good local chapter leader does not necessarily make a good national board member. It’s not meant to sound snobby – grin – but the non-profits who are really making a difference and whose cause is on the national radar, are made up of board members who have experience serving on boards… people who are presidents, vice-presidents, senior directors, and chairman.

The CEO and development staff do have an important and critical role in fund development. However, fund development begins and ends with the board of trustees. The CEO and staff need the support of the board. Boards who overreact to complaints they hear instead of supporting and giving the benefit of the doubt to the staff, ultimately affect the trust the staff has placed in them.

Healthy boards have a shared strategy and clear vision for achieving the organization’s mission. Committees are tasked with elements of that strategy, and budgeting occurs around it. Boards stop working well when new ideas and initiatives… “pet projects”… are constantly brought up as “recommendations”. Frequently, especially with small staffs, shell-shocked employees sit in the back of the room and wonder where the time and money will come from to do yet one more “pet project”.

It is also unhealthy for the majority of the board to be picked by the board, instead of voted on by the members. Yet, HLAA has a long history of members who fail to nominate and vote on national board members. It is not unheard of for a “voted in” board member to have less than 15 votes! I’ve never completely understood why the members of HLAA fail to take this task seriously. Really, the board votes on the nominations, and majority of the board members themselves because the membership has failed in this task. Stagnate and ineffective boards tend to nominate “like-minded” people, however!

So as a member of HLAA I have no confidence in the board of trustees. I love and appreciate the HLAA national staff, and likely understand better than most members what the staff does and deals with on a daily basis. Each staff member does the work of 3 or 4 different professional positions, and are paid far less than what the DC area currently pays for valued staff. Most who work there do so because they have a personal interest… they have hearing loss themselves. The board of trustees more often gets in the way of their work, than they do in making it possible for them to do their jobs with their support.

I will always love and support HLAA both financially and with my time. They have made a difference in my life, and I want to “give back” by making a difference in people living in my community who have hearing loss.

I want HLAA to succeed, to grow, and thrive. I do believe, however, that this will only happen if the board of trustees is “disbanded” and then “put back together” by professionals and experienced BOT. Right now, I think the biggest weakness in the organization which is HLAA, is the board.

My family and I are doing great! I received over 470 emails after Terry’s resignation, from members and friends that I have made over the years. Terry has a job that he loves, and I’ve every hope that I can talk my kids into supporting HLAA again one day. I appreciate the love and support that you’ve shown to us during this time!

It is important to me that my hearing teenagers love and support HLAA. Why? Hearing loss is not going away. People like myself, needing support of an organization like HLAA, need the support of the entire family. I’m so proud that my own local chapter has so many “hearing family members” attend with the one they love with hearing loss. People with normal hearing SHOULD be concerned about hearing loss in our country, and knowing and loving someone who already lives with it tends to make one support the cause.

The Walk4Hearing is a wonderful annual event. Entire families, staffs, churches, and schools unite together to walk… for hearing. I’ve never felt anything quite as wonderful as the feeling I have experienced walking with so many for a cause so worthy!

So “what does HLAA mean to me now?” I love the organization, and I want to see it grow. Just as each of YOU try to make an immediate difference in your communities, at work, and at your churches… I too try to advance the cause of hearing loss awareness and to advocate in a positive way.

Who I am has not changed. What I am passionate about is not different now. I will always have a hearing loss, and I will always care for those who share this acquired disability with me.

Thank you for your love and support!

Denise Portis
©2008 Hearing Loss Diary