Monday, November 11, 2013

Slight: small in degree; inconsiderable.

What an overwhelming response I received from my Facebook post!  Thank you, to everyone who read it and an extra dose of gratitude to those who reached out and made contact.  I truly appreciate all of your support and encouragement.

Let's just dive right in.

Slight: small in degree; inconsiderable.

I finally after much begrudging and several days of reminding am on my way for a hearing test.  Chris practically made the appointment for me.  In fact, he was the one that provided the first clue that something was changing again.  It is both comforting and frightening that someone knows me so well that he can detect a change through my behavior faster than I will admit it to myself.  I'm glad I have him to keep me honest. 

The other not so subtle clue was through my two year old, Chase.  He is in the early stages of formulating speech and with each day comes a new word or phrase.  Unfortunately this time the new item is the word, "huh".  He has started saying it constantly and after everything we say to him.  I will ask him for the ball and his response is, "huh?" (pause) "huh?" (before I can repeat) "huh?" (after I do repeat).  It is always in three's and very annoying.

Hello kettle this is me, pot.

Yes, this from the person that has come to say "huh?" after much of what people say. 

Since he picked that up so readily I have been working on new ways to indicate that I need something repeated.  Some of my creative choices are:

I'm sorry?
Say that again?
I can't hear what you are saying.
I don't understand what you are saying.
Can you repeat that?
What?
Or my more intimate conversation move is to lean in with my ear turned towards the persons face.

The mere fact that I had to come up with more ways of asking people what they are saying shows just how bad off my hearing actually is and how much this hearing test appointment is needed.

So, here I am back in the soundproof room and for the first time I wonder if the lack of sound is reciprocal.  If I yell will the administrator hear me?  I feel like screaming to test this out.  Even more strongly I want to rush the door and bang on it like a madwoman while I yell "I don't want to be here!"

Despite these feelings I smile to myself.  What would that poor woman think if I rushed her little 20x20 window where she sits safely observing.  I'm sure it would be a first, after all a hearing test doesn't hurt immediately.  It's the results that hold the dagger and bare the blow of finality.

As the test moves forward I'm drawn into the beeping that seems increasingly spread out.  I try not to look directly at the person giving me the test as I am afraid that they may reveal when I am missing sounds.   "That's right", I start talking to her in my head.  "I cannot hear that beep so please move on."

This line of thinking leads me to wonder how many times they actually do push the tones that I don't signal for.  Is is once, twice, or three times?   How long do they persist in an effort to get my ear to hear?    

Immediately after we are finished the hearing test administrator brings in the chart for me to see.

"Looks like a slight change since March specifically in the 2K range which is where all speech sounds are mostly found."  Her voice bared no pity or real concern. 

I nodded in understanding of the results but I was far from satisfied.

"Isn't it odd that each ear is losing hearing at the same rate and in the same categories?" 

"Well it's genetic right?" She said very matter of fact.

"No."  I shook my head emphatically.   But the words Index Case floated over my head with a big fat arrow pointing down at me. 

I'm pretty sure as the years go by I will grow to hate those words. 

Click on this link to read my previous post on what it means to be The Index Case.
 
Slight.  Her use of this word was bothering me more than it should.  My last test in March had also only shown a slight decrease.  How easily that word was thrown around with regards to my ears.

So after getting my tune up and admittedly being able to hear better, I am setting out on a mission to figure out just what slight really means.  Armed with coffee and my computer I begin first by recording what the hard of hearing numbers actually are.

The numbers for less than perfect hearing range from 20-120 with the higher the number being the less you can hear.  The chart below show the breakdown of the ranges.

Degree of hearing loss Hearing loss range (dB HL)
Normal –10 to 15
Slight 16 to 25
Mild 26 to 40
Moderate 41 to 55
Moderately severe 56 to 70
Severe 71 to 90
Profound 91+

Now here are my results since September 2012 in the 2K category:

September 2012              35 Right Ear and 45 Left
March 2013                     45 Right Ear and 50 Left
September 2013              60 Right Ear and 65 Left
 Total change                 -25 Right               -20 Left

Over the course of one year I earned the honor of moving up two categories in my right ear, from mild to moderately/severe hearing loss and one category in the left from moderate to moderately severe.

Slight: small in degree; inconsiderable.  The severe numbers mock me. 

Logically and now historically if I keep on the path of losing 20 - 25 points over twelve months I'll be almost deaf by next year.

My stomach is churning at the thought.  I swear sometimes I write this blog more like an outsider looking in on someone other than myself.  Because of that I believe I have been and may still reside in a place called denial.

After my first diagnosis when the initial shock wore off I looked at the end game as being years down the road.  I never dreamed and still don't believe this kind of timeline is possible.

I still hold tight to the hope that the pregnancy is to blame for the significant and NOT SLIGHT decrease.

I want to hate something or someone for this new realization but there is no fault to place. I am at the mercy of what my body decides to do.  I just don't understand how it is possible that in each ear little villi are dying off in exactly the same pattern and at exactly the same rate.   Am I doing something to cause it and if so what would make both sides act in almost perfect unison?  Is this my bodies predestined path?  Only one answer seems logical for now and that is that it's time to go back to the specialist for further testing and advising. 

It is clear that control of this situation does not reside with me and I no longer feel as if I can brush it off as nothing.   Denial is leaving and a slight change has occurred.

Slight: small in degree; inconsiderable.  I wonder if they know how hurtful the use of that word is.

Nothing about what is happening with my hearing feels slight at all.  


Wednesday, October 23, 2013

Vulnerability

It has been a little over a  year since I sat in the Doctors office and received the news that I was losing my hearing.  The exact diagnosis being moderate to severe hearing loss in both ears with no explanation of why.  To me, it seems like yesterday and yet so much has happened since that day. My breath catches as I remember how the shock washed over me as the Doctor showed me my hearing on paper.  And with each word he spoke it would intensify and leave me wanting to pretend it wasn't real.  But it was, and is.  The reality now is that my hearing continues to deteriorate.  I hope that those of you just joining me will take the time to read my first blog post in order to shed some light on the issues I am having and help catch you up for my future updates.

http://theabsenceofsounds.blogspot.com/2012/09/the-absence-of-sound.html

Yes, the past 12 months have been a time of great change for me and my family.  To make sense of things, I have used the blog to chronicle the outline of this unplanned journey.  It has and continues to help me work through my feelings in a non threatening almost anonymous platform.  While this provides a necessary outlet, as of late it has seemed a little too safe.  I determined that if I am going to stretch myself and really put to use what I have been learning on this quest then I need to become vulnerable.  What is vulnerability?  For me, vulnerability at this point in time is posting my blog link onto Facebook. 

I began to consider this course of action about six months ago but never got up the nerve.  At the time, I talked myself out of it because I felt there were too many drawbacks to hanging myself out emotionally naked for all of Facebook to see.  It wasn't until this past week that I decided to move forward with the idea.  It was made clear to me as I looked at my newborn daughter because I realized that vulnerability can be a beautiful thing. 


I have spoke before on my blog about vulnerability and specifically mentioned a Ted speech by Brene Brown.  Click the link below to read that post and see the speech I am referring to.

http://theabsenceofsounds.blogspot.com/2013/02/authenticity-my-new-years-outlook.html  

I'll be honest, her words moved me greatly and then left me stagnant where I am today.  Because to speak your mind even when you don't know how others will respond takes courage and yet vulnerability goes even one step deeper than that.  So deep in fact that you have to stop living in fear of what others think.  Now I am a person that is always concerned with what someone might be surmising about me.  In response to that crutch I pay careful consideration to how I look, what I wear and what I buy.  If I feel inadequate in this area it will show up by allowing tiny insecurities to get the better of me.  Getting past what other people think is not an easy task.  In fact it is only very recently that I have found the strength to start working on overcoming it by showing myself and others grace. 

Oddly enough embarking on this path has opened my eyes to something very elementary:

  • If I don't judge others then consequently I don't feel so judged.  

  • If I don't talk about others when they are not around then I stop thinking that others are talking about me.  

It is a mindset, a matter of retraining the process by which you look at the world.  Changing your perspective is the road to freedom my friends.  If only it were that simple.

Vulnerable:   susceptible to physical or emotional attack or harm. 

In my daily life I would say I am vulnerable about 25% of the time.  This isn't a brag, and shouldn't be, but rather this is a window into what is my daily comfort.  You see, I am surrounded by those that know and love me and to whom I am transparent.  For some of you 25% vulnerability might be a lot.  To me it is the adjustment I made when my hearing loss began.  Because even though everyone directly around me is aware of the issue it does not make it any less of a crack in my normal confidence. 

Losing my hearing has made me very vulnerable.  Webster's definition sits above, does it sound like a good attribute to have?   Not on paper or black and white but in theory, yes it does.  Being vulnerable means letting others in and actually living.  No one can keep it in a neat clean box all of the time, so when the ribbon bursts and out comes all the stale old candy that you think will ruin your life just pause.  Take time to look around and see what really happens, you might be surprised.  I am betting at least one person will pick up that battered starlight mint and give it a try not caring that it might taste a bit old and not laughing at you for failing to have something fresh.  Those are your true connections in this life so why not toss it out there and weed out the real from the fake.  

In my daily life I don't tell strangers about my ears nor do I ever mention it to new people I meet.  In general, outside of this blog I do not discuss it unless asked.  It is not because I am embarrassed rather I just don't desire all of the attention on me.  Even when I feel badly at work because I must ask customers to repeat their names I still don't take the time to say that I am hard of hearing, instead I just look up at their mouth when they repeat it.

When those that are aware want to talk about it I am happy to oblige.  This has been a time of great learning for me and I enjoy sharing what I know.  It always surprises me the number of times someone will have another friend or loved one who is struggling with something similar.  Matters of the ears are way more common than one might think. 

Vulnerability.

When I was talking to a good friend the other day we got on the subject of a "surface society".  What I mean by that is this:

"Hi, how are you?"

"I'm fine!  What about you?"

"Yeah everything is great."

Conversation ends and the two people walk away.  Even though one just found out his wife had cancer and the other just lost their job.

So why are we such a "surface society" that gives the appearance of caring without really putting in the effort?  Is it that we don't really care, don't have time, or are too caught up in our own problems?

Vulnerability

Facebook actually facilitates this way of thinking.  We post pictures of our families (always happy) and post updates (that we write and re-write to make sure we sound pulled together and happy).  It is what I call, the cliff notes of our lives - happy version.

Occasionally you will come across an "honest" Facebook poster that will put negative thoughts and things that are happening in their life.  95% of us shake our heads as we read those updates and wonder why they are posting it.  But why not?  We are such a messy species when it comes to life and only in the struggles do we really reveal our true selves.  And no matter how together we hope and wish we are it will simply never get to a point where we are happy all of the time.  There are those that are sick and in need of prayer who post requests.  Personally, I love those but not because friends and family are ill rather because it gives us an opportunity to truly participate in their lives. 

I'm a happy picture Facebook poster.  I don't ever post about something going wrong.  Not because things don't get ugly but because I go to my small group of confidants and work it out there. 

So in the spirit of vulnerability I say to all of my Facebook friends this is the new me.  I can't hear worth crap (which makes it great that you only talk to me via the computer) and it seems to be getting worse.  

If anyone wants to comment I would love the feedback.  Write what you want and don't let what people think hold you back.  Dare to be susceptible to physical or emotional attack or harm, or rather dare to be...vulnerable.

And in fairness to vulnerability - it has taken me more than two weeks to actually get up the nerve to take the leap of faith and update my status and link this blog.  Thanks for reading.

Wednesday, July 31, 2013

Chaos Is Beautiful In The Form Of Family

I have always loved the feeling of immersing my ears under water.  As a child I would float for hours in the pool perfectly content.  There was something so magical about blocking out all of the external noise and finding my center and peace among the in and out sound of my breath.  I remember also finding comfort in the "dead man's" float even though your face is completely submerged.   Something about the stillness of it relaxed me. 

In some ways, I have that ability now as my hearing deteriorates.  You see, each time I remove my hearing aids the sensation of blocking out the sound gets stronger.  I used to describe hearing without help as a cotton ball feeling over my ears but now I would say more of a conk shell covering.   I truly believe that ever so slightly I can hear the crashing waves of the ocean.  It truly is the absence of sound.

I thank God for the peace in it though because I personally love nothing more than the sound of the waves.  In fact, I crave everything about sitting on a beach feeling the breeze, smelling the salt water and looking out over the vast body of water.    Many times I envision myself resting there in more ways than one.  Sometimes I am alone other times my family is with me playing silently beside me happy and content.

Cater, my oldest loves the beach as much as I do and the two of us actually start to get antsy if we don't get to go at least once a year.  Our ideal vacation we would sit all day in the sand and only break to eat a picnic lunch.  The last time we were in Florida he expressed an interest in learning to surf...poor child living in the middle of the United States that might prove that to be tough.  I chuckled but was proud as he said it because it is a part of me as well.
 

Today when I took my bath and submerged my ears under the water it was panic that struck not contentment.  I was instantly unsure if I remembered to remove my hearing aids.  They have truly become something that I forget about when they are in.

After realizing they were removed I rested my head and listened to the sound of my heart.  The rhythmic beat was soothing and I allowed my mind to rest and wander.  Silence in my house is ironically hard to find with an eight year old and his friends romping through the house and an almost two year old learning to talk and vocalize.  So this is a rare moment even with my hearing issues.

I breathe deep thinking about the new baby that will enter our lives soon.  I am excited and scared for the challenge.  One of my most largest worries is over the extra noise.  It is just so hard with low hearing to focus on one sound when there are many traveling across the air.  When kids are screaming it is almost like it scatters my brain and any hope of carrying on a conversation with me is lost.  Shoot - if I am on the phone and someone else is talking around me I lose focus within seconds.  So adding the third child will in turn make my house that much louder and harder for my ears and mind to navigate. 

I still feel peace though and gratefulness over the addition of this little one as well as thankfulness for my other two.  Despite the frustration that sometimes arises over not being able to keep up with the noise I would not change it for anything.   My life is full of riches and blessings.

It hits me as I am resting there that I need to work on letting go. 

One of my normal personality traits is the need to control.  I like to know things in advance, plan and re-plan to ensure that everyone gets input and is happy.  Losing hearing makes me want to try and control situations even more.  I seek a certain level of comfort that comes from smaller groups, brighter areas and lower volumes of outside interference.  Realizing that this is most definitely not always possible has already forced me to stretch way beyond what I thought capable.  Very slowly this change in my life is teaching me step by step that some of life's richest happiness comes out of chaos.  I think that possibly the only way to make it through this time is to just allow the noise to wash over me much like the water is doing now.  

My hearing loss has increased over the past few months, most likely due to the pregnancy, but I have chosen not to adjust my hearing aids yet.  I want my hormones to settle and hopefully my hearing to even out before I go in.  This time I know it will not be a small change.

This time I am confident in what I know to be true which is that:

When I watch TV alone I use the close captions.  

When I go to the movies I need to keep my hearing aids in.

When people are talking to me even in one on one quiet situations I must ask at least twice for
repeating.

That without the baby monitor volume on by my bed I do not hear my two year old crying even in the silence of the morning hours.

That items of importance are slipping through the cracks as I do not remember them even though I am told I had a conversation about said topic.

When I am carrying on a phone conversation any outside noise makes it almost impossible to hear.

If I am talking to someone and I am holding Chase while he is talking I cannot keep up with my own conversation.

I knew this was coming.  In my very first post I mentioned that having another kid would most likely change my hearing again.  And so, I am not surprised nor worried.  I will continue to adapt and adjust as necessary to this ongoing  trial.

I've decided that chaos is beautiful in the form of family and I pray for the strength and grace to embrace it with every twist and turn.  May God grant me the gift to be able to be surrounded by the noise of my life and within it find my underwater breath and peace.  

Friday, May 31, 2013

My "Fix"

Like a drug addict I stand fidgeting outside the audiologists office.  An unreasonable fear of doing too well on my hearing test begins to overwhelm me.  Irrational thoughts fill my mind like: Will she think I'm faking?  Will she send me home as if nothing is wrong?  I ponder how I would feel leaving without any type of volume increase.  Probably a bit shaky and on edge.  Belligerent also comes to mind.  I think I would be very defensive as I know that there is change happening and I feel like it needs to be acknowledged.

To put it simply I needed a "fix".

Though no track marks line my arms the need for a tune up was very powerful because I know as soon as they are turned up I hear and feel normal.

In fact, a honeymoon phase begins as soon as I leave the office after an adjustment.  One where I pretend that none of this ever happened.  It is a point of escape.  Much like alcohol or drugs allowing my rational mind to take a back seat to something I know isn't real.  Usually, this surreal period fades within a week because by that time my mind compensates and adjusts to the louder volume leaving things sounding muted once again.

I am not sure what caused this revelation.  But it is for this very reason that I have skipped my last three hearing tests.

Until today.

Now as I wait uncomfortable in my own skin I see a cloudy image of me realizing that no artificial aid is going to restore my hearing 100%.  This is the fact that I have yet to come to terms with.

And despite understanding this concept I have been unwilling to accept it.

It may just be completely unreasonable to feel as if I cannot hear well and therefore run to the doctors office seeking an increase.

True reality is that the "fix" I need doesn't exist.

I will never again have perfect hearing.  It isn't the same as a pair of glasses that restores your sight in full.  No, this is only something that makes what I had before better.

Only better.  Not perfect.  Not 100%.  Only better.

I will never again have perfect hearing.

The answer then to my heal my hidden track marks is to accept this imperfection.  I hope that is something I can do.

It surely isn't what we teach in this world.  We are always striving for perfection sometimes missing the beautiful in the imperfection for the sake of image and appearance.

Don't get me wrong there is nothing wrong with wanting to better ourselves in almost any area of our life.  The problem lies within the obsession that almost inevitably follows.  Where the quest to be the best takes hold on our life and allows for nothing else to be entertained.

Every single one of us has a track mark of some kind because this life is hard.

I believe what truly defines a person is how they choose to deal with those scars.  Do you embrace them and move forward or do you spend all of your time trying to cover them up so others do not see.

We can't wrap up our lives in a neat and tidy box.

I will never again have perfect hearing.   Scar revealed.  Box disheveled.  Imperfection reflected.  Life moving forward. 


Thursday, May 2, 2013

"Caption This"

"Caption this."

You know what I am referring to right?  It's the contest that the news stations use to engage their viewers where they take awkward pictures of any type of celebrity and ask people to come up with the most witty thing to surmise.  Admittedly I laugh and enjoy these tidbits allowing them to lighten the mood amongst stories of tragedy and plight.

Sometimes it is when a celebrity takes a photo of their own child or dog and they ask their fans to comment, once again looking for the most interesting answer.  I like these a bit less as it seems an almost self serving way to get praise or chatter on their news feed.  I do however enjoy the tiny glimpse into their normal everyday life. 

To me  "Caption this"  is now something I wish I could employ whenever necessary.  I want a "Caption this"  button like the "Easy" button from that one office store.  If I had said button, so many things in my life would be less complicated and I would have a much better sense of what was going on around me. 

You see, I feel myself started to get a bit frustrated with having to say:

I can't really hear you.
Remember, I can't hear that well.
Can you please stand still when you are talking to me?
What did she/he just say?
I can't hear the TV can you turn it up?
Can you turn it up some more?
I'm sorry but I just don't know what you are saying.

I'm sorry, I'm sorry, I'm sorry....

With my magical "Caption this" button my eight year old could continue with his dance interpretation and still carry on a conversation with his mom.  My employees would be able to wait on customers while simultaneously relay information to their boss.  Friends and family could relax and enjoy a conversation instead of missing out on tidbits that occur while they repeat previously spoken information to me.  And my husband, my dear husband could rest and watch a TV show without his wife pestering him about what was being said.

"Caption this"  may be arriving on my television screen much sooner than I expected.  At least there I have the option unlike everyday life. 

I know what you are thinking...go back to your Audiologist.  But I don't want to.  Why get another hearing test when she will once again say that it has changed only slightly and then turn up my hearing aids.  I feel just as annoying to them as I do to everyone else.  And there is something maddening about being told your hearing change is little when it affects so many areas of your life.  I think I would actually be happier leaving if they said that yes it was a significant change.  Maybe then I wouldn't feel so damn crazy sometimes. 

So after a wonderful vacation that went flawlessly, as my hearing was concerned, things started to go down hill pretty progressively.  At least to me, Chris and Carter. 

Here are just a few of the highlights.

Personally I have noticed that as soon as someone speaks immediately my brain begins to decipher what they are saying.  I can actually feel myself trying to understand what sometimes is pure garble that comes out of peoples mouths.  If I hear one or two words instantly context begins to form and a lot of assumptions on my part materialize.  Eventually I either catch up or I don't.  In the case where I do follow along I probably only really know 3/4ths of what was actually spoken.  Everything else is composed of what my mind thinks is happening.  If I simply lose the conversation completely I am left with no choice but to ask them to repeat, rephrase or begin again.  It's that or make no comment and move on.  In a group setting that works well but not so much when your son is talking to you about his day at school.

This has gotten so bad that in real life and on TV sometimes sentences start out as a foreign language to me.  Imagine if you will someone speaking in Japanese and English mixed.  This is exactly how the conversations start out.

Upon the first day of our return from vacation I was out back talking to a friend of mine and letting our two boys play on the playground.  Chris was inside and Carter was out front with a bunch of neighborhood kids.  At one point my friend said, "Oh sounds like someone got hurt."  I turned my ear towards the front of my house but didn't hear much of anything sort of shrugged my shoulders and thought if it was Carter he would come get me or Chris would bring him out.  It wasn't until I was getting Carter ready for bed that I saw his mangled leg.  Chris looked at me surprised when I asked what had happened.  "You didn't hear him screaming at the top of his lungs today?"  What do you say to that?  What can you say to that?  No, I couldn't hear my son from the front of the house to the back nor could I hear him while inside the house through open windows.   


At my job a customer had a concern about their order and while I was making food which has me standing on the other side of a counter with TV's and loud chatter in the dining room I simply did not get what they were saying.  Since there was an obvious hurdle for me I turned to the closest employee for interpretation.  After hearing them out and then once again turning to the customer I did obtain most of the needed information however by the look on her face I could tell she thought I was acting as if her issue was not important.  Unfortunately it was quite the contrary and in a customer driven business this is not the type of impression I want to leave them with. 

To ease the burdeon When I am on the job occasionally I will tell people I have trouble hearing but so far I am not comfortable using hard of hearing.  I don't really know why.

Finally, I have a very hard time deciphering where a sound is coming from.  If it is not verbal it can take me several minutes to ascertain whether it is on my right or left side, in the same room or a different one,  upstairs or downstairs.  If it is a noise I don't like or I am concerned about I must move around until I actually figure out what it is. 

I really hate it when this happens as I feel so ditsy or somehow unaware.   

"Caption this"  Oh if only it were that simple.  Where everyone's words came out in cute little font.  I know I am not the first person to wish for this nor will I be the last. 

Unfortunately there is not much I can do other than continue to turn my hearing aids up.  Although I  have begun to make a conscious effort to train myself to be more aware and rely less on my  hearing for things that are going on.  Seems like it will help me out in the long run but the retraining is quite a daunting process.
I also need to work on the re-education of my family. 

There are a few things that others can do to help.  I need to be better about educating those closest to me, Carter especially.  Because if Chris would not have been home when he fell then knowing my limitations one of his friends should have been sent to get me.   I also need people to understand that if I don't respond then I probably don't think you are talking to me because it is something I cannot hear and I have lost the ability to tell which direction sound is coming from.  Unless I can see you I do not know who you are talking too.  And finally loud talking is almost worse.  Volume alone is not the problem with my hearing it is pitch and tone that are affected more and along with it inflection.  So as some mistakenly talk louder I really just need it said in a different way or slower. 

I even wish I had a "Caption this" button for myself. 

Mine would read:  Hard of hearing and trying to adjust!

We all have something we are working on or struggling with.  What would your "Caption this"  button say?


 

Tuesday, April 30, 2013

Vacation Variables Part 2 - Victory!

So it turns out I don't think I did half bad! 

Concern one, of not being able to hear those behind me, ended up being a moot point as my pregnant belly and I were always bringing up the rear.

Concern two, of having trouble at the water park, was also rendered unnecessary as I spent most of my time doing the things that pregnant people can do at a water park which was hang out with Chase at the kid area.  Not much talking involved there! 

Concern three, of the plane ride to and from Florida, actually did not affect how my ears felt in any way. 

The only time I had an "oops" moment with my hearing aids was at Magic Kingdom when I took Chase under the Spitting Camels to cool off.  I was so caught up in getting him in the water I did not think about myself getting hit by some.  As soon as the cool liquid hit my hair though realization clicked and I immediately took them out and put them in the stroller. 

I feel truly blessed and grateful that in the setting of vacation all seemed well.

Sunday, April 14, 2013

Vacation Variables

As promised, today I woke renewed and excited for our upcoming vacation to Florida!  I needed yesterday though and even putting my hearing issues aside I know most pregnant women would agree that hormones can be a tricky thing.  Thank you for allowing me to vent in a safe place!

So, Vacation!  While in Florida we are going to Disney, the beach and a water park.  Carter is thrilled about it all, Chase has no clue we are even leaving - ha! 

I have been dutifully packing over the last week hoping that if anything is forgotten it is something that either won't be missed or can be easily replaced.  Since the hearing loss started and my memory has gotten worse I have made several lists to ensure travel success, or at least I think I have.  Ha again!
Realizing my limitations has never been my strong suit.  But after reading the most recent book on hearing loss I know that somehow it is what has to occur.  To do that I must admit to myself that there could be issues and I need to have practical answers on how I will deal with them. 

Here are what I am calling my Vacation Variables.  I will handle them as best I can and with all of the grace I can muster! 

1.  With the size of the crowds at the theme parks, will I be able to hear any of my entourage if they are positioned behind me?  I plan on making it clear to everyone that if I don't respond then I did not hear and probably need to be patted or tapped on the shoulder.

2.  At the water park without my hearing aids and the water/people noise will I be able to hear much of any speaking?  I will have to lean in close, especially to Carter and watch their lips carefully.  Most likely I will repeat everything back to confirm.

3.  How will the flight affect my ears?  This one I plan on taking Tylenol as we near our descent.  Most of the time this helps however they have been known to ring pretty loudly rendering me even a bit more hard of hearing until morning.  I've decided to pray that one off! 

This is the new me. 

Correction, this is the seven month old new me.  Hard to believe that it has been that long. 

When planning this vacation I honestly didn't give my hearing any thought.  However I did consider my pregnancy to great lengths when choosing a location and I had only been pregnant a few weeks.  I'm shrugging my shoulders as I write I think because worrying about a baby is still so much easier than worrying about myself. 

Recently someone asked me why we chose Disney and my gut response was 100% for the kids!  It is a vacation where they are never bored.  And personally I love that you never have to plan out your day beyond heading to the parks. 

Practically we also made this choice because we have been there many times and know exactly what to expect,it is within the United States, the beach is in driving distance and it's the most magical place of all! 
I know at 19 weeks that it will be tiring for me but I believe that adrenaline and excitement will keep this mama plugging along.  Carter just came to me yesterday and said how excited he was...that's motivation enough for me! 





I'm not comfortable as "this" me but sometimes it is necessary so that I may journey on.

This week has been one of "those" five days, you know the ones I mean, the type you would like to forget.  Some people might deal with it by yelling out "Margarita time!" and head out to the beach.  Others want to open up a nice aged bottle of wine while sitting peacefully in their home.   Some head straight to the nearest bar and order up their favorite draft beer.  All three of those options sound good to me, if I wasn't pregnant.  :)  Instead, after putting Chase to bed I have a good cry.  An emotional, pregnant hormone filled sob fest that I am not proud but feels so good.

If my life was a cartoon you would have seen the sane part of me in ghost form as she stood shaking her head and wagging her finger disgusted by my total lack of control. The irrational ghost side would simply be sitting and laughing uncontrollably.  At the sound of both of them I would have wiped my tears away and then knocked them both out with my silly rubber hammer.  Unfortunately that only works on TV.

So what was so crazy about this past week?  Tons of stuff that was completely unimportant and not worth my time.  You see, problems at work yeah they are annoying but in the grand scheme of life they don't mean anything.  Pressure of owning our own business is great but all of it, no matter how stressful and complicated doesn't even begin to compare with that which was my mishap with Carter. 

And so, here it is:

Earlier this week, on my day off I was working around the house and playing with Chase when the phone rang.  I answered not knowing the number but grateful it was local, a safe bet not to be some sort of solicitation. 

"Tara?"

"Yes?"  I do not recognize the voice.

"Hi this is wha wha my son wha wha would like to invite Carter for a sleepover this Friday, we live just down the street." 

Immediately because I can not understand her name or the child's my brain begins running though a list of the boys Carter talks about from school who live in the neighborhood.  Unfortunately no one comes to mind that matches what I thought was said.

"I'm sorry I have trouble hearing, did you say Derrick?"  I felt like a complete boob.  I sounded like I was crazy I mean who can't hear with the phone up to your ear? 

Oh yeah, me. 

"Yes, wha wha wanted to ask Carter over, even though it is late notice would he like to come?"  Her voice gave way that she was a bit concerned and just might be regretting the call.

I might have obsessed more about the uncertainty in her tone except I was really too busy trying with all of my might to place this person in some kind of context.  Who was Derrick?  Did I know a Derrick in his class that lives in this area? 

And then it hits me,  Merrick.  Merrick has been in Carter's class since Kindergarten and lives in the neighborhood.  A feeling of relief floods through me. 

"Well sure, I will definitely talk to Carter about it this afternoon and let you know."   Cringing I added quickly, "What was your name again?" 

I know it added nothing to my credibility but I needed to know this persons name if my son was going to stay the night at her house!

"Amy." 

Thank the Lord.

"Great Amy I will get back to you."

"OK, and you can just text me."

Ha.  

Brilliant.

Later that day I ask Carter about the call and if Merrick said anything during class.  He shrugs his shoulders replying quickly no but emphatically yes that he would indeed go on the play date.  I text our acceptance and then let it go. 

Flash forward to today.  Friday.  Play date day.  I am armed with their address as we head out the door.  Carter is pumped about connecting his tablet with Merrick's and I am happy he is excited.  As we near the house Carter starts waving to another friend that is playing outside.

"Hey mom that's my friend from the bus!"

"Oh cool!"  I reply distracted.  "Can you help me look for the house number?"

"Sure mom but I think you just passed it."   He exclaims with his finger pointing out the window.

"Really?"  I craned my neck backwards to confirm his deduction.

"Yeah, the one right there where Jared is playing outside with his brothers."

I slammed on the breaks.  You see, it was at that moment I knew.

JARED!

Not Derrick.

Not Merrick.

Jared.

I look at my 8 year old through the rear view mirror and I am mortified.  Is this really happening?  Did I screw this up? 

"Do you really know Jared?"  I ask still unsure of what my mind was confirming now made the most sense.

"Yeah, I sit by him on the bus a lot and he is in my class."  Carter's head bobs up and down for emphasis.

I am so very embarrassed to have to open my mouth again.  I wish there was another way to make this appear not to be a mix up but there really was not anything to be said but the truth.

"Mommy made a mistake sweetheart,  I thought the play date was with Merrick but it must be with Jared.  Is that OK?"  My eyes are glued on him hoping that this is not going to be a huge deal.

"Yeah." he responded timidly.

I shake my head in frustration and turn the car around.  Carter is the type of boy who plans, plots and sets up expectations in his mind.  I know at this moment he is desperately trying to rework the image he had held just seconds before. I am unsure whether or not it is working.

As I pull into the driveway of what is most definitely the address that waso on the text to me AND Jared's house I get out and open the door for Carter. 

"Are you sure you are OK with this?"  I look down into the bright blue eyes of my first born son.

"Yes mom."  And this time he sounds like himself. 

I sigh as I walk up to meet his dad because I still feel so out of sorts and disappointed in myself.  How could I have messed this up so badly?


Now, hours later as the baby sleeps and I am alone it really starts to bother me.  I'm angry because I made my son uncomfortable and I was completely confused about such a simple situation.  I want to scream in frustration from the failure and the fear as they mix in my mind causing me to re-think everything that was.  What will it be next?  What will I miss, what won't I hear?  What detail might slip by me that results in my life changing forever? 

I just finished a good book by Katherine Bouton called Shouting Won't Help.  She writes about her own journey through hearing loss.  It has a lot of informational points for someone who wants to learn more about technically, physically and mentally what happens as our hearing deteriorates.  I learned a lot.  Specifically about how acceptance and greif come and go just as easily as the wind. 

I'd say today I found myself in the valley of this.  In fact I'm still sitting there wallowing in the pit of what is sure to only get worse.  I'm not comfortable as "this" me.  I am the strong one who pushes through, gets by and moves forward in spite of life. 

But not for tonight, instead I will go against everything that feels normal and allow myself a moment to be sad.  

Because I know that tomorrow I will wake up renewed ready once again to journey on. 

Friday, April 5, 2013

Hearing Loss and Pregnancy

Today as I write I think about my life just two short years ago.  I was a full time working business owner and single mother with a husband at war and an undetected change going on with my hearing. 

But the noise of my life hid the silence in my ears. 

The noise of my life hid the silence in my ears. 

Hard to imagine but reality all the same.  I remember coming home after work haggard, lonely and burnt out.  I would sit on my couch after feeding and caring for my seven year old wondering how in the world I would have enough energy for the baby that was growing inside of me.  I would worry about my husband and his safety daily never letting on to anyone that fear hovered ever so neatly at the top of my mind threatening at every turn to topple over and come flooding out.  At some point I would receive a call regarding our business and they would need my problem solving skills and then that was all there was.

It was impossible for me to worry about myself.  I was the last thing on a long list of priorities. 

Here is what I know, facts that I can look back and record.

My hearing loss started at some point while I was pregnant with Chase.
I do not remember the exact time frame in the pregnancy that it began to change.
I feel like it had to have been gradual or I would have noticed it more quickly.

So now that I have revealed that I am once again carrying our third child I thought it time to talk about the elephant in the room....hearing loss and pregnancy.

There is a lot of speculation on this topic.  So much information and so many different points of view.  But by in large, the most common occurrence of hearing loss while pregnant is sensorineural hearing loss.  In an earlier post I defined what this specifically means.  I am going to repost that definition here.


Sensorineural hearing loss (SNHL) is a type of hearing loss in which the root cause lies in the vestibulocochlear nerve (Cranial nerve VIII), the inner ear, or central processing centers of the brain.

When hearing loss is caused by problems within the inner ear, it is called sensorineural loss. The problem may be with the cochlea (sensory) or with the hearing nerve (neural). It's also sometimes incorrectly referred to as “nerve deafness.”  Sensorineural hearing loss is the most common type of hearing loss. If you feel like you can hear fairly well, but have trouble understanding what people are saying, there is a good chance you are experiencing this type of hearing loss.


There are several cases of SNHL during pregnancy HOWEVER these usually resolve shortly after the mother gives birth.  Most of the research credits pregnancy hormones and pressure on the inner ear as the culprit.  

As all of you know for me, the change was permanent.

Up until a week ago I feel like I had a very positive outlook on the issue but then my hearing changed again.

It is interesting to note that I felt the loss in my brain before I heard it in my ears.  I don't know how many of you understand how draining hearing loss can be on your mind but because it is a major sense, as it drops off the rest of your body attempts to compensate for the void.

For example, immediately I will find myself thinking harder about what people say.  There are two methods I employ when attempting to understand what I cannot hear.  #1 - I will start to play the context game that they teach you in grade school when you are learning to read.  I begin to think about where I am, what I am doing, what the conversation is about and what makes the most logical fit in the blank that is what I do not hear.  #2 - If I cannot piece it together by that then I begin to study their mouth intently reading their lips as to gain inference and reference which will hopefully lead me on the path of rejoining the conversation for real.  I say for "real" because quite often I will continue talking to someone but have no clue about what is truly being said. 

After context and lip reading I then lean in to the person and ask them to repeat.  Oddly enough I limit my asking though.  Somewhere in my mind I find myself an annoyance and so I will count how many times that I must have someone say the same thing twice and stop after I feel it is too many.

My stomach is affected because not being able to properly follow the flow of a conversation is stressful.  Instead of enjoying what is being talked about I am straining and struggling which in turn stresses me out and I will begin to get fatigued. 

I am assured by my hearing specialist this is all a normal response to my type of loss. 

And so with my brain I hear the loss. 

Deciding to return to the Dr. for a hearing test was an easy decision.  It's free where I bought my hearing aids so why not? 

Sitting in the tiny box once again, I realize that this is now familiar.   No longer am I filled with anxiety as I wait, instead more of a routine feeling consumes my thoughts.  As the series of beeps and tones begins to vibrate through my ears and I realize that it is crystal clear to me when I cannot hear a something because she repeats the last sound I beeped on twice.  Yes, my mind would answer her thoughts, that was the last sound before the drop.  Then she begins to read and I can't see her lips.  They are two syllable words that I am to repeat back to her.  She reads around six I think I get about two.  I realize then just how much I have been reading lips over the last few weeks.

After the testing is complete she walks me into the Dr. who begins to adjust my aids to my current hearing.  She mentions that I do have some more loss and most specifically in the volume that I hear at.  It was at that moment that I tell her I am pregnant and that I knew there was no direct relation proven about hearing loss and pregnancy.  Her reply surprised me, "Yes there has been.  We will need to monitor you more closely.  Come in whenever you think there has been a change."  Her tone so offhanded and matter of fact struck me more than the words that she spoke.  You see what was more monumental than the change she was speaking of was that there was nothing I could do to stop it. 

I am at the mercy of this journey. 

With every ounce of my body I want this baby, this 3rd miracle in my life.  Whatever it brings will be well worth it.  I don't know where I will end up at the end of it with regard to sound but no matter what I will push through.

I thank everyone who has daily patience with me as I walk the path of unknown and uncertainty.  It is what it will be, this hearing loss and pregnancy. 













Sunday, March 10, 2013

We unknowingly adapt

As a writer you imagine your environment within the context of a story or picture placed in your mind without your knowledge.  For me I always saw a sort of tortured desk bare of drawers, shelves or computers.  A worn out white washed writer's desk with a vase of flowers, a couple of my favorite well worn books stacked in the corner (usually collecting some dust), and a journal/pen combo placed neatly in the center.  My beverage of choice sits off to the right of the notebook captured in the silhouette of the window giving bloom to green grass, bright sun and sounds of laughter in the air.  The chair is a wooden swivel style possibly pear green with a floral cushion. 

I am calm there and without any pressure the words flow from me without control or reason but somehow they are brilliant.  It is important to note that this image has been in my head since I was a young girl.  Probably I saw it on a movie at some point or read about it in a book. 

Many of years has been spent procrastinating as I try and find my place in the house.  Paint has been spilled, rooms re-decorated and heavy objects moved all for the sake of my outlet.  Despite all of this, I have done some of my best writing outside on a laptop or while taking a walk and verbally recording my words.  It still never stops my search for that one special area that is all mine to cherish.  The place where my kids can look at and say, "Mommy writes there." 

This week I found my "desk" in the shape of something I never imagined.  A lap top, my kitchen bar-stool and my ear buds.   

Admittedly the kitchen has always been my most sacred room in the house.  I love the silver, black and greys as they bounce off the warm mustard orange walls.  I love that family happens here around food, amongst the dishes and through the basic need to be cared for.  Carter's grade cards proudly hanging on the fridge, Chase's learning magnets scattered along the bottom door and a new addition to the eclectic group a new 10 week sonogram picture.

Oh my goodness all of that just to say I'm pregnant again?!!!

No, rather to say that life changes at a rapid pace.  Faster than I think we really know and in the wake of the challenges and surprises we unknowingly adapt.  I found this writing place in the central area of the house, the hub of everything that happens and amidst what looks like chaos to everyone else I have calm.  Our third baby is on the way and I feel a peace like never before.

Chris and I always wanted and saw our life with three children until the infertility problems began.  After seven years of not getting pregnant we unknowingly altered our family picture to a desperate plea for just one.  With the arrival of Carter and the blessing of motherhood I still felt the ache to add to our family but once again after seven years of trying everything but IVF and even beginning the adoption process God gave us Chase.  The love I feel for these boys is tremendous.  Fourteen years is a long time to work at something and as with long trials, the reward seems that much sweeter.

I knew one thing after having Chase, if we were going to have another child I did not want to wait another seven years.  It was more of an age thing for Chris and I than anything else.  So, knowing our history I pretty much put the idea to rest.

Two years later to the day I fell pregnant with baby number three.  Amazing. 

Truly at 21 when I was newly married I never would have imagined the age split like this.  I always wanted to have my children young but looking back I see how this fits me better.  This is the family I was always meant to have.

Just like this stool and Chris' laptop were meant to be my sacred writing place at this time in my life.

I still picture that same desk, I can even see it with my eyes closed.  My pursuance of this space will probably never end but by the time it makes sense in my life the chances are I won't have the need.  Yet right now in its absence it fills a necessary space because it fuels my dreams and creativity.

In future posts I am going to talk about pregnancy with regards to my hearing but for today I just wanted it to be about the new baby!

Friday, February 22, 2013

Authenticity - My New Year's Outlook

New Year New Outlook

In regular January fashion I sit in my living room surrounded by a blissful silence and think about my New Year's Resolutions.  The kitchen is a mess, toys are scattered all across the floor and a dog barks incessantly outside but I can still find my window of peace.  It only takes a few things to bring me to that calm.  My headphones playing some of my favorite music, a comfy seat in my living room, an open window to view the outside and something to read or write.  I think it is a woman's skill, necessary so we can refuel when needed without concern for every chore that is being ignored.  I thank God for it because it has certainly saved my sanity more than once. 

With the husband at work, my oldest at school and the baby resting in his crib there is no better moment to do some introspective study.  I pondered what my resolutions might look like this year, lose weight, eat better, save money, etc.   Frustrated by the thinness of those desires I began to look around the room.  The style, colors and decor were all my taste and a look into who I truly was.  From the black and white picture collage on the wall to the family oriented pictures on the mantel I was surrounded by things that I loved.  And in that something of value started to appear, the word AUTHENTIC. 

I love that word, it holds such promise and seems so full of life.  To live authentically in my mind is a true version of freedom. 

Recently I watched a clip on Ted.com by Brene Brown called The power of vulnerability.  

She conducted a study on connection and really dives into what makes people feel worthy of true relationships with other people.  And instead of focusing on those that did not feel worthy of connection she turned to those that did thereby focusing on what was working right and not wrong.   I loved her positive, reverse approach to the human need of being attached.  Everyone looks at why things fail but only a few choose to focus on how things succeed.

What she uncovered about each person that felt they were were worthy of a true connection was that they all had courage to live an imperfect life. 

They all had the courage to live and IMPERFECT life.

A couple of quotes from the talk were:

"They had connections as a result of authenticity.  They were willing to let go of who they thought they should be to be who they were."  Brene Brown

"They believe that what made them vulnerable made them beautiful."  Brene Brown

I've been working through this very thought for many years but more intently since I found out that my hearing was changing.  It is a unique thing to learn something about yourself that immediately causes you to be categorized or labeled.  I didn't choose it no, it chose me and I willingly submit to all that it means to be considered deaf. 

I thought about listing my imperfections, outside of not being able to hear very well, but I came to the realization that those of you that know me already see them and it is only in my heart that I need to acknowledge what they are. 

My imperfections make me who I am and each one is an opportunity to grow and turn towards a more authentic living.  

I hear the sound of my one year old stirring through the baby monitor and I know my time for introspect is over, I wouldn't have it any other way.  I am grateful as I rise out of my writing place and glance around, no chores were completed, no office work was done but my tank was refueled and I feel energized. 

It's a good day.




Sunday, January 13, 2013

Small change....not a big deal?!

I'm sorry I never posted after my last hearing test.  It wasn't great news but more importantly Christmas overshadowed any normalcy that my life might have had.  And that's not saying much since  I already feel that I run around like a chicken with her head cut off only doing everything half-assed.  My prayer throughout the season most of the time came in the form of a scatter brained plea as I was behind the wheel of the car driving, "Dear God don't let me forget anything!"

I love Christmas but being a working mother to two really makes it a challenging time of year.  All of the expectations we place on ourselves to manage it all with one hand tied behind our back weigh me down.  This year I decided that simple was better and less was more.  I did what I could and what could not be accomplished was let go without guilt.  I wanted to enjoy the time more instead of letting the stress suck me in. 

Christmas day was wonderful.  Filled with laughter and family, food and naps, and excited unwrapping and game playing.  Despite my worry I did not forget a thing!

Back to my appointment, there was some change in my hearing though the audiologist and hearing aid specialist acted unconcerned about it.  I couldn't help but thinking, "Yeah its no big deal to you."  I know that attitude sucked but it was how I felt at the time.  I mean to tell me that there was a small change nothing to worry about but to then up my hearing aids another notch and create a TV watching mode for me doesn't feel like nothing to me.  It feels like a whole big load of something.

In 11 days I have my appointment with the specialist where three months time will have passed and a test on the same equipment will be preformed.  This should be a more accurate read.  I am hopeful that there will be no further change.