But I’m afraid…

But I’m afraid…

This morning my assistance dog, Chloe, was out on the porch barking her head off.  I’ve never appreciated how she looks without a head, so I found myself hustling outside to see what all the fuss was about.  At first, I couldn’t figure out what she was barking at, but it was very clear that Chloe was afraid.  Each muscle in her 4 legs were trembling with fear and tension, her forehead was wrinkled, and she whined in between high pitch barks!  I had to step closer in order to finally see what she was fixated on… a tiny bird feather.

Now I’m the first to brag that my working dog is a very smart canine!  She loves to learn, loves to work, and loves to train!  But sometimes… her fear keeps her from putting all the pieces together.  Sometimes… she needs help to look past her fear and approach things a little more logically.  I continued to reassure her that everything was fine.  I wanted her to investigate it a little closer with a little more, erm… backbone!  Grin!

Me: “Chloe… it’s OK girl!  It’s just a feather, and it won’t hurt you.  Show me!  What is it?”

Chloe: (Looks at me like, “Don’t you SEE?  Oh my gosh!  LOOK!  Show you?  But I’m afraid…“)

It seems that feathers have a smell… at least they do if you are a dog.  Chloe could smell a recent “alive kind of smell“.  When she would get close enough to sniff the feather, her sniff would MOVE the feather… and much to her dismay TOWARDS HER!!  Therefore, Chloe was convinced it was alive!  What does a hound dog do when they think something is alive?  They bark!  When Chloe would bark at the feather, it would move even MORE, but away from her!  Feathers are so light that they tend to want to follow the natural rules that feathers follow when applying physics… a hound dog’s hot air.

Even holding the feather in my hand, had her cowering in fear!  I sat on the porch and talked to her, all the while holding the feather out towards her.  Finally, she crept up behind me and with head on my shoulder sniffed and huffed at the feather in my hand.  I could feel her trembling, with her fearful “self” pressed up behind me!  Eventually a good, stiff, Maryland-September breeze picked the feather up and flew it up over the railing and out into the yard.

Chloe cocked her head to the side and looked at me like, “Well! What did you do THAT for?”

She was afraid of the feather, but wanted the feather.

But I’m afraid…

Last night I attended our school’s kick-off meeting.  All the teachers were present, and I knew I would face supper, entertainment, games, dessert, announcements and fellowship.  I have to admit it was something I had to make myself attend.  The night before I had even cried all over my husband, trying to find a way to get out of having to go!

When you have a hearing loss, there is just something incredibly intimidating about going to a group function that reverberates with the background noise of a large number of excited and “pumped” teachers!  I planned in advance, and made sure my cochlear implant batteries were fresh so that I wouldn’t “go dead” in the middle of a conversation.  I brought some assistive listening devices that work in conjunction with my t-coils on both my CI and my hearing aid.  Due to some recent rains, I knew I was wobbly enough to need Chloe’s special collar.  I was prepared.  I wanted to go.  I needed to go.  But I was afraid…

I talked to my director via email prior to going.  I’ll admit that I was trying to see if it was something I did indeed have to attend.  I did… and my director knew I needed to for more than the information we received as teachers.  She knew I needed to go in order face my fear.

My fellow teachers are very nice people.  I WANT to get to know them better… to even gain the treasure of a friend or two.  But in year’s past I’ve seen the look of panic when I put a microphone nearer their face in order to hear them better in a crowd.  I’ve seen their faces as they inwardly castigate themselves as they said something behind their napkin and I had to ask, “Pardon?”  (I’m a transplanted Southern gal, what can I say?)  I’m 100% sure that if these teachers knew how afraid I was of them, they would be devastated!

In my HEAD, I know that I have nothing to fear.  And yet, when I go to these things I find myself saying, “But I’m afraid… ”

My consolation, is that it is getting better.  The more functions I attend like this, the more comfortable I become.  The “feather moves”, and I’m a little jumpy about it; however, I’m learning it’s just a “feather”.

I’m thankful I do not seem to have the same illogical fears towards my students.  Young people seem so incredibly natural towards me.  If I have to ask a student for a repeat… seven different times… they cheerfully do so without any visible qualms at all.  Perhaps it’s because my classes are “electives”, (although many take them as alternative foreign language).  I know they CHOOSE to be there, and it doesn’t bother them that their teacher has a hearing loss.  I do not feel disabled around them.

With my peers it is different.  I hope it isn’t always so.

I want to attend meetings like these, but am afraid of meetings like these.

At least with fellow teachers, I am becoming stronger and more confident.  Perhaps I need a good, stiff, Maryland-September breeze to convince myself I’m in a “safe place”.  At least with every one I go to, I’m less “trembly”… and heck!  I quit barking months ago!

Denise Portis

© 2008 Hearing Loss Journal

Psalm 56:3: “But when I am afraid, I will put my trust in You.

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

Hurry Sickness

The first time I heard the phrase “hurry sickness”, I was sitting across from my elderly, widowed neighbor, Celia.  We were living in North Carolina at the time, and I had one of those rare opportunities to “soak up her wisdom” over tea and thin mints!  She was telling me about her son who had just retired for medical reasons, from a successful thoracic surgery practice.  He was depressed and suicidal.  He had put his surgery practice and surgical skills first in his life.  Now… forced to retire “young” at 52-years-old, he felt he had nothing to live for at all.  He had hurried through life, pushing himself to be the best (and he was!), making a name for himself in the nation’s Capital.  Two weeks after retiring, his practice had already replaced him and all he had to show for his sacrifice was a nice watch.

(As I recall… ) Celia told me, “Norm has ‘hurry sickness’… he always has!  He’s never been able to ‘BE STILL’ and enjoy quiet.  ‘Hurry’ has ruined his health, and now he’s alone in a big house, kids are gone… alone.  He never learned to enjoy ‘alone’… ‘Hurry’ has been like a pervasive, lethal infection, destroying him from the inside out!”

Dr. Ann McGee-Cooper has a great list of “red flags” for those who may think they have “hurry sickness”.  See if you can see yourself in any of these:

How do I know if I have “Hurry Sickness”

  • I typically drive 10 or more miles/hour over the speed limit.
  • I interrupt others and/or finish their sentences.
  • I get impatient in meetings when someone goes on a tangent.
  • I find it difficult to respect people who are chronically late.
  • I rush to be first in line, even when it doesn’t matter (for example, getting off an airplane first in order to stand at Baggage Claim longer).
  • If I have to wait over a few minutes for service in a store or restaurant, I get impatient and leave or demand service. To me time is money!
  • I generally view as less capable those who may be slower to speak act or decide. I admire people who move at my speedy pace! I pride myself on my speed, efficiency, and punctuality.
  • I view “hanging out” as a waste of time.
  • I pride myself on getting things done on time, and will sacrifice the chance to improve a product if it means being late.
  • I often rush or hurry my children and/or spouse.

Ones I have thought of as well:

  • I look for the check-out line at the grocery store with the fewest people, all the while scanning other registers to see if they are moving faster.
  • I stand in the shortest line at a fast food restaurant, and hop over to another line if the person in front of me just ordered something complex that will take time.
  • I go through my entire day multi-tasking so that I can get more accomplished in a short period of time.
  • I “dare” the kids to see who can clean their room the fastest, even offering a monetary reward for the winner!
  • I choose email over the phone because it won’t take as long as I don’t actually have to communicate.

I’m in the process of reading John Ortberg‘s book The Life You’ve Always Wanted.  He has a chapter in his book called “An Unhurried Life:  The Practice of ‘Slowing’ “.  I thought I was actually pretty good at “the practice of slowing”.  I was startled to read his opinion of what solitude is NOT.  I thought that by taking my cochlear implant off and curling up with a good book was a strategic way to practice “slowing”… to enjoy solitude.  Dr. Ortberg suggests that this is not actually practicing solitude.  It doesn’t “unhurry” you at all!  He said we need both brief periods of “real” solitude to “unhurry” our lives, but also extended periods.  Brief periods can be 30 minutes!  Extended periods should be at least for an entire day.  He states:

“What do we do when we practice solitude?  What should we bring along to that quiet place?  The primary answer, of course, is ‘nothing‘… At its heart, solitude is primarily about not doing something.  Just as fasting means to refrain from eating, so solitude means to refrain from society.  When we go into solitude, we withdraw from conversation, from the presence of others, from noise, (easy for me!  smile!  I need only remove my CI!) from the constant barrage of stimulation.

I have found that since I lost my hearing, it is especially important for me to be “quiet”.  You would think that would be easy!  But one must “quiet” more than sound.  I must “quiet” my hands from being busy, Busy, BUSY.  I must “quiet” my mind from always thinking about what I need to do next, accomplish before I go to bed, chores, work, service, etc.

This morning with my husband gone to work, my son busy working an eight hour shift at McDonald’s, and my daughter taking care of a doctor’s appointment and then a pet sitting job, I found myself alone.  Eager to take advantage of my solitude, I sat in our “quiet room”.  This room was lovingly dubbed “The Quiet Room” by my hubby.  The wallpaper is the cloth type that keeps noise from bouncing around, there are vinyl “noise reducing” blinds on the window, thick carpet and soft comfortable furniture.  NO ELECTRONICS ALLOWED.

Alone, with only a sleepy hound-dog at my side, I turned my CI off and sat in a big cushy chair and watched the rain.  Monday-Friday, our cul-de-sac is a very quiet place.  I enjoyed my time of just reflecting, praying and watching the rain!  I came away feeling rejuvenated even!

Do you have “hurry sickness”?  Do you need to learn to reflect… to enjoy solitude?

Denise Portis

© 2008 Hearing Loss Journal

“Life is My University”

Louisa May Alcott (1832-1888 )

“Life is my university, and I hope to graduate

from it with some distinction.”

I have always loved quotes.  I write them down, meditate on them, journal about them, and have learned the power of words.  Although many quotes have taken hold of my very soul… forcing me to make changes and “grow up”… I am very conscious of the fact that I am neither profound nor eloquent.  My own children will remember a couple of quotes all right!  My son will remember how fond I was of saying, “If you’d put it up when you’re done with it, I would not have to interrupt what YOU think is important to do it now!”  My daughter will remember, “You’re being to hard on yourself!”

I don’t “live”, to be “quoted”, and yet still recognize the impact “quotes” have made in my own life.  I am currently reading a book by Drs. Parrott and Warren entitled:  Love the Life You Live.  In the introduction, the authors chose to begin the book with a quote by Louisa May Alcott, “Life is a university, and I hope to graduate from it with some distinction”.  Sometimes quotes seem to leap off the page for me!  It is as if a hand reaches through the pages of the book laying in my lap, to touch my heart with the power of truths wrapped in the guise of words to forever change who I am.  I sat there re-reading, and then contemplating this quote for at least twenty minutes.  (Yes, I know!  It can take me awhile to read a book!)

“Stress 201:  MWF 8-9:30 AM.  Professor:  TBA

I’ve had a tough year if I’m to gauge it with the type of things that measure stress and anxiety.  If I’ve been “taking classes” in this “university of life”, I’ve not been able to pull a “C” and will likely need to repeat the classes if I’ve any hope of graduating!  The sobering facts about my “school year”, are that outside forces and circumstances did not cause the stress and anxiety.  These “classes” were manufactured by internal insecurities, “righteous indignation”, and the wails of a childish response screaming, “that’s not FAIR”!  I hate these kinds of classes.  The kind of classes where the professor is YOU, and you can’t believe that bad luck in ending up with yourself as the teacher!

When my husband was encouraged to resign his position as Executive Director of a national non-profit last year because his “skill set” was no longer needed, and the organization wanted to hire a younger, experienced fund-raiser that would represent the “new face” of the population, he was disappointed for all of one day.  He has the unnerving, yet enviable ability to see the positive in everything.  He is now in a completely different environment where he is making a difference in a larger population of “others”, than he ever hoped to touch at his previous job.  He is thriving, growing, and more importantly content and excited about the future.

I chose not to look at it as an opportunity to get out of a stagnate, negative environment.  Instead, I was angry that he was not given the opportunity to expose the truth, that he was not given the chance to present what was really going on behind “closed doors”.  However, I quickly went from “righteous indignation” to “praying God’s wrath” on their heads!  Yes.  Hubby and I registered for different “classes”.  His completed coursework complemented his work at life’s university.  My classes are the kind that if you looked at my “transcript”, you’d wonder why I ever chose to invest myself in things that had nothing to do with my “major”.  I may as well have registered for “Underwater Basket Weaving”.

A lady I’ve come to know who lives CLEAR across the country in California, recognized early on the poor choices I’d made in my “class schedule”.  Raegene recommended a good book about the type of forgiveness that is extended only after tough upper level courses in “life’s university”.  From there I found my attitude changing.  Quotes from my own mother came back to me as I read the book.  Quotes like, “You’re right.  LIFE ISN’T FAIR.  Shake it off!” Other quotes she has written on my heart and mind seemed to be intertwined with the words I read.  “You are not responsible for other’s actions.  You are only responsible for how you react to them.”  As a person of faith, I realized that God was hammering it “home” for me that I was not doing well when I received my “mid-terms”.  It’s not that I had even signed up for the wrong classes.  I was simply studying poorly, and failing to take “good notes” in class.

A Forced “Minor” in Hearing Loss

Sometimes we are forced to take “classes” that we have no interest in, yet need in order to graduate.  We can go belly-ache to the “Dean” if we want to, but in the end these courses are needed to complete our degree.  No one chooses to “minor” in hearing loss.  I think this avenue of “study” especially takes those by surprise who find themselves in the classes later in life.  Whether the hearing loss is sudden, or progressive… one never deliberately signs up for classes where the extra class fees include hearing aids, cochlear implants, Dry ‘n Store devices, and batteries by the truckload!

When I found myself in “hearing loss classes”, I immediately looked for tutors.  All tutors are not created equal.

The first day of class your professor may discuss “why” for about 10 minutes.  It’s all the time they have for this topic, as there is very little information to support it.  Yet students “talk it to death”.  When the professor would like to proceed with the lecture series, many students choose to dissect, discuss, and write term papers about “why”.  Some are lucky to have mentors who force them to move on to the next important chapters in the text.  These students have tenured professors who realize the important task of “moving on” and learning “life skills” instead of allowing stagnate thinking.  Others who aren’t so lucky, end up spending the majority of their classroom time arguing and trying to defend and debate a topic that doesn’t matter.  The professor may be apathetic as they will “get paid anyway”.  I long to tell people new to hearing loss to drop the class as quickly as possible.  Enroll in a class that moves on from the “why” to more important topics by the 2nd day of lecture.

Hearing loss, like most acquired disabilities, is not a chosen study.  Yet sometimes a person ends up with enough credit hours that they discover they have inadvertently minored in it!  The wonderful thing about this minor, is that all students can become substitute teachers if they choose too.  When I stopped looking at my course load, and instead sought ways to teach others what I have learned, my attitude about my “minor” began to change.  If I can help tutor ONE person with hearing loss, it will be worth the late nights I’ve spent cramming for exams, and tuition dollars I’ve thrown at “Hearing Loss”.  Because I had a series of good tutors myself, I quickly went on from the “why” to chapter two… “What now?”

I’ve met some people in the seventeen years I’ve lived with hearing loss, who have made a “major” out of hearing loss.  It was never meant to be a “major”. Life is much more than “hearing loss”.  However, I have met some people who have a Ph.D. in hearing loss.  Don’t get me wrong!  Hearing loss can shape who we are, teach us life skills, develop attitudes and mold our character.  It can have a profound effect on our studies in “life”.  But I am not defined by my hearing loss.  Hearing loss has simply brought out unique characteristics that would have never been developed had I not experienced it.  Life is never about a disability.  Life is about our ABILITIES.  I can’t hear well, but you should see what I CAN do!  And I can only do it because I’ve learned to live with the uniqueness of my own personal hearing loss history.

What about you?  Have there been unique trials and triumphs that have steered your coursework towards a special kind of “you”? Are you searching for “teachable moments” in your “studies”?  Are you “teaching” with your own life? I don’t know about you, but I want to graduate with distinction!

Denise Portis

© 2008 Hearing Loss Journal

Teasing

I was told this week by someone I was close to that my teasing had been hurting their feelings. I was so surprised and felt very badly about it. It had never occurred to me, that I was being insensitive or mean. I was very hurt.

Part of it I think, is because of the families we grow up in. Maybe this person’s family didn’t tease often or in the same way that mine does.  In my family, we are always gently poking fun at each other and teasing. If it ever did hurt, we let the other know right away, and they wouldn’t do it again. But I don’t remember that ever being a problem.

The boys, Dad and Chris, are especially big on teasing and even good-natured name calling when in competition with each other. They love jeering and laughing…all in fun. For example “My grandma could do that better in her sleep!!!” All silly…all teasing…all in fun.

Mom is one of the best sports I know. She pokes fun at herself all the time…including her hearing loss and balance problems. She doesn’t cry or become embarrassed when she doesn’t hear something or stumbles because of her balance. She’ll laugh at herself, which makes us feel like we can laugh WITH her. I have always admired this about my mom. When she mishears something, (and sometimes she can be really OFF on what she hears), she is always the one to lead the laughing. She lets herself kindly and lovingly be teased. And I consider her a sensitive person…but not in a defensive way.

Everyone in my family has learned there is a time to tease. For instance, if mom is treated like she is a lesser person because of her hearing loss at some meeting or errand, we don’t laugh. We try to comfort and are righteously angry on her behalf. If I mess up in front of people while giving some sort of small speech, they won’t laugh. They will comfort and hug.

But we’ve all learned to laugh at the small mistakes and to tease each other. This situation with this person has taught me to be careful with who I tease or how I do it. (For example, teasing over instant messaging may not be the best, since there is no facial expression or voice). I can’t expect everyone to be like my family, and they know me better than anyone.  They know the way I tease and how I mean it. It has also made me appreciate my Mom, who can laugh at the things that happen with her hearing loss and balance, and in doing so, she creates an atmosphere of cheerfulness… not depression. She is amazing and I really admire her.

Kyersten Portis

Stress and Hearing Well

You know I’ve heard a lot of different speakers discuss the different things that can make hearing difficult. Background noise is a common culprit, as well as poor technology or NO technology. Soft voices, people who chew gum, covering your mouth, or the common cold can all make hearing difficult for someone who has a hearing loss.

I don’t often hear (pardon the pun) people talk about how stress can affect hearing, however. I wonder why that is? We all have various levels of stress depending on our jobs, relationships, health, etc. I tell myself that there is NO WAY I am alone in the fact that stress greatly affects my ability to hear. And yet… I have not read or seen that it has been openly addressed in any forum or list serve.

Stress greatly affects my ability to hear. As a family, we just experienced one of the worst weeks we’ve probably ever had. As “mom” I struggle to answer questions and concerns in a calm way, trying to relay my assurance that everything will be ok. As “wife”, I try hard to encourage and affirm my husband. I think even prior to hearing loss, my personality was such that I tended to “shoulder responsibility” for the emotional well-being of those I love.

Do you know how difficult it is to be supportive and helpful when you aren’t hearing well? Stress tends to negate any positive assistance even the very best of technology has to offer me! I love my CI. Even so, this week has been a difficult “hearing” week for me. I think it’s because I am so very distracted… making it difficult to concentrate fully on communication.

People with normal hearing interact verbally and communicate with little concentration. I remember being able to peel potatoes over the garbage disposal… WITH the water running… WITH the radio on… all the while discussing how great the Denver Broncos are with someone else, while in the kitchen with my back turned! (Hey! Long ago when I could hear, the Broncos were awesome! Go Orange CRUSH!) Yes, now I am able to hear voices so much better, and communication is so much easier. Yet I still burn calories just listening… at least compared to folks with normal hearing. (Why doesn’t the scale show that listening with a CI burns calories? grimace)

But when I’m feeling overloaded with stress, grief or despair… that distraction is enough to keep me from hearing well. My family have all shot me looks of surprise this week in the number of times I’ve said, “Will you repeat that?” They, too, have grown accustomed to my hearing better and communicating with confidence.

I guess I didn’t realize that communication for someone with a CI still requires concentration. I am encouraged, however, as I simply cannot see around the fact that this must get easier. The longer I have my CI, I really think that I will have to concentrate less. Perhaps stress will not be a hindrance to hearing well in the future.

For now… I am saying “huh?” a lot!

I imagine, that is why prayer has been a constant in my adult life. It’s only through prayer that I communicate with ease. I don’t have to read God’s lips… I can disconnect my CI and feel very confident in my ability to express myself to Him. Stress doesn’t come into play at all. As a matter of fact… when finished I find there is less stress anyway.

Denise Portis
©2007 Hearing Loss Diary

Between a Rock and a Hard Place

Between a Rock and a Hard Place

I’ve had a tough week. I’m “stuck between a rock and a hard place”.

If I’ve had a really busy week with a great deal going on, I don’t consider that a tough week.

When I spend a week “butting heads” with two wonderful but “learning to be independent” teenagers who just happen to belong to me, I don’t consider that a tough week.

If I have a week where I rarely seem to see my often over-worked husband, I don’t consider that a tough week.

I didn’t even consider the week that our dishwasher quit washing, our attic ventilation fan… quit (ummm…) venting, and our doggie door quit opening to allow a canine who really needed to GO, a tough week! (Ok, ok! That was a pretty TOUGH week!)

But I just experienced a week where I felt like I really didn’t belong… ANYWHERE. Sometimes it’s really tough to be late-deafened. I hate to complain, and to me the worst thing a person with an acquired disability can do is to whine about their life! I much prefer to look on the “bright side”. I want to be the kind of person who helps others, and who sees the glass as “half full”. Besides, I really believe that you cannot make a difference to other people if you don’t have the right attitude! I desperately want to make a difference!

“Stuck between a rock and a hard place”

In my classes, we often discuss the meaning of English idioms and colloquial expressions. When translating phrases like these, it is best to translate the meaning… not the words. So I’m often digging in and trying to discover what some of the phrases that we use a great deal actually mean. Phrases like “stuck between a rock and a hard place”, require some investigation. One online phrase dictionary explains that it means: “forced to make a choice between two equally undesirable options.”

I feel “stuck between a rock and a hard place”. I don’t “belong” in either population group! My daughter (who is almost 18 years old), told me several years ago that she was really hurt when I would say, “You can’t understand. You’re a hearing person”. She said that it made her feel as if she were another species; that I was somehow claiming we weren’t even the same flesh and blood. She reminded me that I’m her mother and that she’s my daughter. Whatever level of hearing your ears has — doesn’t change that. (Geesh, sometimes kids can be pretty smart!)

Even though she is RIGHT, the fact remains that I am neither a person with normal hearing, nor am I Deaf. I am deaf (with a small “d”) and cannot hear in a conventional way. Yet I am not Deaf (with a capital “D”) which means that I am not culturally Deaf and use sign language as my primary means of communicating.

I’ve had a tough week. (I’m getting redundant, aren’t I?) I have been gently arguing the case of my peers… to an organization in Frederick County who will only provide services and assistance to groups who are culturally Deaf. If you don’t sign, you are “up a creek”, basically. I can’t go into a lot of detail because of the type of folks who “happen across my blog”. Being married to whom I’m married to keeps me from speaking my mind on my very own blog sometimes. I’m ok with those parameters, as it has probably kept me from saying something I shouldn’t! Suffice it to say that it has been made very clear to me this week that I am not “Deaf enough”. I’ve the email exchanges to prove it.

I have discovered that wearing visible reminders of my hearing loss usually helps me. I wear my hair up so that people can see my cochlear implant bling, and bright red/orange hearing aid ear mold. However, if I’m not going to class, church, Bible study, or to school, I have to wear my hair down to cover all of that up. There are a great number of Deaf in Frederick. Most of the time I love it, and have met some wonderful people. Talking with them helps my receptive skills! But most of the time those visible reminders draw some pretty sharp criticisms. I’ve been cussed out (in sign), called names, and been talked about and belittled by Deaf parents to their children. Cochlear implants and the choice to remain in the hearing world is not a very popular thing to do in my area. Certainly I have met some Deaf who treat me like a normal person, and are glad that I even sign. Sometimes, they are only confused and after discovering I sign, ask “What’s wrong with being Deaf? Why did you change that?” After explaining that my cochlear implant allows me to stay in the hearing world in which I was born, that it enables me to communicate the way I was first taught language, and it allows me to interact with my hearing family, they concede it was “right for me”.

The same day I received the final email from this organization that I am trying to “gently persuade”… asking that they help my group of people who are oral with hearing loss, I was shopping in Target. I stopped to look at some clothing, when a mother with a daughter who looked to be about 10 years old, walked around me to a rack of clothing next to where I was standing. I heard the daughter ask, “Mom, why does that lady have a dog with her? She can see!”

I didn’t turn to look right away as the mother immediately replied, “the dog’s vest says it’s a hearing dog. She sure is cute! I wish we could ask to pet her, but the Deaf don’t speak well enough to understand. They don’t like hearing people”. By having a hearing dog it automatically meant that I wasn’t “like them”. I couldn’t be talked too in a normal way. It meant that I was “mean”.

I know I must have stiffened, because Chloe turned to look at me as if to say, “Excuse me? Why are you so tense?” I think because I had just received the kind of email that made me feel like I didn’t belong with the “popular” hearing loss community, I felt like I’d been struck in the face. I realized I don’t belong in the hearing world either. (You can’t hear the wail in my voice right now, but believe me it’s there!) I can’t simply be a person with hearing loss who hears better with a cochlear implant, and lives more independently due to the fact that I pay attention to a dog trained to hear for me.

I know the mother and daughter were very shocked when I turned to scoot by them and calmly said, “Excuse me! ‘Chloe, FOLLOW, please!’ “ If I had looked back I probably would have seen their mouths hanging open.

I came home feeling sorry for myself. I hate that feeling. I don’t like being the kind of person who feels sorry for themselves. I felt like I didn’t belong anywhere. The Deaf world doesn’t identify with me and seems to feel threatened by my bionics. The hearing world assumes I cannot communicate with them. I was mad. (I’m big enough to admit that)

However, this morning I had an email from a friend in L.A., who relayed something that happened to her over the weekend. It reminded me that I don’t live these ‘frustrations’ alone.

I had another email from a list serve to which I belong called, “HOH-LD News”. It is a mail list/newsletter email that goes about about once a week targeted specifically to hard-of-hearing, late-deafened individuals. Larry Sivertson and his wife are two individuals who are making things happen on the west coast and “beyond”. This list serve is only one of many things they do. They are an encouragement to me.

These kinds of things are an affirmation to me in many ways. I am NOT alone. It is an unfortunate reality that there are over 34 million Americans with hearing loss in the U.S. It is a fortunate reality that there are some who “reach out” in support, education, and advocacy. Without them I would feel alone.

It’s a new week.

Denise Portis
©2007 Hearing Loss Diary

Spiders!

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This weekend my daughter discovered something rather horrible. As I am a “recovering Arachnophobe” please know that I did indeed think her discovery was THAT… horrible! It seems her bedroom had a mommy spider and a daddy spider pro-create and produce numerous offspring. They were fruitful and multipied…

Now I have a reason for having arachnophobia. In southeastern Colorado where I grew up, we did have tarantulas. In some of the canyons in Baca County, there are certain times of the year where the tarantulas would “migrate” across roads, etc. to find mates. I’ve only seen a couple of the migrations, but I believe it is what “messed me up” as my kids would say. These migrations still go on today… as this link clearly shows. I am “recovering” in that I do not jump out of moving vehicles anymore upon the discovery of a spider on the inside of my car (like I did when I was 7 months pregnant with my daughter… thank goodness for my husband’s quick hands!) Yes… I believe there has been real growth in this area!

Kyersten came to me with fear and trembling about the fact that she had killed a couple of large spiders similar to the picture above, and “lots of babies”. We discussed it in great horrid detail. I felt the hair on my arms stand straight up! Pesticides were out… we have too many pets, and Chloe (my hearing assistance dog). So she has determined to kill as many as she can each day in hopes of wiping out the colony. (Do spiders have colonies?) We hung up tacky fly paper in the corners in hopes of snaring some of them. We went to war she and I. She doesn’t really have arachnophobia like I do, but she does have a fear of tiny crawling things. (Ants are her main paranoia if you must know!) However, little spiders fit right into that category, so she spent some sleepless nights. It didn’t matter that the babies were so teeny-tiny, that they couldn’t bite her. It didn’t matter that spiders do not crawl into your bed with the primary purpose of biting you. None of this matters at all when you discover numerous uninvited guests. She and I have been a little jumpy lately.

Now I am “recovered” enough from my phobia of spiders, that I actually felt compelled to explain how unreasonable she was being as she attempted to stay awake at breakfast over her pop-tart. (Don’t get me started on how Kyersten never eats a nutritious breakfast!) Isn’t it funny how we can “preach” at somebody when we aren’t walking in their shoes? It was very easy for me to do… I didn’t have spiders in my bedroom. (And I refused to sit around thinking about how easy it would be for them to migrate upstairs). I should have been a little more compassionate.

I have thought very poorly of people in the past who try to tell me how I should work to communicate with a hearing loss when they have normal hearing. It never goes over well at HLAA chapter meetings for a person with normal hearing to speak on what those with hearing loss should do to communicate more effectively. They should not be speaking on something they don’t live… they don’t have spiders in THEIR bedroom. And yet, I have learned so much by listening to what the hearing people in my life have said to me. Things that they themselves struggle with in communicating with me. I may think that I shouldn’t have to tell someone to face me when they are talking to me. However, they can’t understand why one time I may hear them fine from the other room, and then another time I will not. THEY are suppose to know when I’m tired and not hearing as well? THEY are suppose to know there is enough background noise going on that I cannot hear them as well and need to see them? That is more than being a little unreasonable on my part!

Do you know something else I’m guilty of? Sometimes when I just went through a communication FLOP… a situation where everything that could go wrong in listening… DID… I ask for opinions and then don’t want to listen. But if I ask for an opinion of someone who does not have a hearing loss… I need to learn to listen. I can at times, whine about the problem and discuss it to death… not really ever choosing a way to handle it better the next time. Instead I choose to only look at the problem and feel sorry for myself. Everywhere I look, there are spiders.

Kyersten’s big brown eyes were wide with terror about the spiders all over her bedroom… and she asked for my opinion. We discussed it at great length… I came up with several options and she choose a course of action. She listened. She chose.

I have whined so many times about a “poor hearing” situation and asked for opinions and options. I need to be willing to listen, discuss and choose a plan of attack. I want to grow. How about you?

Denise Portis
©2007 Hearing Loss Diary

We Make Do Somehow!

You know? When I find myself sitting around “counting my blessings”, it’s usually because I’m at a low point. Now a low point for me can simply be the result of a lack of sleep!

I was amazed at the results of an impromptu survey I took at the Omaha National HLAA convention several years ago. Ninety percent of those with hearing loss answered that they do not get enough sleep. Most admitted that they need between 8 and 10 hours of sleep a night in order to communicate well. If you think about it… those with hearing loss must be an active participant in “listening”. For most people, hearing and listening is a passive function of one of our main senses. Because I have a significant hearing loss, I know for a fact I burn calories trying to hear! Why doesn’t the scale show that proof? (smile!)

I have, however, had a hearing loss long enough to know that I have learned to “hear” in other ways… learned to “make do”. Oh sure! My cochlear implant, hearing aid, and assistive listening devices help a great deal! But I have also learned to use my eyes to hear better. Now before you think that means that I can speech read… think again. Speech reading is not an exact science! It use to be called “lip reading”, but the politically correct phrase is now speech reading. I use to love to watch the PAX television show about Sue Thomas, FBEye. The real Sue Thomas has the extraordinary ability to accurately speech read. She does so well as a matter of fact, the FBI hired her! But in reality, speech reading is not exact. It certainly HELPS... and combined with other things like technology, listening environment, attitude, etc., it can certainly help one with hearing loss “hear” better!

I do use my eyes to hear better, but it’s not necessarily to speech read. I “make do” somehow! I use my eyes to attempt to discern emotions, intent and attitude by carefully watching the facial expression and body language of others. I happen to have two individuals in my immediate family who can “tease” with a perfectly straight face! I fuss at them all the time! I search their expression to know whether or not something was meant in jest and to “hear” them better.

My assistance dog was sick the past couple of days. Chloe is not my “kid”, but I do love her a great deal! I’m very thankful that my hearing was still “manageable” when my kids were very small. For now that I am deaf… it was really difficult having Chloe sick and not being able to “hear” her. For two nights in a row, she bumped me and woke me in time to only comfort her while she got really sick! So by the third night, I went to bed with a flashlight. Now Chloe is better! Imagine how perplexed she must have been to have a flashlight shining in her eyes every 30 minutes or so! The poor thing hardly got any sleep for two nights… and the third night Denise is on pins and needles shining the light in her face every few minutes! At night I am completely deaf… no sound at all. Normally this means I sleep very well! But if I’m tense because I’m afraid I will NOT hearing something, the lack of hearing anything at night is not a positive! I needed to reassure myself that Chloe wasn’t going to be sick again. I needed my eyesight – with the aid of a flashlight – to “make do”.

Needless to say, I have always been in awe of two friends of mine who live in New Port Richey, Florida. They both have vision AND hearing loss. Yet… they have learned to “make do” too. It would take me 10 paragraphs to adequately explain all the things they do in order to live full and productive lives in spite of a disability X 2! They “make do” very well! (Their guide dogs are spectacular too!)

At Fidos For Freedom, Inc., in Laurel, where I train with Chloe, the clients all have various disabilities. Yet all “make do”. They train hard, and lead productive lives due in part from the assistance they now have from a canine partner. I love that one of Fidos numerous community service programs is called dAp. It stands for disAbility Awareness Program. The program’s intent is to educate others about disabilities, explain what it is like to be a person with a disability, and to increase acceptance of people who may be “different”. I really do believe that even people with disabilities can be very “ABLE”. It is right to capitalize that “A”! We “make do” somehow!

Denise Portis
©2007 Hearing Loss Diary

My Kid Figured Out I Can’t Hear

As I was updating my hearing loss diary, I cried all over again when I came across this one. (see below) I just wondered how many other mothers there are out there who find a special type of frustration in what they are NOT hearing in their kiddo’s lives. I have a good friend who is completely deaf (culturally deaf) and she continues to tell me how blessed I am that I could still hear reasonably well when my kids were babies. I know she’s right, and yet I wonder how many conversations my children choose not to have because having a conversation with “mom” is so time consuming. They’re pre-teen and “teen”. I want to have conversations with my kids. I’m rambling, I know! Grin! I think I can see how being hearing impaired can make you lonely in your own house full of people. Can anyone relate? Anyway…

May 8, 2003
This morning around 2:25 a.m., my son Christopher woke me up by scaring me to death actually. He grabbed my arm and shook me! There was a time NO ONE could sneak up on me even when I was asleep! I said sweetly, ok…. I growled, “What do ya WANT!!???”, loud enough to wake my sleeping husband as well.

OK… I exaggerate again… it didn’t wake him but he did groan and turn over! My son, continued to grab at my arm. Now he’s 12 years old, and weighs almost as much as I do. When he’s grabbing at my arm, I feel like slappin’ him up side of the head! (At least I do when I’ve just been woke up from a sound sleep!) Finally, I realized something was up. (Proof positive hearing impairment does not mean one is mentally impaired as well)

I followed him out in the hallway and he turned to face me…. still clutching at my arm. I almost died of shock. (Well, perhaps death was still a long way off, but my heart did skip a beat!) His face was white and his lips blue. Asthma. He’d never had anattack before, but I’d seen this enemy in my own mirror. I knew just what to do. Steam, doctor call (which husband fully roused took careof….. afterall, I did more than CLUTCH his arm. More like used him like a trampoline!) and calm.

Ever try to be calm when your youngest isn’t breathing well? While we were waiting for instructions from the doctor, he managed to rasp out, “Mom… I’ve been calling you for a long time! I yelled until I couldn’t yell anymore!” I almost died of shock. Did I already say that? Ever feel your heart pound and race out of fear? That’s how I felt in that moment. I’d let my kid down. I wasn’t there for him when he needed me…. wait a minute. My husband can hear! Where was he at? I’m gonna KILL HIM! smile. But I didn’t. Some people sleep very soundly, he’s one of ’em!

Well… my son knows I can’t hear. What’s with that? I’m thinkin’ in his child-clouded panic, he wasn’t thinking that mom cannot hear when her ear is turned off. (the way the kids describe my hearing aid).

Next… the early morning trip to the doctor. I slap on my magnetic badge, “Please face me. I read lips”. No one faces me. I am now sleepy, scared and angry. All in that order. The doctor puts my son on a nebulizer giving instructions the entire time. Ok. I can hear now. At least I can hear the rumble and bubbles of this machine helping my son breathe better. The doctor’s voice is still lost somewhere. I’m guessing it’s behind that worn out painting that she’s facing instead of facing ME!

Finally, I stand up for myself. Stand up for my kid. Stand up for patients who can’t hear. At least I did in that one instant. Our doctor looks embarassed. That’s something I guess. So home again and time for a “mommy sermon”.”Ok. You are both 12 and 13 years old. You know I can’t hear. You know I especially cannot hear when I’m in bed, without the HA, without my eyes open. You have a responsibility to come to me. Your old enough for responsibilities. You must help me help you.”

It went on for another 20 minutes or so. But I stepped off my soapbox still shaking. Still devastated. Still in shock. I can’thear.

Denise P.
©2006 Hearing Loss Diary